Wednesday, December 31, 2008

My 2009 Promise To Non-famous Persons With Autism Disorders

To the persons diagnosed with autism spectrum disorders who are not famous this autism dad wants you to know that I will not forget you in 2009.

And I am not alone. Parents, family members, carers and professionals across Canada and the United States will continue to fight for Applied Behavior Analysis intervention for autistic children and adults because of the incredible volume of research demonstrating its effectiveness in helping you make real gains in your life. And researchers and parents with common sense will continue looking for answers as to the cause, and possible cures, for the autism disorder that restricts your abilities to participate fully and independently in all aspects of life. We will fight for you, and alongside you, for decent residential care for all autistic youths and adults.

You have, unlike Albert Einstein, an actual autism spectrum disorder (Pervasive Developmental Disorder) diagnosis, but you will never receive a small fraction of the amount of time and attention that is devoted to speculation that Mr Einstein and other historical geniuses and talents were autistic. You may never pose for articles in New Yorker magazine, or tell breathless, gullible, CBC and CNN reporters that persons with autism disorders do not want to be cured. You probably did not attend a college for gifted youth and you probably do not work as a researcher with prominent neuroscientists and psychologists.

You may live at home, or in a community residential facility. You may live in full institutional care. You may or may not be able to read, and understand, this promise. If you can not then I hope that someone, a parent who loves you, a professional carer who helps you each day, will communicate the message to you in a way that is meaningful to you. Not so much that I personally will not forget you, but that they will not; they will be there for you and they will be focused on you and your needs. They care about you.

And in 2009 this father of a boy with autistic disorder will continue the fight on my son's behalf and on behalf of those of you who DO seek a fuller life through common sense acceptance of the realities of autism disorders, through evidence based interventions, through research into the causes and possible cures of autism disorders. The fight will continue for decent, autism focused residential care facilities.

You are not famous but in 2009 you will not be forgotten. This I promise you.

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Stephanie said...

Yes, despite what other "autistic" people say people with autistic disorder need people to advocate for them, even me, and I know I'm on the high end when it comes to severity. The only thing I have is my little blog, my little corner of the universe, which is more than many will ever have and I can't do much with it.

I also want to add another sad reality: not all parents care about their severely disabled children. My mother repeatdly tried to get rid of me, but my father hung on. I spent my years in institutions and my mother took off and now I live with my father in peace. But I have staff at the mental health center who do care and aren't trying to get rid of me and that help me.

Arthur Golden said...

The truth is important to me, even if it does not seem to fit into my or your preconceived ideas. So let me state some facts about my son Ben that are the truth of his condition when he was the age of your 12 year-old son Conor. My purpose is to make sure that you are really following the truth of "common sense acceptance of the realities of autism disorders." At age 12 for my son Ben:

a. His spoken language was absolutely zero.
b. His recognition of letters and numbers was absolutely zero.
c. His sense of time was absolutely zero.
d. His computer skills were absolutely zero.
e. His reported IQ score (by his public school psychologist) was about 25.

By the way, from the information you did disclose on your blog, it is my impression that at age 12 that my son Ben was much lower functioning than your Conor is now at age 12. Does this statement seem to be the truth to you?

It is my understanding that both of our sons started ABA-type services at age 8. I do not know Conor's functioning level at age 8, but my son Ben at age 8, before ABA, was a danger to himself and to others. So even though Ben's functioning level at age 12 may seem low, we his parents were very satisfied with his first 4 years of ABA-type services because at age 12 Ben's behavior was "controllable" without the use of any psychotropic medications, without the use of any restraints and only with the use of level two aversives such as contingent exercise. At that time, based on our success, I was a strong advocate for the use of ABA. Unfortunately, again at age 13-1/2, despite the continued use of ABA, Ben had a severe regression and his behavior was uncontrollable and by then he was bigger than his all female staff. Thank Heavens in our time of dispair an alternative was dropped into our laps and our son went off to Japan for two years.

I pray you do not face such extreme difficulties with Conor, that seem to have been caused by the hormones that our son Ben naturally had at age 13, and which ABA could no longer handle (at least with the use of only level two aversives that were allowed in a public school setting). That is why I express my concern now that you are really following the truth of "common sense acceptance of the realities of autism disorders." The truth is that ABA is not so perfect as I think you are portraying and you may need to start looking for alternatives without delay.

Arthur Golden

Unknown said...

Stephanie I am happy that you have some caring people helping you.

Unknown said...

Mr Golden

I am glad that the truth is important to you.

If that is so, and if you have read my comments with any degree of care then you would know that I have never claimed that ABA is perfect.

What I claim, and I do so again, is that credible agencies such as the US Surgeon General, the New York State Department of Health, the Association for Science in Autism Treatment, the MADSEC (Maine) Autism Task Force and the American Academy of Pediatrics have reviewed studies over 5 decades that provide a strong evidence basis substantiating the effectiveness of ABA in helping autistic children make substantial,sustained gains in various domains. As the ABA stated in 2007:

"Applied Behavior Analysis
Applied behavior analysis (ABA) is the process of applying
interventions that are based on the principles of
learning derived from experimental psychology research
to systematically change behavior and to demonstrate
that the interventions used are responsible for the observable
improvement in behavior. ABA methods are
used to increase and maintain desirable adaptive behaviors,
reduce interfering maladaptive behaviors or narrow
the conditions under which they occur, teach new skills,
and generalize behaviors to new environments or situations.
ABA focuses on the reliable measurement and
objective evaluation of observable behavior within relevant
settings including the home, school, and community.
The effectiveness of ABA-based intervention in
ASDs has been well documented through 5 decades of
research by using single-subject methodology21,25,27,28 and
in controlled studies of comprehensive early intensive
behavioral intervention programs in university and
community settings.29–40 Children who receive early intensive
behavioral treatment have been shown to make
substantial, sustained gains in IQ, language, academic
performance, and adaptive behavior as well as some
measures of social behavior, and their outcomes have
been significantly better than those of children in control

Jaylynn said...

Here's to you! My son is much older and much lower functioning. When he was young Autism was not yet something that was talked about in public, there were few if any services. Definitely there were no famous people talking about it. Today my son is the Adult rainman but lower functioning. There are no nannies, or hired help to make life easier. There are no monies to ensure his happiness after I die. But as long as I am on this earth he is extremly loved, and puts a smile on my face daily, and I try to put one on his.