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.
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.
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.
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).
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.
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!
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.
