Monday, January 2, 2012

More media attention to autistic adults in the future?

I'm gratified to see Susan Senator and The age of autism are bringing attention to the problems of autism in adulthood which are largely ignored by the media. I wrote about this several years ago.

One of the likely reasons for the dearth of coverage of adult autism is the reluctance to acknowledge the poor prognosis that most with this condition will have once they reach the milestone of their twenty-second birthday. This is the time when autistics age out of the special education system and can no longer get certain services.

Ivar Lovaas' landmark study claimed that approximately half of the children in the treatment group achieved complete normalcy. These children were followed up in adolescence and had maintained their gains. However, Lovaas in his lifetime never published adult outcomes of these children though the oldest are now in their forties. We don't know what became of these children and how they fared later in life.

Other pie-in-the-sky promises are made for autistics with social skills training, speech therapy and other services. The insurance mandates being passed in so many states that autism speaks lobbied for is attempting to fulfil these promises. AS even went so far as to claim these services would make the difference between kids having friends and not having friends.

Ms. Senator, who wrote a book ironically entitled "Making Peace With Autism", now seems to have some trouble making peace with the fact that her son has aged out of this system and the obstacles she now faces as his mother. In spite of the fact that her son received multiple services under IDEA, he has not done well as an adult and Ms. Senator was compelled to put him in a home at age seventeen. Will others on the spectrum do as poorly or better than her son? Time will tell.

Another reason is that not as many adults have been diagnosed as children. Some believe that this is because there were huge increases in autism that started in the 1980s and then took off in the 1990s. Others believe that autism is a much more popular diagnosis because it enables disabled children to get services and cultural shifts in thinking. This debate will probably never be resolved as doing prevalence studies in adults analogous to the ones done on children will never happen. One must remember the analogy about looking for a needle in a haystack. The reason the CDC was able to get nearly 1% prevalence figures in children was because they presented to special education services and such; this does not happen with adults. The Brugha study done in England attempted to address this problem, but likely had a variety of methodological flaws which makes it claims of finding a 1% prevalence in adults dubious.

Now that the year is 2012 and the population of the birth cohorts in which a diagnosis was more common are coming of age. So we're going to see more problems that autistics face in adulthood come to the fore. Ari Ne'eman's no myths video will be shown to be a myth itself. Ne'eman and others like him won't be able to get away with painting a false rosy picture of autistics doing just fine in maturity.
Perhaps this is the start of something new. Adults with autism won't be so invisible anymore. We will no longer regard autistics as Peter Pans who won't grow up. With this new publicity we'll be able to assess how really effective ABA and the IDEA law have been. I realize the insurance mandates are something new. The powers that be may use that as an excuse claim that all hope should not be abandoned.

In the meantime, I hope that Senator's piece as well as the age of autism's coverage will generate even more publicity. Perhaps it's high time those of us who suffer from autism in adulthood get the coverage we deserve.


Anonymous said...

Honestly, the reality is sad. Thousands upon thousands of dollars are handed to centers, such as The May Institute where Senator's son went, by school districts in order to fulfill the requirements of IDEA, however the intervention is called ABA but it is truly crap. Ask many parents visiting it today. Every parent I talk to who goes there for a tour rejects that place after seeing it. It's the same for other kids and other centers. Full of bullshit promises and bad therapy. These centers do some version of crap watered down ABA and the kids seem no further along at age 22 than they were when they were five years old. Ten year olds still wetting their pants, attacking people, no communication and so on. The gut wrenching part is the autistic person is the one who gets the short end of the stick.

It appears that the only people benefitting from autism are the people looking to make money off these interventions which would be fine if they could actually produce some results.

farmwifetwo said...

There are 3 teens/adults on Autism-hub who have had years of ABA... all 3 are high behavioural and with significant challenges. ABA here would have removed them from their therapy long ago and claimed they were "uneducatable". They would have been tossed into an ASD classroom and babysat with regular suspensions.

ABA doesn't teach, it trains. You can use ABA to teach but it takes a lot of time and effort of which school's and parents don't wish to make the time or effort. Parent's get beaten down to where they actually have to ask - as Susan did and I posted twice - about presuming whether or not her son understood her. That is inexcusable. NOT, that Susan had to ask, but that the system put her in a position where she didn't know the answer.

Truth is, there is no answers. When do you start, who do you treat, who do you try to educate, is it worth it since in the end my Russ will still end up in care.... Am I now being cruel to give him the world only to have it taken away as an adult?? So how much money should be spent on long term care vs therapy for toddlers. As one coming into teenage years I'm hoping they start moving some of that preschool money.... and the more they just tossed at it... into long term care.

As a parent, I firmly believe we owe it to them to try. As a parent, we need to get rid of the "one size fits all" therapies. As a parent, we need to decide that we are going to presume everyone can learn, until we can prove otherwise.

I understand and sympathise with the lack of funding, the lack of resources, the lack of trained professionals (although I advoid them now b/c they truly know less than I do).

Anon is correct.... the only one's benefitting from these therapy programs are the practitioners... and they're making lots of money on the autism gravy train and in the end... those with autism aren't getting what they need most.. supports - respite, short/long term care.

It's a be damned if you do... problem.

Anonymous said...

"There are 3 teens/adults on Autism-hub who have had years of ABA... all 3 are high behavioural and with significant challenges."

Yeah, and all three made up their stories. They're kids with identity problems, not autism.

A better future for all said...

Jonathan and Farmwife

If both of you want to get what you want you have to challenge some people's beliefs like this positive attitude nonsense.

Jonathan, I was doing a job one time setting up computers at a public school. Guess what I saw in one of the classrooms. I saw a poster that had a phrase and it said "your attitude is more important than the facts."

This is completely beyond autism. Those who believe this and teach this deny objective reality itself.

This whole country is in major trouble my friend. We as a nation are screwed. Look around you. Our country is disintegrating. More and more people can't obtain jobs. Stores are closing more and more.

Anyone who says these things is chastized that they're whining and complaining. In the minds of some people you would be considered as having a sense of entitlement. If our free enterprise system has worked so well then why is our economy in such shambles and why has the free enterprise system produced quackery products? Why is it socially unacceptable to challenge what is believed in any such way? Why are more homeless people popping up?

Maybe our free-enterprise system is not quite as bad as marxism/lennism but why can't it still be pretty bad?

There are those who say we should just appreciate what I have. There are those who say we should be grateful. I could end up on the streets at any time. It could end up where I end up like the starving children in Africa. Has anyone ever said this to you in your everday life? Do you not see that something is rotten in the state of Denmarck?