Sunday, March 23, 2008

As Autistic Population Ages Are We Ready?

The increase in the numbers of people with autism disorders is heading toward a new and critical phase - adulthood. Like everyone, as they enter adulthood, the needs of people with autism will change. The 1990's witnessed startling increases in autism disorder diagnoses which are now estimated by the CDC to affect 1 in 150 people and 1 in 98 males. There are those who offer their opinions that the incredible increases in autism diagnoses are purely reflective of changing diagnostic definitions and societal awareness but other than the diagnostic definition changes there is little solid evidence on which to base their opinions.

A change in definitions of autism disorders in the Diagnostic and Statistic Manual of he American in the early 90's, widely applied by the late 90's undoubtedly accounts for a significant part of that increase. It is possible also that increased awareness has contributed as well although that is not as clear. Awareness of many disorders and conditions has increased as a result of the rapidly changing technology of communication. Information is more easily and rapidly shared today then at any time in history. There is no obvious reason why greater awareness would increase autism diagnoses more than other neurological or behavioral disorders. In the meantime the boom in numbers of autistic persons is beginning to require that serious attention be paid to the needs for persons with autism in higher education, jobs and residential care for the more severely autistic.

Janet Zimmerman examines these issues in "As autistic children age, society faces challenges"on the Press-Enterprise, PE.com. The article mentions several ways in which college and job challenges are being addressed and speaks to the reality of residential care for severely autistic adults but provides little, other than a parents' hope, on how those serious residential challenges will be met:

"Brandon Woolsey is severely autistic and functions at a first-grade level. He needs one-on-one care, which is rare in the adult day care programs currently available, she said. He also wouldn't do well in a workshop setting because the noise and number of people would overwhelm him, Woolsey said.

But Brandon is good with his hands and does well outside, so Woolsey and her friend are hoping to start a ranch where Brandon and a few other autistic men could live and work in a structured environment tending a garden and horses.

"I said my son is always going to live with me, but the reality is he can't unless we outlive our kids," Woolsey said. "As he got older, I started thinking about what's fair to him as a young man. He deserves to be as independent as possible."

The highest functioning people with autism, with some personalized help, will be able to go to college, hold jobs and live independently.

Those with severe autism may need residential care, day programs and transportation -- all more costly to the system than children being cared for by their families."

Are we, as a society, ready to deal with the tremendous challenges facing us as our autistic population ages? In New Brunswick, unfortunately, we have not yet made a serious effort to meet those challenges.

2 comments:

Ettina said...

That's a big problem I see.
So many 'autism societies' are so focused on early treatment to make autistic kids act as normal as possible, not on helping make sure that those who will never be able to live 'independently' (which is actually a misnomer, since most people in our society depend on others quite a lot) get the care they need, and those of us who could possibly live independently by working 10 times harder than everyone else get the help they need for a good quality of life, and to use their gifts instead of struggling to survive.
I think many of the young autistic kids today are being set up for a big fall, especially the higher functioning kids. By trying extra hard, they manage to do something they're being taught to do, and then people assume it's no harder for them than for anyone else, and build on that skill. The pressure on them gets worse and worse. And then they can't put out that effort anymore, either because they're finally exhausted or they have bigger priorities, and they regress. And what makes it worse is that not only are they trying to do things like dress themselves, communicate, etc, but also things like make eye contact, refrain from stimming, etc. And they are often doing things the 'hard way' (for them) because it's more normal, such as struggling to speak communicatively when they can easily communicate by typing, because if you can speak communicatively, obviously you don't need assistive communication devices, even if speaking is much harder for you than for most people.
One clinical picture almost universally ignored is the 'high functioning' autistic child who in adolescence or adulthood regresses and is then considered low functioning. An example is Amanda Baggs at ballastexistenz.autistics.org. Many of these people describe having been putting out tremendous effort to be high-functioning, until something happens that makes them unable to fake it any longer.

Autism Reality NB said...

Ettina

I am a member of an autism society along with many other parents. We are trying to help our own children. We try to help them improve their abilities and learn as we do with our other children.

Amanda Baggs is not typical of any autistic person I have met and I have met many. She, by her own writings, attended school and a college for gifted young people. She is obviously very intelligent and has great command of language whether she chooses to express herself orally as she did before her autism diagnosis or by a typewriting device as she now chooses to do.

I am aware of children who regress around 2 to 3 years of age but not people, other than Ms Baggs, who regress in their late teens. I am not going to make any allegations about her diagnosis as some have done but she is certainly not representative of low functioning autistic persons in any way.