Conor's Hour In Hell - Autism Reality At The Hospital

Much of the media coverage of autism disorders focuses on "autism is beautiful" ideology promoted by some, not all, persons at the high functioning end of the autism spectrum, those with high functioning autism and Aspergers. The alleged Autism Self Advocacy Network led by a very intelligent high functioning young man with Aspergers, who was only diagnosed with that disorder as an adult, has no problem promoting its views on the Canadian public broadcaster CBC and other major media outlets. Rarely are the realities of autism disorders for the severely autistic brought to public attention.

When the day comes that a CBC reporter leaves his or her cushy office confines and travels to a mental health care institution to observe the realities of severely autistic people living their lives in institutional care I will be very, very impressed. But I am not holding my breath waiting. And I am not sure they even know that the severely autistic exist in such circumstances to begin with. It is much easier and appealing for the journalism autism dilettantes to promote the "positively autistic" agenda and ignore brutal autism realities.

Parents of severely autistic children do not share with reporters at CBC, the New Yorker magazine, and other such media the luxury of autism ignorance. For us autism reality is part of daily life as it was yesterday when we visited the hospital with Conor for a pre-operative appointment. The appointment was to ask questions about Conor's health and have a doctor examine him prior to dental surgery later this month. The actual time with the examining doctor was very brief but after checking in at the appointed time, 8 am, we had to wait another hour before the doctor could see Conor. That hour was no pleasant for Conor, for us, or for those who were also waiting.

During the hour long wait Conor grew increasingly frustrated and agitated. His routine was disrupted. Ordinarily he would be heading to school which he loves. The hour wait was difficult for him and he grew very agitated, screaming, biting his hand several times and at times pulling my hair and pinching my face.

I am not complaining about the hospital staff or arrangements. People at the hospital did the best they could. The doctor had been delayed by a meeting that went on longer than expected. When he arrived he did the examination as quickly as possible knowing that Conor was upset. The staff were very helpful and sympathetic. A nurse went and obtained a popsicle for Conor which helped.

Nor am I complaining about Conor's behavior. In the past he has enjoyed "hospital adventures". Yesterday he did not. Yesterday, for one hour, Conor lived in hell. His behavior did not arise from "being bad" or "misbehaving". It arose because he has a serious disorder, Autistic Disorder, with limited ability to deal with circumstances beyond his control. Yesterday, for one hour, his Autistic Disorder hurt him.

That was autism reality yesterday for Conor. I love him dearly. Conor brings me tremendous joy every single day. I refuse to bend to the "autism is beautiful" propaganda spewed by a self centered group of people with little knowledge of the realities faced by my severely autistic son and who share no common reality with him; yet pretend, falsely, to speak on his behalf.

And I despise the lazy, incompetent journalism that promotes the agenda of the fortunate and ignores the reality of the unfortunate ... the severely autistic like my beloved son, Conor.

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Why I Find No Joy In Autism - Biting and Other Self Injurious Behavior

Above are two pictures taken a short while ago. Conor came home from a great day at school. He sat at a computer as he often does to view some of his favorite sites which he has bookmarked. For some reason, slow loading pages perhaps, I am not sure, Conor became very frustrated with the computer, suffered a meltdown and began biting his hand.

There are those who argue we should find joy in autism, we should view our child's autism as part of who he is and not try to cure him of his autism or change his true autistic nature. To me such reasoning is absurd. Not just wrong but absurd. Self injurious behavior, such as the biting shown above is one major reason why I feel that the joy of autism philosophy is perverse nonsense.

My son is beautiful, in Conor I find great joy, but not in his autism, not in his self injurious behavior.

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Autism's Rotenberg Dilemna

In Autism, Aversives and the Rotenberg School of Shock I set out excerpts from the Mother Jones Article School of Shock which described the use of aversives in treating autism and teen behavior issues at the Judge Rotenberg Educational Center. I commented on that article, expressing my own dismay that the use of electric shock aversives are still permitted in the US today. Matthew Israel, Ph. D. Executive Director of the Judge Rotenberg Educational Center provided a comment which can be found at that location and directs readers to go to a JRC site where Dr. Israel's response to the Mother Jones article, RESPONSE TO JENNIFER GONNERMAN’S ARTICLE, “SCHOOL OF SHOCK” , can be found.

I didn't find time to take a look at Dr. Israel's response until yesterday after being spurred to do so by reading some of the typical Neurodiversity, holier than thou, blogger commentary on Dr. Israel's response. I found that the "autism is wonderful crowd", while expressing the indignation that is almost invariably found in their commentary, did not really rebut or even address the very serious issues raised by Dr. Israel. In his response Dr. Israel referenced some extremely serious, even deadly, self injurious behavior, engaged in by some autistic children, including head banging to the point of brain injury, chewing of cheeks until holes are created, and self starvation.

Dr. Israel's position, as I understand it, is that even ABA, without the use of aversives, is not always able to address these dangerous behaviors. With the use of a mild two second shock, ABA techniques are used at the Rotenberg Center to satisfactorily address these dangerous behaviors and prevent further injury to autistic children and youths. The alternatives are to simply allow these behaviors and injuries to continue or to resort to undesirable treatments like psychotropic drugs and persistent use of restraints or isolation.

If I have misunderstood Dr. Israel's Response on behalf of the Rotenberg Center then I hope that he will again visit this site and correct me. If I did not then I would invite any professional with actual knowledge of these issues who might read this site to offer comment. Either to confirm the elements of Dr. Israel's response or refute them, in whole or in part.

I know that dangerous and even deadly self injurious behaviors are engaged in by some autistic persons. As the father of a profoundly autistic son I have seen him injure himself by biting and almost cause injury to family members. So far, we have dealt with such behavior through the use of non-aversive ABA approaches but that might or might not be sufficient as my son advances through the destabilizing puberty years. I take these issues seriously and I know that it is necessary to look at the hard realities and make hard choices. Information, and evidence, is critical in such difficult decision making.

I reacted with an "oh, no, are they still doing this" response to the story about the Rotenberg center's use of aversives in treating autism but Dr. Israel's response has given me pause to reconsider my knee jerk reaction. If anyone has any hard information and informed comment they can offer in considering these issues your comments will be welcomed.

It is one thing to say the Rotenberg center methods are cruel and inhumane. It is another thing entirely to provide a more satisfactory, effective, alternative in treating some dangerous and deadly autistic behaviors.

That is the Rotenberg dilemna.

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