Rebuttal: The Autistic "Advantage"

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

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

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?

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

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

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

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.