Autism Conference (Aug. 26-27)
Bill Long 9/4/06
National Safe & Sound Training in Minneapolis
Over a pleasant late-summer weekend in the Twin Cities about 100 or so of us gathered to hear Dennis Debbaudt and others speak about current issues in how law enforcement/first responders and the justice system relate to people with autism spectrum disorders ("ASD"). Though sponsored by the Autism Society of America, the conference was really Dennis' "baby." Dennis is a 29-year law enforcement veteran who became interested in autism issues, like many others, when his son Brad was diagnosed with autism in 1986. As a result, Dennis has dedicated two decades of his life so far to understanding the autism puzzle especially as it relates to how law enforcement and first responders (fire and EMT) deal with individuals who are on the autism spectrum. It is no exaggeration to say that without the force of Dennis' personality and effort the movement to understand and deal with this vital issue would probably not yet even have appeared on the radar screen of police/first responders.
The purpose of these essays is to introduce the ideas of several of the conference speakers. I was impressed at how uniformly high-quality the speakers were. They spoke from a combination of passion and knowledge which will, over time, bring the issue of autism front and center to America's consciousness. I felt privileged to "listen in" on an issue that is growing in importance for me as a writer, attorney/law professor, and student of the human condition.
I. Introductory Session, Sat. 8:30-10:00 a.m.
Even before the conference began I ran into Stephen Shore, whom I had previously met in San Diego when I was visiting Dr. Bernard Rimland and Dr. Stephen Edelson of the Autism Research Institute in mid-July. Stephen is now probably the most visible person in the country who himself has a diagnosis of autism/Asperger's and who speaks regularly about autism spectrum issues/people. We talked for several minutes about the current (1994) definition of autism in the DSM-IV. Two of his points are worthy of note. He believes the definition to be deficient in two respects: (1) that it doesn't deal with sensory issues (sensitivity to light and sounds, for example), which all ASD people have; (2) the definition is framed as a "deficit" model, i.e., it only characterizes what is negative about the syndrome or how it falls away from 'normal,' without recognizing the autistic condition as a set of neutral characteristics which provide challenges and benefits to the person with ASD.
With those helpful insights swimming in my mind, I settled in to hear Dr. Peter Gerhardt (doctorate in education) introduce us to current issues in autism and Ms. Carolyn Gammicchia, a veteran of the Detroit Police Department, speak about risk issues for persons with autism relative to law enforcement.
Dr. Gerhardt began with a definition. Autism is a broad spectrum neurological disorder manifested as a developmental disability that typically appears during the first three years of life. Currently the "spectrum" consists of severe, mild and high-funcitoning autism, Asperger's syndrome, Pervasive Developmental Disorder, and Fragile X syndrome. I want to do more work to understand what is meant by almost every aspect of the definition. It is a developmental disabilitiy, as compared to what? It is on a "spectrum" but is it really a "spectrum" like the "color spectrum?" Is PDD, or PDD-NOS a useful diagnostic category? I didn't raise my questions since, in fact, he was just getting warmed up. He spent most of his time on the communication/social aspects of the syndrome and providing a few statistics (the 1/166 figure for rate of autism for new births of the CDC is now quoted regularly). His approach was that we are all on the spectrum (is this the way that most researchers speak, or does the spectrum only include diagnosed ASD people?) and, to quote a leading researcher only partly in jest: "Autism is the extreme expression of the male brain." He also focused on the obsessive interests and resistance to change of people with autism.*
[*Dennis Debbaudt made a point of emphasizing the importance of "person-first" language is speaking about autism. This means that you describe an individual as a "person with autism" rather than an "autistic person." I am not yet sure how important that distinction is for me, but I accept Dennis' observation.]
He concluded with a comment which was sobering. In his words: "If you meet one person with autism, you meet one person with autism." It isn't merely a tautology, but it points to the fact that each person and family, to paraphrase Tolstoy, suffers the condition in a different way. Therefore, we should probably be skeptical about developing a system or approach that we think deals with all spectrum individuals.
Carolyn Gammicchia spoke about public safety risks that ASD individuals present. Often such a person has accompanying medical conditions (low muscle tone, seizure disorder) and does not know how to calm down when in a stressful situation. An ASD person might practice behaviors that attract attention, such as looking "high," pacing, or talking to himself. Such a person might have a high pain threshold and may not recognize danger. ASD persons often have two rather contrary reactions to sensory issues. Some are hypersensitive (cannot stand bright lights or whirring sounds); some are hyposensitive (meaning that they crave more of a sensation). She gave the example of a man who liked to hang around construction sites and lie down on the pavement near where they were working because he found the pounding sounds to be very comforting. In addition she mentioned sefl-stimulating behaviors, unusual attachment to some objects and wandering.
While both Carolyn and Peter spoke vaguely about the importance of recognizing that it was the Americans with Disabilities Act (and not the "Americans with Disabilities you can See Act") which was passed in 1990, there was no attempt to try to apply that law to the conditions they described.
Finally, Dennis Debbaudt presented us his 20 minute training/briefing video on autism for law enforcement professionals. It stressed that autism is a developmental disorder affecting the brain. Many of the characteristics of persons with autism I have already mentioned were reinforced in the video (sensory overload and "underload"; wandering; communication deficits; objection to routine changes; invading of others' "space"). The advice given to law enforcement professionals was to give a possible ASD person space and time to respond; to repeat slowly what one desires; to use calm words; and not to touch the person. Indeed, not bad advice for lots of human encounters, it seems to me.
Copyright © 2004-2008 William R. Long