Can we cure disabilities?

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!

Assessments

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.

Social Engagement

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!

Question and Answer

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.

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

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.

Grounded

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.

A Tale of Two Therapies

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?

I Really Hope IBI Works

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.

Verbal Explosions

When Alanna was evaluated by a psychologist (twice over), her most delayed area was communication.  On the Vineland II Adaptive Behaviour Scale, Alanna scored in the <1% percentile for communication, which essentially means in a room of 100 random children her age, her communication skills would be the most delayed out of any of the children in the room.  For us, this was quite distressing, since an inability to communicate is a huge impetus towards developing a lot of problem behaviours for children with autism.  Fortunately for us, we were able to introduce the Picture Exchange Communication System (PECS) to Alanna fairly early on.  She can now ask for lots of items, even if she does not see the item, using pictures.  However, what has us really excited is how the mand training we introduced into her therapy has caused a verbal explosion!

Mand training is a verbal behaviour term that refers to teaching a child how to ask for things he or she wants.  The word "mand" is short for "demand".  It's very boring but effective.  Essentially all we do is take a desired item and model the word for Alanna - for example, "muffin".  After several times modelling, we give her a small piece.  When she approximates the word, she gets a bigger piece.  As she is able to say more, we expect more and give her small pieces for responses that used to give big pieces (e.g., "mmm" originally gets a bigger piece but now does not).  She can now say "mufffan" or "muff an", sometimes "muffin". 

This "mand training" combined with her pictures allows her to say or approximate several words.  As she learns more words, other words are sometimes heard spontaneously, such as the "stawberry" I heard yesterday!

Sweet, sweet words.  They are like warm rays of sunshine in the bleak winter.  Keep talking, Alanna!

That's Not So Bad

When we first started Alanna's ABA therapy, we fretted over how much we might contribute.  It's expensive because of the sheer number of hours you spend teaching your child.  If you hire someone to do it, it costs big bucks.  This week, Tyler and Alanna became sick - Tyler especially so.  So three days later there hasn't been a therapist in the house.  For two of those days, Becca and I ran a 2 hour session each, getting through all programs.  It wasn't so bad - tough to do very well but manageable.  Alanna even moved up on some programs to new targets or "lessons".

We were warned when we started ABA that if a parent becomes too involved with the therapy the child will stop thinking of the parent as a parent and will start thinking of them as a teacher whom they have to please to get their desires and needs met.  But these roles are not so different, and we have found at least (so far) doing a session weekly each (about 20% of her total therapy hours) does not change our relationship with her at all.  If anything, it reminds us of the principles of ABA and allows us to apply them daily in her routines.

So this week sucked for the lack of sleep, runny noses, sneezing, vomiting and diarrhea... but did wonders for our confidence in running her ABA programming.  How bittersweet.

My Autism Heroes: Mandy Mason

This is Mandy Mason.  She is one of my autism heroes.  Her daughter, Juliette, has severe regressive autism.  She put together a 40-hour per week intervention for Juliette, much of the work done herself.  Now she operates LEARN, an ABA-based intervention centre in Western Australia.  She set this up herself.  She taught her daughter, and then switched careers to run LEARN, which by all accounts appears to be very successful.  Juliette appears to be doing very well.  I first encountered her in the dark days when Becca and I first suspected Alanna has autism.  We didn't know recovery was possible (although rare).  Her video, showing all the progress Juliette has made, gave me so much hope for Alanna's future.

Juliette, I don't know you, but thank you for being an inspiration to parents, particularly those with girls who have autism.  It gives me hope - even though I know Alanna's future, no matter what it is, is secure.



An update on Juliette from Mandy:
Juliette is now 5, in a mainstream school, she is an absolute pleasure to have in our lives and we continue to work with her intensively. I don't know if she'll ever be able to live independently - her deficits are still very much affecting her ability to interact with the world. She talks non-stop, she loves her sister, she seeks us out constantly, she reads, writes, loves drawing and painting - lots of things I never knew whether she'd be able to do. None of it would have been possible without the use of the principles of ABA. My advice is not to think of ABA as a therapy - but as a set of guidelines to assist you to teach effectively. It does not impact on your ability to parent in the way you want to - it will just help you understand what you are doing better.

Are We Crazy?

This week, we attended our "Parent Orientation" session at Thames Valley Children's Centre for the Autism Intervention Program.  There were six children represented, including ourselves (three couples, two dads, and two moms).  The kids ranged in age from 3.5 years old to age 6.  Alanna was far and away the youngest kid in the group at 26 months.  Every parent in the room relied on the public system for their diagnosis, waiting an average of 1-2 years for a diagnosis.  Not a single child has had any ABA intervention (or probably any intensive intervention of any kind) except Alanna.  Many parents were not even aware ABA services could be purchased privately and most were not aware of the costs.  I felt like a chump seeming "holier than thou" in the group since we've done our research and almost everything presented we learned months ago.

This has gotten me thinking - are we crazy?  We are killing ourselves to pay for Alanna's therapy and while some may argue we have the means to make it work (single parents with other children - it's not going to happen), most parents in the system aren't even aware treatment is possible outside of it.  They are unaware psychologists can diagnose autism and a 1-2 year wait just to get a diagnosis is not necessary.  If one used "the system", a two year old suspected of autism would not receive intervention until they are five or six if they are lucky.

So on the one hand I have to ask myself, if we are the only parents doing this, are we nuts?  Should we back off, restore some sanity to our lives and let the system take over? 

Is the reason the Ontario government can under-fund autism treatment because 90% of parents with children with autism don't know anything about how it works?  It's one thing to be aware of what is available and not be able to afford it, it's a completely different thing to have zero knowledge of it.

Seeing Alanna's progress, I can't bring myself to think of stopping.  We have to soldier on.  The system is a failure.  Crazy or not, our path is set until relief comes (17 months away and counting down) or we collapse from exhaustion trying to make this work. 

Four Months of ABA

Alanna has had four months of ABA and has been doing more intensive ABA (IBI) at 20 hours a week for approximately two weeks now.


What a difference four months of therapy makes!


Four months ago, she communicated her desires by screaming, pulling, reaching and occasionally hitting her head on the floor.  Now, she exchanges pictures for desired items and occasionally vocalizes for desired items!  The screaming and frustration has stopped completely.


Four months ago, Alanna would never look at us or respond to her name.  She engaged in self-stimulatory behaviours ("stims") like bouncing on furniture and running aimlessly around the room.  Now, she gives us good eye contact, responds to her name more often, and prefers to "stim" with one of us (i.e., play games where she can run around or bounce) rather than by herself.


Four months ago, Alanna wouldn't look at objects (track them with her eyes), play with a puzzle (she would throw the pieces), play with a shape sorter (she would throw the pieces and run off), follow any simple commands (come here, sit down, stand up), or perform any imitation of any kind.  She couldn't match letters, colours or objects or do any task that required her to understand matching things together.  She could not throw or catch a ball, or put on her shoes.  Now she can do all of these things (she is still working on the shoes but can do most steps independently).  Her imitation is improving every day and she is learning to vocalize by asking for things she really wants (think muffins!)


Alanna has a long way to go.  She is engaging in parallel play with her brother and friends at daycare, but still has a lot of trouble socializing, communicating and avoiding repetitive behaviour.  But wow, has she ever come a long way.  I can't wait to see where she'll be in another four months.

Here's to Paul Ceretti

This is Delanie and Mackenzie Ceretti.  Their father's name is Paul.  Both children are severely autistic.  Unfortunately for Delanie, her progression in Ontario's Autism Intervention Program is not sufficient and her funding is being cut to allow another child to take her place.  Paul Ceretti did not let this go and took the Ontario government to court to have a judge review the evidence to cease her therapy.  The judge agreed with the ministry and Delanie's funding will now cease.  Delanie will transition to school supports; Mackenzie will continue to receive ABA therapy to catch her up with her peers.


I am completely torn on this decision.  On the one hand, intensive ABA (known as IBI in Ontario) is designed to be effective for two to three years, and not every child responds to it, although almost all children will learn new skills using it.  One could make the argument that there are only "so many dollars" in the budget and the government needs to use those dollars the best way it can.  However, I don't know what progress Delanie has made or on what basis they cut her off.  Perhaps she was making great progress.  However I do agree there is immense pressure to get children out of IBI to keep the waiting lists from growing even longer than they are.


Now, on the other hand, in our socialized medicare system, how many dollars are spent daily on patients who are terminally ill or unlikely to recover?  In our system, we spend dollars until the patient is better or dead.  One could argue the way to stop our ballooning health care budget from continuing to grow is to make better health care dollar decisions.  But it would be an uproar and a media frenzy if a hospital ever told a patient they were discontinuing treatment because they were not responding "well enough" to the treatment.  So in medicare, we keep shoveling money into the system, but for treatment of autism, we maintain our budget.  Let's see how long that lasts in the next generation as autism continues to become more common.


Here's to Paul Ceretti.  You are a brave man and a fighter.  Let's hope I can fight as hard as you can for my own daughter.  I hope I'm up to the challenge.

Waiting to Wait

The local provider of autism intervention where I live is the Thames Valley Children's Centre.  I am happy to report that after eight weeks of "waiting to wait", I can report that Alanna qualifies for the autism intervention program.  Now that we're done waiting to be on the waiting list, we can officially be on the waiting list.  How long you ask?  I don't know.  They won't say.  In fact, the latest from Thames Valley is that there is no "waiting list".  The waiting list for service is a constant thorn in the side of the provincial government, so the latest "trick" is to pretend there isn't one.  After all, once accepted, am I not "receiving service" by attending seminars on what autism is and how it is treated?  I beg to differ.  While I appreciate the politics of this issue, a waiting list is a waiting list.  Either your child is receiving ABA treatment or they are not.  Many are not and if you are unlucky enough to come from a lower income family, you are on your own.  While it is a sacrifice for us to pay for Alanna's therapy at least we are capable.  If you are only making $35,000 a year, paying $30,000 a year for therapy isn't going to fly.  This idea of "no waiting list" is smoke and mirrors designed to confuse parents who do not know much about autism and particularly for those parents who "rely on the system" to take care of their children.  If autism intervention providers in Ontario can convince people that they really are receiving service, then there is no political problem for the current government.


To be fair, the "behaviour coach" is probably invaluable to many parents who have not started an ABA program themselves.  We will certainly take advantage of this service, but it is not the same as IBI, and that is where the gains are made.  Early intervention should be a priority, yet children waste years of potential gains because they are forced to wait.  It's sad.  They have such potential if we would only invest in them.