Advocacy, Bias and Cure: Discuss
The video here is a record of advocacy from a 9 year old autistic young man who uses a keyboard to do most of his verbal communication. He is identified as "D" here.
He was part of a panel hosted by an autism organization. The audience submitted written questions to all the panel members, some of whom were diagnosed with Asperger's syndrome and some with autistic disorder (Kanner autism, core autism, whatever folks are calling it this week).
D's answers were intriguing, at times puckish and inciting as well as insightful. (Autism Diva is trying to follow in D's charming footsteps and use more erudite and scintillating parlance.) D's answers are recorded here on this video made by D.
One question from the audience for the panel was:
D's answer was:
The next question was:
D's answer:
At the end of the video there is "one last unsolicited comment" from D.
That, dear readers, is autistic self advocacy.
(Photo of D jumping on a trampoline.)
Autism Diva
laudatory
He was part of a panel hosted by an autism organization. The audience submitted written questions to all the panel members, some of whom were diagnosed with Asperger's syndrome and some with autistic disorder (Kanner autism, core autism, whatever folks are calling it this week).
D's answers were intriguing, at times puckish and inciting as well as insightful. (Autism Diva is trying to follow in D's charming footsteps and use more erudite and scintillating parlance.) D's answers are recorded here on this video made by D.
One question from the audience for the panel was:
Do you think it would be a good thing if researchers found a cure for autism and Asperger's?
D's answer was:
The road to Hades is paved with good intentions.
The next question was:
Would you want to be cured?
D's answer:
I would rather be cured of bigotry before being cured of autism.
At the end of the video there is "one last unsolicited comment" from D.
It is my profound opinion that those who desire to divide us into "high" versus "low functioning" autistics deliver a great disservice to our common quest for true equality.
That, dear readers, is autistic self advocacy.
(Photo of D jumping on a trampoline.)Autism Diva
laudatory
posted by Autism Diva at 12:48 AM
20 Comments:
Intelligent people don't take advice from 9 year olds.
That was truly amazing & inspiring in the best possible connotation of the word. D's turn of phrase of reminds me a great deal of my own son's. Intelligence & wisdom, thank goodness, are not limited by or to particular ages or any other category.
fore sam:
Truly intelligent people (when attempting to be free of prejudice and bigotry) take advice, wisdom and learning from a variety of sources, including young people, old people, and people of diverse backgrounds. Certainly there are topics for which I would not consult a child, but if I want to know how a 9 year old feels about something, who better to ask than a 9 year old?
That was great. If that was from Madison, then that place just got a little less cold.
Fore Sam,
Watch your step. You are really not welcome here because of your reputation as an bully, if not cyber stalker. Lisa/Jedi and Theo Bromine covered your non-point nicely.
A whole audience of people had asked this nine year old what his opinion was (the other panelists were older). They were free to take it as advice or not, but he shouldn't be dismissed for answering their questions so rationally.
Intelligent people are taken aback by advice from a 9 year old...
I find by that time, they are intelligent enough to know the world without being tainted by its shortcomings...
This D seems to unfortunately have some 'taint' in his words. Someday, maybe others will be able to 'speak' from a position of acceptance.
This kid's been through some vocabulary building!
Rational adults would point out the flaws in the nine year old's thinking. I think he was coached.
Rational adults find it ironic that an autistic child conveys far more wit and wisdom than a grown man named Fore Sam.
I guess I'll have a tough time finding rational adults on this site.
Fore Sam,
No more comments from you. Period. Any more will be deleted.
This is not a forum for you to spread your poison.
D is an unusually intelligent young man. From what Autism Diva has heard, he writes very slowly so he packs lots of info into a few words, it seems.
A love of big words is pretty common among autistics who love to read. Autism Diva had that kind of "little professor" persona as a young child, people were surprised at the big words coming from the little girl. So he hasn't necessarily gone out of his way to take vocabulary building courses, it might be more or less natural and the result of the kind of reading that he does (far above grade level).
Autism Diva's child was in special ed classes, but could read at 4th year college level, according to testing, at age 13.
D seems to be aware of the controversies around special diets. He is aware about the various attempts to cure autistic kids with quackery. His comment about diets was pretty interesting, but it wasn't "coached." Autism Diva knows a little about the circumstances around D and the other panel members, but D wants to remain anonymous.
It is fitting we begin to ask individuals with autism their perspective. Ask me if I would like to be cured of my baldness or excessively verbal nature and I would shout a resounding "No". What is it about autism we need to cure?
Seizures? Yes.
Self injury? Yes.
Aggression? Yes.
Without these, though, would those diagnosed with autism who have enriched our lives still seem socially awkward to some? still have sensory issues? still have perseverations? Do we need to cure these things?
I think not. We can teach and show different ways of coping but to suggest all things should be/are curable suggests the world should be homogenous and those individuals are not okay as they are. This is dangerous thinking my friends and has far reaching implications which I'll probably tackle on my blog at wwww.behaviorconcepts.com.
Continue to enjoy this site immensely.
Sam is just jealous because a 9 year old boy is more well spoken than he is.
Andrew,
Thank you for your compliment. The thing about seizures and autism is interesting. It's possible that if one "takes" the kids with known disorders such as Angelman's and Tuberous Sclerosis "out" of the mix of autistic kids (momentarily) then the background rate of seizures in idiopathic autism is no higher than among non-autistics. There was a study done to this effect, Michelle Dawson mentioned it somewhere...
At any rate, seizures seem to cause developmental problems and surely they are scary things that can and do kill people and are not to be messed with. They are definitely in line to be cured, at least the serious ones. Autism Diva has very mild muscle "seizures" that are just an annoyance so far.
Self injury and aggression/violence are not good, obviously, but it seems that much of self-injury and aggression can be "controlled" by not putting the autistic person under great stress.
There are disorders that are associated with self-injury like Lesch-Nyhan syndrome, and it's possible that some of the kids we hear about with extreme problems with self injury have an underlying disorder, as self-injury is not one of the diagnostic criteria for autism, and isn't found in autism universally.
Basically, Autism Diva's point about aggression/violence and self-injury it that's it's really easy to "blame the autistic" and to give those around him a pass on whether or not *they* are the cause of the problem. It's easy for people (especially kids) to torment an autistic person and do so surreptitiously. Atuistics report being tormented this way in school and elsewhere.
Also it might the "environment" noises, flickering lights, scratchy clothes, and so forth that need to be changed.
Though Autism Diva hasn't had personal experience with it, it seems that some autistics act out with hitting or self-injury in response to phyiscal pain that is going untreated, such as gastro-esophageal reflux or a tooth ache. Dr. Margaret Bauman described situations like that in her presentation at the MIND Institute a year or more ago.
----
Echotig,
Point well taken. :-D
Coaching or not, D's got a good head on his shoulder it seems. Maser Of just doesn't seem to understand (or want to) that despite his disability of speech that there may still be someone looking to communicate. I'd rather have my child 'talking' glib-ly about tolerance and understanding than wearing an "I'VE BEEN POISONED" T-shirt and wallowing in his parents' indecision and anger waiting for a 'cure'...
Bill
Diva,
Do you have any idea of where I can find one of these SpringBoard computers for my son? Or maybe direct me to someone who might might know?
Echotig,
Once upon a time Autism Diva used to use "United Cerebral Palsy" as a source for information. They seemed to be very organized and able to help with information, even if the person/child in question did not have CP. They had a toy lending library where Autism Diva lived years ago, and kids with disabilities could use it (even if they didn't have CP).
There may be other good sources of information.
jypsy found the Springboard website for Autism Diva.
Joel Smith's blog might have some links to stuff about augmented communication, there may be some stuff on autistics.org, too.
Thank you SO much!!
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Thanks for posting that video, it's quite powerful and helpful to those of us trying to understand autism. I am a reporter working on a project about parenting and autism, and the video was one of the most interesting things I have come across.
Family Man,
You are welcome. There are more videos of "D" and by him on YouTube, if you click on the YouTube video it should take you to YouTube.com and you can see some more videos that have been uploaded by "DeeDeeMom."
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