The pictures set out below this commentary were taken in May 2012 and posted on Saturday, May 26, 2012 under the title Conor's Autism Reality: From Joy To Self Injurious Behavior In A Flash. I was taking these pictures of Conor enjoying a swing on the playground of his old grade school, Nashwaaksis Memorial School. It was early Saturday morning, no one else was around; there were no loud noises or disturbances. The weather was pleasantly cool and mild. Conor was loving his time on the swing and then ... just like that ... he was engaged in self injurious behavior as set out in the last two pictures of this set ... with no external factor whatsoever. Whatever prompted the head hitting and hair pulling of the last two pics was purely internal. His self injurious behavior in this instance was not an isolated occurrence. It has happened before and since. Nor is it always self injurious. There are times when Conor has been aggressive with his mother and father. I have never believed for a second that he actually intends to hurt either of us. Some times he is reacting to external stimuli such as the sound of a phone ringing. It is my belief that when he is aggressive to himself or others he is most often reacting as he did in these pictures to internal disruptions of some kind.
I am not generalizing from Conor's reality to those of other persons with autism symptoms or disorders. I was, from the beginning of my understanding of Conor's condition, and during the early days of my autism advocacy, annoyed with people like Michelle Dawson and Dr. Laurent Mottron whose affidavit evidence as an autism expert supported her application for intervener status when she appeared before the Supreme Court of Canada in the Auton case as an "autistic" to oppose government funded Applied Behavior Analysis treatment for other people's children. I never accepted that my son with severe autistic disorder and profound developmental delays could be represented even indirectly by this person capable of addressing Canada's highest court.
Nor do I subscribe to the unsubstantiated belief that persons with autism are responsible for planned violence like the horror committed in the Newtown massacre by a person rumored to have autism/Aspergers. I do acknowledge though that, at least in my son's case, unplanned, spontaneous, "reactive" aggression to use CNN's Dr. Sanjay Gupta's term, can occur and can occur in a flash. Depending on the setting, for example sitting in the back seat while Mom or Dad are driving, the consequences could be very, very serious. Even in ideal circumstances such as the Saturday morning playground depicted below aggression, whether directed toward himself or those with him, can be serious and frightening.
There may well be persons with autism disorders whose symptoms do not include self injurious behavior or injury to others. Great, I am happy for them. But the public at large should not believe for a second that it is not present in some persons with autism in ways that are not always present in non autistic persons. It is, for many persons with autism, a fact of the brain disorder(s) which manifests in symptoms that we call autism. Research is needed on the internal causes of self injury and aggression in persons diagnosed with autism. Treatments need to be developed. Pretending such internally provoked or aggravated aggression is not part of autism won't make these realities disappear.
Instead of spending years trying to streamline autism symptoms and disorders into one neat package it would be much more helpful if the aggressive component of the heterogeneity of autism symptoms were acknowledged and addressed through research and improved treatments.
3 comments:
Hi,
I am a longtime lurker. I am the mother of a 16 year old with severe autism and I grew up in N. B. The photographs bring me back home so to speak.
Causes of self-injury can be so mysterious. When my son was little we'd do flips. After the third one his eyes would look like Jack Nicholson in The Shining and he would go for our throats; I guess due to vestbular over-stimulation. Perhaps something similar was happening was happening to your son on the swing.
I was very sorry to hear about your son's seizure. I do not know whether you have looked into this, but I recently picked up a book called The Ketogenic Diet - A Treatment for Children and Others with Epilepsy by John Freeman. It references the Johns Hopkins Pediatric Neurology website with info on the modified Atkins diet and some Canadian doctors including some at Dalhousie.
Count me as a big fan of your well- reasoned blog.
Mary
Thank you. And damn the attorneys who have devloped the "autistic" defense, and double damn the self-identified autistics.
Yes, my son has broken my arm... he slammed into me, knocking me into the edge of the table. But, NO no, no, he cannot go get a gun, plan out and enact an act of violence. His actions are immediate, not planned. He does not slow down tp plan. nor does he to consider the consequences. He does not have any idea of how someone else would view what he does - he just plows ahead. Unlike the self-identified autistics, who seem to be able to engage in all manner of abstract and speculative constructs...
It would be nice if the 'Powers that Be' would stop trying to group neurodevelopmental disorders into neatly defined classification criteria (based upon morphology) that look good on paper. These same behaviours that you describe in this scenario are present in many neurodevelopmental disorders to some degree - as well as in several forms of progressive mental deterioration [like dementia].
My daughter has been diagnosed with FASD and is clearly also on the Autism Spectrum, all stemming from terratogenic organic brain damage. These diagnoses are vague implications of what her 'state' may be, rather than clearly defined and specific measures of her disabilities and expected outcomes which can be applied to modify interventions and supports.
It would really be nice to see the development of behavioural management strategies which may be employed as treatments for specific symptomatology.
Our experiences with the medical/professional community are dismal at best, destructive at worst. Granting supposed professionals with wonderous powers to dictate their assessment based upon limited direct experience with affected individuals is obviously a poor application of the scientific method.
The crossover between various neurodevelpmental disorders and their related symptomatology require a completely different approach than the traditional method of pigeonholing. Unfortunately correcting this situation would take a complete rejigging of modern medicine away from the established cult-like Hero worship that doctors have enjoyed for centuries.
It always shocks me when I discuss statistical measures with medical professionals and discover that they barely possess rudimentary mathematical comprehension of the methodologies involved. Pop-psychology and pop-medicine have become the bane of anyone in need of long term strategic interventions. If it can't be mitigated by the application of a short term strategy, or simply masked by drugging affected individuals into an easily managed stupor then it just gets ignored.
I fear that you and I are barely heard voices in the wilderness of media hype.
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