Friday, July 13, 2012

What accommodations will autistic stakeholders suggest?

I just read an interesting post on a blog called harpocrates speaks in which the author criticizes some individuals from the age of autism blog who question the legitimacy of the autistic stakeholders who are public members of the IACC.  This was in response to an individual claiming that autistic people who were dependent on the government for services had no right to refuse a cure should there be one.  This position causes outrage among the neurodiverse autistics who state they would refuse a cure if one is ever found.  This individual was responding to a comparison of wheelchair bound people asking for access rather than a cure.  Left brain right brain blogger and IACC member Matt Carey, who is apparently against curing autism but feels the taxpayers should spend billions of dollars on special education for his offspring as well as other kids,also weighed in

Harpocrates does make a couple of valid points.  There is no cure available and that a number of things the age of autism crowd touts as a cure or at least treatment are likely of questionable value if not outright quackery.

My question is, exactly what accommodations will neurodiversity extremist IACC members Noah Britton and Scott Robertson suggest that is anywhere near analogous to wheelchair access?

One reader, Liv's parents, suggested spending more taxpayer money on living arrangements so low functioning autistics won't bash their parents heads in.  Apparently it's okay for the disabled person to bash a staff member's head on concrete but not their parents' heads. 

In private emailings with Ari Ne'eman, he's suggested vocational training,though has no real proof it would enable the asd person to work in the same manner as wheelchair access would help someone with no or impaired legs get around.  He also suggested eliminating social pleasantry as a hiring criteria in the workplace.  This is certainly not realistic.  ASAN has written on their website that the law requires employers to accommodate persons with autism.  They neglect to mention that the law only requires reasonable accommodations (whatever that means).  The law specifically states that anything that would provide a financial burden to the employer such as having to pay for a job coach out of their own pocket, a proofreader to check for errors, an aide to help control behavior, etc. is something employers don't legally have to provide.  Contrary to what Ne'eman (and by extension likely IACC member Scott Robertson) believe,there is at least one legal precedent that refutes their position.  in one court case, Jakubowsky vs. Christ Hospital, the sixth federal circuit court of appeals ruled that accepting an autistic persons' behavior was not a reasonable accommodation and the claimant lost.  He attempted to appeal to the supreme court, but they refused to hear the case.  So, it would appear there is no way autism could be feasibly accommodated for in the workplace in the same way that giving access to a wheelchair user could.

As far as I know, Ari Ne'eman during his brief tenure as an IACC public member, never suggested any accommodations.  His legacy was of accusing an economist who did a study showing the expense of autism of being a eugenicist.

I realize that Noah Britton and Scott Robertson have been newly appointed to the IACC so in all fairness I should give them time to see if they can suggest any legitimate accommodations for ASDers. that is not an apples versus hurricane comparison to wheelchair users.  There is no evidence that suggests to me that this will be the case--that either Britton or Robertson will have anything constructive to offer.  Noah Britton apparently just wants to compare people who wish to cure their autistic children to the Ku Klux Klan as I've written earlier and that people who wish to cure autism, just want to selectively eliminate autism from the population.  If there are any suggestions a member of the IACC or any other neurodiversity member has for accommodations as an alternative to an nonexistent cure, I'm interested in hearing them and they are welcome to comment in the comments section.   

Thursday, July 12, 2012

"Thousands" of persons with Asperger's who don't want a cure have Noah Britton. Who will represent the autistic people who wish to be cured?

The newly reconstituted IACC (Interagency autism coordinating committee), the panel of members from the federal government and general public with a stake in autism, who advise the government on how to direct research and advise the government on autism policy, had a full committee meeting a couple of days ago.

Back in April, I wrote a post discussing three of the newly appointed members of this august committee and my dissatisfaction with these individuals being selected for posts advising the government on how to deal with autism spectrum disorders. 

There was another individual whom I was not familiar with at the time, Noah Britton, who, in retrospect, I wish I had commented on in the above-linked post.

If you go to approximately the 27 minute mark of the above-linked video, you'll see this guy giving his introduction to the committee as a newly appointed member.  He states that he became a member of the IACC to represent "The thousands of people" with Aspergers who wish not to be cured and have the right to say no.  While everyone else in the room is extremely well dressed, Mr. Britton attended the meeting wearing a raunchy white t-shirt with the crude lettering My Body, My choice emblazoned on the front.

A perusal using Google shows us that Mr. Britton has compared autism speaks to the Ku Klux Klan running the NAACP and not letting any black people in.  Mr. Britton apparently is not familiar with the half million dollar research grant awarded to the Mottron group of whom Michelle Dawson is part of.  He is also apparently unaware of their funding of autism talk TV run by anti-curebie Alex Plank.  To the best of my knowledge, Autism Speaks has never funded any endeavors that a pro-cure autistic has been involved in.

I am curious as to where Mr. Britton comes up with his "thousands of people" figure, particularly given he uses it just for Asperger's and not for autism.  As far as I can tell, he's just conjured this figure out of thin air.  He also wants to represent one small segment of the autism community--those with Asperger's, and not represent other ASD's that are not Asperger's.  It would seem a decent committee member would want to represent the interest of all persons with autism and not just his own.

I'm also not sure where Noah gets the idea that assuming a cure for autism is ever found in his lifetime that anyone is proposing to force him (or any other adult past the age of consent) to undergo it.  Perhaps he'd like the government to legislate that persons with Asperger's under the age of 18 can have a choice independent of their parents assuming such cure is found, I don't know.  I am also curious as to what his stance is on curing those on the spectrum who are not Asperger's.

Well, Mr. Britton, if you ever happen to read this post here's an inflammatory analogy to match your KKK-NAACP one: I believe appointing you to a government post dealing with autism is like appointing a member of the mafia to serve on their city's police commission.  If any reader thinks lowly of me for stooping to Britton's level, so be it.  Tit for tat.  

Though I don't expect a cure to be found in my lifetime (particularly at my relatively advanced age), I do long for one and I wish those who are interested in autism would pursue one and someday, the autism society, autism speaks and the IACC can say, we can disband, we don't need to have these organizations anymore.

To date, five persons on the spectrum have been public members of the IACC.  Every single one of them has been opposed to curing autism.  Only one pro-cure autistic, as far as I know, has been nominated as a public member, he was not appointed. Not a single one of us has ever been appointed.  So the score remains five to zero, though the IACC states they want balanced points of views.  They seem heavily skewed towards neurodiversity, though the law states the committee was created for the purpose of combating autism.  I'm wondering what is the sense of that?   

Though I won't bandy about statistics in the same manner as Britton, I will say there are a good number of persons on the spectrum  I know of who wish they could be cured.  Myself, Jake Crosby, Oliver Canby, Chris Charette, Sue Rubin, Marty Murphy, Tom Mckean, Roger Kulp, just to name a few.  It's likely there are thousands of others who feel the same way, who have to struggle every day with this horrible disability.  However, many of these individuals are incapable of speaking or writing blog posts or even telling the IACC how much they hate this disability and wish a cure.

If I had my way, the combating autism act would be jettisoned and consequently the IACC abolished, but it does bother me the federal government has such a cavalier attitude toward those of us who wish a cure.    

Now we know who at least one of the public member IACC represents.  I wonder if there will ever be anyone to represent us.