Today was Day Three of the Conference put on by the the USD Autism Institute: "People, Not Packages". I have already described why I feel this has been such a good conference, and there is no need to go into that again. So I will just discuss two points.
First - Stephen Hinkle, along with Jodi Robledo (Assistant Director of the AI at USD), did his first presentation. Apparently, as Jodi explained, Stephen assisted her in a "breakout" session at last January's conference. The attendees were so impressed with his perspective that they overwhelmingly requested that he become a featured presenter. So here he was. The title of the presentation was "After the Final Bell: The Importance of Extracurricular Inclusion." As the title so adequately indicates, Stephen feels that extracurricular activities are what generate positive feelings about school and result in positive memories from school (what he refers to as the "fun half" of school). He states that his epiphany came when a care-worker of his gave him an "assignment" his senior year of high school to attend the Homecoming Dance. He did so, and that night changed his life. It is his hope that, through his explanation of this issue, other kids will not have to wait quite so late in life to have their "homecoming" night. Just a bit more detail on this guy - Dx'd at age 4, recommended institutionalization (in his words: "A life sentence in prison without chance of parole, for no crime committed). Moved from state to state, settled in California, reached full inclusion in fifth grade, graduated San Diego State University with a B.A. in Computer Science in May 2007, hired as Tech Manager for a new High School - good pay, full benefits, no more SSI, no more Medicaid. He said that, had he kept the address through the years, he would have loved to have sent a copy of his college diploma to the diagnosing psychologist - you know, the one that recommended institutionalization. Great line. The only thing that bugged me about his presentation was the crowd reaction. At times, everyone seemed to get a huge kick out of Stephen doing something such as asking the crowd to offer responses to his hypothetical questions. It was almost as if, since he was pretty much skating through the presentation using very typical public-speaking strategies, this was cause for amusement. I may be taking the whole thing wrong, but I found it to be rather patronizing. Oh well, I guess if everyone shut up whenever I thought they should, not much conversation would take place in the world :)
Second, I just want to summarize what I think the Prime Movers of the conference are really trying to illustrate with their research, analysis, and discussion points. Please understand that this is my take on their message, and that I do not want to put words in their mouths. (They = Dr. Donnellan, Jodi Robledo, and Martha Leary).
What I took from it is that we need to move away from the "deficit model" of autism. The DSM-IV-r defines autism specifically by what autistic people cannot do compared to NT's (by the end of the conference, I must state here, EVERYONE was using the term NT - ever since Amanda's video was shown. Amanda - it really does work - you know, Getting the Truth Out :) ). This, in their view, improperly biases observers to look for "voids" of good behavior or existence of "bad" behavior - without ever considering the root cause of any given behavior at all. It leads to the (classic behaviorist) conclusion that "If I can just isolate this one behavior and eliminate it, my subject will become less autistic."
An example (my own, made up right here on the spot): In small children, a commonly observed autistic behavior is lack of response to the child's name being called. The deficit model would indicate any of the following familiar reasons: She is in her own world (isolation) and cannot hear you; He is so focused on the spinning truck wheel (perseveration) that it trumps all other stimuli, She is overloaded with other stimuli and cannot sort your voice from other sounds (sensory integration), etc...
But perhaps it is that he/she does hear, does want to respond, and simply cannot organize his/her sensori-motor system quickly enough that the observer receives a response quickly enough that it is deemed (culturally determined, of course) to be appropriately delivered in an acceptable period of time. Do you see the difference? This really strikes at the heart of Neurodiversity, in my opinion (and the blog, after all, is One Dad's Opinion). If the child were able to organize himself and respond in one second less time, would this, then, eliminate one aspect of his autism? Would this be the determining factor in receiving a PDD-NOS Dx instead of an autism DX? Very interesting stuff, and I like it because it presumes competence. Presumption of competence is a prerequisite to assigning dignity to another person. Words to live by.
Thanks, USD, for a great learning experience.
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18 comments:
I have enjoyed reading your blog about this conference..
I remember going to my first conferences around 1997 or so and hoping for a shred of humanity in the presentations..
Looks like you found some...
...Presumption of competence is a prerequisite to assigning dignity to another person. ...
Great post, Steve, and excellent observation. Thanks again for covering this.
Joe
"Oh well, I guess if everyone shut up whenever I thought they should, not much conversation would take place in the world :)"
I love this comment, Steve.(Still wish they would shut up sometimes, though)
This has been an excellent series of reports. I wish I could have been there, it sounds much more enlightened than the one I attended recently. I appreciate your perspective.
"Presumption of competence" is how Alex was raised from the get go. It was the mantra we used on new school staff (etc) as they entered his life (actually it was "Assume Competence"). When he was young and in daycare (part time for the socialization with "normal" peers) and did not respond to his name, it was because, according to the daycare owner/operator because he did not know his name. (She was *not* getting the "Presumption of competence" message obviously). His wonderful 1:1 worker (Seen & mentioned here) however knew better (in fact it's possible he was typing his name by then). She taught him that when people called his name they expected a reaction from him and taught him the reaction they expected - basically to look/turn his body in their direction (we did not ever make him do eye contact). I remember her explaining to this very little Alex (3 years old?) that this woman (daycare owner) would "get off his case and stop yelling his name" if he would give her the response she was looking for. That instruction, explanation and a little demonstration was all it took. From then on Alex miraculously "knew his own name" (or more accurately "demonstrated when at daycare and in some other situations that he knew his own name by reacting as expected"). I know this whole "knowing their own name" thing was not at all the point of your post but it was a very early lesson for me about how some "simple concepts" might need to be explained to him, especially social ones, and how the explanations themselves didn't need to be "dumbed down" in order to be understood, even though he had no speech of his own and showed little reaction to the speech of others at the time.
I really enjoyed this post. Many of my 'ah-ha' moments were at conference (partners in policymaking). Assume competence was one of the many 'lessons learned.'
And many seeds planted develop when I least expect it...
Thank you all for your comments. It really was a great conference. I will be encouraging more people to attend the next one, as the Autism Institute is planning to do 2 per year moving forward.
Steve,
Please read this:
http://aspergersquare8.blogspot.com/2007/07/did-you-say-8.html
Any chance that the next conference will be held in an institution in which some of the autistic youths and adults with Autism Disorder reside?
Perhaps those with sufficient communication skills could help you "move away" from the "concept" of deficits and coin a new euphemism?
Facing Autism (Realistically) in NB
How interesting, Mr. Doherty (Autism Reality NB) that you are able to completely digest, understand, and even comment on a complicated topic such as "deficit model" and how it relates to behavioral approaches to supporting people with autism after simply reading a short post by an uneducated blogger like myself.
You are implying that my use of the term indicates that autism disorder does not include any deficits. You are incorrect.
Perhaps if you would take me up some day on my offer of a respectful, level-headed conversation then we could come to understand each other a bit better. However, each time I make the offer, you do not allow my comment to appear on your blog.
Instead, apparently, you will continue to lurk around, waiting for me to write something you disapprove of, then briefly appear and take a pot shot before going away again. As long as I understand the rules of the game, I guess I can be comfortable with it.
I didn't realize, Harold, that only parents with institutionalized children had the right to comment on autism or do such things as attend conferences.
Lastly, you should be aware that one of the presenters at the conference was Sue Rubin (acompanied by her parents). You may not be familiar with Sue, but she is profoundly affected by autism. In many family scenarios, she would have spent her life in an institution. Instead, through her hard work, the advent of Facilitated Communication, and her family's presumption of competence regarding her abilities, she has been very successful in achieving a number of things.
But the success of people like Sue does not seem to fit with your world view, so I am sure you will ignore that.
This, in their view, improperly biases observers to look for "voids" of good behavior or existence of "bad" behavior - without ever considering the root cause of any given behavior at all. It leads to the (classic behaviorist) conclusion that "If I can just isolate this one behavior and eliminate it, my subject will become less autistic."
If that is their view, they obviously know next to nothing of the behaviourist approach, so I would advise you to exercise caution is considering their views on same.
Instead, through her hard work, the advent of Facilitated Communication, and her family's presumption of competence regarding her abilities, she has been very successful in achieving a number of things.
I think it is safe to say that whatever sucesses this lady has enjoyed, they have absolutely nothing to do with the immersion in wishful thinking that is FC. I genuinely hope that the above quote is an aberration and doesn't represent the broad 'neurodiverse" view, but if the neurodivertistas embrace FC, while rejecting ABA, then they are utterly intellectually and morally bankrupt.
Anonymous -
"I genuinely hope that the above quote is an aberration and doesn't represent the broad 'neurodiverse" view"
Actually, if you read the title of the blog you will note that this is One Dad's Opinion. There is no centralized Neurodiverse view. Homogeneity is not one of its attributes.
"I think it is safe to say that whatever sucesses this lady has enjoyed, they have absolutely nothing to do with the immersion in wishful thinking that is FC."
After showing her movie - "Autism is a World", she fielded questions from the audience. She has a typing device that her mother (in this case) held for her. Her mother did not touch her arm or hand in any way, and Sue answered spontaneous questions from the audience. Is this Facilitated Communication? Perhaps I am using the wrong term. You tell me, is that wishful thinking or is that reality?
I understand at a basic level some of the controversies surrounding FC, and am in no way qualified to argue its merits or problems. I do know what I saw, however.
I would also like to say that I, for one, do not reject ABA. I also do not believe it is the Holy Grail of autism treatment, and it does raise some ethical concerns - only some of which have been resolved (such as the utilization of aversives). I also know that various studies support its efficacy, and others refute it.
You may be interested to know that one of the organizers of this conference trained with Lovaas at UCLA and has decades of experience with ABA.
Your comment is not accurate Steve D. I did allow your comment on my moderated blog. I did not publish your follow up which added nothing informative to the discussion. As to the deficit concept, duck if you wish to avoid dealing with what you chose to publish. Deficit is not a difficult concept Steve D. No need to play pseudo-intellectual games with an ordinary concept.
And as I have said try the "reality" approach. Was it "deficits" that led to your child receiving an autism diagnosis?
Just this "one Dad's opinion".
Ummm, sorry Harold, but you really are wrong about this. And to think you dedicated a whole blogpost to it. How embarrassing.
This is from a published autism study. There is no significance of this study as relates to this discussion, other than the fact that I just want to show you that there really is something known as the deficit model and that it has nothing do with value-based judgments or how any "feels" about autism.
"The culmination of considerable research has resulted in support for a neurobehavioral model of autism as a disorder of complex information processing systems. This is a multiple primary cognitive deficit model proposing that the pattern of deficits within and across domains in autism is a reflection of complex information processing demands."
Thanks for saying things about me. I am Stephen Hinkle, the presenter of "The Importance of Extracurricular Inclusion". I made this because there are so many people out there with disabilites where Extracurricular is overlooked many school systems, teachers often pay little attention to detail during "social times" in the schoolday, and don't always regonize kids that don't have any friends. The real reason for this is a lack of social skills, manners, and etiquette, and not everyone learns this on their own and needs to be taught. I also read so many articles on the net about the death of manners and civility in this nation, and as I began to notice this, It lead me to assemble this presentation
Stephen -
Thanks for commenting here on my blog. I enjoyed our lunch together, and hope we can do the same again if you lan to attend USD's January conference. I will be there.
I would encourage you to present again, based on how well-received your last one was. It is awfully good for parents and professionals to hear from someone who really knows what kinds of challenges and rewards there are during school years, and how we all can make it a little easier for for folks who are not Neurotypical.
In regards to me questioning the audience, as you mentioned about this, I do this to try to make people "think outside the box". I also do this, to make people think from the perspective of a person with autism. I don't nessecary try to be hypothetical as in "what if", but try to create some discussion to keep people more entertained, and to think from a different perspective, of what it might be like from the perspective of a student with autism. I beleive that having the audience think differently gives teachers a chance to understand how to do things differently in their classroom. For example, this is why I brought Jodi up to the stage and showed some examples of social skills I did not know when I was younger. Additionally, I feel that occasional interaction with the audience keeps them interested, and less likely to fall asleep.
This is also why I try to make the audience laugh some, too.
Stephen -
Thanks for clarifying that. Your strategy works marvellously.
Steve
I'd really love to hear the response from anonymous...
I have a vague understanding of why some consider facilitated communication bad, and that a lot of it can be a fraud.
I am glad you described Sue Rubin's presentation. From what I saw in Autism is a World even if her communication was on her own, it was heavily influenced by the view of her parents. but then that is the case of all of us, and not just autistic individuals using facilitated communication.
My son's second language therapist would hold his hand in a pointing motion to help him choose things. She also used methods used for blind/deaf children to communicate with him, even though he was neither blind nor deaf. She said she was a facilitated communication skeptic, until she realized that is what she was using for him. Being a Language Therapist by trade, I imagine she knows the correct terminology. Maybe we need a new term for the FC that isn't a fraud.
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