Wednesday, September 24, 2014

Ari Ne'eman and ASAN try to take over CARES act and exclude pro-cure autistics

The government has now taken the side of the neurodiversity movement after passage of the CARES (not interested in repeating the assinine acronym) act which was formerly entitled The combating autism act.  The feds responded to all the pro-neurodiverse individuals who are against the ultimate goal of curing autism.  The government agreed with them and changed the name of the law.

However, Ari Ne'eman and ASAN are well aware of the truism first stated by Shakespeare what's in a name?  Though a rose by any other name smells equally foul, ASAN and Ne'eman have now come out with an action alert with the ironic title Will Your member of congress support autistic people.

They've also persuaded neurodiverse congresswoman Jan Schakowsky to write a letter to the secretary of HHS and the head of the national institute of health urging them to allow anti-cure autistics who want people like me to be crippled and sick and lonely and in dire straights unless we have parents to support us to dictate autism policy and ensure that only people who have alleged autism and believe in neurodiversity to dictate government autism policy and exclude those of us who wish for a cure for autism and believe autism is a disorder and not just a social disability. 

Interestingly, the letter was written by a staffer of Schakowsky's named Waverly Gordon who's so appalling ignorant of the issues at hand, he makes the false statement that only two autistics are on the IACC.  When in fact three people alleging to be on the spectrum (Noah Britton, John Robison, and Scott Robertson) currently serve on the public membership of the IACC.  All three of these people are pro-neurodiversity and anti-cure and so far zero anti-neurodiversity pro-cure autistics have been appointed to the public membership.  Waverly also stated that no members of self-advocacy organizations served, though Robertson is one of the executive directors of ASAN. 

I'd like to answer Ne'eman's question Will your member of congress support autistic people.  The answer is no.  Since they are no longer combating autism, they don't give a shit about us and how much we are suffering and how much autism needs to be combated and a cure found at some point in time.  At least 99.9% of people with autism will never be lawyers, college professors, Ph.D. candidates in computer science or young kids with influential parents who can start a 501(c) organization and pay themselves a $65,000 a year salary.  Congress does not care about real autistic people (or at least autistic people who are afflicted by their disability, unlike most members of ASAN), so the answer to the question is no.  

16 comments:

Roger Kulp said...

I completely agree with ASAN on one point.Research in autism SHOULD include adults,but not in the way ASAN means.I know it would have been a lot easier to get the medical diagnoses I have if there were other adults out there who had been previously diagnosed with autism,and had been pursuing diagnoses of things like CFD and mitochondrial disease.It's been a very lonely journey.

The IACC meeting yesterday caused me to rethink the possibility of trying to get a place on it.I did some digging at the NIMH site where I had never been before.I found Thomas Insel's internal email address.I sent him a very formal email today explaining my story,and expressing an interest in being on the IACC,especially since they have become so interested in medical comorbidities that contribute to autism.

jonathan said...

Hi Roger, I'm not sure how much persons on the spectrum without scientific training can contribute to research, but I perfectly understand how you feel. Even if you could get on the IACC, I doubt you'd be able to persuade the government to do things the way you want. I suspect the public appointees are merely symbolic and the federal government doesn't listen to what they have to say. But, I realize you follow those meetings closely and know more about them than I do. I wish you luck if that is what you want.

ASAN is not in favor of including your point of view or giving you a seat at the table they're talking about. They have no interest in cerebral folate disease or research on mitochondrial issues, etc. They only want persons who may or may not really be on the spectrum to help persue their agenda.

jonathan said...

p.s. roger you might also want to write to sylvia Burwell, the secretary of hhs whose address is in the letter ASAN wrote that I linked to. She's where the buck stops as far as IACC appointees are concerned if i'm not mistaken, though I'm guessing Insel's recommendation carries a lot of weight and she rubberstamps the people he recommends.

Anonymous said...

Notice how ASAN likes to use low functioning autistics sometimes as agreeing with their mission, as if to win propaganda points? By using those people,they help legitimize their dangerous agenda. But @ the same time,how much do groups such as ASAN actually do for those less capable than them? My sense is not that much. @ least that's my impression. They'll never listen to us due to the fact Ari Ne'eman happens to be the son of very influential people & as a consequence, has got the powers that be by the ear. Makes me wonder whether what lower functioning autistics really think about being cured. What I find sadly amazing is how certain lower functioning autistics think being autistic is wonderful. Which begs another question. Are they really being honest with themselves deep down? Or much of the rest of the people on the spectrum for that matter.

jonathan said...

Anonymous 9:17, I agree with you completely, 'nuff said.

Anonymous said...

Never be a PhD candidate? You don't know many autistic people then.

Nate sportyboy said...

you are ignoring all of the autistics who are successful because of their memory, intelligence and sense of detail, plus their contemptness of a lot of autistics.

Lucia Bevilacqua said...

Only 3% of those on the spectrum have an IQ above 115, so the intelligence argument is bunk. Though we have a greater sense of detail, being able to spot Waldo quickly isn't the same as being able to function effectively and not struggle in society.

Anonymous said...

"At least 99.9% of autistics will never be..." First of all, back up your statistics.

Secondly, most NTs will never be highly degreed professionals, either.

The point is that people on the autism spectrum have the SAME intellectual spread as those without, but often people seriously underestimate the intellect of people who don't communicate socially, or even at all. There are plenty of "non-verbals" who are doing so much more with their lives than the pity-party people would want to ever acknowledge. The point is to presume the potential of competence. It is what makes my classroom successful, for all my students no matter their diagnoses.

Meanwhile, to answer your statistical claim, about 10% of the general population has earned a graduate degree (master's or higher). Data on people with disabilities with higher degrees is not kept. Interesting, yes? However, here's an article about it: http://www.huffingtonpost.com/2014/02/27/students-with-disabilities-college_n_4869793.html

jonathan said...

If you can cite a few non self diagnosed autistic ph.d's (temple grandin the notable exception), I'd be interested, 85% of autistics in england are unemployed according to NAS study. I don't need any actual data, it's common sense, the vast majority are not going to make it or be anything like the representation of the IACC. Maybe you should back up your statistics. Most nonverbal people with autism have significant behavioral problems that are going to prevent them from succeeding in the world, regardless of what ND spin you want to put on it.

Lucia Bevilacqua said...

"The point is that people on the autism spectrum have the SAME intellectual spread as those without."

Studies say otherwise. http://www.ncbi.nlm.nih.gov/pubmed/21272389 Autistics are heavily inclined to intellectual disability.

Anonymous said...

I am the "anonymous" being addressed being asked to show PhD examples beyond Temple Grandin. You are confusing potential with success. You are also assuming that 1) people with autism and advanced degrees spend all their time announcing that they have both, 2) that somewhere somebody gives enough of a care to seek out all the autistics on the planet and keep stats on them regarding such successes, and 3) that IQ testing is a valid measure of someone's lifetime potential, when in fact such scores are fluid, depend on which test is given and how, test administrator bias, and subject's motivation to participate - a famous example there is Einstein, who scored a 70 on an IQ test when he was young, and when asked about it later, noted that the examiner clearly already new the answers to all these simple questions and so why answer?

I work with autistics in my career, I am autistic, and my son is autistic. I am working on a doctorate in the psychology of autism. Research is increasingly reflecting what adult autistics are claiming - that intelligence across the autistic community is spread similarly to the "neurotypical" population. I have neither the time, nor the motivation, to do your research for you... you're the person making claims of general intellectual disability in autism, so I'd suggest you do some additional peer-reviewed literature review in this area, focusing on 2012-2014 publications. :)

Anonymous said...

Oh... and there are many neurotypical PhDs unemployed, underemployed, or even homeless. Strawman argument.

jonathan said...

Anonymous 6:27 who won't sign their name. That's a cop out argument if I've ever heard one (maybe you remember that expression popular during my youth) 'nuff said.

......I'm Anonymous said...

I'm so tired of reading these ND'er's comments Jonathan. Without a doubt, these are teens and young 20 year olds who have never had full blown autism, never spent a day in a self contained autism unit or even knew a kid/adult who did. They are old and tired, yet think they are new to all this. They will never acknowledge those with classic autism, which makes them the worst type of bigots.

jonathan said...

@ you're anonymous. I agree with you. The ND movement seems to have a penchant for recruiting those as young as possible. I wrote about that in a post some years ago, "neurodiversity, teach your children well." I get a bit tired of reading their spiel also, but I feel I should publish opinions on my blog that don't agree with my own as long as they are not abusive toward me.