Autistic Wisdom

Great Entertainment, Poor Reality

2012-01-26T07:41:00.000-08:00

The new drama Touch starring Kiefer Sutherland is about a boy who, although autistic, has the ability to manipulate numbers, see patterns, and appears to be able to predict the future.

This makes for great entertainment but exacerbates the stereotypes of autism and autism reality. At least the boy is non-verbal - this is a rarity in depiction of autism although it will be interesting to see how they get him to communicate.

When we first found out A has autism, we ourselves thought this meant she would have an extraordinary gift in some area. This is called savantism, and it is actually very rare.

Jacob, the protagonist, is actually a prodigious savant. The different between regular savants and prodigious savants is that prodigious savants have a skill that would be considered unusually amazing even in a person without developmental disability. This condition is even rarer (in the above article, 50 people in the whole world).

Good entertainment, but bad for educating others about autism reality. I don't suppose people really want to watch Fly Away anyway. Too bad - that is much closer to reality.

Much Ado About the DSM-5

2012-01-26T03:53:00.000-08:00

There has been much discussion lately, both in the blog-sphere and in some on-line news feeds about the upcoming changes to the Diagnostic and Statistical Manual Revision 5 (DSM5). This guide, produced by the American Psychological Association, is used to diagnose disorders that are primarily behavioural, or that have no known cause with specific diagnostic tests. There is no known blood test for depression, for example - you have it if you exhibit certain behaviours in a specific way.

Autism is defined in the DSM5, and the definition is changing. Currently, Autism Spectrum Disorder refers to any one of three conditions: "classic" autism, PDD-NOS, and Asperger's Syndrome. A good definition of autism and PDD-NOS is here and it gives good examples for the uninitiated.

With Asperger's Syndrome, cognitive and language development, as well as daily living skills, are unimpaired. With Asperger's Syndrome, the primary deficit is language as it is used for social purposes. This includes social spoken language and non-verbal cues. Asperger's Syndrome also includes repetitive behaviours but these tend more toward intensive interests or routines with no function rather than stereotypies (it is more likely you will see a child obsessed with dinosaurs and needs to go home a certain way over hand flapping, for example).

This triad of disorders is well established and most autism services are based on these diagnoses. The DSM5 purports to eliminate these three disorders and replace it with a single diagnosis: Autism Spectrum Disorder.

This new label has many concerned because it may cause several people who presently have autism to fall off the spectrum into a new diagnostic category. This isn't a bad thing in itself, except that once identified with a condition, it is difficult to let that go when nothing has changed except the DSM manual. Further, and more importantly, legislation is notoriously slow in catching up with realities and services will be denied to people who previously would be eligible.

Concern has come in the media not surprisingly from people concerned with the higher functioning end of the spectrum (Asperger's and PDD-NOS). These individuals may revert to Social Communication Disorder if they lack many repetitive behaviours, whereas before it would have been autism.

Concern has also come from the more silent side of the spectrum, people who have autistic disorder but also intellectual disability, which comprises a sizable portion of the people with full blown autism. Because of the phrase that ASD "cannot be accounted for by general developmental delays", there is concern people with autistic disorder will revert to Intellectual Development Disorder.

The authors of the DSM-5 believe these changes will enhance the specificity of the diagnosis. I don't disagree, but concern is primarily around (a) identification with a disorder and (b) services associated with a disorder.

One might think the easiest way to solve this problem is just to extend current autism services to those now qualifying for social communication disorder (SCD) or intellectual development disorder (IDD). The problem with this, of course, is that by re-classifying autism and spreading existing ASD over these broader categories is that there will be many people with SCD and IDD who were never diagnosed with autism and legislators will be loath to increase costs by increasing services for now what is a much larger group of people. SCD is a new diagnosis and appears to be designed to catch people who fall out of ASD so at least they have "some label".

This will put enormous pressure on clinicians to give an ASD diagnosis when SCD or IDD is warranted, especially when an ASD diagnosis was indicated on the DSM-IV. In short, the muddy waters will be worse than before.

Personally I feel the better approach would have been to combine autistic disorder with PDD-NOS as "Autism" and leave Asperger's Syndrome alone, combining the two under "Autism Spectrum Disorder". It is grossly unfair to millions of people who presently have autism to be re-classified as IDD alone. Similarly, I sympathesize with people who have supports with Asperger's Syndrome but now do not with SCD.

I think A will remain diagnostically ASD, but now that language impairment is removed from the autism criteria as well, she would have co-morbid Language Impairment as defined by the DSM-5.

Watch for a little chaos in 2013.

What is your life worth?

2012-01-16T14:06:00.000-08:00

I am generally not a fan of re-printing material verbatim from other locations on the web, or re-hashing a discussion to which I may simply give a link. But in this case, I will make an exception because it is so important it deserves an exception.

Amelia is a little girl with Wolf-Hirsch-horn syndrome. You can read her story here.

The short version of her story is that she needs a kidney transplant, and this surgery is potentially dangerous due to potential brain damage. The problem is that the attending physician does not believe Amelia should have the surgery because she is "mentally retarded". I am not sure of all of the governmental rules of organ donation in the United States but it appears your IQ and adaptive functioning are enough to condemn you to death if you need a new organ.

Keep in mind that by definition 2% of the population is "mentally retarded" because this diagnosis is based on cognitive ability combined with adaptive behaviour (ability to communicate, socialize, and take care of one's self) relative to the rest of the population. By definition, 2% of the population is always mentally retarded. We can get collectively smarter or better at being independent, or collectively less smart and less independent, and 2% of us will still be "mentally retarded". In other words, this diagnosis is not criterion based (if can't do X, then they are "mentally retarded")!

The doctor's response was bad enough, but the social worker's response was even more appalling. She was in the family interview to try to convince the family to give up, because hey, Amelia won't go far in life anyway, and when she needs yet another kidney in 10 years, Amelia's parents may not even be around to take care of her.

Really? That's the value we put on a life? What a slippery slope we have started. Mentally retarded today, perhaps tomorrow the elderly, or the low class factory worker. In fact, why not simply ration all health care based on our usefulness to society and our potential measure of quality of life? It's well known in Canada, for example, that people aged 65 years or higher cost double the annual health bill of people under 65, and people 75 and older double the 65-year old people. Easy way to save money - if you are 65 or older, pay your own way or suffer because hey, you might need more surgery later and what are you going to do with your life anyway? You're 65!

If anyone spouted off this nonsense they would be laughed off or lynched with extreme prejudice. But apparently my logic does not apply to "mentally retarded" people at the Children's Hospital of Philadelphia.

New beginnings

2012-01-11T17:10:00.000-08:00

“Every day is a new beginning. Treat it that way. Stay away from what might have been, and look at what can be.”

"Today's decisions are tomorrow's realities."
- Marsha Petri Sue

As we enter 2012, I am trying to keep Marsha's words in mind. Our long-time senior therapist has resigned to pursue a career at the local regional provider and we are adjusting to the change.

One of the traps I am trying to avoid is "have we done enough?" Years from now, like many parents, I will look back and ask if we did enough intervention with A to try to ameliorate her autism. The harder we work now, the easier later will become.

Parents of a newly diagnosed child desperately seek a way to help their child "recover" from autism, a loaded phrase, but essentially a phrase meaning their child achieves average functioning in most areas. The success of many children is still a minority - very few children meet this milestone. I am learning to focus less on recovery as a goal and instead look at how far we have come, and how far A has come relative to most others with autism.

Perhaps my biggest disappointment is A's inability to develop functional spoken language, despite trying everything. She has some words, but her articulation is very unclear. She is able to communicate well with her iPad and for this I am very thankful, but it is still not the same. In fact, I have had people comment that if not for the iPad they might have trouble detecting her autism as easily.

Looking back, I have to be content that we did everything "right", and the present reality is best outcome for us...

She was diagnosed at 22 months
ABA began at 22 months
Funded EIBI began at 30 months
Tried PROMPT, intensive speech therapy for hours

So as we begin a new year, I'm trying to look forward with this in mind - thinking about what might have been is useless. We have to look to the future and measure A's future progress against her present ability instead of grasping at recovery.

Sometimes Exclusion Is the Most Inclusive Policy

2011-11-21T20:40:00.000-08:00

The future that we hold in trust for our own children will be shaped by our fairness to other people's children.
- Marian Wright Edelman

As we get closer to Alanna's inevitable transition from IBI into the school system (a transition I anticipate with much dread), I am forced to contemplate the whole idea of inclusion and what it really means.

Most educators seem to press for "inclusion" - that is, for a child with special needs to be part of a regular classroom with their peers, with support, if necessary. Our local school board (similar to American school districts) even has this as a policy statement:

The Thames Valley District School Board believes most exceptional children should have their needs met, using a variety of strategies, techniques and resource support in regular classes in their home school.

I don't grasp this philosophy at all. Placement should be dictated by the needs of the student. For children with autism, it should be based on the child's ability to tolerate a regular classroom, how self-directed they are, their adaptive behaviour level, and most important, their ability to do grade level work or benefit from social interaction with children close to their own age.

Some educators will simply say that grade level can have modified expectations and then a child can remain in a regular class. Some modifications might be appropriate, but not many. Take for example a class of grade one students who are learning about addition. If a child is in that class and does not understand how to count and the meaning of "more", "less", or "fewer", the whole concept of "modification" becomes meaningless. You can't teach addition without a basic mathematical foundation, and if you can't count, you'll find addition pretty hard.

Is the modification to teach the student to count while the rest of the class is learning how to add? If so, who is teaching the student how to count? If that is an EA, then why even bother have the student in the class if they are being taught different curriculum? Worse, if the teacher is expected to do this themselves, what is the child doing when the teacher is working with the majority of the class? The child is likely to become bored because the work is too hard and then we might see behaviours occurring.

On the social level, I can see great benefit from a child with autism being with typical peers, but only if they are "close enough" socially to benefit. A six year old child who still can't play co-operatively is going to struggle... the typical children will play in a much more complex manner and probably use language that is too difficult for a child at this developmental level to follow or reciprocate.

This all seems like common sense to me. If a child is doing something different than the rest of the class then why bother put them in a regular class? Withdraw them to a proper segregated class with a very small teacher to student ratio where they can get individualized instruction with "inclusion" where appropriate (recess, gym, other activities where skill levels are appropriate). This will benefit the children in the mainstream class as well - they do not have to "slow down" for the special needs child, or have to tolerate behaviour that is being generated by frustration on the part of that child trying to learn.

The irony is that inclusion is a smokescreen for "ways to save money". It is cheaper to put a child in a regular class with as minimal EA support as the school can get away with versus a fully staffed special education class.

Sometimes exclusion is the fair and right thing for everyone. Pretending "inclusion" is fair for every child is nonsense.

Parental Social Isolation in Autism

2011-11-10T17:18:00.000-08:00

I'm going to go out on a limb here and post about something my wife and I talk about often but find difficult to share without offending others. In any life circumstance it is easy to feel like people around you don't "get" it. I suspect this is true of many situations... I can comfort someone dealing with cancer, but if I've never had cancer, or the specific type of cancer, or the specific unique circumstances of a person with a specific type of cancer, I may not "get" it.

Disclaimer: Some readers may find this post a big negative whine-fest... and it pretty much is. Sorry, you've been warned.

It is very easy as a parent to become socially isolated when you have a child on the spectrum. Mostly it has to do with people not really understanding your daily life. They may trivialize something or try to compare their own experiences with typically developing children in an effort to relate. In short, they don't "get" it, and trying to explain "it" becomes very difficult. So here is an effort to explain and see if it works. It may not. Another parent with a different experience may think I don't get it either. But I'll try anyway.

Explanation #1: Social outings are harder for us to manage - make the extra effort to make it easier for us and we will love you forever.

Everyone is busy. To be social one must be intentional. This is difficult with young children and even harder with a child on the spectrum. Here's why:

We're tired. Alanna doesn't sleep normally; she is often up for hours at a time. It is not an easy problem to solve... think I can give her Benadryl? Tried that, it made her hyper. This is a long story - if you have kids, think back to when you had a newborn. Now pretend that the period of not sleeping through the night lasts 8 years or longer and not 8 months. There you go, now you get it.
Alanna doesn't really play with toys for long without prompting. That means we can't just go into a room with toys and sit and chat with other parents. We have to be intentional about planning activities she will engage in or be prepared to engage her ourselves. My typically developing two year old can play with a single toy for 20 minutes. Alanna will lose interest in less than a minute unless the toy gives her sensory reinforcement. Sorry, can't just sit and talk to you!
Alanna likes other children but to engage the child in question has to be super persistent, and even then, it's not always a sure thing. Plus she can't talk and is only learning how to use her iPad. Three year olds can't understand a sentence strip with PECS on it. Sorry, I can't leave her with kids her own age and let them play!

Explanation #2: We really are doing the best to make her as independent as possible.

Since so little is known about what causes autism, everyone has an opinion. There are many "treatments" but very little evidence. Do not assume what you saw on a talk show last night has any basis in reality unless you see the research in peer-reviewed respectable journals.
There is no known treatment that is guarantee to help every child. It does not exist. There is no silver bullet to cure autism. In other words, trying shiny-new-treatment X will probably not cure Alanna. It may help, but you are probably not an expert by reading an article, so don't pretend you are. You just make us feel bad because the insinuation is that we are not doing enough.
Focus on the positive - recognize what Alanna can do and build on that. We are too busy focusing on what she can't do and don't need any reminders.

Explanation #3: Even the best intentioned family and friends can become overwhelmed quickly.

Even though Alanna is just turning four, she is becoming too much for most friends and family to care for because she needs a lot of attention. A weekend away means paying a respite worker, and that is likely to become more common as Alanna gets older.
Very few people we know actually want to spend time with Alanna just to be with her. Some do for our sake, some do because we pay them to. It is hard to get excited spending time with a girl who doesn't talk to you and who may not reinforce you by interacting in the way you'd like. I get that, it's hard for us and we are her parents. It's not that people don't want to spend time with her, they just don't know what to do with her when they spend time with her. That is just reality.
We try to be sympathetic when others express frustration with their kids but honestly, it's tough. We are sorry your child has wet their pants all day long, but in two weeks your child was toilet trained... at two years old. Alanna is almost four years old and we have taken her every 30 minutes to toilet for over two months. She is almost there but has accidents almost daily. Almost everything is harder for her to learn than a typical child.

Explanation #4: The future is scary.

We are often asked about how Alanna will "turn out". We don't know. We don't know if she will be able to talk beyond a few words or not. We don't know how independently she will be able to live.
Based on her trajectory and based on research about outcomes, it's likely Alanna will be at least financially dependent on us for most of her life.
Being unrealistic about her future is challenging for us - it reminds us how unlikely that future is. Yes, she may get married and have children but probably not, so it is better you don't bring up that topic.
We are scared of what will happen to Alanna when we are gone and even more scared of any burden placed on her younger brother. Yet, there is no way to escape this reality, so we have to plan for it. It is prudent, not silly.

Explanation #5: Autism and Asperger's Syndrome are the not the same thing and autism is not a mild disorder... and other myths I've heard.

Children do not grow out of autism. They become adults with autism with the ability to cope with the world to varying degrees. Temple Grandin is an example of someone who is very successful at coping.
Most people with autism are not savants and do not have some amazing skill they are good at.
Autism is not just a social disorder. People with autism are not just socially awkward or different. You are describing mild Asperger's Syndrome.
Autism does not imply intellectual disability. There is a high correlation but it is very difficult to measure intelligence in individuals with autism.
People with autism have disordered senses and this is often an explanation of behaviour. They do not necessarily experience the world the same as you or I.

Rebuttal: The Autistic "Advantage"

2011-11-07T07:01:00.000-08:00

At first glance, it is hard to see anything wrong with the Globe and Mail's recent article on autism featuring Dr. Laurent Mottron and his colleague, Michelle Dawson.

It is easy to read this article and celebrate it as proof saying, "see, autistic people are intelligent and we are not measuring them properly." There are some very good points in this article, but there are also some very incorrect arguments.

First, Dawson and Mottron use the word "autistic" to really describe people with Asperger's Syndrome. Even people like Temple Grandin, who are considered diagnostically "high functioning autism" are really people with Asperger's Syndrome. The media paints autism as Asperger's Syndrome and the two are not the same thing. They have related symptoms, but the main point is that people with Asperger's Syndrome can communicate effectively and have no cognitive impairment.

I am not saying this to trivialize the difficulties people with Asperger's Syndrome have - they can communicate effectively but have difficulty with social communication. This is a very different problem than someone with autistic disorder who is essentially non-verbal and possesses cognitive impairment.

So when you read "typical autistics" in the above article, you really should read, "typical people with Asperger's Syndrome". I say this because typical people with autism do not have the same skill in communication that Michelle Dawson does.

Now, let's move on to intelligence. The article says that intelligence is mismeasured in people with autism because of the nature of the test. First off, I have always believe IQ tests measure ability based on the tasks on the test - that is, a test score represents someone's ability to perform the tasks given on the IQ test. It is not a measure of true intelligence, because if it were, all IQ tests would correlate 100% - but they don't. A person could get an IQ of 69 on one test and 86 on another. On the first test they are cognitively impaired, in the second, they are low average. IQ tests are a theoretical measure of true intelligence but it is impossible to measure actual intelligence. You can only get an approximation.

Now, let's examine the argument that if you replace a standard Weschler IQ test with Raven's Matrices, autistic intelligence increases. First off, some people will do equally well on both tests. Secondly, it makes sense that if autistics are better at a matrix task their scores will improve. Some tests like the Weschler scales include a matrix component but also have many other components. I'll tell you what - you take an IQ test and then base your intelligence on one subtest - your highest score, and I'll bet you were smarter than you thought too.

Doing well on Raven's Matrices proves one thing - you have ability in abstract reasoning. A definite benefit for sure, but only one part of the construct of intelligence.

The reason we have tests that are standardized across the population is to get a sense of how someone performs relative to everyone else, that is the point of normalized scores. By saying "autistic people don't do well with verbal tasks" Mottron is recognizing a core deficit of autism - verbal processing. Since the measure of intelligence is ultimately meaningless (remember, it is a measure of the tasks performed which is an approximation of intelligence - and the approximation varies widely depending on the tasks), it is equally meaningless to say "autistics have higher IQ if given a different task". Of course they can. I have higher IQ too if you only give me a task I am good at doing. This doesn't mean people with autism aren't intelligent, it means ability is quite variable depending on the task and this is not typically seen in the unaffected population.

So putting aside the idea that IQ score = intelligence, I can say that people with autism will have a lower score on these measures than people without autism generally because of the tasks, and by altering the tasks I give, I am not giving the same test. Then the normalization becomes meaningless because I am not comparing apples to apples.

Or to put it another way - if a person scores 60 on a verbal test of "intelligence", it doesn't mean they are not intelligent, but it does mean that relative to everyone else, they are not good at this task. Since one's ability to do the task can impact how well that person learns, we have to either change the way we teach or help that person do better at that skill. Either way, having the measure is useful.

People who advocate for neurodiversity or "acceptance" of autism push the idea that modifying expectations or the environment for autistics will allow them to contribute better to society. No argument there. But it is a completely different thing to say, "if I modify the environment, this person is functioning at the same level as everyone else." No, they are not. They are doing something they couldn't do before because of a modification. There is nothing inherently wrong with that, but we have to recognize the difference between being able to do something independently the way everyone else does it and doing it with modifications. This measure is important because without it we can't really measure progress.

A person's ability to be self-sufficient and independent is based on their ability to adapt and function in the real world. Sure, some employers may be willing to adapt to help people with autism but why bother when you can hire someone who doesn't need help? Isn't this the definition of disability? Mottron does mention that despite "intelligence" day to day functioning is definitely a problem for most autistics. In some fields, for some people, autism may be an advantage. For most people with autism, it is not. Pretending it is is disingenuous, and that is reality.

I should mention Michelle Dawson intervened at the now famous Auton case that determined the Supreme Court of Canada could not compel governments to cover ABA treatments as medically necessary therapy. Her claim? She did not receive treatment and she is fine. Good for her. My daughter isn't like her and needs treatment. It's her best shot.

Speech Update

2011-10-20T08:45:00.000-07:00

Oral Apraxia

Oral apraxia involves the muscles of the mouth. A person with oral apraxia can produce normal movements reflexively or during everyday activities, but cannot imitate or perform these same movements when asked. The difficulty may range from mild awkwardness and hesitation to complete absence of voluntary movement. For example, the person may be able to smile in response to something funny but unable to smile for the camera when asked or able to open the mouth during a yawn, and unable to do so for the doctor.

Alanna continues to make gains in speech production, but it is oh so very, very slow. She may learn a sound, or a combination of sounds, but then can't switch between the sounds or put them together in a new way. Sometimes words are generally reproducible but other words she can't always say when asked.

Welcome to apraxia, autism's happy cousin that makes speech very difficult and in some cases impossible.

The most frustrating thing is that once a child with autism is motivated enough to speak, they still can't because the words don't come easily. When the words don't come, it frustrates the child even more, making them less motivated to speak.

I am resigning myself to the fact that at least for the forseeable future, Alanna will have to rely mostly on augmentative communication to be able to "talk". She is fluent in PECS but it is time to move on to a voice output system, and that is likely to be the iPad with Proloque2Go.

I am sad because I feel like I am giving up, but also happy in that I know she will make some great gains in expressive communication with a system designed for it (trying to have a conversation with PECS is, at best, tedious).

An Election About Nothing Again

2011-09-19T07:50:00.000-07:00

For those outside Ontario (and even for those inside the province), we are presently in a provincial election. Media coverage has been sparse and frankly, there are not a lot of issues being discussed. Perhaps it is voter fatigue but it appears this is a sleeper election.

The Ontario Liberals are going for a third term. It appears (though it is by no means inevitable) they will win a third majority government. This saddens me because I am angry at this government for ignoring autism. If you question Liberals about autism, they will tell you how much they have done to assist and how they "undid" decisions from the previous government. Fair enough - but news flash! They have been in power for eight years... what you did eight years ago is done, let's focus on the future.

Perhaps my greatest complaint is the rolling out of all-day learning. Dalton McGuinty likes to tout himself as the "education premier" and he believes giving children all day kindergarten will result in better outcomes for learning. Perhaps this is true, perhaps not - Ontario is the first jurisdiction in North America to try it. It may improve learning, or it may be a populist decision to provide free child care to thousands of parents who wish to return to work and not pay for said child care out of pocket.

All of that aside, my primary complaint is this: why do typically developing children, who are already excellent learners, get two more years of full day learning when children with autism are stuck on waiting lists for two or three years to receive treatment to help them learn? Why do school age children, for whom tens of thousands of dollars is allocated, not have those funds follow them in the school? Why do parents have to fight so hard for a decent education for their autistic kids when evidence-based best practices are known and being applied in other jurisdictions?

It would seem according to Dalton, only regular, non-disabled children are worthy of education. That is an attitude I can't ignore. It is wrong and it should scream wrong to everyone.

Autism aside, there are things I like in all platforms - PC, NDP or Liberal. But I have to speak for autism because there are so very few voices speaking for autism and they are too quiet to be heard by politicians.

I can't vote Liberal. I implore you, as the reader, to vote NDP or PC, or anything else but Liberal. Our kids are worthy of education... of having a meaningful education that suits their needs, not the needs of the teachers, or the EAs, or the board. How sad the "education premier" can't see this.

Can we cure disabilities?

2011-09-11T18:42:00.000-07:00

Applied Behavioural Analysis (ABA) is the most common treatment used in autism. It has many detractors, and many of the developmental type treatments (RDI, Floortime, Son Rise, SCERTS) attempt to treat autism apparently not using ABA.

Of course, strictly speaking, ABA is simply providing a consequence to any action, either positive or negative, rewarding or punishing. Developmental type treatments actually use ABA techniques, but it is done using a more naturalistic approach. Based on what I have seen, good "natural environment" ABA is very similar to these techniques. The Early Start Denver Model, for example, purports to be a "developmental" treatment for autism when in fact it is really an ABA approach using natural environment teaching in dyadic exchanges, pairing sensory reinforcement with social interaction.

Social communication deficits are of course central to autism as a disability.
According autistics to whom I have spoken to as adults, and some I have read about who are considered "recovered" or "high functioning", they have not suddenly developed the innate ability that neurotypical people have to understand social situations. Rather, they have learned the appropriate response to give during social situations and have adapted to cope with their disability.

ABA has been criticized for making kids robots and if you buy the RDI view, does not give autistics the ability to think dynamically. If you also believe that some autistics are "cured" (I think there is a continuum of being able to cope - the better you cope the more like normal you appear), then theoretically there must exist some former autistics who now have developed the innate ability to read social cues. Do I think these people exist? Yes, probably, but not very many. Very, very few, in fact, far fewer than the number of people who "recover". Why? Because recovery is more often "coping", and not a cure.

Autism is defined by observable behaviour. If you don't have the behaviour, you don't have autism. But you can still have autism and simply control your behaviour to the point that no one notices. You may still not get jokes, understand facial expressions or body language or read emotions all the time, but if you do it well enough some of the time, you don't have autism.

Where does this all come back around to ABA? In my limited experience so far, ABA is most difficult to apply to social skills because it can become very rote and is difficult to generalize. However, the people who have "recovered" by learning how to operate in social circumstances have done so one situation at a time.

Having a computer science background, one of the most interesting concepts to me at university was artificial intelligence. One of the AI tests is called the Turing test, where a person converses with a computer or a real person but is not told to whom they are speaking. If the AI can trick the person into thinking they are real, it passes the Turing test.

Now, given a computer with sufficient exposures to enough social situations, and given a limited enough conversation in both time and depth, it would be reasonable to fool someone in this way. It would be even easier to create a computer program that didn't fool people but that people believed was a good facsimile of a real person.

When it comes to autism - having enough "scripts" and knowledge of different social situations is very similar. The autistic may never be able to pick up on social cues like a typical person, but they can be close. They can be close enough to cope - to fool some people, but be good enough others may detect an oddity but not much else.

Assuming it is not possible in most cases to really cure autism - only to give the ability to cope, ABA can work for social situations given enough training in enough situations. Eventually, autistics will learn for themselves what is expected simply by asking the right questions.

Before I continue - let me reiterate - I believe people are "cured" of autism by coping to a point where they can functionally beat the equivalent of the Turing test with neurotypical people 99% of the time. It happens, but it is probably very rare.

Let me contrast this to another disability. If someone is vision impaired and vision cannot be corrected with drugs or surgery, the next best thing is to give that person coping mechanisms. They learn to read with Braille. They may use a service dog or other method to get around. In the future, we may have the ability to use technology to provide a facsimile for vision (if you know Star Trek, think Geordi Laforge). However, in the end, the disability remains and the vision the blind person experiences will never be the same as that of the person who can see. The reality is that for most disabilities, coping is the best we can do because we can't cure them. If a blind person had eye implants with computerized motion to mimic a seeing person's eyes and converted light to images in the brain using implants so well the person could fly a plane, are they still blind? Yes, they are still blind. But they cope so well, it doesn't matter.

I don't think autism is any different. Some criticize ABA because it's not a real cure. I don't think there is a real cure, at least not in the medical sense of the word. I think some autistics have the capacity to become neurotypicals and a variety of treatments would work for them (in other words, if you are an autistic who can become neurotypical, several treatments could work with roughly the same effectiveness). For everyone else, all the treatments help them cope, and some do this better than others depending on the severity and types of deficits.

Now, a final unrelated point... many people with classic Kanner autism also have intellectual disability. There is a lot of disagreement with this statement and intelligence in autistics is very difficult to measure. But the research seems to state this is currently the prevalent view. If true, even if autism could be cured, intellectual disability (ID) would still remain. In this case I expect most parents of children with ID would want their children to participate the most fully in life they can. In this case, ABA would be warranted if it is an effective teaching method.

Some people call ABA repugnant because it smacks of animal training. But consider that a typical dog has the cognitive ability of a two year old. An adult functioning at a two year cognitive level is profoundly intellectually disabled. Anything they can learn to be more independent is a good thing. Yes, they may have the intelligence of a dog, but they are not a dog. They are human and deserve all of the respect that goes with that title. Using ABA does not rob them of this respect if it is effective!

Autism and Marriage

2011-08-29T17:03:00.000-07:00

When Alanna was diagnosed with autism we had many people concerned about Alanna, but also many people concerned about us. I am happy they were, and they have good reason to be concerned. Divorce in couples with autistic children is higher than the general population. An interesting finding is that while most couples experience a rapid decrease in risk after their children reach about eight years old, the risk for parents of children with autism does not decline and remains at the same levels as parents with young children.

It is not difficult to see why this is the case. Autism, by definition, involves serious developmental delays (hence the term "pervasive") across all developmental domains. At eight years of age, a child with autism may only be functioning at a three year old level or less. Most parents are freed of the daily grind of caring for a child of eight - most children can cloth and feed themselves, use the toilet, shower and keep themselves basically clean with some reminders. They will have friends and can entertain themselves for short periods of time. Cognitively, they are capable of playing games adults find more interesting and can usually enjoy many adult activities, or learn with their parents by taking up a hobby or shared interest in sports.

It is one thing to have to change a child's diaper for 2.5 years. It is quite another doing it for 21 years, or longer. Many parents see early childhood as a challenge that will pass, but for some parents, it will not. It will only end when they can arrange long-term care and not feel guilty doing so.

Or, here is another example with which I am quite familiar. It is one thing to be up with your newborn for five to six months each night. It is quite another to be up with your child for five or six years, or longer without the benefit of daytime napping. If you are a parent, do you recall how irritable you were with your spouse? Now, try doing that for six years and it is not hard to see why the risk of divorce is higher.

Add to this the social isolation from friends and family and the economic hardship of having someone at home to care for the child (or working extra hours to provide therapies and interventions), and you have a recipe for disaster.

I pray often for my marriage with my own beautiful wife. I pray God builds it up, strong and able to withstand everything. I couldn't imagine raising two children myself, let alone with a child who has autism. More than once, we have rescued each other from completely losing it.

Wondering how to help a couple who has a child with autism, or other disability? Help them maintain a strong marriage. They will need your help and they will be grateful for it.

Autism Risk in Siblings

2011-08-16T11:19:00.000-07:00

A new study in the journal of Pediatrics has reported a much higher risk factor for siblings of kids with autism. According to the study, children with at least one autistic sibling have a 19% (26% for male children) chance of developing autism themselves, and this risk increases to 32% if there are multiple children affected.

This means my son, who is developing typically has (according to this study) a 26% chance of developing an Autism Spectrum Disorder. That's a scary number.

There are many families I have seen where a first-born child with autism precipitates an end to more pregnancies. This news will make that trend even greater. Alanna was diagnosed after my wife was pregnant with Tyler, but if she were diagnosed beforehand, we would have thought long and hard about getting pregnant again. With the risks as high as this study mentions, we would have probably thought the risk was not worth it.

A Kind of Acceptance

2011-08-08T14:06:00.000-07:00

When Alanna was younger, I used to buy her a lot of toys. I still buy too many toys for the kids. My wife will tell you it's my weakness. Toys "R" Us is a bad store for daddy.

Alanna was never interested in playing with toys "properly" when she was younger. She would play with parts of the toys, or lick them, smell them, stare at them, or do any number of "weird" things with them. This perplexed me a great deal, especially before her diagnosis. I tried to show her how to play with them properly and figured if I buy the "right" toy, she would like it and play with it a lot.

Fast forward to the present day...

We have taught Alanna how to use a number of toys as they were "designed". We have taught her how to play with pretend toys, and how to even pretend how to use things for functions for which they were not intended (e.g., feeding a baby with a block!) We are presenting trying to teach her to play with a variety of toys if they are laid out for her to play with, and we're trying to do this without a visual schedule because this is unnatural and we only want to do that if it is absolutely necessary.

Alanna will play with toys, but usually not for very long without prompting. She loses focus and goes on to the next thing. This is usually tied to sensory regulation. If she is regulated and isn't engaging in activities to stimulate her senses, she plays better. If she needs deep pressure, bouncing, running, etc. to stimulate her senses, the playing will not last long unless it is prompted.

It occurred to me the other day the purpose of play really is supposed to be fun. So buying her more toys with the hope she will find out fun means I have to obtain toys she finds fun. Most toys she finds "fun" are sensory toys. She will also play games with me, but on her own terms.

I used to think Alanna needed every waking minute to be "redirected" to ensure she was learning from her environment. Not only with that attitude completely burn you out as a parent, it is also unfair to your kids. Here's the reality - for Alanna, bouncing on the trampoline and bouncing on her bed is fun. Pulling out facial tissue and rubbing it all over your body is fun. Licking stickers and sticking them all over the place is fun. Emptying your closets and throwing your clothes on your bed is fun.

Maybe playing the way I want her to play is work. Maybe she does it sometimes because she is interested but mostly because I want her to do it. Kind of like when your dad tries to show you fishing is fun, but it's not.

Lest you think I've converted to neurodiversity with this post, I haven't. Play skills are still needed for school, to interact with others and to learn other skills. But it's still work. I can hope she will eventually find it fun. I can try to make it fun, but if I'm really giving her time to relax, shouldn't I let her do what she wants to do to relax (within the limits of safety and sanitation?)

Maybe the next time she is rubbing something all over her face, I'll just join her. It's work for me, but maybe that is the price of entering her world.

Beyond Recovery

2011-07-29T12:17:00.000-07:00

I have written before about the concept of autism recovery. Deborah Fein made headlines some time ago by stating a certain percentage of children with autism will indeed recover, and many autism therapies claim recovery with their methods. This percentage sits somewhere (in her estimation) between 10-20% of all cases.

When Alanna was first diagnosed and I learned recovery was even possible, it was my goal for her. We had been very fortunate - we had an early diagnosis and possessed the resources to get intervention very early. Although non-verbal, her initial IQ test showed cognition in the low average range. Alanna is now three years old and will be four years old in November. Though IBI has only been going for 15 months, she has had other interventions for at least two years. Her talking is coming but it is oh so painfully slow, and she is so frustrated by it.

I realize now recovery can't be the only goal. Although I would be thrilled to see it happen, it is not very likely. Once very severely impacted by autism, she is now only moderately affected, but still has difficulties in her day to day activities. Now what we must focus on as parents is to give Alanna as many tools as we can to make her as independent as possible, so that when we are gone, she is secure.

So while I hope for recovery, I plan for complete dependence, and we continue to push her daily to learn new skills and reach out to those around her. It is not defeat, it is prudence. I am not limiting her at all - I am simply trying to be realistic. I hope she will forgive me for it later.

Emergently Vocal

2011-07-06T08:09:00.000-07:00

To a parent with a child who has autism, the beginning of speech seems a lot like this - the mythical Phoenix rising from the ashes of past dreams. We have spent a lot of time and money having Alanna work with a speech-language pathologist, with follow-up from her IBI team to get her to speak. She has speech apraxia, so despite her best attempts to imitate vocally (despite effort, intention and desire), she cannot make many sounds without a lot of help. It is incredibly frustrating for her. I am convinced without this additional impediment she would be very vocal (perhaps not communicating functionally, but have no trouble with vocal imitation).

We have been using PROMPT, a technique that gives Alanna some physical cues about lip, jaw and tongue placement to make sounds. Once she has a sound, she also has difficulty isolating it and combining it with new sounds to make words. For example, trying to get her to imitate \o\ (as in go) can be tough because she learned this sound as go, and so the "g" has to be in front to get to the "o", and if you want to combine "o" with something else, we have to get her to drop the "g".

However, she is now "emergently" verbal. We have several words that are consistent and have meaning:

Go
More
Up
Help
Open

And we have a word list of perhaps 26 words she can sometimes say, but needs physical prompting or she is inconsistent or we can't understand the speech production.

Of course all of this is very expensive but it is also worth it. Every word she can say is like gold because it makes it easier for her to communicate and be understood.

Life is a Whisper

2011-06-11T17:19:00.000-07:00

Friends of ours recently had a baby boy. It is their third child and second son. The excitement of his upcoming birth was all around them and they were waiting impatiently for it. But one day he stopped moving in his mother's belly and after being rushed to hospital, he was delivered by emergency C-section.

His heart had stopped, all blood drained from him. Two transfusions later, he is alive, but with severe brain damage. The doctors are gently pushing his parents to take him off life support because his organs are precious and could save the lives of other babies in dire circumstances.

Live and be so disabled as to be in a vegetative state, or die and save another. When he is off life support, he may die, or he may live. Yet no parent should ever have to make this decision.

Despite the challenges of raising a child with a disability, despite the sleepless nights, the anxiety, the financial and emotional costs, despite all of that, I get to try to be a parent. Our friends role as parents to their son has been reduced to a single choice.

Would my broken heart still sing...
If I lost it all
Would my hands stay lifted
To the God who gives
And takes away?
If You take it all
This life you've given
Still my heart will sing to you...
- Kutless

Biomedical Trepidation

2011-06-08T12:49:00.000-07:00

Most of you know that I am a biomedical skeptic. Alanna is on a gluten-free diet but beyond that, we do not do much in the way of biomedical treatment.

All of that may change next week. After our failure with clonidine my wife and I decided it is time to give in and go see a DAN doctor. We feel that we have nothing to lose and possibly something to gain. After all, the gluten free diet did help with gastrointestinal problems, so perhaps Alanna is sensitive to diet.

I am hopeful because there is some research out there proving some of these therapies can be helpful, but also nervous because of the potential for harm. However, we have ABA therapy and speech therapy well established now, so any additional huge leaps in progress we would have to attribute to biomedical intervention.

In general I would describe Alanna as generally happy, but sleep deprived and on many days, just "unwell". She is often lethargic and spacey and I don't know why. Sometimes she cries for no discernable reason. I have to wonder if she just feels ill... sort of like I feel when I don't exercise and eat crap for three days straight.

Maybe it will help, maybe it won't. But before we pump her full of more drugs, we feel we ought to at least investigate it.

Clonidine Fail

2011-06-04T19:47:00.000-07:00

We have tried for months to avoid medicating Alanna for sleep, opting instead for melatonin. This has worked well generally - in a good week she will sleep through 5 out of 7 nights without waking. In bad weeks - well, each night is a prayer said before bed that she might sleep.

After seeing a neurologist, we decided to try clonidine, a medication typically used for blood pressure but one that had some good research behind it for reducing night wakings and inducing sleep. We started it two weeks ago...

... and both Mom and Dad believe it is a failure. In the last two weeks she has slept worse than ever, waking multiple times at night or waking early in the morning. She does fall asleep more quickly, but the melatonin did that too. We kept titrating up her dose until we hit 0.1mg today... and she was a complete zombie.

We are not totally surprised by this. Alanna has demonstrated this paradoxical reaction before with Benadryl (it made her more excited and hyper) when we tried it before too.

So we are tapering her off this medication and hoping melatonin does the trick until the next appointment. I hate medicating her but if it will help her sleep regularly, the whole family, including her, benefits. But it's got to work, and clonidine is not the drug for her.

Communication Update

2011-05-31T11:19:00.000-07:00

I think if Alanna had the "talk" picture in her communication book she would probably give me these two pictures on a sentence strip.

Alanna has made some good progress these last few months. She is in regular speech therapy with a talented speech-language pathologist (SLP) and she works directly with Alanna's IBI team to ensure the therapists are incorporating her techniques. This seems to confirm our previous suspicion of a motor planning disorder (speech apraxia). She can say roughly ten words, mostly prompted, but sometimes spontaneously. This in itself is a miracle, since we were at zero words before, and any words is a step in the right direction! The SLP has said that once she can say 50 words, her learning may accelerate because in typical development this is when children get the base to practice enough sounds to learn new words more easily.

Interestingly, although ABA has proven very effective to teach Alanna most things, it was less effective for vocal imitation. Many early vocal programs encourage children to echo sounds, and then these sounds are built up to form words. This has never really worked with Alanna because the sounds (phonemes) were meaningless. Once she attached the words to meaning, she was much more successful. However, now that she has words, we can use ABA principles to get her to use them appropriately. And her PECS language has been taught successfully using ABA principles.

While we're on the subject of PECS, we are starting to see a spike in some behaviours. I suspect this is because as she is getting older (she is 3 1/2 now, where does the time go?) she is realizing that not everything she wants to say is in her communication book. She has, several times, gone to her book and looked at the pictures and then became very frustrated because she could not express want she wanted to say. Once she started a sentence with "Alanna..." and then couldn't find the words to finish. We are bringing in more complex requesting programs to try to reduce frustration, but I really think her cognitive ability has exceeded her expressive language so much that this will continue to be a huge issue for her. Thankfully she has started using the sentence "I want outside" to mean either (1) I want to go outside and play, or (2) I want to leave now. I am really trying to understand the root of her communication because I think half the time what we think is a "simple" request is simply the best she can do. For example, "I want blanket" (her comfort object) might be, "I am afraid", but she has no pictures to say that yet. She feels it, perhaps she can label it given the pictures but you can only teach so much at once!

I believe she is very much aware of her inability to speak and she is very frustrated by this fact. She tries very, very hard in speech sessions to make words, and even tries to prompt her own mouth to make sounds. On the one hand, it's a good sign that cognitively she is understanding more of her world. On the other hand, she is also lacking the ability to express herself, and that is incredibly difficult for her to deal with.

I expect more behaviours as she tries to communicate. But I don't believe this is "bad" - I think it's evidence of something good. We just have to try to find ways to help her tell us what she is thinking and feeling.

Window On Disability

2011-05-14T18:42:00.000-07:00

I found this article in the Toronto Sun very interesting. A 14-year old girl has been kicked out of school (and not just any school, but a special needs school) because of aggression issues. She has two paid aides that are obviously not getting the job done. It is unfortunate that behaviour analysts can't enter her classroom and analyze where the aggression is coming from. Unfortunately for us in Ontario, Board Certified Behaviour Analysts, an American designation, isn't a regulated profession, so the schools won't call upon them even if hell has frozen over. In any case, I have commented many times before on what seems to be a very inefficient and ineffective way for us to fund special education.

What is more interesting though are the comments people have made on this article. While I realize the kinds of people who tend to comment on news stories tend have a certain world view, it is representative of people's opinions and in an effort to "seek to understand" them, it's worth examining.

Comment:
Having an autistic, low functioning and non-verbal nephew I am very well versed in dealing with these children. It's unfortunate it has to be this way but in this case the school board made the correct decision. It wouldn't matter how many TA's were assigned to this child. If she is physically aggressive and unmanageable then there is no handling her in this environment and she is better off at home where she is comfortable and unstressed and her parents can work with her or they can hire a private care worker to work with her. Not one of you who hasn't had an autistic child or close relative should have anything to say negatively about this decision because you don't know squat. I care for my nephew deeply but I realize that he is in a private facility because that is the best place for him to learn and progress at his own pace. Other students do not deserve to have their education hindered because one special needs student disrupts the entire class structure. This decision was the most fair thing the school board could do.

My response:
What this person is claiming is that this girl is better off at home not disrupting the other children. What they fail to understand, despite their claims that they are knowledgeable, is that every other child is entitled to an education. What makes this girl different? Perhaps the parents might be open to this little arrangement if her home workers, educators, or therapists were paid for - but the author is suggesting the parents pay or home school their child. How is this fair? I'm sorry the child is disrupting the class, perhaps the school could provide her with another work area where she can learn. She has two paid staff, are these the right people? Instead of blaming the parents can we think about changing the supports to help everyone?

Comment:
I want so badly to NOT be cruel about this. But, you make it tough. She is 14 years old, and by Moira MacDonald's account she understands maybe 10 words. She is never going to learn to be social. Ever. $27,000 is being wasted if that is the goal. Leave schools like Drewry Secondary for kids where there is some hope of progress.

Because "we" are on the outside, looking in, we are "selfish", and perhaps misinformed...uncaring even. But I tend to think it's the other way around. People with special needs kids all too often don't see the math in what they are demanding. I'd love to see a society where kids like Emily get everything they need and desire. But those funds don't exist. $27,000 is being spent on someone with a command of maybe 10 words when (and forgive me for being honest here) people with potential are foregoing university educations for half that amount because there just is no money to assist them. That's just wrong, no matter what side of this issue you are on.

My response:

These are the words of someone who has never known disability. I used to be like this person but obviously have gained a new perspective. The truth is we have no idea what Emily is gaining, learning and observing. Her inability to communicate does not make her intellectually disabled. She may well be intellectually impaired but I don't know that.

As for wasting $27,000 - parents do not get a choice how this money is spent. The board gets the money and the board decides how, and the unions like their cut. Perhaps the parents would prefer to have her at home with $27,000 of funding to work with speech pathologists, occupational therapists or behaviour therapists, but that's not how the system works.

We don't choose who is worthy and who isn't in Canada. This poster believes Emily isn't worth the money. If we take this argument to its logical conclusion, we should euthanize people who take too many resources from society and nurture the strong. If someone is ill and a surgery is costly, we should let that person die rather than let them try to fight. No one would ever dare suggest this in a hospital (despite the billions it would save us), why does this argument fly in education? Perhaps this poster would suggest the same... all I have to say is, I hope for their sake people who share their opinions never form government... and if they do, I hope the poster remains "useful" forever, else risk being disposed of as being unworthy.

Comment:
I don't want to see the kid suffer, either, but let's face it...she knows 10 words at the age of 14. We start "educating" her and what do we get? 20? 30? 40 words? Maybe she can do math at a second-grade level?

Spending resources educating this child effectively amounts to a wager that this child will become a functional, productive member of society. As cold and as callous as this sounds, that's probably not going to happen. This child will probably have "special needs" for the rest of her life, and someone's going to have to pay for those needs. In other words, the odds on the wager are way too long for at least some of us to be comfortable with the bet that is effectively being taken with our tax money.

My response:
Wow. This is just... wow. So should we just institutionize Emily? If she can't possibly make gains to be more independent, less dependent, contributing in some way?

Comment:
The real failure is not with the school system as this article trys to portray. Let me correct this article, the 2 billion dollars is not "specifically to help special needs kids like her". It's to help all special needs kids in the school system. Dave Abel is obviously biased and irresponsible for making this suggestion. I don't like it but the reality is funding is not unlimited and these resources cannot be selfishly used when so many others can really benefit. There are degrees of disability and the funding must go where it will benefit the most.students. Some parents just don't care about how the other students in the classroom are affected. They don't care if their child has a negative impact on 20 other studends in the class. There's a limit enough is enough! I resent that my and ten other special needs children has to do without a program that may cost $1,000, because $27,000 is going to one student. Then on top of that, these students are being constantly interrupted in the classroom. If the parents are unable to cope, then unfortunately some children have to be institutionalized. Don't like it, but you can then have more specialized personnel providing better help to more children. At least 10 to 15 other students might get the programs that can be effective throught their life.

My response:
Wow, I'm sorry her needs are too much. Institutionalizing her won't cost any less, but you could euthanize her.

Comment:
A complete failure to accommodate? Sounds like they have accommodated this young person for many years and they have not been able to transition into the system. What happens when they are to old to go to high school? Who will be the next that will be expected to accommodate? The local College, University, Mall, Employer? What is the parents responsibility in helping there daughter fit into their environment? Pinching is in response to stress, where else but in the school system do they expect this to be considered acceptable behavior? The parents better hurry up and teach their child appropriate behavior. If it it takes two support staff now to safeguard this 14 year old from others, the future does not look very bright.

My response:
This person obviously has no idea about autism. I seriously doubt the parents have not done everything they can for Emily including spending tens of thousands of dollars on treatments, perhaps more. People see the aggression but don't clue in that the intent is not there - she is probably trying to communicate something, but with no behaviour analyst to figure it out, no one is listening to Emily.

And if it were that easy to "teach Emily appropriate behaviour" do you really think they wouldn't have done it already?

Behaviour is communication; it is not always what we think it is. It is functional and has a purpose and it may not be "because I like to hurt others".

The Trouble With Advocacy

2011-04-23T12:14:00.000-07:00

For those of you outside Canada: We are presently in a federal election. It's our fourth in seven years. Elections always remind me of advocacy because they tend to be the time politicians suddenly become interested in what you might have to say.

Autism advocacy is tricky business. There are many interest groups and all of them have a different spin. There are very few advocacy groups with whom I completely agree. Most active autism advocacy groups are pushed by parents, a group of people who are already lacking in both time and money, since kids on the spectrum tend to suck both away from us. Let's examine a few well known autism groups and see where the chips fall.

I struggle a lot with Autism Speaks. They are the largest advocacy organization in North America and tend to compete with local charities for dollars. My biggest two issues with Autism Speaks are (1) their huge focus on research, and (2) their tendency to pay their staff ridiculous compensation (go to page 9). Research is important but not to the detriment of advocating and supporting families struggling with autism, including programming and providing materials. This seems to be left to local autism societies, many of whom struggle with financing. If people ask me if they should give to Autism Speaks, I tell them they are better off giving their money to their local autism society, such as Autism Ontario here in Ontario.

Medicare for Autism Now is an organization based in British Columbia that has been particularly active in trying to knock off Conservative candidates in the Canadian federal election. Their claim is that children with autism are being discriminated against because treatment is not covered under Canada's universal health care system. Their solution is to amend the Canada Health Act to include specific coverage for IBI and ABA therapy. I have several problems with this: (1) Not everyone accepts ABA as a treatment for autism they want (I happen to believe it is the best treatment but recognize not everyone agrees), (2) It is discriminatory to make ABA treatment funded but not so many other things like speech therapy or physiotherapy, (3) Putting this requirement in the Canada Health Act will not improve any services because it does nothing to make waiting lists shorter, which is the primary problem many parents have in accessing this treatment. True, amending the Canada Health Act will put ABA therapy in the hands of some parents in provinces that do not provide it, but interestingly, the most vocal parents tend to live in Ontario and B.C., which already have comprehensive ABA coverage. In the B.C. case, amending the Canada Health Act will not change a thing - $25,000 per year per child under 6 years old would be considered meeting that directive by a court.

Let's discuss the fairness. As a parent of a child with autism, I understand the financial cost of treatment. It's $50,000-70,000 per year to treat it with intensive ABA, and people cannot afford this. We need help. But there are other disorders, perhaps not as common, such as speech apraxia, that may need intensive treatment for success. Speech language pathologists are not cheap. What about a debilitating condition requiring physiotherapy? What about people with no drug coverage for cancer or other conditions? The reality is that Canada does not have a universal health care system, it has a partial health care system mainly concerned with keeping people alive, not about quality of life. The only way to make this fair is to cover all para-medical professionals plus dentists and drug coverage. In an age where 40-50% of provincial budgets are going to health already, do you really think this is going to happen? I admire this group's goal but it's both unfair and unrealistic in this parent's view.

Autism Resolution Ontario is an advocacy group that advocates for timely access to ABA services in Ontario. I am generally in agreement with this group (and indeed am part of it) but I have one major issue in that it advocates for redirecting all autism funding to IBI. I strongly disagree with this for two reasons: (1) While IBI works for some kids, it does not work for all kids. It is unfair to withdraw supports, however meagre they may be, from children who do not respond to this treatment. (2) Support for summer camps is huge for the school age population and is one of the few things parents can obtain help with when children are this age. It should not be withdrawn either. Laurel Broten, the Minister for Children and Youth in Ontario has said this before and I tend to agree with her, even if I think the budget for the IBI program is terribly inadequate.

The Ontario Autism Coalition has been around for several years and was instrumental in opposing Ontario's age six cut-off years ago. While inactive until recently, it is operating with renewed vigour as a provincial election looms. Besides the medicare for ABA funding argument, there is little about this organization I find questionable and so far I have admired their advocacy efforts.

Fairness in Education

2011-04-19T12:13:00.000-07:00

Ontario's public schools have long argued that Intensive Behavioural Intervention (IBI) is a form of "therapy" and thus cannot be delivered in the school system. Although it is therapeutic in nature, IBI is simply a way of teaching students with autism in an intensive manner (it is just intensive ABA). The principles of ABA are used daily in schools, whether teachers know they are doing it or not. When you think about it, most types of "therapy" with the exception of medical procedures are really learning techniques. Speech therapy is a way of teaching people how to change how they talk and process language. Physiotherapy (or physical therapy) is a way to teach people how to move their muscles in different ways. Occupational therapy teaches people how to perform daily living activities. Psychologists use cognitive behavioural therapy (CBT) to help people learn how to change the way they think. There is no real practical difference between education and therapy.

Let's examine how special education dollars are spent. In Ontario, dollars are given to the board on a per student basis but the money does not follow the student. Thus it is possible to have 100% of the dollars for one student go to a school where that student does not attend. School boards like this because it gives them maximum funding with maximum flexibility and zero accountability. If we look at the funding for a full-time educational assistant, we can see they earn between $20-24 an hour for 6.5 hours a day if they are full time. In this particular link, you can also see there is a special stipulation that the EA in question should be able to translate American Sign Language (ASL), one imagines for a deaf student, but possibly also for a student with autism who uses sign language.

To be an EA, one usually needs a nursing background, an early childhood educator background, or a developmental service worker background, all available through Ontario's colleges.

To employ an EA full-time at $24/hour for 6.5 hours a day costs the board (excluding benefits and other sundries) about $33,000. This assumes a 42 week year (I am guessing here - eight weeks for summer plus one week at Christmas and March Break). If there are benefits, that might bump us up to $37,000 a year.

A typical ABA worker might receive the same hourly rate, without benefits, and with much more training than this EA. They would be more accountable to parents. They would allow children with autism to make real gains on an IEP.

So tell me why we hire people to be EAs for children with autism who are not qualified? If we can require EAs to be ASL interpreters, why can we not require experience with ABA? And then tell me why we don't hire the people to conduct the education that we know works for less cost?

The problem is not money in the system, it is how it is wasted. Our kids deserve better.

I Wish

2011-04-17T17:57:00.000-07:00

As Tyler gets older, I marvel at how I can have a full on conversation with him. He's not even two yet, but somehow we can talk about the things he likes in a book, his favourite numbers and letters, what he did in his diaper and how he is feeling.

I have been solo with Alanna this week since her mom is away with Tyler, so there's been lots of good daddy-daughter time. Despite all this time with her, I miss her. She's been withdrawn lately and very hard to engage. It has felt like it used to two years ago when she was there but it was like I wasn't in the room.

I can interact with her, but there is a lot of prompting going on and it seems so forced. This isn't always true - usually she is more engaging and it is easier, but not lately.

We went to the pool today because Alanna usually loves swimming and it's great exercise. We both had meltdowns... her at the pool, and me in the parking lot after the pool. She wouldn't give up her blanket and I think was just too anxious today to venture in (this is highly unusual). So we sat and watched the kids swimming for about fifteen minutes, then left. She was frustrated, I was frustrated. Going to the pool is a hassle and I felt like it was a waste of $10 and driving there and back.

While I was cradling Alanna I watched all the other kids and thoughts crept into my head.

I wish Alanna could be like that.
I wish she could be normal just for this afternoon.
I wish she could talk to me.
I wish she didn't get anxious.
I wish I had my daughter back.

Some parents have this whole "autism is a gift" thing going. I am just not there. I choose to fight autism because I do not think that the world is suddenly going to wake up and bend over backwards for people with disabilities like Estee Klar. Instead, I want to equip Alanna to be as independent as possible while still being herself... indeed, the job and goal of any parent.

Today, for a few moments, I stopped looking at my daughter as a person I loved and instead looked at her as a disabled person. When I realized in horror what I was thinking, the guilt kept on coming. Because if a girl's daddy can't recognize her as a person with strengths and talents, worthy of love and with something to contribute, then how will the world treat her? It was only a few minutes, but those are thoughts that should never enter my head.

I wish I could stop wishing she didn't have autism.
I wish I was I better parent.
I wish so many things.

Fanshawe Success

2011-04-15T07:15:00.000-07:00

Yesterday I got a chance to meet with the graduating class of Fanshawe College's Autism and Behavioural Science program, designed to create trained staff for working with children with autism in IBI/ABA and school programs.

I was very pleased with the turnout and the interest. Many of the graduates had a strong desire to work privately with families but had no idea where to begin. I am hoping the information we gave them was helpful in getting them to a place where they can launch successful careers and help lots of parents and kids in the process.

The reality is that there is still a shortage of trained therapists and still not a good way to connect families who need help with people who can help them. Even for families who elect to receive services directly from the local autism provider in Ontario, such as Thames Valley Children's Centre, there are still many parents waiting or ineligible for the Autism Intervention Program. I hope that through this we can get more therapists together with parents who need them!

Vocalization Frustration Part II

2011-04-06T11:28:00.000-07:00

Back in August, I blogged about my frustration with attempting to get Alanna to speak (and when I say my frustration, I imagine hers is even worse). We were pumped about seeing our new speech-language pathologist. The good news is, she is truly excellent, probably the best speech-language pathologist we have ever seen.

Did PROMPT work? Yes, it did work. She was able to get Alanna to learn new words, like "on", "open", "ball", "more". Alanna was paying attention, clearly motivated, clearly understanding speech was expected, but she just couldn't get her mouth to move in the right way to make the right sounds. After hours of therapy we did get her mouth to move in the right way, but she had difficulty switching (say from an open mouth for open to a closed mouth for more). Open and on were good, ball was coming, bubbles had a good approximation, but "more" was "open" and then "buh". Working on "more" turned everything into "mama". So it appears we are back to the beginning again.

Alanna's recurrent pattern is always to get to five or six words and then as new words are learned, she loses the ability to say the words she knew before because she seemingly no longer can make the sound properly.

What's the verdict? The speech-language pathologist has told me that the inability to make proper sounds and switch between sounds is typical of speech apraxia, but that "losing" words once learned is not. Regression is more typical of autism, but usually if there is a regression it is more global and not specific to one area, due to seizures or major life changes.

We will try for several more weeks to see if this pattern continues. If so, then we will discontinue speech therapy because it is expensive and is not breaking the cycle.

I used to have great hope Alanna would be able to use speech as a primary form of communication, but as time passes, I have to admit that I am less hopeful. It breaks my heart.

Pottytraining FAIL

2011-03-19T17:26:00.000-07:00

This is Alanna's elimination chart. As you can see by this graph, toileting is not going well. It will drive you to drink. It's hard. And for us, it appears it is going nowhere. We don't think Alanna is getting it.

The most frustrating thing is that she is doing pretty well with her therapists. Just not with us. Except for a couple of really bad days she is getting 80-100% success in six hours of therapy time. It's the rest of the day she is not. Why is this? We suspect it's because therapy time is structured and Mom and Dad time is not. She is allowed to stim and then it's waterwork central. Even if we took her every ten minutes, she could still soil her pants.

Maybe she's just not ready?

I Have A Secret

2011-03-12T19:40:00.000-08:00

Pssst. Hey you. Yeah, that's right. Come over here.

I have a secret. You'll want to know it, trust me.

Shhh... ready?

I think your son might have autism. You should check it out.

And this is where I wake up from my dream before the guy in question punches me out or otherwise inflicts extreme physical violence.

Having read a lot on autism and spoken to many clinicians, I have a little autism detector in my brain I can't turn off. I can't help myself... I screen every child I run into. I'm no psychologist and do not pretend to be able to diagnose autism, but there have been a few times where it is so obvious to me it's like the kid spray painted "I HAVE AUTISM" on the wall.

For example, let's take today. I was at a playgroup with Tyler. I saw a Dad with his 2.5 yr old son. I said hello to the son. He was not interested in looking at me or responding to me at all, even when I was quite annoyingly persistent. While he was verbal, his speech was limited to one word phrases and the articulation was unclear so he obviously had a speech delay. He had no interest in the other children despite repeated attempts by his Dad to get him involved. He played very independently - using many toys appropriately, but was very quiet and generally ignored any attempts by his Dad to join him in his activities. At one point, he decided opening and closing the door was quite fun and when his Dad removed him from this perseveration, become quite upset and told his Dad "No". He joined the rest of the kids for bubbles but was very focused on the bubbles and again ignored the children.

I said to the Dad, "Wow, your son plays so independently." He replied, somewhat embarrassed, "yeah, we are trying to socialize him but he's not getting a lot of opportunity." I left it at that... perhaps I would have had more of an "in" with Alanna there. Perhaps I weirded him out by trying to engage his son so much.

To me this kid was likely on the spectrum. He may not have full blown autistic disorder but he definitely had red flags for ASD. But I couldn't tell this first time Dad, could I? I debated it. I really did. But in the end it wasn't my business and I know so many parents struggle with denial.

How would you react if a stranger said, "Excuse me but I think your child may have autism. You should get him evaluated." Assuming you even knew what autism was, you might be very angry with this stranger. Perhaps someday you would be thankful, but at that moment you'd be angry.

Perhaps I am just chicken. I worry that this child will not be identified until he is four if he doesn't attend pre-school. But it really isn't my business, is it?

Adventures in Toilet Training

2011-03-08T18:09:00.000-08:00

Well, here we go. Alanna started toilet training yesterday. We have been preparing for this day for months. Alanna was de-sensitized to the toilet first, then we allowed her to pee on the toilet throughout the day. Now we bring out the big guns - bye bye pullups and hello underwear with Kushies.

Yesterday we had a strong start - almost four hours without an accident and only going every 45 minutes. Today we dropped that to 30 minutes because of several accidents, and now I suspect we'll be asked to drop to 15 minutes. It's very difficult to get anything done when you're taking a child to the toilet every 15 minutes. Alanna's biggest problem now is that I don't think she really cares if she is wet. It's funny because if she spills liquid on her shirt, she gets quite upset and takes it off... but peeing in her underwear is not a big deal. Perhaps we need to even remove the Kushie and just let her soil her pants.

Today we had a lot of accidents but ended on a strong note - a bowel movement in the toilet!

Doing this every 15 minutes is going to be killer. But it will be so worth it when she trains!

Autism Reality in Ontario

2011-02-23T05:40:00.000-08:00

I have been looking for the benchMARKED film for a while now - this is a production of the Ontario Autism Coalition. It's a good introduction to autism and the realities faced by families in Ontario. A warning before you watch - the film is a downer and I think the producers meant it that way, so watch it when you're in a good mood. (If you get a warning saying you have to download a player, just refresh the page and fast forward to where you left off to continue.)

Also, here are some updates since this mini-documentary was made:

Paul Ceretti lost his appeal and Delanie was ejected from IBI.
Mackenzie, Paul's other twin daughter, was also ejected from IBI.
On a positive note, Paul has found a way to train students and other volunteers to continue this therapy for his girls on some level.
I have no updates on the McIntoshs.

Psychometrics Here I Come

2011-02-17T13:56:00.000-08:00

Because the regional autism programs in Ontario rely so much on standardized testing to determine how well intensive ABA (known as IBI in Ontario) is working, I have (probably not surprisingly to some readers) taken an active interest in psychometrics - instruments, theory and interpretation. It's really quite fascinating, but at the same time - potentially unfair - to children with autism and their parents.

There are two measures of importance that regional autism providers use to determine if IBI is effective. The first is called adaptive behaviour. A measure of adaptive behaviour is basically a test that determines how well - compared to children of the same age - a child is able to function "in the real world". Examples include understanding when people give instructions, being able to ask for something, using the toilet, making phone calls, understanding that cars are dangerous, how to make friends, following rules, and how to play on a playground or cut with scissors. It essentially covers everything we need to do in order to live independently "normal" lives. Some psychologists use it as a measure of development because if someone has the adaptive behaviour of a two year old, they will mostly act and behave like a two year old does, even if they are say, four. This is vastly different from intelligence (discussed next) because it is a very practical measure. Someone with high IQ could potentially solve differential equations but yet be unable to make change. Making change is much more practical (i.e. useful in everyday life) than solving equations (and more of the population can do it), so it's an adaptive behaviour but solving equations is not.

Most people with autism have severe deficits in adaptive behaviour. If they didn't, they wouldn't have autism. Usually as children with autism age, they continue to develop, but still slower than their peers, so their overall level of functioning continues to become more delayed. If intervention can slow the delay by increasing rate of development, the Ontario regional autism providers deem IBI to be successful.

Intelligence is a completely different matter. Although many estimate 75% of children with autistic disorder (not Asperger's or the generic PDD-NOS) to have a cognitive disability (IQ < 70), some do not have a cognitive delay or intellectual disability. This is another important measure guiding discharge for IBI because if a child has an IQ equivalent of 24 month old and has adaptive behaviour around 24 months (or lower) and little change is observed, they typically will discharge from IBI with the explanation that the child has "maximized their potential given their cognitive functioning."

There are two types of intelligence. Crystallized intelligence (often abbreviated Gc) is intellectual ability for a particular task. Generally tests that look for Gc are verbal tests and involve vocabulary and knowledge of the world. Children with autism usually do poorly with Gc. It is very difficult to do a verbal test if you can't speak. For this reason, good psychologists will measure non-verbally, using the non-verbal part of a test, or a non-verbal test that provides a full scale IQ.

Fluid intelligence (often abbreviated Gf) is general intellectual ability that can be applied in all situations. It is usually tested with non-verbal tasks, such as doing puzzles, mazes, replicating block designs, remembering things, visualizing 3-D shapes in your head, etc. Children with autism do much better at these tasks because they don't require language.

If you are interested, here are some common tasks that measure Gf that have been adapted for use on most modern IQ tests, such as Weschler tests:

My Autism Heroes: Carly Fleischmann

2011-02-14T13:06:00.000-08:00

This is a photo of Carly Fleischmann with Temple Grandin. Not surprisingly, Carly has said that Temple is her "hero". Both have overcome incredible disability to be able to communicate and function in this world.

What makes Carly a hero to me, besides her obvious courage and tenacity, is how much she reminds me of Alanna. I pray Alanna learns how to talk, but she struggles with apraxia and Carly does too. But Carly found her voice - despite being non-verbal, she is able to communicate very clearly in written form, and thus verbally through technology (such devices are called voice output communication aids). This gives me hope that even if Alanna cannot speak, we may hear her voice anyway.

I do not believe Alanna is non-verbal because she has nothing to say. She clearly wants to speak but just can't. When her speech language pathologist tries to manipulate her mouth to make phonemes, Alanna welcomes it because she knows she needs the help to make the sound! She is almost saying, "that's it, help me say it!"

Carly gives me hope for Alanna. That makes her a hero to me. Thanks Carly.

Autism Rates Rise Again

2011-02-09T08:30:00.000-08:00

This recent article from the Ottawa Citizen is reporting that the CDC in the United States estimates Autism Spectrum Disorder prevalence at 1 in 91 children (about 1.1% of the population) and 1 in 58 boys (1.74% of boys). This is a huge increase from the early days of 1 in 10000 births (0.01%). What was once a rarity is now becoming more and more common. A typical elementary school of perhaps 500 students will now include between five and ten students on the spectrum.

Will the prevalence reach 5% of boys in the next 20 years? Governments need to prepare now for this inevitability, while researchers continue to work to determine what must be the missing environmental trigger for this disorder.

In Ontario, this means:

More trained ABA therapists graduating from Ontario colleges, and appropriate placements for them to gain valuable experience.
Mandatory training for Educational Assistants (EAs) working with children on the spectrum.
Increased funding for the Autism Intervention Program - there are over 1,600 kids waiting, and this will get worse, not better, as prevalence continues to grow.
Better access to early diagnosticians for autism.
A plan and individualized funding for community care and involvement for adults transitioning from school.

Special Education Satire

2011-02-05T18:32:00.000-08:00

I am personally dreading the day we put Alanna in school. She does so well with IBI and she has the right supports. I am not convinced she will get this in school. My wife came across this video and I have to say - this is what I'm afraid our conversation with the school board will look like...

Return to Speech Therapy

2011-01-26T19:25:00.000-08:00

Speech therapy has been very hit and miss for us. We've had seven different speech language pathologists since Alanna was diagnosed. What I have learned is that a speech pathologist's effectiveness varies widely with their experience in treating children with autism and speech motor disorders. It also very expensive - about $110/hour. When I think that one hour of speech therapy costs the same as four hours of ABA therapy, I start to think that that hour better be very productive!

I am pretty excited about our newest speech-language pathologist because of her experience with oral-motor speech disorders - namely apraxia of speech. Today during therapy we discovered that Alanna wants to say the right words (we knew this) but has no idea where to put her jaw, lips or tongue to make the right sound consistently. When the speech-language pathologist started moving her mouth, lips and jaw into the right positions (allowing Alanna to make the right sounds), she started to grab her hand and put it on her mouth as if to ask, "please help me make this sound!"

Alanna does have two consistent words as of late - Mama and apple. Here is a video of her saying both words... though the apple is quite faint!!

Reinforcer of the Day

2011-01-25T20:44:00.000-08:00

Kids with autism are strange creatures. Alanna has this new pattern I call "reinforcer of the day". She picks something odd and carries it around with her, and if you take it away, there will be massive protest. On the plus side, it can easily be used to reinforce her during behavioural (ABA) therapy.
Here is a list of things that have served as "reinforcers of the day":

A Backyardigan action figure
Toothbrushes
Hairbrushes
A small washcloth
The letter "A" written on a piece of paper (I'm not kidding)
Spoons
Blankets (she especially enjoys when you fold them up while giving to her)
Various clothing

What makes it funny is that the item of interest varies so much from day to day. We're almost to the point of making bets on what will qualify the next day.

Anyone else experience this phenomenon?

Ontario Ministry Divisions Don't Help Our Kids

2011-01-22T04:56:00.000-08:00

While researching this week (more on this on another post - I can't really talk about it yet), I spoke to several parents and I heard the same old refrain: why can't my child transition from IBI to school more gradually? Their children are six and seven years old, and they currently receiving intensive ABA treatment, but they would like their kids to be in school part-time. In Ontario, this is not an option; children are either in full-time IBI (intensive ABA) or they are in school. The school system does not provide adequate ABA supports because the education system does not provide adequate training or resources in the system.

So, parents are left with two bad options. They can keep their child in IBI, getting the supports they need to have their child learn, even if they want their kids to socialize at school. Or, they can leave ABA behind completely and try the school system. This makes the waiting list worse because parents fight to keep IBI at a cost of $60,000 a year when less expensive supports would work just as well, if the government would allow a gradual transition to school and boards allowed behavioural therapists in the school system.

The parents to whom I spoke want their kids in school now. But they can't because it means no ABA support. So they are stuck, and meanwhile 1500 kids can't get service.

Here is what would be, in my opinion, the best solution:

1. Regulate behavioural therapists so that the education system will not be afraid of them. The school system allows other regulated professionals in the school, such as occupational therapists, but those therapists are regulated. This is long overdue in Ontario.

2. Transfer the Autism Intervention Program (AIP) and School Support Program (SSP) from the Ministry of Child and Youth Services to the Ministry of Education. One mandate, one minister, one system.

3. Allow a gradual transfer from intensive ABA to school. Almost all intervention programs advocate this. It is more natural, it is what parents want, and it will allow more children to receive service more quickly.

4. Allow the professionals in (1) into the school system to provide proper supports to teachers and para-educators like educational assistants (EA)s. Parents will even pay for this, saving the education system money in the long term.

Thankfully Alanna avoids this whole problem by entering IBI at 2.5 years old. She will probably be ready to transition by the time she is 5 or 6 years old. But we are in the minority. Most children receiving IBI are 6 or 7 because they had to wait 4 years for service.

Does the government ever ask the parents what they should do?

Facing the Firing Squad

2011-01-15T16:55:00.000-08:00

This week, we visit with Thames Valley Children's Centre to do a six month standardized test - our old favourite, the Vineland-II. I have mixed feelings about this visit. On the one hand, we know we will still some nice gains reported, but on the other hand, as Alanna ages, even though her "age equivalent" scores will increase (essentially, her developmental age in a particular area), her "standard scores" (corrected for age) will likely drop or remain stable. My suspicion is that her communication and socialization scores will drop, but her daily living scores will come up (even the standard scores) because we have been working hard on self-help skills and helping out around the house (domestic skills). This is actually a typical autism profile - higher "daily living" skills, lower communication and even lower socialization, although in Alanna's case, I think her communication might be lower mostly because her play skills are bumping up her score (we have focused in this area as well).

Something that has surprised us as we will were preparing for this test is that Alanna's motor skills have been neglected over the past six months. She has not made a lot of gross motor gains and in fact, in some areas, she has caused us concern. Her balance, likely caused by an impaired proprioceptive sense, needs a lot of improvement. She rarely runs because (we think) she thinks she will fall. She trips and falls in general, runs into things, and has fallen down the stairs a few times. She is "pathologically clumsy". In any case, we will likely see a huge standard score drop in motor skills and will have to work hard in this category to ensure Alanna is able to continue to participate in activities later on, like more complex playground equipment, hopscotch, and riding a tricycle.

So while I am hopeful and in some ways happy to see how far she has come, I am also wary of the IBI cutoff boogeyman, the one excuse the autism program can use to claim IBI isn't working for Alanna. So I hope, yet I dread. Zip up the kevlar vests, we're heading in...

PECS and Sign

2011-01-08T18:24:00.000-08:00

For children with autism who are non or pre-verbal, there are two common alternative systems: The Picture Exchange Communication System (PECS) and sign language. By far, PECS is more popular. It is easier for adults to understand, and also, as a selection-based communication method, is easier to teach children how to use.

Alanna is currently in "Phase VI" of PECS - the final stage - where she is learning to label and comment. For example, she might choose two pictures, one "That is" and one "ball" and put it together on a sentence strip to say "That is a ball".

We are very grateful for PECS because it is the system Alanna uses functionally. She has some words, and is learning some sign, but most of her communication is via PECS.

Having said this - there are problems with PECS. Although PECS brings language out in some children, it does not seem to be doing so with Alanna. Her imitation skills are finally getting to the point where she is able to imitate signs closely enough to make them useful. So we are teaching sign as well. One of the nice things about sign (other than the fact that we think it is bringing out more speech for her) is that it is more natural in conversation. She can face me and sign and I can sign back and pair it with words. Pausing to wait for her to find a series of pictures in a book and give it to me make the conversation much slower.

So, here's my take on the whole PECS versus sign debate... most kids need PECS to start because their imitation sucks (a hallmark deficit of autism), and because most people do not understand sign language. However, signing with family is great if it can be taught because it makes conversation more natural. It's also good in a pinch if you lose a picture or forget the whole communication book (I have turned around many times in the car because I forgot Alanna's communication book or we lost a key picture). I'll be interested to see if it brings out more language for Alanna. So far, so good. We've been teaching her book and ball, and lo and behold, I've heard both words out of her lately!

As for being able to talk - we want this so much for Alanna, but we think she suffers from apraxia of speech, which makes it so hard for her to talk. Hopefully, with some speech therapy, she can get more consistent with making sounds. More on this in another post!

Sick, sick, sick...

2010-12-27T03:29:00.000-08:00

It's been a long two weeks. Both Mom and Alanna got gastroenteritis, then we've had something like the flu the last week. Sickness and autism do not mix well. When my son was sick, he enjoyed cuddles and I felt I could "do" something to help him feel better, even though I really couldn't. But Alanna, with her limited expressive communication, couldn't express her discomfort in any meaningful way. We have not taught her to say "I don't feel well" using PECS, sign, or any vocalization yet, so the alternative is the old standby - crying, howling, and being generally miserable. I tried to comfort her, and although she is generally quite affectionate (a fact for which I am most grateful), she would have none of it while she was sick. I suppose I cannot fault her much for it seeing as when I was sick I would be happy to just be left alone (that could also be just wanting a break from the kids though too!)

While I am a biomedical skeptic, I can definitely understand the premise that kids with autism who feel physically ill are going to have behaviours and not gain skills to their potential.

Compassion

2010-12-11T05:23:00.000-08:00

One of the things that has really struck me since Alanna's diagnosis with autism is how it has personally impacted my world view. A person in a wheelchair, a person with an obvious intellectual disability or other condition would have probably gone unnoticed by me in days past. I might have been polite, even moderately helpful, but probably noticeably uncomfortable and any help or social contact given would have been primarily motivated by wanting to disengage as quickly as possible. Let's face it - people are in general not comfortable around those with disabilities. They do not know what to say to such an individual, or they may be simply afraid of them. Children intuitively sense this from their parents and learn this response unintentionally.

When I was in university I had the opportunity to do a bit of street mission. What struck me most in that short time was that most of all, the homeless people on the streets wanted to be acknowledged as human. They wanted to be able to share their stories and not be treated as if they didn't exist. I have to admit, after that experience, I tried, when I could, to not treat a beggar like a slot machine for my guilt, but rather, to try to treat them like a person and understand their stories too.

This is the same reality for those with disabilities. It is easier to pretend they do not exist, like the homeless (or criminals, or other undesirables) than it is to engage them as just another person.

A wise person once told me that he knew within a few moments of meeting a person whether or not they would be generous with their time or money because of a true generous spirit rather than guilt. He said, A man who believes he is where he is because of his own actions believes he deserves his fortune. But a man who knows he has his fortune because he was chosen to have it will be more willing to give it up for the service of others.

So, I challenge you dear reader - the next time you see a person with a disability, engage them, get to know them. If you don't know what to say or what to do, say so. It may seem uncomfortable to you, but realize that the person you are addressing probably already knows this and has answered many such questions before.

How do I play with Alanna? She is not responding to me.
Why doesn't Alanna talk?
You're in a wheelchair - do you want me to kneel when I speak to you?
You're struggling walking, should I be helping you?
I know it's hard for you to hear, does it help to speak more slowly?

Having a child with autism has made me a much more compassionate person. I am starting to see others as God's children, people to be loved and celebrated, and that although people have and always will make poor choices, many people are where they are because of circumstances too.

Before you think I am going to sprout "autism is a gift" nonsense, let me be frank - it's not. It sucks and I hate it. If I could do anything to make Alanna's autism go away tomorrow I would do it in a heartbeat. I simply wanted to point out that in our life circumstances, we can choose how to react - to learn and grow, or to be a victim. I am thankful I can understand others better - even if, given a choice, I would have preferred to never have had such an understanding. Perhaps that makes me a terrible person. I just think it makes me human. Like Alanna. Like all of us - with or without disabilities.

How to Hire a Therapist

2010-12-02T10:56:00.000-08:00

This was how I was feeling the other day when our longest serving therapist for Alanna announced she was resigning. In truth, I am very happy for her - she is moving on to a solid full-time job at the school board. She will be in classrooms and has years of experience working with kids on the autism spectrum. Some lucky parents are going to be fortunate to have her around for their kids.

On the other hand, she has been with Alanna since she was 22 months old, and she knows Alanna inside and out... she calls them Alanna's "tells". This is important because she can adapt her instruction based on how Alanna is reacting. This takes a long time to develop well. So I am admittedly very bummed about this situation.

Luckily we have already hired a replacement for this therapist. Here is my advice for hiring therapists. As always you are free to take it or leave it, or better yet, improve on it.

First - unless you are lucky enough to be in an area with private agencies (which in Canada is pretty much only the larger urban centres of at least 500,000 people), most therapists are independent. In the South West catchment region for Ontario's Autism Intervention Program, there are no local agencies, though I am aware of a pre-school type program operating in Windsor.

Here is what I've found:
1. The majority of therapists are women. This is not very surprising in a profession working with younger children. Also, men are likely to face huge obstacles (read: bias) against them because of the vulnerability of the population. I am normally very positive about men working with children. However, the thought of a male therapist alone with my little girl for hours a week, often working on things like toileting just doesn't sit with me. It's completely unfair but that's just the daddy protector coming out in me.
2. The majority of independent therapists are young. Young being - early to mid twenties. Most therapists who do well at the profession either get promoted to senior therapist positions (writing programming and supervising other therapists), or they leave in favour of something full-time with benefits in preparation for their up-coming maternity leave.
3. Even with good pay and other perks, turn-over will be too high. It takes a long time to train a therapist well, but there are two problems with ABA therapy jobs. First, to make a living the therapist has to cobble together hours with multiple families. The pay is therefore highly dependent on how busy they become. They also have to deal with problems directly with the families and have no one to go to bat for them if there's a working issue. Second, although most therapists enjoy working with children, it is a little isolating. If the child is presenting behaviours (i.e. you are being kicked, punched, bitten) and/or the child is not verbal (i.e., social behaviour is limited), it is a lot of work, and oftentimes there is no gratification because changes can be slow.
4. Like anyone else, people leave for good reasons. They get a better paying job, they want to change to careers, they get pregnant, their spouse got transferred, etc. It all happens to everyone.
5. Experience is great but "fit" is more important. It's great if you can find an experienced therapist, but it will do you no good if the therapist is not experienced with your child's age group, or the way they learn. I'd much rather hire a therapist who loves young children and is enthusiastic than someone who has worked exclusively with teenagers but has years of experience doing it. Remember, this person is going to be spending hours together (probably 1:1) with your child every week. They need to like each other!

I have resigned myself to #3 but wish I could do better. It would be nice if everyone stayed at least a year but I'm not holding my breath. Good times.

Parental Assessment

2010-11-28T17:30:00.000-08:00

The Childhood Autism Rating Scale (CARS) is a common clinical assessment used to determine if a child falls on the autism spectrum. When we had Alanna initially diagnosed at 22 months, this instrument was used (along with many others) to show she had autistic disorder.

Looking back at the clinician's rating (and ours - both were on the psychological assessment), we rated Alanna 47. The highest possible score is 60, and severe autism is anything 37 or higher.

We recently did the CARS together and Alanna's score dropped from 47 (our original score) to 37. This means Alanna (according to us - we are not clinicians) is close to dropping from "severe" to "mild/moderate" (she needs one more 1/2 point to drop to moderate). We were being conservative so I am pretty confident a psychologist observing Alanna would probably rate in a similar way. Here's the cool thing... the cut off score is 30. If Alanna were to drop another 8 points in the next couple of years, she would technically be rated as "not having autism" on this scale.

Now - it's just one scale. Other scales could still rate Alanna has having autism even if the CARS does not. The CARS also doesn't speak at all to her intellectual or adaptive functioning. She could still have serious delays even falling off the spectrum. Still, it is very positive to see that she appears "less autistic" than she used to. Now, don't get me wrong - you would notice right away something is "off" if you met her. But take it from me - she is much less autistic than a year ago. She has come so much out of her shell. In particular (from the CARS) we see she:

Is better at relating to people.
Has become much better at imitating.
Has improved play skills - she knows how to play with some toys.
Can cope with changes in her environment.
Is much less fearful and anxious.
Has better non-verbal communication.

It is nice to see this laid out in an assessment - it confirms what we thought but makes us be a little more critical of our opinions. Sometimes the parents can be too optimistic.

One Little Word

2010-11-21T20:26:00.000-08:00

Words can be famous. They can build up or destroy, be memorable or forgettable. They can make or break you, heal or harm you. They can form a basis for deception, or strung together, tell a lasting truth.

When you can't find the words to say, sometimes you borrow someone else's... a quote added to the beginning of a composition, chapter of a book, or paper in university. People with autism can use echolalia to convey a thought when they can't come up with the words on their own.

I marvel at the power of a word.

Today Alanna looked at me and smiled, then said Daddy. She said it clear as a bell - she was clearly engaged and she knew what it meant. I broke down right there beside her and sobbed. I completely lost it. The hope I had locked deep inside came out all at once and I just couldn't handle it. My wife came beside me and wept with me and cradled my head until I could compose myself.

Before you revoke my man card, you have to understand what this means to me. I have been waiting for this word for three years, not knowing if it would ever come. A child with autism is lost in their own world, and getting them out is a long, tortuous process. Today Alanna was able to do more than just interact non-verbally... she showed recognition and called me by name. It's as close as I've ever seen to her reaching out to me and expressing her feelings - something that comes to naturally to my son and other kids not affected by autism.

If you are a parent who has been through this - or perhaps you are still hoping for this moment, you know what I mean. Something so small, yet so significant. A memory I can hold onto during the bad times, the long nights, or the meltdowns. I hope it will come again many times but there are no guarantees.

To all parents - treasure your children. If they call you by name and recognize your face... if they show you their love, consider it a blessing. It may be second nature to them, but to some parents these are words and expressions they will never hear. They will love their children for years and never know one way or the other whether this is reciprocated. They may dream, or guess, or think they know. But to hear it for themselves is something else entirely.

She said Daddy!

Alanna Turns Three

2010-11-13T20:30:00.000-08:00

I can't believe it - my little girl is three years old in a matter of hours. All this time I've been holding out - saying she is two until she is three. Well, now she is three. To celebrate this milestone we've created a little video on her behalf. Happy Birthday Alanna! You are so special to us and so many other people. Keep amazing us - we know you will!

What is Autism Recovery?

2010-11-05T16:50:00.000-07:00

I have often wondered what the term recovery from autism really means. Most autism treatments do not make this claim. Some ABA providers make this claim, as do some biomedical proponents.

I am not going to comment on biomedical treatments because I have little experience with them nor much belief that they work beyond a gluten-free/casein free diet (In my personal experience only makes autism "better" by making children who have GI issues feel better. This is not the same as "recovering" from the core deficits of autism.)

This recent article by Adrienne Perry, one of my favourite local autism researchers, finally breaks it down for me. According to her study, she defines "best outcome" as:

Testing in the non-autistic range on the CARS.
Testing 85 or higher in IQ - that would be "low average", or in the 16th (or higher) percentile.
Testing 85 or higher in Adaptive Behaviour Composite on the Vineland-II Adaptive Behaviour Scales. This would mean the child is functioning at the 16th percentile or higher overall in their age group. Note this includes social ability.

Of course, just because a child has accomplished "best outcome" doesn't mean they do not have residual affects of autism. By definition, autism is diagnosed based on observed behaviour since there is no known medical test. If a child tests non-autistic on the CARS, they are by definition not autistic. Similarly, if their IQ and adaptive skills (that is, their ability to function in every day life) is close to average then one would expect the child is, for the most part, "recovered".

I think this is something of a misnomer because any "recovered" child with autism has more or less learned how to overcome their disability. But the disability is still there. For example, the CARS will ask if a child is distracted by visual stimuli. A child who has "fallen off the spectrum" may still be distracted but know how to control the distraction, or at least not do it when people are looking. It may not mean they've lost interest altogether.

Recovery or not, I think I personally need to get my head around the fact that autism will affect Alanna her entire life, and accepting that fact is not the same as giving up on her. It's a hard pill to swallow. I haven't taken it yet... but I'm trying.

Why a National Autism Strategy Is Not a Panacea

2010-10-28T06:36:00.000-07:00

Autism advocates in Canada have been working to develop a so-called "National Autism Strategy". The latest has been announced by the Autism Society of Canada as part of the Canadian Autism Spectrum Disorders Alliance. Another pillar of this strategy lies in bill C-360, which will not pass the House of Commons. The bill is designed to ensure ABA and IBI are considered "medically necessary" as part of medicare and thus must be funded in each province. In 2007, the Senate of Canada produced a report on autism services in Canada, making a number of recommendations.

Notwithstanding the issue of adult supports for people with autism (post-education period), most efforts tend to go into school-age or younger children with autism. I will not comment on adult supports since I am not well informed of the issues, beyond anecdotal evidence from parents claiming that they are terribly inadequate.

In Canada, education and medical care are constitutionally controlled by the provinces. Some provinces welcome money from the federal government with strings attached, but some do not (notably Quebec and Alberta). The only way for the federal government to directly help families affected by autism is through the federal spending power, which basically means giving money directly to parents, or giving money to other levels of government but only if the rules set out by the federal government are met.

Without going into all of the politics, this is very difficult given the current configuration of parliament. There is also the issue of singling out autism spectrum disorders as deserving of money but ignoring other disabilities. This is defensible in that the costs of IBI/ABA treatments are high, but then, not all parents with children who have autism use these methods or agree with them.

I am not going to say "no" to more support to families impacted with autism. But attempting to force standards on treatment and detection (medical responsibility) or educational standards on the provinces will not work well. The best we can hope for is more money in the system, hopefully more directed to parents to use as they see fit.

Assessments

2010-10-24T17:43:00.000-07:00

The provincial IBI program in Ontario likes to use two measures of progress - Adaptive Behaviour, like the Vineland II test, and IQ tests, such as the Weschler Preschool and Primary Scale of Intelligence (WPPSI). Some parents do not care particularly about these measures, particularly the IQ test. IQ is notoriously difficult to measure for autistic individuals due to the nature of autism: communication is impaired so it is difficult for the individual to explain what they truly know.

If you live in Ontario and have a child with autism, you need to care about these instruments. In particular, the Vineland II measures "adaptive" functioning. This is basically a test to measure how well your child functions in life as compared to children their own age. When used in an IBI program, it can typically be used to determine a child's "trajectory". For example, in a six month period, is a child in IBI progressing at least six months in development for each domain? If so, they are falling no further behind but not catching up either. Failure to show enough improvement at the right rate results in the conclusion that the child's "development trajectory" is not being changed by IBI and results in a quick discharge thereafter.

The theory of intensive ABA (or IBI in Ontario) is that your child should be showing clinically significant gains across most domains or it is not effective (read: not worth spending $60,000 per year of taxpayer money). However, interestingly a 2006 study based on the autism program in Ontario found that all children, even those who were still progressing slowly, doubled their rate of development while in IBI. From the study:

Rate of Development. As noted above, children were quite variable but, on average, were substantially delayed developmentally prior to the program. In fact, they had been developing at about one-third of the rate of a typically developing child. Children's rate of development (based on the Vineland age equivalent scores) during IBI was approximately double their rate prior to IBI, and this was true for all three initial subgroups, i.e., even the lower functioning children doubled their rate of development, as a group. This suggests that the developmental trajectory of children was altered during their participation in the IBI program. Many children were even developing at a typical rate (although they may not have "caught up" to typical peers).

So if you are parent of child in IBI, or waiting for IBI - pay attention to this test. It is used to make clinical decisions on your child's continued progression in IBI.

Fun with Pumpkins

2010-10-18T20:35:00.000-07:00

This past weekend we decided to take the kids out to grab a pumpkin and carve it up. Alanna did a great job helping us scoop out the "guts". It reminded both of us (Becca and I) of our childhood... we both felt like little kids carving up our jack-o-lantern. Tyler was interested in the pumpkin but once we showed him the guts he was scared of it. Maybe next year little buddy!

Confessions

2010-10-08T19:45:00.000-07:00

I'm starting to get better at comparing Alanna to other kids her own age. Many times, I'm able to accept where the kids are developmentally, and accept where Alanna is developmentally and how she does many things a normal kid does, albeit sometimes in a very different way. However, I've got to confess, I did lapse into my self-pity again this week. A very sweet little girl I know who is a little younger than Alanna saw her Dad after about a 45 minute separation, saw him, and came running shouting "Daddy, Daddy!" only to be picked up in his arms and swung around... naturally she had a big grin on her face. After I got over coveting that simple interaction I realized that Alanna does that with me in her own way. She might try to climb over me, smile, or press her body against mine. If I'm really lucky I might even get a nice hug! It is her way of telling me she missed me.

While I'm confessing, I have another thing to share. My wife sometimes reminds me not to try to plan too far in the future (I am very much long term, forward looking person). With Alanna, it is so hard to tell where she is going to be. Some days, I feel happy knowing she will be herself (and develop as far as she can) and that's good enough for everyone, including me. Other days, I worry myself thinking if I don't keep pushing for the best interventions, she won't make all the gains she could make... and have the best life she could have.

Case in point: transition to school. Alanna probably has a few years before this becomes an issue since she is not yet even three. But when the time comes, do we spend $58,000 a year (how we would even get this money is beside the point) on a designated ABA school like New Haven, where Alanna will certainly learn more skills designed to get to be as independent as possible? Or, would I use that money to save for her future (RDSP) or another a savings vehicle to provide her with lifetime care? Yes, she will probably make some gains in the public school system, but she would make probably greater gains in a special school. However, spending $750,000 until she turns 18 (assuming I had this money) to fund this education vs. saving it for a lifetime care fund is going to be a tough decision. Some argue once the critical intervention time has passed, intensive intervention is not needed. This is the refrain of the Ontario government, which stresses constantly that IBI is "time limited." I am not sure I agree. However when it is your money and you are responsible for the life of a child, it's not such an easy decision. I wrack my brain on this stuff.

So perhaps I should "cross that bridge when we get to it", as my wife likes to remind me. I'll really try. Let's see how long I can put it out of my mind!

Mommy Witch

2010-09-30T16:20:00.000-07:00

One of the things I've noticed about having a child with autism is the perspective it tends to give you. You focus on the positives, the little things - the small victories of daily life. Recently, I was in an airport and had the misfortune of observing a mother with a five year old girl. The mother was "reading" with her daughter, but she was incredibly nasty to her. I heard things like, "I just told you that word", "You've got to do better", "Finally - thank you for getting it right". The mother was rolling her eyes and very obviously angry. The little girl was crying because, surprise, this was not much fun for her. It took some self-control for me to not rebuke this person for being so unsupportive to her daughter. I felt badly for the little girl because if this is the kind of person her mother is, she's going to need a lot of counselling.

At least this kid is trying to read. At least she is talking. Does it matter how quickly she is picking it up? Make it fun for her and she'll learn it. Man, what a witch.

Ride and Stride

2010-09-25T07:36:00.000-07:00

This Sunday we'll be participating in the London Ride and Stride for Autism Ontario. I like this event because it's fun, it involves the family, and the money raised goes directly back to the local community for support and programs. If you are interested, you can support Alanna's team here. Just be sure to note you are supporting Alanna I!

Social Engagement

2010-09-19T16:41:00.000-07:00

I have mixed feelings about Alanna's clinical psychologist lately. On the one hand, he impressed me greatly this week when he said that Alanna is making good progress but he is concerned about her engagement and lack of initiation.
He is concerned she is too passive; taking direction but not initiating on her own enough. Now, I agree with him completely, but Alanna does initiate to ask for things. She asks for things all the time and if she wants you for something, she can be persistent! However, she is often content to observe in a social situation and either zone out or wait to be invited to participate rather than go and do something. For example, at pre-school, she will play with toys, but she will not go and pick something out she likes and play spontaneously. You have to ask her to pick one or show her one to play with it. This is fairly typical of how she is at home as well.

So the psychologist agrees with me in that he believes the ABLLS-R is not helpful for social programming. His solution is to adapt RDI activities to increase engagement and initiation. We will definitely be doing that. However, he is also leery of us consulting with another behaviour analyst to get the programming and training in place. Many ITs are very comfortable with discrete trial but engagement activities need to be more natural environment because by prompting you are kind of defeating the purpose. The person with which we want to consult is someone with lots of experience in this area. We think everyone will benefit from their knowledge. How frustrating!

Issues in Education

2010-09-17T03:05:00.000-07:00

Last night I had the pleasure of listening to Lindsay Moir speak about issues in autism education. The dude knows what he is about - he knows about issues all over the province and how they have been resolved. A few things I learned!

Ontario Spends More on Special Education Funding Per Student Than Any Other Jurisdiction IN THE WORLD.

I found this one hard to believe. But it's not so hard, when he explained that a lot of this money gets diverted from special education to teacher salaries. Last year, enrollment in the local school board dropped by 1500 kids. Only 15 teacher positions were eliminated. Since we know they were not teaching 100 students each, those teachers must have been re-assigned. Teachers in Ontario are expensive. After five years of teaching, many teachers are making $85,000 per year or more and they have the most powerful union in the province. Not only that, but their massive pension plan (well managed too) owns a lot of businesses, so the politics are very complicated. The claim is that, despite huge losses of Education Assistants (EAs) funding is still flowing - and special education money is being diverted to other areas. This is because special education dollars are allocated on per board basis, not per student or even per school!

Your Child's Rights
I found out our children have the right to:

Attend school for a full day, if other children can go for a full day.
Have their needs met properly - can take a variety of forms.
Go to school if not toilet trained.
Be properly supervised for lunch if other children are supervised.

Grants

There are several grants available to school boards. One, the Special Equipment Amount (SEA), allows parents to buy whatever they need for their kids to succeed at school. There is no cap on this amount. This means that, for example, if we needed a speech output device for Alanna at some point, that would get covered. This is good because these devices cost $10,000 or more. There is another grant to get two attendants (EA / Nurse) if your child has severe behavioural problems or is medically fragile (the first can be authorized by a psychologist). And finally there is a grant to educate staff on autism. This is fantastic because most reasonable teachers and support personnel will take the opportunity to be educated if the training exists!

Ways to get an EA

Lindsay was very clear that EAs are only one way to get needs addressed. The other way is basically relying on "volunteers" - students in post-secondary settings who need placements, or seniors. You cannot pay for an EA in the system because the union grieves that as work contracted out. However, there are ways around this. One woman in Toronto contracted an ABA worker to accompany her son 25 hours a week to school. However, the contract stipulated that she was not paid for those hours - they were volunteer hours. However, the woman paid the worker to be "on call" for 25 hours on the weekend. The fact that she had never called on the worker on the weekend was apparently not important. The school board took her to court on this one but lost. I think this is complete nonsense personally. If a parent is going to fund a support worker, why the heck wouldn't the school want that? Yes they can't "control" them but it frees up resources for elsewhere.

You Need an IPRC For Your Child To Be Legally Exceptional

Many schools just try to put children on Individual Education Plans (IEPs) but if you don't initiate the Individual Placement Review Committee (IPRC) process to get your child officially designated exceptional, then the principal can withdraw services at any time. IPRC kids must always have their needs met as specified by the review committee. You can initiate IPRC on the first day of school.

Thanks to Lindsay for a great information session.

Augmentative and Alternative Communication

2010-09-13T18:12:00.000-07:00

If you are a parent of a non-verbal child on the spectrum, you will have agonized over this topic. These children need a way to communicate and in particular to communicate their needs. Without a functional communication system, the child will use other means of communication, like leading an adult to what they want, or crying, screaming, and self-abuse.

The most common system introduced to children is the Picture Exchange Communication System (PECS). The goal of this system is to make a child an initiator (not just a responder) of communication and to understand its usefulness through exchange of pictures for desired items. Later, children can make comments and have simple communication exchanges with PECS. This is the system Alanna uses. There are six phases of PECS; Alanna has remained in phase three for months. Currently she is able to go to her communication book, choose what she wants (or choose something representing a label if we ask her what something is) and bring it to us. If it is a request she does it spontaneously without help and she brings it because she is internally motivated to get something. We have not gone to phase IV because that phase introduces sentence structure, and we had, to this point, been making good progress on speech. The concern from our psychologist was that Alanna could just start saying "I want" instead of the actual items, which she was at that point. However, her vocals have really decreased. Hours of mand training for good clear approximations are now met with silence or throaty "guh guh" sounds. So now the question... continue with mand training with this much intensity or dial it back and introduce more complex PECS to allow Alanna to speak in sentences and comment?

Verbal behaviourists like Dr. Mark Sundburg, Dr. James Partington, or Dr. Vince Carbone are fairly persistent in their view that non-verbal children should be taught sign language. Don't get me wrong; we use a verbal behaviour type therapy approach. However, sign language is not always suitable... Alanna, for example, has a lot of trouble with imitation in general. She is improving, but her language acquisition is much faster with PECS. There is also the problem of usability - most people are not going to understand sign, especially if they are approximations. However, a sentence of pictures is clear to almost anyone.

There are problems with PECS, though. Eventually she will have too many and we will have to switch to a voice system if she is not vocalizing or picking up some sign. To me, PECS seems more functional for long term use, but sign language seems better for learning how to talk. Obviously, we want her to talk!

Here's hoping for some clear direction...

Non-Labour Day

2010-09-06T16:16:00.000-07:00

There was no labour going on today. Today, we met Grandma and Grandpa and took the kids to Storybook Gardens, where they were able to see animals and play on equipment, go through a maze and ride the merry-go-round! Hurray! Thanks to some good therapy, Alanna is able to enjoy climbing on the equipment and sliding down the slide independently. It was great to see her enjoying herself, feeling proud of her independence and us knowing she was safe to do it. Thanks Grandma and Grandpa for a great morning! Also, special thanks to Grandpa for the great photos!

Simple Joys and Decisions

2010-09-04T05:16:00.000-07:00

Alanna is finishing up some imitation programming in head action imitation and foot/leg imitations. She'll next move through the typical ABLLS-R sequence, like mouth/tongue imitations, arm/hand imitations and fine motor imitations.

Tyler, now 15 months, is imitating spontaneously. I don't need a verbal Sd to get his attention, like "hey copy me!" He makes eye contact with me and just tries to copy me, usually correctly but sometimes in a funny way. This morning, I pointed to my nose and he pointed to his head like a gun (maybe he knew what he was doing after all!)

When I see this, I can either respond with a "I wish it it were this easy for Alanna but it's not", or I can find joy in this simple moment of being a parent, having fun, and knowing that I am so thankful he does not experience the same difficulties Alanna does in this seemingly easy task.

Today I choose the latter and I laugh at him - we have fun. This moment never comes for some parents and I am happy it came for me. Beyond thankful.

IBI Helps Most Children to Some Degree

2010-08-30T11:30:00.000-07:00

I was looking through some old links and happened across this link on ONTABA. Adrienne Perry, a professor at York University, has a significant research interest in IBI and is actively publishing on this subject.

Of note from the link above:

Children's rate of development (based on the Vineland age equivalent scores) during IBI was approximately double their rate prior to IBI, and this was true for all three initial subgroups, i.e., even the lower functioning children doubled their rate of development, as a group. This suggests that the developmental trajectory of children was altered during their participation in the IBI program. Many children were even developing at a typical rate (although they may not have "caught up" to typical peers).

Here is an interesting note - even those children considered lower-functioning doubled their rate of development while in IBI. Even those kids "cut off" from IBI because their "trajectory" is not altered doubled their rate of development. This statement tells me that discharging children from IBI because progression is not fast enough is more about money and is not what is best for the child. Putting kids in school therefore would slow their rate of development to what it would have been pre-treatment. Put another way, transitioning to school a child who cannot learn from their environment halves their rate of development.

In a more recent journal article:
Perry, A et al. Predictors of outcome for children receiving intensive behavioural intervention in a large, community based program. Research In Autism Spectrum Disorders (2010).

On the impact of age at entry:

"...if the goal of IBI is to alter developmental trajectories and boost children into the average range, this may only be feasible if children begin IBI when they are very young. Thus, it is critical that efforts are made to encourage early diagnosis and to reduce wait lists and ensure children receive IBI early whenever possible." pg. 10

The above quote comes out of some discussion that "best outcome" cases were strongly correlated with age at entry.

On the use of benchmarks:

"Thus, it seems to us most responsible to offer children with autism an initial trial of IBI, as recommend by the Ontario Expert Clinical Panel and to monitor their progress carefully using clear and specific benchmarks, as recommended by the Ontario Benchmark Development Expert Panel." pg. 12

It is important to note the authors, with the notable exception of Adrienne Perry (to my knowledge) are all current clinical directors in the Ontario IBI program or have been clinical directors in the past.

Yes, I wholeheartedly agree with early diagnosis and intervention. I do not agree with the benchmarks. ABA can help all children regardless of how fast they are developing.

Vocalization Frustration

2010-08-23T18:58:00.000-07:00

My mission in life lately has been to try to get Alanna to talk. The more reasonable part of me says that if I just let her talk on her own and give her lots of opportunity to practice (which she does during her six hours of therapy every day) she will. But the wound up, anal part of me wants progress so badly.

Here's the funny thing. The girl can talk. She has had some great words, many of which are as clear as day. Sometimes, she will echo a word clear as a bell. The problem is that she doesn't retain anything for long. Words that come and go (or have come and gone) include go, muffin, pretzel, bubbles, up, no, ball, sticker, playdough, juice, round and round. She used to also try to read this book called "I Can Dress Myself". It was cute to see. But this was only when she read it over and over again for days. Sometimes we get random echos back for words she hears. It seems like it's all motivation with her.

Trying to run the standard echoic (verbal imitation) types of ABA programs don't work. You can tell her to say "ba", but she has no idea what ba is unless you try to pair "ba" will something she may want, like "bubbles". But she can approximate better than "ba" for bubbles, usually. We have several words we are using Kaufman cards with - starting at a lower approximation and moving to higher ones as she masters the lower ones. Again though I hope as we move up she retains the words. I would much rather her be able to say /b/ whenever she wants than "bubbles" on and off. I'll take slow and steady with retension over long phrases or even words at this point.

This week we are going to see a speech language pathologist (SLP) with some experience with PROMPT. PROMPT is a technique used for dyspraxia of speech, which basically means a person has trouble getting their oral muscles to do the right thing. Obviously to Alanna hearing the sound is not enough to imitate it, at least most of the time. PROMPT is designed to help cue the child by moving their mouths into the right position to make the sound. So far Alanna has been reasonably tolerant of manipulation of her mouth. I hope this can help her make the right sounds! I'm pumped!

Stim Time

2010-08-19T19:20:00.000-07:00

Stimming, or "self-stimulation", is a term many parents who have children with autism understand. Children with autism enjoy many activities that seem odd to us and are generally done alone. Generally I dislike stimming because it's time that could be replaced with more productive activities, but I realize Alanna enjoys it and sometimes she just needs to do it.

Some favourite stims include:

Bouncing on the couch
Kicking her feet
Many different sounds, including a cry sound that is really really irritating
Throwing things and picking them up, then throwing them again
Chewing on inedible things (PECS are a favourite)

Usually stimming means:

I'm bored
I'm tired
I really need sensory input (see I'm bored above)

This one is new and admittedly was kind of funny... (don't mind the highly expensive duct-taped couch).

Could It Be Autism? Part 2

2010-08-17T18:39:00.000-07:00

Some time ago, I posted on our diagnosis experience and what seems to be a general lack of information available to parents with children diagnosed with autism. Unfortunately, an acquaintance of ours recently discovered his son likely has autism. Like we were, they were completely lost and there is no good information available. So, with that in mind, I will give my unsolicited advice. Could it be autism? If you suspect, or know someone who might, send them here and perhaps this will help. This will be of particular help to parents located in Ontario because I know this system best (though I have done some research on BC and Alberta).

Top Seven Red Flags

Your child does not respond to his or her name when you call most of the time.
Your child does not seem to be developing speech normally. If you are not sure, check out this site.
Your child does not seem to know how to play with toys properly. They may ignore them, play with them in an odd way, or play with them in a childish way. They may be obsessed with parts of toys.
Your child does not look at you and try to communicate with you using gestures.
Your child does not point to ask for something or show they are interested in something.
Your child does not shift their attention from you to an object and then back to you again. This is called shared or joint attention.
Your child does not look at you to see what you think before responding to a stranger or trying a new activity. This is called social referencing.

Okay, I'm Worried Now

If some of the red flags sound like your child, the next best place to go is Autism Speaks video library. It will show you typical development versus a child with Autism Spectrum Disorder, or ASD. You'll need to sign up but it is worth it.

The autism spectrum consists of three disorders: autistic disorder, the most severe, PDD-NOS, or atypical autism, which is more moderate because not all symptoms are present, and Asperger's Syndrome, in which children have average or higher than average cognition and no speech delay. Note that while Asperger's Syndrome presents with no speech delay, children with this form of autism have a lot of difficulty with language and how to use it properly.

Now what?

Most people will now say you should contact your doctor. Outside of Canada, this may be the best bet. However, in Ontario, it is faster to engage a clinical psychologist if you can afford one. If you can't afford to go to a psychologist for an evaluation, then you can use the public system but it will take a year to get a diagnosis. You need a diagnosis to access treatments. A psychological evaluation can cost $2000.

If you wish to contact your doctor, you can print off and bring in the M-CHAT, a diagnostic screening tool most doctors should know about. If your doctor agrees with you, they will probably refer you to a developmental pediatrician. Most developmental pediatricians have a waiting list several months long.

If you wish to engage a psychologist, contact the College of Psychologists of Ontario. Use the public registry to find a clinical psychologist specializing in autism (look for psychologists who work with children). Contact them to begin. They will conduct a psychological assessment that will tell you definitively if your child has autism. Note that a developmental pediatrician will probably order the same tests.

While Waiting for a Diagnosis

You should have your child seeing a speech and language pathologist. In Ontario, early childhood intervention services are available. You can also engage in a private service. If possible, try to take the Hanen More Than Words program. It is an excellent parent program and will give you lots of tools to help your child interact and connect with you. The program will likely be offered through your local speech pathologist.

The key to intervention is trying to pull your child into your world. Even though it is difficult, the more time you spend effectively engaging your child, the better.

Got a Diagnosis

Once you have a diagnosis you can move towards treatment. The next step is to contact your autism intervention program (this applies only to Ontario). There are nine regional agencies, detailed here. Once you contact the program, you will have to see if you are eligible. Your child will be tested to see if they are severe enough. If they are not "severe" enough, you will not receive any treatment beyond what you are already receiving and if you want Applied Behavioural Analysis (ABA) - used in Intensive Behavioural Intervention (IBI) then you will have to pay yourself.

Assuming your child is eligible, you will be placed on the waiting list for service. The average wait time is about two years but could be as long as three years. You may receive some service in the meantime; otherwise, you are on your own until service begins. I highly recommend engaging a parent coach to help you through this time. The coach should be an experienced ABA therapist, who you can find on ABACUS. The coach can help you work through some problem behaviours.

If possible, you should try to pay for some ABA therapy yourself. A proper intensive program can cost $50,000 per year or more, which is too much for most people. But you can make progress paying far less. Invest what money you can.

Functional Communication

While you wait for service in IBI, you should try to establish a functional communication system. This is usually sign language or the Picture Exchange Communication System (PECS). Inappropriate behaviour is usually caused by frustration in communication. Replacing the inappropriate behaviour with something like PECS or sign will make things better for you. The parent coach or a speech language pathologist with experience in autism can help you establish a functional communication system.

Importance of Early Diagnosis

If you wait on the public system to diagnose your child, they will potentially not get treatment for three or four years. This is precious time lost. Go with a private diagnosis if you can afford it!

Super Daddy

2010-08-15T10:47:00.000-07:00

So now you get to hear from me...I am Tim's wife, Becca. I hacked into Tim's blogger account so I could make a post about how awesome he is. :) Right now he is upstairs running an IBI session with Alanna just because he knows how much she craves structure, and how IBI has become such a part of her life that it seems we can't live too easily without it.

Last night was a bad night. Alanna was up at 12:00, 2:00, 4:00 and then 6:00...and every single time, her Super Daddy was up taking one for the team...while I slept with my ear plugs in. Sometimes I am so amazed at his patience and perseverance, especially on so little sleep.

So here's to you, love of my life, amazing father and husband. Without you, I don't know what I would do...God has blessed me with you and I am forever grateful.

Question and Answer

2010-08-14T15:06:00.000-07:00

One the nice things about blogging is that with the right tools, you can see how people ended up on your blog. Most non-regular readers come from Google, and it is interesting to see what they searched for to get them here. In this entry, I will share some of that, plus perhaps try to get some more relevant information to the searcher, should they ever come back.

Search term: autism and two months old and staring at trees; staring at trees autism; autistic people hate certain textures.

Entry hit: Sensory Processing and the Autistic Child

This entry is probably the most popular one on this blog; it gets hit all the time, probably because sensory issues are very common with autism and they are hard to understand.

As for the particular searches I am guessing these people were looking for...

Alanna did stare at things for way too long when she was younger and this was a huge red flag for us. As for a two month old - some people claim children can now be diagnosed or at least considered "at risk" this young, but I don't think very many people can do this. Looking back, Alanna had signs at two months but they were very subtle.

On textures - yes, this is true. Many children with autism hate certain textures in their mouths, on their hands, on their bodies. Sensory integration is a therapy that can be used to give these kids more or less sensory input as they need it.

Search Term: ibi ontario 5 year old cutoff
Entry hit: You Reap What You Sow

If the person searching for this was looking for information on cutoffs, let me say this: the age cap has been gone for years. It used to be true that children were discharged from early intervention when they turned six, but that is not true any longer. The government of Ontario fought this in court (Wynberg v. Ontario), and even won, but then decided to remove the cap.

Search Term: autism ontario services best place to live
Entry hit: None

I think this person was looking for where they could live to get the best services. This depends on what you are looking for. If you want the largest variety of services, then go to Greater Toronto. However, most of these require a lot of money. If you are looking for the shortest waiting list for IBI in Ontario, then move to the Southwest region (London, Chatham, Windsor).

Search Term: RDI toy ideas
Entry hit: I Don't Get RDI

Another popular entry. People are looking for more information on RDI probably because you have to pay money to get more information on RDI. I am no expert on this topic, but based on what I know from other families, any and all toys can be used with RDI and the activity is based on your regular family routine. Your RDI consultant would tell you what to do (note: you have to pay for this consultant).

Search Term: why is ibi so expensive
Entry hit: I Really Hope IBI Works

This is a great question. Short answer: IBI is intensive ABA and is a term almost exclusively used in Ontario. It's expensive because to do it right, you need 30-40 hours of intervention per week. Some quick math:

30 hours a week x $25/hour for a therapist x 52 weeks - $39,000
3 hours a week x $75/hour for a senior therapist or BCBA x 52 weeks = $11,700
3 hours a month x $175/hour for a psychologist to supervise x 12 months = $6300

Total cost = about $57,000 per year. That's why.

Graduating More Instructor Therapists Won't Solve The Crisis

2010-08-11T11:05:00.000-07:00

Given the high profile of autism services in Ontario (as a political hot potato), the ministries of Children and Youth Services and Education publish a common newsletter, like this one from Spring 2010.

In it, like so many other documents published by the Ontario government, is a story about how they are increasing the number of graduating Instructor Therapists. In Ontario, an Instructor Therapist (IT) is the front-line ABA worker. While I applaud the government on investing in these college (not university) level programs, they do ignore the core problem: funding. Unfortunately, like many trained teachers, I fear these graduates will be unemployed or underemployed as parents desperately seeking services cannot afford them.

So yes, they are training staff, but they provide insufficient funds to employ them. The local autism programs pick up the best graduates, leaving the rest to find work in the direct funding or private sector.

I am happy to know that hopefully more ITs will be available since finding them is still difficult, at least outside Greater Toronto. But we are one of the lucky families with funding. What about everyone else?

My Autism Heroes: Dr. Ivar Lovaas and Dr. Stanley Greenspan

2010-08-07T16:39:00.000-07:00

I thought it appropriate to group these two "autism heroes" together. This year (2010) has not been kind to great scientists in the field of autism. Dr. Greenspan passed away earlier this year, and Dr. Ivar Lovaas, just last week.

Dr. Greenspan (top) was the leading figure behind the DIR model and Floortime, a popular intervention for autism. While I do not subscribe to everything Floortime, there are a lot of ideas Dr. Greenspan has published that complement and enhance ABA therapy. What I like about Floortime is the simplicity. You don't pay to understand Floortime, much like you don't pay to understand ABA. For this reason, if people are turned off by ABA I usually point them to Floortime over RDI.

Dr. Lovaas (bottom) was the individual responsible for bringing ABA into therapeutic use for people with autism. Without him, we would not have the interventions we do today. Thanks to him, there is hope for my daughter where so many years ago she would have been institutionalized with no hope for a future in this life.

I thank both gentleman from the bottom of my heart. You both will be greatly missed.

Educational Justice

2010-08-03T07:41:00.000-07:00

Recently I was made aware of a judicial case where a mother, in Ontario, was trying to place her child in a regular classroom with support. This had been the scenario since kindergarten, and the student was now moving into grade four.

The special education committee ruled he should be placed in a special education classroom and not in a regular classroom with supports. The parents appealed this ruling to a court, because they felt this was unfair. Interestingly, they brought a local expert to argue that the ABA supports the school was offering was inadequate. However, the tribunal could not force the school board to offer better supports; they could only rule on whether or not the child's placement was adequate.

Many parents are outraged by this. These kinds of cases scare me because I see our future in them.

My opinion:

Is the ABA support offered by the school sufficient?

Probably not. Most parents I have spoken to in the Toronto area have told me the ABA implementation in schools is woefully inadequate and many children are not learning in these classes as they were in IBI.

Is the placement valid?

I may get flamed for this, but it would seem that it is more appropriate, if the child is going to remain in school, to go to special education. If his behaviours are very disruptive to the other students, there is no real choice. We cannot expect a child who is screaming, stimming, or otherwise engaging in disruptive behaviour to be with a mainstream class because those students will be so distracted they may not learn well. Additionally, if the student is functioning at a four or five year old level, there is no way they are learning the same curriculum as a mainstreamed grade four class. It would seem the decision made is a good one.

I think the real underlying complaint in this judicial review is the quality of ABA programming in Ontario schools. The complaint is that, despite an order from the Ministry of Education - PPM 140 - schools are still not prepared for students on the autism spectrum. It is truly unfortunate and infuriating that there are private schools that do offer the support needed - for $50,000 a year. After forking out this amount yearly for private IBI during the preschool years, who has the money left to afford such luxuries?

If school boards cannot provide appropriate supports, then give parents choice in education and issue vouchers like Alberta. Let us choose the supports for our own children.

Alas, I fear the unions will never let this happen. Education for all, and better education for the wealthy. But we don't have two tier education or health, right?

Research Empowers

2010-07-30T10:38:00.000-07:00

I think there are two types of autism families in this world. Families who help others but mainly focus on their own journey, and those families who focus on their own journey, but remain concerned about those people behind them (and to a lesser extent, those ahead of them).

I spend considerable amounts of time looking at autism research (in journals and elsewhere), and I like to support autism research when I can, because only by researching can we unlock the autism puzzle. I am particularly passionate about early diagnosis, something which is difficult and expensive in Ontario. There is a research study being conducted at the University of Windsor on early diagnosis. If you live in Ontario and have a child six or under, please consider participating. It will help researchers understand barriers to timely diagnosis. This will not help you personally if you have a diagnosis already, but think of the families coming after you - can you spare a few minutes to try to help them avoid the heartache you did?

Alanna and Tyler at Play

2010-07-25T19:04:00.000-07:00

This is not much of a post, but I wanted to share this video we took at Alanna and Tyler together. Tyler is being shy, but he fills in the words to "Twinkle, Twinkle Little Star". Alanna joins in to help Tyler get ready for the day :)

Alanna has been working on using her utensils. Here is a recent video of her using a spoon! We are thrilled!

The Power of Play

2010-07-22T07:44:00.000-07:00

We have been spending a lot of time lately in therapy (and trying to reinforce/generalize when we have time with Alanna) developing Alanna's play skills. Play skills are the basis for many other interventions in autism, including Floortime (especially the PLAY project). Now that Alanna is starting to gain some play skills, we can use these opportunities to develop social communication, eye contact and joint attention. Alanna can also begin to play independently in a functional/imaginative way. As she masters playing with different toys, she can then play with them in her playroom downstairs and keep "busy" while we do chores in a way that's functional.

Alanna can:

String beads like no-one's business.
Do a variety of puzzles; as she learns new puzzles she is doing harder ones.
Make pictures with shapes.
Build towers with blocks.
Play with a Mr. Potato Head and put the pieces in random places to make a fun head.
Complete shape sorters.
Feed her little baby, wipe her face, give her a soother.
Cut a piece of pretend birthday cake, put it on a plate, blow out the candles, and decorate it.
Pour herself some tea, drink the tea, put some bread on a plate, butter it (and she will sometimes say "ahm-nom-nom" when she pretends to eat).

When Alanna is doing pretend play, she doesn't do it long because she is not able to think of too many novel actions yet. But she will pretend without any prompts for several actions, and if you were an outsider she would look like a little girl playing with her tea set, for example.

I have often wondered if teaching pretend play in this way is effective because I wonder if Alanna "gets" what she is doing. But then I remember that young children engage in pretend play by imitating what their parents do, and that is how Alanna learned too. Also, I see she generalizes, which tells me she gets it. For example, she might pretend to eat something else other than bread, so I know she gets that plastic food is something you pretend to eat. She feeds her baby but also feeds her bear and even her brother!

Play is an important part of intervention and I am glad we have put some focus on it!

You Reap What You Sow

2010-07-16T12:55:00.000-07:00

Autism Ontario has appointment Dr. Joanne Reitzel to the Autism Ontario Board of Directors. This has proven controversial to many parents because Dr. Reitzel is the clinical director for a regional autism program in Ontario. Her primary job revolves around whether or not children continue or get booted from early intensive behavioural intervention services. I wrote Autism Ontario on this topic, and I was pleasantly surprised with a reply from the chair of the board. She acknowledged I wasn't happy about the appointment, but carefully explained the process of nominations and election, as well as conflict of interest.

Here is an older article excerpt, source here:

As parents across the province rally against wait times for an intensive and effective autism treatment, a Delhi father is demanding answers. David Mels has a five-year-old son, Adam, who is on the severe end of the autism spectrum. He doesn't speak, isn't potty-trained and his gross and fine motor skills are delayed. Adam was denied eligibility to the intensive behavioural intervention (IBI) therapy - a vigorous program funded by the government. The program helps children learn skills using repetition in a one-on-one setting. Mels appealed the decision made by a panel of regional clinical directors, psychologists and doctors at the Hamilton Niagara Regional Autism Intervention Program. The panel decided that Adam's autism was too severe for him to benefit from the therapy. "An independent party upheld their decision," Mels said. "But I want to know why he is ineligible. Show me the clinical and objective proof that says he won't benefit from this therapy. They have yet to show me that." The Autism Intervention Program Guideline, last revised in February 2007, says that intervention services are for children with "autistic disorder or a disorder considered to be towards the more severe end of the spectrum." Dr. Jo-Ann Reitzel, clinical director at the program, said IBI doesn't work with every child. "Every child with autism is unique," she said. "We do a thorough assessment of the child's development, physically and mentally, and identify the appropriate treatment that match the child's needs." If IBI isn't suitable, there are other therapies, although most aren't government funded. Mels believes the government is denying eligibility because it doesn't want wait list to grow. Dr. Joel Hundert, a psychologist with the Behaviour Institute, a private clinic that offers IBI therapy, said many parents feel the same frustration as Mels. "Because eligibility criteria is not objectively stated, it's hard for parents to understand why their children aren't eligible." He said the program is the preferred therapy for kids with autism. "It has hard research and measurable outcomes that proves its success," he said. But he added IBI therapy works best with children with a moderate case of autism. Mels said if he can't get help for his son within the year, he's going to sell everything and move his family to Alberta. "I've been looking into it and it seems they have more accessible funding out there," he said. He has explored private clinics like Hundert's but is unable to afford it without help from the government. "I'd rather move than go bankrupt," he said."

The reason parents are angry is because government assistance for autism in Ontario is focused around a narrow band of kids with moderate-severe autism. If IBI does not work fast enough, the child is deemed too severe and is discharged. If the child is too high functioning they are ineligible. The claim is that "other more appropriate services" will be offered if IBI is not suitable but there's really nothing available, as mentioned by Dr. Reitzel in this excerpt and here in a research announcement. I don't really get why non-intensive ABA is not offered to those on the very severe end of the spectrum.

So it this makes Dr. Reitzel an easy target. She is just doing her job, and part of that is minimizing costs and easing the waiting list. Every child discharged allows another to come off the waiting list, which is always a political hot potato in an election year.

I still feel that given her involvement in the politics of IBI in the province that she is not suitable to sit on the board. However, there was democratic process, it was followed and she was elected. I cannot disagree with this process and one can certainly not say Dr. Reitzel is not an expert on ABA therapy for autism. I do hope she recuses herself from matters involving early intervention policy for Autism Ontario.

Stopped Clocks And Glass Prisons

2010-07-15T12:48:00.000-07:00

Kim Stagliano calls autism the "pain of a stopped clock". It's an apt analogy for some people with autism. For others, the clock is very slow. Trying to "reset" the clock to the right time for someone with autism requires 5,000 rotations on the back of the clock for a second to advance. In essence, you are lucky if you can speed it up some and get it working better, but resetting it is very difficult. As a parent of a child with autism, I have to agree that the picture she shows is painful. She is a toddler in a teenager's body.

This picture is how I see Alanna's mind. The glass is autism. I can see her, but it is very difficult for her to see me. Lately it has been very painful to see her withdrawing. Her eye contact and general attending have decreased. I used to be able to get her attention more easily, but the last two weeks (since the sleep problems began) have been very bad for this. Thankfully she is sleeping better, but she still remains spacey and much less engaged than she was. It is a mystery to me what the change is, but I hope we find out why soon. Sometimes when she looks at me she stares through me, like the boy in this picture - staring out of her prison at vague shapes and noises she knows to be helpful to her without understanding what she is seeing. When the glass becomes more transparent, she can see clearly. When it frosts up, she is lost.

The social deattachment is, in my humble opinion, the worst thing about autism. I could handle physical impairments more easily because I could explain them and relate to my daughter emotionally about how she feels. If she were deaf, she would never hear my voice, and I may never here hers, but I would see she recognizes me and loves me by looking at her. The hours of trying to engage her with nothing to show for it... that's when I lose it. When she is less engaging, it is the most painful. Perhaps worse than a stopped clock.

Autism Wins

2010-07-05T17:12:00.000-07:00

This is how I felt today. Autism beat me down.

As I posted earlier, Alanna has been having a ton of trouble sleeping. This is having a big toll on the family in general, but particularly it is impacting her. She is very "spacey" - it is difficult to get her attention, she is not responding to her name and her behaviours are worse. I hate when she seems to regress. I am hoping it's temporary because every step forward is won through her hard work, and going backwards is so very painful. Lack of sleep is the only thing I can think of - unless the bits of gluten she got are causing the problem.

Today Tyler learned how to drink from a straw. Spontaneously. At 13 months. Part of me was proud of him, and part of me wanted to cry. He took Alanna's straw cup, grabbed it, and drank lots of it as he walked around looking proud of himself. Teaching Alanna how to do this has taken weeks of effort, and he is now more proficient at it then her in about two seconds. It just makes my heart ache for her so much when something this simple is so difficult for her and so easy for everyone else. Meanwhile, on a hot day (low thirties but almost forty with humidex, ugh), she was not drinking much from her straw cup in the hopes her sippy cup would reappear. Learning is hard and transitioning is hard. And my son did both so fast.

Moments like this make me feel like a failure as a Dad. I can't fix it, I can't always make it better, and I try to stay positive and celebrate her successes but sometimes the difficulty is so acute I just lose it.

Autism, you win today. Alanna, Daddy will try to do better tomorrow.

No Rest for the Weary

2010-07-05T07:41:00.000-07:00

Sleep is remaining elusive for us. Our supervising psychologist has us writing a sleep log. We removed Alanna's toddler bed and replaced it with a form mat on the floor. Last night she was up at 4:30am and did not return to sleep. The night before, she was up from 2:30am to 5:00am, bouncing and screaming on her bed, and ditto the night before.

Tyler's room is beside hers. I don't know how he sleeps through it. I do know, however, that everyone, including Alanna, is in a fantastic mood when she sleeps through the night. Tyler is happier and so are we. Alanna is taking 9mg of melatonin at night (two doses, one given only if she wakes), plus she is on the swing to put her down at night. The next most unhappy step will be to visit the doctor and put her on a sedative, but I really, really, really want to avoid that. The girl is two years old and I don't want to drug her unless we get desperate.

We will be trying to adjust her sleep routine with music and calming lights on her walls; I am hoping this helps. For those parents with kids with autism or intellectual disability, I know this is a common problem. I have read countless pleas for help on-line and some kids just do not sleep. So here's a plea... help.

Straws and IQ

2010-06-30T11:12:00.000-07:00

Alanna is engaging in her favourite pastime in these photos: drinking juice. She loves juice. I have several spare PECs on deck for juice because it is what she asks for most frequently. Now, before you accuse me of loading her up on sugar, "juice" is really short for "mostly water with some juice for flavour". Attempts to give Alanna water have so far failed miserably - and attempts to give "wean" her off the juice additive have failed too. We could probably do it if we wanted to, but the amount of total juice she is getting is still not that much overall.

Notice the difference between pictures! The photo on the left is Alanna using her sippy cup. The photo of the right is Alanna using a straw. Woohoo, the girl uses a straw! Most parents, if asked how their kids learned to use a straw, will tell you a story like this: "Well, I had a cup with a straw and she wanted it so I let her try and she liked it." Not this girl. Oh no, not even close. This took weeks of trying, and we finally had a breakthrough when we used a juice box because we could squeeze it into her mouth to show her good things were inside. Every little victory is huge for us, including this one.

On another note, Alanna received her first assessment since beginning funded IBI. Cognitively, she is at the 16th percentile - which translates to an age equivalent of 24 months, or an IQ of 85. This means that Alanna does not appear to have an intellectual disability at this time! We are thrilled with this result because studies have shown that IQ is a major predictor of outcome.

Peng Trial Sets Bad Precedent

2010-06-16T07:52:00.000-07:00

This is not a real person. It's a fake model used for a movie production. But it might be what Scarlett Peng would have looked like after her mother, Xuan, "snapped" and drowned her four year-old daughter with autism. She served a 2 1/2 year sentence for drowning her daughter (after receiving a two for one credit for a five year manslaughter sentence). She intends to return to China and wants to have more children. She is quoted as saying, “I won’t kill another baby, I won’t. I will be a good mother.”

Xuan has bi-polar disorder. The judge said she acted "badly but without evil intent." So this is justice? Two and a half years for murder? Is it understandable to murder children with special needs because yeah, it's really hard to cope sometimes? I'm outraged by this story. Obviously this woman needs help, but she is going back to China, where she will be free to kill any more daughters she chooses.

This story illustrates two things:

1. The Canadian justice system is too soft.

2. More help is needed for parents of children with special needs to cope to prevent these types of tragedies.

For those of you who are feeling some compassion for Xuan, don't think I don't. But there are millions of parents who do not kill their special needs children - the ones who cope, who give up everything for their children. There is a higher standard - a better example to show. Xuan should be in jail, and if I killed Alanna, I should be there too, bipolar or not.

Genetic Testing: Curse or Blessing?

2010-06-15T12:16:00.000-07:00

This article has been very popular on the news. Genetic researchers have uncovered some patterns that can be indicative of autism. Interestingly, the researchers found that some of the gene mutations are also found in people with intellectual disability - which explains why there is a high correlation between autism and intellectual disability.

Don't get too excited, though. Researchers say they can only identify about 10% of possible cases. Peter Szatmari says, "I don’t think we have the science yet to nail it down. … This isn’t one gene, but a profile of genes, a pattern of susceptibility, not cause.”

And therein lies the kicker of this testing. As the sensitivity of the test gets better, there will be increasing demand to do pre-natal screening for autism susceptibility, and this will likely increase the number of terminated pregnancies. In some cases, children will be killed even when they may have never developed autism. Some people do not support tax dollars going to help disabled individuals when the parents of the disabled child knowingly chose to give birth. It is difficult enough to provide for disabled individuals without the stigma of "they should have never been born" crowd.

I am not sure I really support genetic research to identify gene susceptibility, because I do not think it will necessarily cure anyone - it will only allow parents to escape life with a disabled child if they choose to do so. I would rather research dollars go to examining how people with autism process information differently, and how we can alter their brains through treatments to make them closer to how neurotypical people process information. In other words - healing or curing, not detecting.

Early detection is already possible if medical professionals are educated. Unfortunately in my area of the world - they are not, but that is not impossible to fix.

Grounded

2010-06-11T10:50:00.000-07:00

I think sometimes the autism community - parents and caregivers of autism - can become so internally focused on their own struggles that they can miss the far worse struggles of others.

Autism is an expensive disability, yet it is the only disability in many jurisdictions where so much financial support is provided. Without a child having the "autism" label, much of the same supports, such as physiotherapy (or physical therapy), occupational therapy and speech/language therapy are harder to obtain. Perhaps some of this is due to the cost of ABA which is targeted at children with autism. However, I say that people with intellectual disability would also benefit from ABA.

This is polydactyly - an extra digit on the hand. It is apparently common in children with trisomy 13, or Patau's Syndrome. Some dear friends of ours have discovered their child yet to be born has this syndrome. She will not likely live more than a few days. How devastating for them - I cannot even imagine the grief they are feeling and have yet to feel. I don't think it will even come close to the feeling I had in the pit of my stomach when I knew Alanna had autism. It is like comparing a bee sting to heart failure.

So the next time you despair over your loved one with autism, remember they are living with you and remember the hope that keeps you going - and then remember the people who have none. It will ground you a little.

Cookies and Bed Bouncing

2010-06-07T16:37:00.000-07:00

This was the sight I saw when I went to check up on Alanna today. Ever since she got her new toddler bed, she is obsessed with her room and often goes up there, closes the door, and proceeds to self-stimulate herself into a tizzy (don't get me wrong, she is happy as a clam when she is doing this.) I let her do this today because hey, after six hours of therapy I figured she deserved a break. Usually there is much bed bouncing, tossing of books, tossing of small benches, and occasional spinning of her lampshade. The closing of the door is not optional by the way - she becomes very upset if she cannot close the door. It is kind of cute but I suppose we should break the obsession.

In any case, Alanna knows cookies when she sees them. Apparently these were placed a little too low on her shelf after her final ABA therapy session today and she figured she would help herself. I can't blame the kid.

Transitioning to a bed from a crib has been... interesting. The first night, she slept well in it and was thrilled to have it - there was absolutely no protest over the change whatsoever (this due to the fact that beds bounce better than cribs and this is her favourite stim.) The second night she fell out of the bed and woke up quite distraught. To fix this problem, Becca and I ordered a foam barrier and put a foam mattress next to her bed.

Well, unfortunately for us, Alanna figured out that if she could fall out of her bed, then she could certainly get out on her own (this thought did not occur to her the first night). So most nights now consist of bed bouncing and screaming until the melatonin kicks in... followed by more bouncing and screaming at 1 or 2am, followed by more melatonin. We never really know how long she stays up. It's dark in her room so she must move around a ton to make it fun. Most of the time we find her curled up on her $15 foam mattress while her $150 bed is used as a trampoline. I am proud of our investment.

Most mornings when she is up the night before, she is dead to the world until 9am, but therapy often starts as 8 or 8:30am. I guess with the summer we should try to bump therapy to the end of the day and let the girl sleep!

Benchmark Independent Evaluation is not the Issue

2010-06-03T07:10:00.000-07:00

Andrea Horwath, leader of Ontario's New Democratic Party (NDP) has issued a press release on the validity of the independent review of the IBI Benchmarks by Dr. Louise LaRose. She was paid $118,000 for this review and it was "sole sourced" - or awarded without a competitive RFP process.

Ms. Horwath is claiming the review needs to be re-done to be completely unbiased. Personally I think Dr. LaRose was probably professionally able to do this review in an unbiased manner, and I think the real issue is whether or not the benchmarks make any sense.

The nine regional autism providers in Ontario all have their own "benchmark" criteria for continuing in IBI (intensive ABA therapy), excluding the one they started as RAPON several years ago. ErinOak Kids has a continuation criteria document that looks a lot like the benchmarks but they do not call it that. In fact, at TVCC, staff are forbidden from discussing the benchmarks, period.

The benchmarks have been out for at least two years and there are no signs they are being implemented forcibly by the MCYS. I think the hope is that the benchmarks die quietly in bureaucracy while giving the autism programs free reign in deciding when discharge should occur. All of the recent court cases have not been won by the complaining parent, so legally they know the challenges will die slowly but surely as the precedent is set.

My hat's off to Ms. Horwath for keeping the government's feet to the fire on autism funding, even if I think she is asking the wrong question. I might even vote NDP - for the first time ever - in the next election.

Oh Goody, An Assessment

2010-06-01T17:28:00.000-07:00

Tomorrow we return to Thames Valley Children's Centre to do a psychological assessment on Alanna. This is supposed to be our "baseline" assessment. Our future funding depends on how well Alanna does from this point onwards. On the one hand I'm excited to see how much she has improved since November last year. On the other hand, I'm really scared to look at the results... which will be a few weeks in coming.

If Alanna's assessments show improvement, her IBI funding will continue. If not, she will be cut off and transitioned to school.

The two most likely tests we'll see are the Vineland II Adaptive Behaviour Scales, which measure Alanna's ability to function in the real world, and the Bayley Scales of Infant Development, which measure Alanna's skills and IQ.

Alanna, show them what you know!

UPDATE: Alanna really did show them what she knew. The assessment went very well and I think it was a fairly accurate demonstration of her skills. Wooohoo!

Alanna's Ensemble

2010-05-27T11:14:00.000-07:00

We are signing Alanna's contract with Thames Valley Children's Centre tomorrow. I'm pretty pumped to have Alanna's therapy team together. Most of the team is existing from private therapy, but we have some new faces. We have one senior therapist, four instructor therapists, a clinical psychologist and a speech language pathologist. We can consult with an occupational therapist as needed but aren't in active occupational therapy with Alanna. This mostly has to do with the fact that OT services are not covered by our health insurance, but also because Alanna's sensory issues, though significant, are not seriously distracting her. I would like an OT to review an appropriate sensory diet for her though so we can be sure we're giving her the right inputs and fading out distracting inputs. Alanna also has on-going issues with fine motor skills, feeding and using utensils.

So begins our journey with buttloads of paperwork. I will learn the requirements tomorrow but I am sure there are lots of rules to follow, some sensical and others nonsensical. But I'll do whatever paperwork is required if it means we get help!

Yes, I Am Afraid of Wheat

2010-05-20T07:09:00.000-07:00

One of the first things I am often asked about when the topic of autism comes up is the gluten-free, casein-free diet. We started Alanna on a gluten-free diet (we never eliminated casein because we deemed it too restrictive) some time ago. Now that it's been several months, what are the results? I'm not sure if it is impacting her behaviour much but a lot of the elimination problems seem to be better. She still craves gluten though - Alanna likes to steal her brother's bread products. We try not to eat it around her because, let's face it, that's torture.

Gluten-free products are expensive. I want to take her off, especially in the light of this recent study out of the University of Rochester, but I'm too chicken. Bok-bok-bok! I don't want to lose any gains we've made. So she's sticking to gluten-free until we can muster the courage to try to re-introduce anything.

A Tale of Two Therapies

2010-05-17T08:10:00.000-07:00

Okay, okay. This picture is a little on the gross side. But it's relevant to the theme of this post, so bear with me.

You can divide most autism therapies into two camps: those that are done mostly by parents, and those that are not. Some therapies lend themselves to either direction and indeed some research has been done in the ABA camp to see how allowing parents to run ABA affects outcomes.

In the "do it yourself" camp there is Floortime/PLAY, RDI, More Than Words, and biomedical options. ABA can be done this way as well and many people do it.

In the "leave it to the therapists" camp there is ABA, standard speech therapy and occupational therapy.

Most of the "do it yourself" therapies involve therapists setting up programs, monitoring it and providing feedback to the parents. But the parents do the bulk of the work, because after all, the parents are the ones with the children the most - at least, that is generally the way this approach is marketed.

There are definite positives to this approach:
1. Training and supporting parents is much cheaper to governments who are expected to provide intervention for autism.

2. Involving parents to this degree encourages them to accept accountability on how the intervention is working.

3. Parents who are well trained are better suited to continue to teach their children long after the early intervention period.

But there are problems with it too:
1. While we'd like to think most parents are the best teachers for their kids, some parents just aren't. They are not going to do as good a job as a trained therapist. They may lack the intelligence, or lack the time or energy to do a good job. Full disclaimer: I have done ABA with Alanna and after two hours with her my brain is fried. I do not think a parent could realistically do this intensively and properly without help but that is just my opinion.

2. Some parents need to work. Many parents work but do not need to do so (I'm not talking about your neighbours who work to pay for the SUVs they got last month), but some, including single parents, do not have a choice. In this case, the child is not going to properly receive intervention from a program training the parent because the parent may only see them in the evenings and on weekends.

3. As a parent it is very easy to be lazy. Add to that the pressure of turning every activity into something therapeutic and you have a stressed out parent. I do try to incorporate all the principles of ABA and More Than Words into my interactions with Alanna, but it's nice that the "pressure it off" me because I know her intensive teaching time is taken care of.

4. Some parents have multiple children. It is difficult to provide the intensity of interaction with an autistic child when you have another, let alone three or more children! Any time your child is spending off in their own world is wasted, and sometimes you have to let them do that if you have more than one child.

By the way, I should also note I'm not partial to the idea of universal government-funding for daycare (I am okay providing it for those who really need it). Some people believe parents are idiots and the state should raise children. I am not suggesting that at all. We strongly believe in having a parent at home for kids and neither of ours go to child care. However, I do think there is a case to be made for a balanced approach - one where therapists and parents are heavily involved in their child's intervention.

What's your take?

Relief At Last

2010-05-11T19:24:00.000-07:00

Becca received an unexpected phone call today. Then she started to cry. She busted into my office, breathless. Her news caused me to go into shock for several minutes.

We have just secured a direct funding spot for Alanna from Thames Valley. The earliest we expected this news was September. Those of you who are paying privately for Intensive Behavioural Intervention (IBI) know this is the call you wait for. It's like being told you just won $50,000 in the lottery because that's how much it costs to pay for IBI annually, done properly. It will release us from a huge financial burden, assuming she can remain eligible for service until she goes to school. Presently, Alanna is two and a half, so we hope the earliest they could transition her to school would be in a year and a half. Hopefully she can remain eligible until she is five or six, unless she does so well she "recovers" (I use that term to mean she no longer tests in the autistic range in standard psychological testing.)

For those of you still on the waiting list - I expect you'll be happy for us, but also ticked that you're still on the list. We have been very blessed, only waiting nine months. Most people wait two to three years. While the regional system in Ontario works pretty well for us, it sucks if you live practically anywhere else, especially in Greater Toronto or in the North.

The irony is, if we'd waited on the public system, Alanna would just be seeing a developmental paediatrician now. She wouldn't even have a diagnosis yet.

The system isn't fair. But today, I can only look to the future with a renewed sense of hope about possibilities. I'll take that. I could use some hope. We all could.

It's Harder to Understand Than Have Pity

2010-05-08T19:57:00.000-07:00

I went this morning to our local Early Years Centre, which has a special program called "Dads Can Play Too". It's a pretty awesome idea - I was impressed to see that even the play group leader is a dude. I brought both kids; Nana was happy to help watch Tyler while Alanna was running around. I explained to the lady at the desk that Alanna was special needs (and had autism) right before she took off and ran away (her timing was impeccable). Alanna was not herself. She played with almost no toys, had poor eye contact and wandered aimlessly. She took crayons and threw them. It was almost as if she'd regressed six months in six minutes. I don't think I've seen her this "autistic" in a long while. Many of the dads were staring at her. When Alanna was younger, many parents often told me they would never know she was autistic unless I told them. Now that she is almost 2 1/2, this is a much rarer comment. The typical sign is her lack of speech - many 2 year olds at her age are talking non-stop. It was obvious something was different just in the way I spoke to her. As I have been taught, I always use simple speech with Alanna to help her understand what I am saying. I speak slowly and repeat. To a dad of a typical kid it would look pretty odd. Eventually one of the dads I met (his son was playing nearby) asked me, "She doesn't talk much does she?" I explained, "She has autism." He nodded, happy with the explanation but I could tell he didn't really know much about autism. When we were leaving, Alanna had a small meltdown and the women outside watched her with concern, looking at me and her with pity. Everyone tried to be helpful and I tried to be gracious in accepting it.

When I left in the car, I cried silently as I drove home. I couldn't help myself, it was too overwhelming. Seeing Alanna "interact" with a kid her own age was heartbreaking. Talking to the kid was so easy. It was natural. No saying, "good looking", or "nice talking". Just an easy, back and forth discussion. She is so behind, I thought to myself. These things are so hard for Alanna. I forget how hard it is for her until I see a kid her age and see how easy and normal it is for them.

Looking back now, Alanna probably did pretty well. Six months ago she would have melted down and lost it... I wouldn't have even been able to go in. But she went into a completely strange place with strange adults and kids and was able to cope. She was not herself but I am guessing she was overwhelmed by everything and shut it out to cope. She was immediately all smiles and more herself when we got home. So maybe it wasn't a bad outing. I'm trying to think positively here. I know that many of Alanna's repetitive behaviours and unusual interests are greatly diminished from six months ago.

But I learned something today. I have to admit I'm much more compassionate to people with disabilities now that I have a daughter who has one (go figure). If you see a child with an obvious disability (or even anyone for that matter), don't pity them. They are coping and if you feel sorry for them won't make them feel any better. When someone tells you about a disability, they want your understanding. It's to inform you so you know what's going on - it's not an invitation for you to say poor parent, you have a child with autism. I know Alanna has autism. I'm just telling you so when she runs around flapping her arms and doesn't talk you know why.

OK, Now I Get RDI

2010-05-01T19:03:00.000-07:00

I posted this article quite some time ago. It was a pretty active post, with over 64 comments. The gist of my post was that RDI was difficult to understand clearly without paying big bucks to have someone explain it to you.

Well, someone recently provided me a copy of one of Gutstein's earlier books, Relationship Development Intervention with Young Children. Inside I was surprised to find not pages and pages of theory and anecdotes, but activities and exercises explaining how to move through the RDI stages. Finally, something practical for me to look at without words like "dance" or "redo". The activities are clearly laid out with goals that make sense.

What I've found so far is that RDI appears (at the early stages at least) to be a lot like speech therapy. Some of the early activities focus on changing how you communicate with your child, getting the child to pay attention, and sharing enjoyment with activities. A good speech program is Hanen's More Than Words, which has a lot of similarities with these RDI activities. I like what I have read so far - these activities are practical and will help develop the skills I think they claim to develop.

One interesting thing to note is that my suspicion about needing some ABA to get started is probably true. I often wondered what RDI proponents would suggest for a child who completely ignores the world around them. Here's an interesting excerpt from the book I am borrowing:

A small group of children with autism appear oblivious to these methods. They may monitor their communication environment so poorly that they do not even notice your highly emphasized, indirect prompts. These children require an initial behaviour modification approach where they initially learn to respond to direct prompts (emphasis mine).

In other words, some children need some ABA to get started before one can even start these RDI activities. Now that makes sense to me. As Alanna has gained skills in communication and attention our ability to do these kinds of activities is increasing.

Lastly (and I expect to be flamed for this), Gutstein has claimed the reason he stopped publishing these activities was because the ABA crowd was de-constructing them and making them into behavioural programs. I think he has a valid point, but I also think the primary motivating factor was to make his method proprietary and "license" it to franchisees, namely the RDI Consultants. I am sure Dr. Gutstein has done well financially after making this decision. I suppose I can't really fault him for this, but I wish he was more interested in helping parents of children with autism rather than making money.

Till Autism Do Us Part...

2010-04-29T10:49:00.000-07:00

Many media reports on autism like to quote extremely high likelihoods of divorce for couples with autistic children, such as this one from CTV (click on the parent episode) that gives an 80% divorce rate. That means for every five couples who are raising a child with autism, only one will remain together. How very sad.

I have a theory that is not rocket science, nor will it be particularly surprising to many readers: stress can kill a marriage. The higher the stress, the more likely the marriage collapses. It is easy to love your spouse when times are good. You feel relaxed, rested, have time and money to spare. But when times are tough - you're not sleeping, being run ragged and are scrimping pennies together to pay the bills, it is easy to tear up the person sharing your misery. I think this is why it is so hard to truly understand the words, "for better or for worse" - because many people have only seen the better.

Our personal stress has increased tenfold since Alanna was diagnosed. It is hard for me to think of serving and loving Becca (my wife). It's hard to get up with the kids at 5:00am when I am exhausted but know she is too, or clean the house when she told me she would but couldn't get to it. But that is loving her. It is hard knowing we may always have a child dependent on us for the rest of our lives. But caring for Alanna is loving her too.

I would be lying if I said I hadn't day-dreamed of what it would be like to have no children, to be free of responsibility. I am sure Becca has done the same. But she is my wife and I am her husband and I promised to be there, through thick and thin, autism or no. And for my kids, I am their daddy - I promised to provide for them, protect them, and teach them. I promised both of them the day they were born. They have no rings to prove it, but I remember telling both of them quietly as I walked the halls of the hospital holding them close to me, rocking them to sleep.

So go ahead autism - try to break me. You might do it, but the pieces of me will hold onto those whom I love - my wife, my kids, and our lives together. I will hold on until I can't any longer. I promise.

30-40 hours? REALLY?

2010-04-23T13:05:00.000-07:00

Sometimes well-meaning individuals question why I would ever want to have Alanna in intensive therapy for 30 to 40 hours a week when she is currently receiving only 15. I have heard comments like, "shouldn't she just play?", or "won't she get dependent on her instructors if they spend so much time with her?"

I think this stems from a misunderstanding of what autism is and how education treats it. Individuals with autism are completely learning disabled. Most of the time to get started you have to draw them out of their world long enough to even get them to interact with you - this often requires intervention from an occupational therapist to deal with sensory problems. Once a child with autism has some sensory regulation (whether through providing needed stimulation or making an environment tolerable for an over-stimulated child), you have to get them to attend. That is, be able to look at you and pay attention to you for more than 0.2 seconds.

Once a child with autism can attend a little, they can start to learn. But they typically have zero imitation skills, receptive language, speech or expressive language. They have motor impairments. They can lack ability to process tasks cognitively. An autistic child's ability to learn from their environment is essentially zero. So any attempt to allow them to play is likely to result in non-productive self-stimulatory behaviours, like jumping, bouncing, running around, staring at lights, flowers, etc.

Alanna after six months of therapy still has the speech of a ten month old (she is almost two and a half) and the receptive language of perhaps a 13-14 month old child. Socially, she is perhaps in the 16 month range. She is catching up, but she is so far behind. Kids with autism can't play. They have to be taught how to play, just like everything else. Most time on their own is dead time, wasted time. As they acquire more skills and catch up, their "alone" time becomes more productive and the self-stimulatory behaviours can decrease.

Kids with autism need intensive intervention. If they don't get it they may lose skills until they are so developmentally behind their chances at catching up are greatly diminished. Sure, they need rest - time to not think and to relax like the rest of us. But most of their waking hours, like most typical kids, need to be doing very specific educational activities designed to help them learn, because they just can't on their own.

Paranoia is unbecoming

2010-04-19T18:00:00.000-07:00

Here's a recent picture of Tyler. He's about ten months old now and into everything. He wants to walk so badly he is pulling up and grabbing my hands to pull up and walk. Today, he was not well. He coughed to the point of vomiting and was generally very cranky. He also did not respond to his name and would not look me in the eye.

As a parent with a child who has autism, you become a virtual screener of autism with every kid you meet. I've looked at maybe fifty kids since Alanna was diagnosed and they are all fine. I can't help it - I even test them using play so their parents don't freak out. Tyler scared us today. We look at him and when he doesn't respond to his name, it brings all of the terror back we experienced with Alanna. Now, he does a lot of things Alanna never did. I try to tell myself he is fine, but we watch him like a hawk. I think we are paranoid, but we just can't help ourselves. He has a 90% chance of being normal, but that's still pretty bad odds vs. the general population. Please God, let him be autism-free.

I Really Hope IBI Works

2010-04-12T11:52:00.000-07:00

This video below is a new clip from Autism Resolution Ontario, an advocacy group for ABA services in Ontario:

This is the next fear of parents who get publically-funded ABA for their kids - how long will it last? If the autism provider doesn't think your children is "progressing" according to their criteria (each provider has different criteria - there is currently no standard), your child is ejected into the school system.

Here's what I don't really get: the claim for ejecting kids from IBI is that "it's not working fast enough." That is, they do not feel they are "altering the child's trajectory fast enough". Even if the child is learning, they will remain autistic. The solution is to replace an intensive program with a non-intensive program - special education at school... where your child will learn slower. I get the reason, but I wish they would just call a spade a spade. Instead of saying, "IBI isn't working so let's transition to more appropriate supports", they should say, "IBI is damn expensive and it's not going to substantially improve your child's outcome. We'd rather spend this money on a kid who may have a much better outcome. So still he or she is going to learn slowly anyway, let's put them in a learning environment where they can still learn but costs us a lot less money." Of course, no one is ever going to say that to a parent's face.

I sure hope intensive ABA works for Alanna. I'd hate to be in the position of these parents in 8-9 years. So far, so good.