Wednesday, July 25, 2007
Following are three separate little snippets of speech heard recently in the D household. While I intend to let you decide for yourself the moral of each story, I will say that perhaps the most notable thing is that, relatively speaking, Jason has learned a lot and his Dad has a lot to learn.
It was fairly late at night. Well past 9:00 anyway. For us, that's late. I was working on some things on the computer, and Jason came to indicate to me that he was planning to get a glass of water. Everyone else was abed, and these quiet times can be some of the best opportunities I have to "pair off" with Jason and communicate (I use the term communicate out of habit - we were communicating long before he was talking). For some time now, my wife and I had been wondering when Jason may become aware of his behavioral differences from his brother and his peers - how often he had heard the word "autism" and if he had begun to try to figure out what it meant. I took this opportunity to probe for some answers.
"Jason, come talk to me for a minute."
"Okay", he spoke under his breath - a common "tone" during quieter moments in the house.
"Jason, have you ever heard the word 'Autism'?"
"Do you sometimes feel like you are different from some of your friends? Do you know you are unique and special?"
Without looking at me, breathing deeply, concentrating, "Yes".
"How do you know you are different?"
He looks right at me, "You're big, I'm small."
Okay, message received.
When we took a vacation recently, Jason's "stimming" increased notably. His most common stims are hand-flapping and hand-clenching, though flapping noticeably increased while we were out of town. We weren't too concerned about it, we just noticed it and chalked it up to changes in routine. This, among other things, prompted us to produce a visual schedule, which seemed to make him feel much better about everything.
So last week, Jason came to me to ask for a DVD. We keep them on a high shelf, and Jason loves to be lifted up to perch on a lower shelf so he can peruse DVD titles while I hold him in place. This goes back about 18 months, and he loves to do it. Well, when he requested a DVD I was in the middle of something and asked him to wait a minute. He immediately took a step back and started vigorously flapping his hands. He was obviously stressed by having to wait. He stopped after a moment and asked me again. I again told him to wait, and he looked at a far-off point in space and, keeping his hands at waist level, flapped again. I finished what I was doing, noting that he must be particularly stressed tonight, for some reason, at having to wait. I thought this would be a good opportunity to ask him why - after all, maybe something else was bothering him and I might find out what it was. So...
"Jason, why are you flapping your hands? Is it because you have to wait? Are you OK?"
"I'm flying" came the response.
Duh! He was pretend-flying, which would have made it possible for him to get his own DVD and not have to wait for his lummox of a Dad! In other words, he was being five years old, not autistic!
Jason, like many autistic children and adults, has had significant sleep problems. Though we have helped him to solve some of the issues, one that continues is his habit of waking in the middle of the night. Fortunately for us, he is very passive during these times and he prefers to just crawl in our bed and lay between us. He doesn't chitchat or squirm (anymore), he just relaxes and in time falls back asleep. Well, two nights ago our middle boy - age 4 - had woken to bad dreams and we brought him in to lay between us so he could sleep soundly. Around 3:00 a.m., when Jason made his nightly trek into our bedroom to settle in, he found that his spot was occupied. There are a thousand possible reactions to this scenario, most of which I would never had witnessed - I just happened to be awake when he came in.
He paused for a moment, assessing the situation. I heard him sigh forcefully.
He stomped his foot and exclaimed: "Oh, Barnacles!"
I jumped up and led him back to his own bed, chuckling to myself all the way.
Thursday, July 19, 2007
She forwarded an article from a CNS News magazine. The article announces that Autism Speaks has entered an agreement with Neuropharm to perform clinical trials of Fluoxetine for the treatment of autism.
"The agreement, which gives Neuropharm access to Autism Speaks'
Clinical Trials Network of specialist paediatric centres and key opinion leaders, will expedite the enrolment of patients in this trial, codenamed SOFIA Study of Fluoxetine in Autism."
"NPL-2008 is Neuropharm's proprietary preparation of fluoxetine, featuring autism-specific dosages in a melt-in-the-mouth formulation designed specifically for those with autism."
"...is a randomised, double-blind, placebocontrolled study comprising more than 100 children and adolescents in approximately 12 centres throughout the US,..."
This is not "news", per se, as information on this study can be found simply by visiting Autism Speaks' website. But there are several interesting things to note here.
First of all, fluoxetine is the substance that is marketed under the name Prozac (as my friend refers to it: America's Favorite Food). Keeping in mind that I am not one of the Hub bloggers with a solid foundation in science, it seems to me that this is an appropriate place to spend some research dollars.
While their stated goal: "...to show a reduction in the core symptomatology of autism" is not necessarily in alignment with my views of autism (I would require some clarification from them on that point), it seems to me that any safe, effective way to reduce anxiety and depression issues in autistic individuals would be just great.
In other words, they might not get what they want - to eliminate autistic "symptomatology", or behaviors, but instead they might establish the safety of a drug that could benefit autistic people in the same way it benefits NT people.
It is known that there are neurological differences between autistic and neurotypical people, and therefore drug action - particulary psychoactive drugs such as the SSRI's - may vary significantly between the two populations. Those who know me (unlike, for example, this guy) know that I believe that autism is not curable. They also know that I wish only the best for, well, all people really, but in particular autistic people. If it were to be shown that fluoxetine were to improve the lives of certain autistic individuals, safely, in much the same way that it does for NT's, then some real good could come of this. I expect that the autistic popluation has at least as much anxiety and depression as the NT population, and that therefore a real need may exist. Testing Fluoxetine for safety and efficacy, therefore, seems like the right thing to do.
One must always exercise caution, of course, in relying on a pharmaceutical solution to an emotional or behavioral problem. I am definitely not a proponent of automatically prescribing something like Prozac in response to an autism diagnosis. And certainly pushing Fluoxetine as a cure for autism would be wrong on many levels. Instead, if a given person is experiencing difficulties with anxiety or depression, then it would be nice of this drug was available, among other choices, as a proven-to-be-safe solution.
Contrast this whole idea to the horrible "Lupron Protocol" - another case of attempting to establish a new indication for an existing drug. I actually mentioned this to my friend, and sent her a link to Kathleen Seidel's thorough dismantling of the Geier's work in that area. Her response:
"Lupron is probably the single most dreadful drug ever approved by the FDA.
We used to use it in the infertility clinic to shut down ovaries before starting stimulation protocols for IVF. Icky stuff."
Yes, and the Lupron Protocol is touted by its originators as being a way to "cure" autism.
And regarding the reliability of the Fluoxetine trial, my friend mentions that the "raters", or those who record the behavioral data, are a key component to achieving proper results. In her words: "In clinical trials, those raters have to be certified (often repeatedly) and the protocols will insist that the same rater be used with the same subject throughout the trial. These types of studies depend on the rater completely." I introduced the additional problem of observer bias, which she indicates will level out based on the idea that any inherent bias will be applied across the board, reducing the effect overall. What is far more problematic than observer bias is anything that jeopardizes the "blindness" of a rater. An example here is that Fluoxetine sometimes causes a rash. If the rater knows this, and observes a rash in some subjects, the results of the trial would be severely compromised.
I hope they perform a sound trial, and that the results will provide a viable option to improve the lives of autistic individuals.
Tuesday, July 17, 2007
I ended a post a few weeks ago with this cryptic statement: "How we deal with various situations ranging from misbehavior to achievement is dictated by this difference. There is too much to discuss on this topic to include in this post, so I will leave it with this brief statement, and discuss it further next time I write..." It is the literary equivalent of a cud - I just keep chewing on it and it never really changes.
And then tonight I was reading an excellent post by one of my favorite fellow Dad bloggers - VAB at Autista, and the last sentence in his post kind of summed it up for me and set the ball rolling, if you will. The sentence read: "I'm left wondering whether or not MK should want to do anything about it at all, and if he did, whether there is anything that he could do."
And that seemed to set everything into place. The issue I want to get at could be summed up as this: At what point does our responsibility as a parent become overshadowed by our child's ability to behave a certain way? Is this not perhaps one of the most enduring dilemmas any parent of a special needs child will face? Regardless of how one's parenting style plays out, this is an ongoing process that must evolve on an almost moment-to-moment basis every single day in order to have the best chance at a positive outcome for the child.
It entails decisions such as this:
...If my son is spinning in place in a grocery store and blocking an aisle by doing so, is he:
- Providing himself well-needed sensory regulation, in which case I should be proud of him for successfully using a valuable lifelong skill (autistic tendency);
- Interfering with other shoppers and needlessly risking injury by becoming dizzy and falling down (the parental concern);
- Pretending to be his favorite character, Harold the Helicopter, who is saving the Island of Sodor after an awful storm (5-year old behavior)?
...If my son insists on playing in his room, by himself, while a family with like-aged children are visiting, is he:
- Allowing himself a well-needed break from the action and "decompressing" in a positive, productive way by playing with his trains and talking to himself using familiar, scripted speech (autistic tendency);
- Being overprotective of his favored toy - trains - by ensuring that he watches all of them and keeps them far enough away from potential intruders that they will be safe (either autism, personality trait, or one being influenced by the other - who knows which?);
- Blithely unconcerned that other kids are there to play with him, and therefore must be encouraged to join the fun or will remain alone for the duration of the visit(is introverted, may be related to autism or may not);
- Is a spoiled child who emphasizes possession and dominance of his toys over sharing with other kids (parental concern)
- Is actually pretending to be The Invisible Man, and each moment that goes by without his being "discovered" is a successful minute! (5-year old imagnation at work).
So what do we as parents do - encourage his imagination? Succumb to the peer pressure of having our son "successfully" play with the other kids? Assume he is spoiled and take away some trains to teach him a lesson? Understand that he is neurologically different from the visiting kids and allow him unlimited ability to isolate himself?
Dilemmas indeed, aren't they?
Much is made among the ND community of understanding and accommodating the behaviors related to the autism label, and for good reason. It has been of great benefit to me to gain first-hand perspective of what may (or may not) motivate a given individual to behave in a given way. However, as the parent of a 5-year old son, I need to draw some boundaries. The major conundrum is trying to determine when I am dealing with a 5-year old behavior and when I am dealing with something else (such as sensory integration problems or movement disturbances brought on by stressors that I cannot necessarily anticipate or perceive). And to put it that way - as one or the other, black or white, is an obvious fallacy according to just about any parent or any autistic person I know. It's just not that simple.
When I sat with the diagnosing psychologist 2.5 years ago, and she informed me of the autism diagnosis, do you know what my first question was? It was this (something the doctor said she had never been asked before immediately after a diagnosis): "Considering that he is autistic, is there an increased chance of other problems such as anxiety or depression?" The only reason I remember this exchange is her response, which went something like this:
"Well, that depends. If your son is of below-average intelligence - if he has mental retardation in addition to autism, then the likelihood is very low. On the other hand, if he is of average or above-average intelligence, which is the case with many autistic people, then he definitely has an increased chance of anxiety and depression. The reason is because he will know that he is different. You see, it is a double-edged sword."
So where that leaves me is that Jason, after a few years of development, is definitely not mentally retarded. He in all likelihood would receive a "lighter" diagnosis now than when he was originally diagnosed in 2004 and followed up in 2005. Both times he received the "classic autism" Dx, but has changed a lot in the ensuing months and short years. These days, a casual observer would be hard-pressed to guess that Jason is divergent from the typical kid. Sure, any of you would know it right away, but Joe Public in the grocery store? Not likely.
This convoluted path of information is actually leading somewhere. Since Jason is one who, at least at age 5, is not obviously autistic to the casual observer, guess what that means? Yes - increased expectations of "normal" behavior. And we, as parents, have the responsibility (and we are thankful and happy to do it) to make sure that Jason successfully walks that fine line between being true to himself and whatever that means in terms of his neurological differences and being able to function well in a society which has many prescripted scenarios which require deft social skills and just the right kind of sensory awareness to successfully navigate.
For those people, either autistic individuals or parents, who may be thinking, "Quit complaining, as your kid clearly has fewer obstacles to success than me or mine", I will not disagree with you. But this post is not about degrees of difficulty - it is just about Jason and his specific situation. I respect the hell out of that boy for the hard work he has done to grow and develop, and I thank God for blessing him with a patient and angelic soul to help him deal with his challenges. I only hope that my wife and I can successfully resolve the dilemma of attributing Jason's behavior on any given day, 100 times per day, to the right source: his age, his Jason-ness, or his neurological differences.
Sunday, July 15, 2007
No babies were harmed during the making of this photograph...
Other than relieving himself on the floor, chewing everything in sight regardless of economic or sentimental value, and whimpering all night in his "den", Marley has been a great to joy to have around!
Saturday, July 14, 2007
1. Let others know who tagged you.
2. Players start with 8 random facts about themselves.
3. Those who are tagged should post these rules and their 8 random facts.
4. Players should tag 8 other people and notify them they have been tagged.
Before we begin, I must share this: I read Bev's post in which she tagged me, then told my wife about it and explained that I must share 8 random or unusual things about myself. Her response required no forethought: "For you, that should be easy."
So here we go:
1) I am socially, politically, and economically conservative. If there are any of you whose initial reaction is that this seems at odds with my feelings about autistic rights and providing proper supports to people with all types of disabilities, then your understanding of conservativism does not agree with mine.
2) I am a die-hard aficionado of historical fiction. My personal favorite authors of this genre are (not necessarily in this order): Gary Jennings, Jack Whyte, Mark Helprin, and Neal Stephenson. I find that presenting history in this format somehow shortens the years between then and now, and makes otherwise distant occurrences seem much more real and relevant.
3) The CD changer in my car has the following music in it at this exact moment: Rage Against the Machine, Beck, the soundtrack from The Mission, Arctic Monkeys, Flogging Molly, and Outkast. Needless to say, I have very strange taste in music.
4) Back in college, a friend and I spent over 4 hours trying to construct our very own palindromic sentence. I would love to place the sentence here, but we never did figure one out.
5) Back in 1994, I lived with a Ferret named Freda. Ferrets are somewhat discomforting to live with, in that they constantly stare at you and you just know they are thinking, "If I were any bigger than I actually am, I would eat you right now."
6) In my life B.K. (Before Kids), I used to be quite the home cook. This was before there were whole television channels about how to be a home cook. One memorable recipe went like this: Pound flat some chicken breasts. Place a combination of diced Papaya and Prosciutto on chicken, then roll up. Dredge chicken breasts in a mixture of flour, curry powder, and coconut flakes. Saute chicken in butter. Remove chicken, add to saute pan shallots and saute until soft. Add light cream, and lime juice. Serve sauce over chicken. Yummy.
7) A few years ago I figured out the Meaning of Life. But I forgot to write it down.
8) I refuse to use Spellcheck on principle. I lament the ongoing degradation of general language and writing skills in the modern world, and this is my little way of rebelling on a daily basis.
So, having spilled the paint that is my quirky self onto the canvass that is the internet, I feel as if a Jackson Pollock-like result has decidedly not been the result. And now I must move on to tagging 8 more victims.
There are two bloggers I really like who are not part of the Hub. I would like to learn more about them them, and this meme is a great way to do so. Therefore, VAB at Autista and Alyric at A Touch of Alyricism are tagged..
There are several folks who I read regularly, but would love to know more about and to hear their 8 things. They are: Andrea, Amanda, and Joel.
I have always appreciated the "science contributors" on the Hub, and am therefore tagging Dad of Cameron, and Kev.
Last, but most certainly not least, is someone who has not been very active on his blog anytime recently. Perhaps this meme will temporarily drag him out of hibernation. Hello, Not Mercury.
Wednesday, July 11, 2007
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.
Tuesday, July 10, 2007
Here's the thing that pervades this conference - the presenters (notably; Anne Donnellan, Martha Leary, Nan Negri, Kate McGinnity, and Jody Robledo) are a close-knit group of professional associates who made left-turns somewhere in their career backgrounds that led them down what must be considered atypical paths of understanding and accepting autism. Their combined weight of experience provides them absolutely no illusions as to how much or little they know about the disorder, and they will consistently, through words and deeds, step aside and let the opinions of autistic individuals overshadow their own preconceptions and dictate their efforts. How refreshing! This is not the Autism One crowd, that's for sure!
Okay, two highlights from today. First, one of the presenters chose to show Amanda's "In My Language" video as the centerpiece of her presentation. The presenter was Martha Leary, MA, CCC-SLP. Martha showed the video (actually, the whole Anderson-Cooper CNN piece), then just opened up the microphone to questions from the crowd. I think the richter scale of learning hit about an 8.5 when the crowd really got down to discussing what they had watched. Keep in mind that many of the attendees are in professsions such as state service providers and preschool special day class instructors - they held very textbook-like preconceptions of autism prior to attending this conference.
One person commented on Amanda's use of the term Neurotypical - which elicited much chuckling. Another wondered how much effort it must have taken for Amanda to have completed the filming process. Many just expressed admiration and respect for Amanda's videography skills and ability to accurately get her message across. All in all, it was a very positive reaction and I think many people gained some valuable perspective.
I, of course, did take the opportunity to speak as well. I am not much of a "group" guy and tend to stay quiet and alone at these types of events. But this was too good of an opportunity to pass up, in terms of inviting people to view the Hub and learn from its various contributors the way I did. So, first I mentioned that Amanda is actually quite accessible on a regular basis, in that she writes profusely - mainly on topics relating to autism advocacy and understanding, and that people are generally welcome to respectfully comment on her blogposts. I talked about her use of the term Neurotypical and its counterpoint - Neurodiverse (lots of "Aaaaahhh, now I get it" from the crowd). I mentioned the positive impact her writing and videos had had on my understanding of autism, and that there are numerous other autistic bloggers who also deserve a look. I went on to mention the Hub, they wrote the address on the whiteboard, and I think overall the opportunity to plug the Hub did not pass without proper attention. Mission accomplished. Thanks, Amanda!
Then came the best part of the day. Lunch came around, and I was walking out of the building toward the main cafeteria and found myself walking with Stephen Hinkle. Stephen is the guy I mentioned in yesterday's post that had been such a great contributor throughout the day. So we spent the next 90 minutes or so together, including a nice lunch in a cafeteria I had not eaten in in over 16 years (weird feeling).
Stephen granted me permission to blog parts of our discussion. He is not familiar with the Hub, but might check it out. He is an outspoken advocate for disability rights, expecially in the school setting. He is passionate about this topic, and is doing a presentation tomorrow on the subject. I mentioned to him that he and Joel and Amanda have a similar focus on the issues, and I encouraged him to read their blogs. Other than that, we discussed things including the war in Iraq, highschool dances, gas prices, food preferences, his career (computer science), peak oil conditions, liberalism, Michael Moore and Sicko (which he challenged me to watch, but I refused because I abhor what Michael Moore stands for in terms of bias and propaganda), afterschool activities, play time vs. computer time, etc. We talked about the Omnibus proceedings and vaccine causation in general. I told him about chelation, which is not something he had heard of before. Bottom line is we seem to disagree on almost everything, and had a really nice time discussing all of it. He is quite a bit younger than me, so I expect he will begin to gain a more conservative slant as he grows older :)
It is not every day that I get to spend any time with an autistic adult, and I enjoyed the experience. It is very difficult for me to relinquish even one opportunity to spend a moment alone reading a book or people-watching during a break, and I'm glad I resisted the urge in this case. I also got to experience some of the jeers and uncomfortable expressions and reactions that follow around a guy like Stephen first-hand, as there were many youngsters (high school and college age) who were on campus for various summer functions. It is a pity that someone rocking and speaking a bit louder than what is considered normal is enough to bias them towards Stephen's jovial and agreeable personality. If you read this Stephen, thanks for taking the time to dine with me.
That's it for today - hopefully I'll have more to report tomorrow!
Monday, July 9, 2007
After a two-week hiatus which consisted partly of a family vacation (more on that in another post), I have returned to the blogosphere. And the reason I am writing today is that I feel just a little bit inspired.
Today, I attended day 1 of three-day Autism Conference at the University of San Diego. USD is my alma mater, and today is the first time I have really spent any time on campus since I graduated 14 years ago. I even walked up and spent a few moments in front of my freshman dorm room, which is situated, like all rooms in this building, on an outdoor-corridor. I stood there for hundreds of hours making friends and discussing anything from philosophy to psychology to coeds those many years ago - it was strange to stand there today and compare myself as an individual to how I was then. In some ways I think I've improved, in others I've declined - such is life I guess.
When I signed up for this conference, it was the first I has really become aware that USD had incepted an Autism Institute, and I was curious as to how they viewed Autism in general. UCSD, mind you, is the home of ARI, so our area has a somewhat dubious track record in this area. Then again, UCSD is a major research institution, whereas little old USD is a liberal arts school. The AI at USD is an adjunct of the School of Leadership and Education Science, and the conference took place in the spectacular Joan B. Kroc Institute for Peace and Justice - a good forbearing of the philosophical approach taken by the organizers.
I arrived expecting to find the predictable horde of cure-sellers. There were none. There was a "bookstore" selling all types of autism-related literature and that's it. No commercialization to tarnish the image of this group!
I settled in and listened to the opening presenter - one Anne Donnellan, Ph.D. She, as Director of the AI, set the tone for the whole conference by opening with the theme "People, not Packages". She asked for a show of hands as she identified her audience. Parents? About 10 of us. Behavioral Therapists? Looked like about 60. Teachers? Maybe 120. OT, PT, SLT? 40 or so. Administrators and government service providers? 10 more. She mumbled something about needing to attract more parents to these conferences and was moving on when a voice in the front of the room said loudly, "Um, you forgot someone!" She smiled at the interloper and said, "Self-Advocates?" The speaker raised his hand - the only hand to raise - to everyone;s applause. I later came to find out this guy was named Stephen Hinkle. Good job, Stephen! No further discussion of the day is possible without referring to Mr. Hinkle's contributions. He was bright, funny, active, energetic, and made the most profound and salient points of anyone in the room. He interjected about 15 or 20 times over the course of the day, always starting with, "I'd like to respond to something you just said..." His ensuing response was guaranteed to be long-winded, well-reasoned, and directly related to the topic at hand. The paid presenters could not have asked for a better supporter of their presentations. What a classy guy, what a pleasure to have him there. I always read the autistic bloggers lament the lack of inclusion of autistic people at functions such as this, and today is a perfect illustration of why. After each response, he would pause for a while, sit down, rock back and forth for maybe 30 seconds, sometimes scan the room, and have a huge smile on his face. I hope to track him down in the next two days and ask him to look over the Hub - he could be a great contributor here if he likes to write.
Anyway, back to Dr. Donnellan. In the first 30 minutes or so, I knew the USD Autism Institute was in good hands. During that span, she stated that:
- The "spectrum" is a nice way to help people discuss the issue, but it doesn't really exist and probably causes more harm than good by virtue of the fact that it puts non-verbal autistics at one "end", thereby isolating them from the rest and casting a negative light on their 'group'.
- IQ tests are absolutely bogus, and should be ignored. She understands their significance as an existing measurement (for example, she used IQ tests in one of her published studies that concluded that ABA therapy is not nearly as effective as it purports to be), but thinks the whole idea of using them to measure general intelligence is tremendously flawed and harmful to those who do not benefit from the tests inherent bias.
- Autism does not truly exist. In her words "Can you touch it? Can you see it?" No. She views autism as a way to describe the interaction between typically-"wired" people and a large of group of atypically-"wired" people (enough of whom are homogenous in at least enough ways as to have been assigned a term that adequately describes some of their most recognizable characteristics). I have presented this concept way too simply here, so cut me some slack, and she admittedly only spent a brief moment on it, but I think I have an idea where her thought process is going with this.
- She showed a version of this video, A Credo For Support.
- She asked everyone to acknowledge that she is NOT an expert in autism, and furthermore that no one person is. She says that if anyone says they are, question everything they say. She then had us do a group exercise that consisted of her asking us to repeat and therefore learn by rote memory the most important phrase those who work with or live with Autistic people should know. The phrase? "I DON'T KNOW".
- She admires and appreciates Dr. Temple Grandin, but is concerned that since Temple has so much exposure that the public is beginning to overgeneralize her particular experience with autism the "the way autism is". Interesting insight.
There was much more from Dr. Donnellan, but you get the gist of it. The day ended with a showing of the Autism Every Day self-documentary by Sue Rubin, followed by a Q&A with Ms. Rubin and her parents. This post is getting a bit long, so if anyone has any questions about Sue Rubin or the content of the Q&A, comment here or email me directly.
I'll hope to update you with more good stuff from days 2 and 3!