Monday, September 19, 2011

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.

Sunday, September 11, 2011

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!