Today was the first day back to school after Christmas vacation in our school district. For Conor that meant return to his Teacher Aides, his structure and routine and ... his Applied Behavior Analysis, (Discrete Trial Training version). And he couldn't wait to get back to school this morning. Conor was dressed, had his back pack in hand, and was on the step eager to get to school ... a good 20 minutes before it was time to leave.
There are some very high functioning autistic adults who claim that ABA violates the human rights of autistic persons and deprives them of their personalities. Some of those who make the claim are very intelligent and articulate adults who were not even diagnosed as autistic until their late teen and adult years; some had no involvement with ABA. These anti-ABA activists, by virtue of their excellent communication skills, do not share the same realities of life as Conor. Conor is echolalic, with limited understanding and command of language, without ABA we would have had no effective way to communicate with and teach him to adapt to the world, to the best of his ability, as we all must do.
The anti-ABA activists do not speak for Conor. He speaks for himself when he waits eagerly for his ABA therapist to arrive at home. Conor speaks for himself when he dresses for school 20-30 minutes early; eager to get back to school to his Teacher Aides, his routines ... and his ABA (DTT) based education.
ABA is a violation of Conor's human rights? A theft of his personality?
Conor's happy face says otherwise.
autism
You seem to be ignoring the anti-ABA activists because you assume that they (1) are all high-functioning, verbal, or otherwise unlike your son, and (2) have less experience understanding autism than the families of autistic children do. These assumptions are patently false.
ReplyDelete(1) The ability to communicate through speech and the ability to communicate by typing are vastly different. Many autistics - in fact, probably most of the ones you're talking about - find typing much easier. One such autistic (whom you'd certainly describe as low-functioning if you followed her around for a day or just watched her YouTube videos) wrote about "Babble and nonsense and typing and speech." (Many other blog posts of hers will address your concerns too, so I encourage you to explore the blog.) The autistic adults doing self-advocacy now used to be like your son and in many ways still are. I repeat: they are like him. The book Autism and the Myth of the Person Alone features several functionally non-verbal, autistic published authors. Parents of autistic children are joining in the autism rights movement as well.
Also, in response to your comment that some anti-ABA adults "were not even diagnosed as autistic until their late teen and adult years," you really should learn your history. Autism was not even listed in the Diagnostic and Statistical Manual of the American Psychiatric Association until 1980 (the DSM-III). At that time, the definition was extremely limited, covering only infantile autism and childhood onset pervasive developmental disorder. The definition of autism was significantly expanded with the 1994 DSM-IV. Thus, many people who are now adults were fully autistic children at a time when their condition was not medically described. Obviously they were not diagnosed with autism until it became a diagnosis. (source)
(2) They are autistic, for goodness sakes! Of course they understand autism better than you do and better than most so-called experts. See The Validity of Autistic Opinions.
Furthermore, you should know that many non-autistic academics are coming to realize that autism has been mischaracterized for years. The autism research by Dr. Morton Ann Gernsbacher describes this viewpoint in great detail. A recent study showed that traditional ways of thinking about autistic intelligence are flawed.
From my cursory read of a few of your blog entries, I can tell that you are a caring parent and truly want your son to achieve his potential and true happiness. I hope that wanting the best for him will inspire you to listen to the people who have been in his shoes before and fully consider all viewpoints in deciding how best to help him.
rachel
ReplyDeleteThank you for your comments. But I disagree with those comments.
I did not make the assumptions you attributed to me when you use absolutes like they are "all". And your points are just a rehash of the standard neurodiversity anti-ABA activist arguments. Like those activists you once again ignore, overlook or show no real understanding of my son's realities.
Saying that "of course" high functioning autistics understand my son's autism because they too are autistic misses the point again as such arguments always do without fail. They are autistic yes. But they have good command of language - whether by oral communication or by typing is rrelevant. Understanding of language is NOT shared by all lower functioning autistic persons. I know this from the experience of living with a low functioning autistic son with limited command of language by any means. Your friends experience as highly articulate individuals whether by typing or oral methods renders their realities fundamentally different. I also know that from the professional literature.
I can not think of a more fundamental difference than the ability to understand language and communicate using language. It is such an important difference that it is incomprehensible to me that you would try to suggest otherwise.
ABA uses behavior as a method of communication. It enabled us to communicate with our son and teach him some important skills, It enabled us to help him learn SOME language skills.
Rachel, instead of reacting defensively, with a knee jerk, reflexive reaction to what I just typed, try to think about how important that is for my son and for his family, for him to learn communication skills by ABA. If you do you might begin to understand the frustration that the hundreds of thousands of parents lobbying for ABA services for their autistic children feel when we see autistic persons with much different and greater communication abilities wrongfully dismissing and detracting ABA in the public view.
And please don't cite Gernsbacher, Mottron and Dawson as though they represent the mainstream of professional thought about autism. They are not. Try reading the American Academy of Pediatrics report from October 29, 2007 describing hundreds of studies over 5 decades detailing the gains made by autistic children with ABA. Try reading the thousands of professionals who have conducted those studies and those who work with autistic children using ABA.
Try reading the articles published by Alan Harchik of the May Institute, Mickey Keenan, the Irish university professor who actually works with autistic children using ABA, or try reading material by Doreen Granpeesheh. Try informing yourself by talking to parents or professionals who actually use ABA in working with autistic children instead of the closed circular reasoning of the ideological opposition of SOME, (not all) high functioning autistic adults to ABA>
As for their diagnosis as adults Rachel, the point of that is that the high functioning autistic persons who claim that ABA violates the human rights of autistic children receiving ABA don't know what they are talking about. THey have no experience with ABA themselves. I do. I see my son's happy face as he waits for his ABA therapist. I see him barely look at me as his therapists enters our home as occurred late this afternoon. They work upstairs and when she arrived, as we chatted briefly Conor said "upstairs" impatiently because he wanted to go upstairs with her and do his ABA.
ABA does not violate my autistic son's human rights. It is those who would deprive him of the benefits it brings who would violate his human rights, his right to be educated to the best of his ability.
Rachel
ReplyDeleteI rejected your last comment.
I did so because you refused my refused my request to address the hundreds of studies over five decades documenting the effectiveness of ABA in helping autistic children make gains in all domains.
And because you refused to address my request that you consider the experience of professionals who have actually worked with autistic children using ABA.
And because you reject the experience of parents like me who work with our children to help them achieve those gains through ABA.
Instead you responded with the same tired ideology of the anti-ABA activists, persons with no first hand experience with ABA and who ignore the vast body of professional literature supporting the gains that can be made by autistic children by means of ABA.
And because you refuse to address the issue of the incredible life differences between those who can write internet essays and address courts and parliaments and those who as they grow older are doing well to be able to read at a Dr. Seuss level.
If you wish to correspond on this forum that is great. But please deal with the subject being discussed.