Sometimes I have a hard time getting started, initiating action, or “switching sets.” For a lot of reasons, I’ve found it difficult to start writing my review of USD’s Winter Autism Institute which I attended last week. It was, in many ways, a revelatory experience for me, far removed from any similar event I’ve witnessed. Upon returning home, I found myself in a rapid cycling mix of joy and sadness. I had read about this place before, a program where respect and inclusion are not just buzzwords but concepts put into action. Now I have seen it for myself, and am fighting the requirement to return to a more familiar world, one determined to change autistic behaviors before it even understands them, determined to eliminate all that is autism while so few even agree what autism is.
At the Autism Institute, autistic people were not presented as puzzles to be solved or problems to be overcome, but as people with whom different types of interaction might be necessary. Behaviors were analyzed for their communicative intent, not treated as abnormalities to be extinguished. Common sense responses were shared to such difficult behaviors as biting, kicking and other forms of injury and self-injury. None of these responses involved countering these behaviors with violence, restraint, medication or imprisonment.
The key was shown to be in recognizing the purpose served by the actions and finding other ways to meet the individual’s needs. Instead of asking, for example, “why does he do that,” we were instructed to ask “why does he need to do that?” A subtle change, yet it can make all the difference in attempting to uncover meaning. Once the behavior is seen as communication, the obvious next step becomes finding a more efficient and less painful way to meet the needs being expressed.
Every human being, the presenters stressed, does communicate. It is when behavior is the only way of getting through to others that we have a real problem. The challenge is to find a means of communication the person can use. This might mean typing or speech therapy, signing, facilitated communication or using objects or pictures to express needs, desires and other thoughts.
I was not the only self-advocate presenting. Peyton Goddard shared her video presentation with an attentive crowd. Peyton is a facilitated communication user and was valedictorian of her class at Cuyamaca College in 2002. She is a poet and artist who devotes much of her time to advocacy work. Is she “high-functioning” then? Well, I suspect few people who met her before the age of 22 would have said so. Peyton had no reliable means of communication for the first twenty years of her life and spent her time in special education classrooms. Her webpage defines autism as “a misunderstood condition that makes purposeful movement undependable.”
Much of the discussion at the conference centered on movement differences in autism. Participants were asked to consider why so many find it necessary to impose a social meaning on the neurological differences which result in “stimming” in autism, but not on the “tics” associated with Tourette syndrome. Rather than ask whether or not such behaviors are intentional, Donnellan and Leary prefer to question whether or not treating the behaviors as intentional would be helpful. If the intent is unknown, perhaps assuming the behavior results from innate movement differences might be more reasonable.
Donnellan and Leary use a definition of “movement” which includes not only observable physical actions, but also speech, thought and emotion. In their book, Movement Differences and Diversity in Autism/Metal Retardation, the authors describe how these differences might influence the development of early relationships and result in the masking of competence.
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Question and Answer segment
There is much more I would like to write about Donnellan and Leary’s presentations, about Peyton Goddard and the other presenters. Possibly, I’ll continue this in another post. I’ve learned not to make promises about this, as it sometimes makes the writing more difficult. As far as the Autism Hub presentation, I wouldn’t know what more to say about that. Meeting Steve D. of One Dad’s Opinion and Do’C of Autism Street was in itself worth cross-country trip. If anyone has questions about the content of our presentation, please leave them in the comments here. If I get several, I’ll address them in a separate Question and Answer post.
At the Autism Institute, autistic people were not presented as puzzles to be solved or problems to be overcome, but as people with whom different types of interaction might be necessary. Behaviors were analyzed for their communicative intent, not treated as abnormalities to be extinguished. Common sense responses were shared to such difficult behaviors as biting, kicking and other forms of injury and self-injury. None of these responses involved countering these behaviors with violence, restraint, medication or imprisonment.
The key was shown to be in recognizing the purpose served by the actions and finding other ways to meet the individual’s needs. Instead of asking, for example, “why does he do that,” we were instructed to ask “why does he need to do that?” A subtle change, yet it can make all the difference in attempting to uncover meaning. Once the behavior is seen as communication, the obvious next step becomes finding a more efficient and less painful way to meet the needs being expressed.
Every human being, the presenters stressed, does communicate. It is when behavior is the only way of getting through to others that we have a real problem. The challenge is to find a means of communication the person can use. This might mean typing or speech therapy, signing, facilitated communication or using objects or pictures to express needs, desires and other thoughts.
I was not the only self-advocate presenting. Peyton Goddard shared her video presentation with an attentive crowd. Peyton is a facilitated communication user and was valedictorian of her class at Cuyamaca College in 2002. She is a poet and artist who devotes much of her time to advocacy work. Is she “high-functioning” then? Well, I suspect few people who met her before the age of 22 would have said so. Peyton had no reliable means of communication for the first twenty years of her life and spent her time in special education classrooms. Her webpage defines autism as “a misunderstood condition that makes purposeful movement undependable.”
Much of the discussion at the conference centered on movement differences in autism. Participants were asked to consider why so many find it necessary to impose a social meaning on the neurological differences which result in “stimming” in autism, but not on the “tics” associated with Tourette syndrome. Rather than ask whether or not such behaviors are intentional, Donnellan and Leary prefer to question whether or not treating the behaviors as intentional would be helpful. If the intent is unknown, perhaps assuming the behavior results from innate movement differences might be more reasonable.
Donnellan and Leary use a definition of “movement” which includes not only observable physical actions, but also speech, thought and emotion. In their book, Movement Differences and Diversity in Autism/Metal Retardation, the authors describe how these differences might influence the development of early relationships and result in the masking of competence.
********
Question and Answer segment
There is much more I would like to write about Donnellan and Leary’s presentations, about Peyton Goddard and the other presenters. Possibly, I’ll continue this in another post. I’ve learned not to make promises about this, as it sometimes makes the writing more difficult. As far as the Autism Hub presentation, I wouldn’t know what more to say about that. Meeting Steve D. of One Dad’s Opinion and Do’C of Autism Street was in itself worth cross-country trip. If anyone has questions about the content of our presentation, please leave them in the comments here. If I get several, I’ll address them in a separate Question and Answer post.
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One more thought from Dr. Donnellan
“We’re really trying to change the way people think about autism,” she explains. “We need to stop thinking about it in terms of the deficits, but to think about how hard these people are trying to be in the world with us. We need to change to support them, because it’s easier for us to change — we’re the ones with the flexibility. Most of the social skills programs assume that all the changing has to be from the side of the person with autism. That’s not a very realistic idea.”
Thank you! Especially for that last quote.
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Sounds like you had a great experience. We all have much to learn. I hope you are able to write more about what you learned there. Very good post with great quotes and insight.
ReplyDelete"Much of the discussion at the conference centered on movement differences in autism. Participants were asked to consider why so many find it necessary to impose a social meaning on the neurological differences which result in “stimming” in autism, but not on the “tics” associated with Tourette syndrome. Rather than ask whether or not such behaviors are intentional, Donnellan and Leary prefer to question whether or not treating the behaviors as intentional would be helpful. If the intent is unknown, perhaps assuming the behavior results from innate movement differences might be more reasonable."
ReplyDeleteThat is a very, very old concept in our house. That is the concept around which Alex's autism was defined, and Alex was raised, since he was 3.