Thursday, January 21, 2016

Ari Ne'eman's hyperbolic take of In a different Key

The hot new autism book that has recently come out is In a Different Key by Caren Zucker  and John Donvan.  It has some similarities to Steve Silberman's neurotribes in that they both give a lengthy description of the history of autism.  Where they differ is that the latter portrays the neurodiversity in a sympathetic light, while the former treats it with some disdain.

About ten pages of this nearly 600 page tome are devoted to Ari Ne'eman.  Ne'eman published a piece trying to refute what the authors have to say about him and the ND movement.

He starts off his diatribe by playing the murder card, one of neurodiversity's dirtiest tricks, claiming that Donvan and Zuckerberg on page 142 of their book tried to justify the murder of an autistic boy.  They never justified his murder, only stating what the man's defense attorney gave as the rationale that he had killed the boy to put him out of his misery, followed by a distorted logic while profoundly depressed.  His lawyer argued for a temporary insanity defense.  The jury didn't buy it and he was convicted and sentenced to life in prison.  The authors then go on to quote a woman who wrote an article where she only said that the father was not acting out of selfishness as she believed the prosecuting attorney had implied, but had snapped, though she realized this murder could never be justified.  At no time do the authors defend the murder.  Of course, anyone interested can go to page 142 of the book and judge for themselves.

Ne'eman writes how parents can never understand autism first hand because they don't experience what their kids do.  I'm very curious how Ne'eman has experienced autism, how it has debilitated him in any way.  I realize he's stated that he's attended special education at various times for unclear reasons.  That he was bullied for being different and would scratch his face out of frustration til it bled.  He's also stated that he has a sensitivity to velvet textures, has a face recognition deficit, and in a recent blog post commented on a sensitivity to static from a microphone.  Other than that, I have no idea how his autism spectrum disorder has disabled him in any way or how he can claim to relate to the experiences of having autism that I, Roger Kulp, and others have who are truly debilitated by their condition.  He seems evasive when he's asked about this by reporters as Donvan and Zucker correctly stated in their book.  

Next Ne'eman writes:    And far from being about blaming parents, the neurodiversity movement is about shifting the conversation to the real needs of autistic people — to the benefit of parents and autistic children and adults alike.

In fact, neurodiversity has always been about blaming the parents, going back to Jim Sinclair's Don't Mourn for Us speech where he castigates parents for wishing that they did not have an autistic child.  Not to mention Marc Rosen's calling my mother overbearing.  Some of the nastiest members of ND have stated that the reason for my autistic disability is that I had a mother who taught me to hate myself and calling her a witch and a yapping shrew.  Not to mention one individual's statement in the comments section of the Newsweek profile about me that one of the greatest threats to the autism community was my mother.  As far as I know, all of these individuals are members in good standing at ASAN and their membership dues helped pay Ne'eman's $71,000 annual salary in 2013.

Ne'eman also disputes Zucker and Donvan's statement that neurodiversity argues that autism is not essentially a disability, though this is something he's repeatedly stated over the years.

In an NPR interview in 2008, Ne'eman stated:  We're disabled by society, What disables us is, for instance, an education system that's only designed to meet the needs of one kind of student, or societal prejudices which say that autistic people will never be able to live in a community.

Though Ne'eman does not explicitly state here that autism is not a disability, most people would take this statement to believe that he's saying autism is not essentially a disability, because Ne'eman implies that with acceptance and the proper accommodations autism would cease to be a disabling condition.

As older time readers of Gadfly remember, Ne'eman's words from several years ago, which I published after he denied on Lisa Jo Rudy's blog that he'd ever said autism wasn't a disability:

 We see the world in a different way than our neurotypical peers (neurotypical is a word in the autistic community meaning those of the majority neurology). This does not imply a defect, but merely a difference — one that we have just the same right to as those of a different race, nationality or religion.The belief was that anyone society labeled "disabled" could only go so far. Sadly, these misconceptions had the potential to become self-fulfilling prophecies. When the expectation is that people of a certain type can only reach so far, they are not provided with the same challenges and opportunities that educators give mainstreamed students....
In the last paragraph Ne'eman writes:

We should recognize what diversity of neurology has contributed to the human race and what it can bring to the future. Difference is not disability and someday, I hope, the world will recognize that those who think in different ways should be welcomed.

A reasonable person reading these words would seem to get the idea that Ne'eman is stating that autism essentially  is not a disability.

We can also go back further in time to a statement Ne'eman wrote some years ago about whether or not Asperger's (which he's been diagnosed with rather than autism per se) is a disability:

 I happened to stumble upon your entry on a Yahoo Search for Asperger's and I'm glad I did. As a teen with Asperger's, I strongly suggest you tell your son as soon as possible. The fact is he is different. What's more, this is not a bad thing. Any individual who accomplishes anything is different. It's his right and his requirement to know who he is, and what makes him different from those around him. Furthermore,Asperger's Syndrome is hardly what one would think of as a disability. I recommend you take a look at Norm Ledgin's "Diagnosing Jefferson", a wonderful book that suggests that one of the founders of our nation had Asperger's. As I and the book can attest, it is not in spite of but because of the characteristics that set us apart from others that "Aspies", as the popular nickname goes, have the ability to do great things.

The day will come when Asperger's will be recognized for what it truly is: a difference, not a disability, and in many ways an advantage. I think you owe it to your son to talk to him about who he is and help him succeed as that person, not pretend (or worse yet, force him to pretend) to be someone else. I'm somewhat notably successful for my age and as a result I've occasionally been asked to speak to newly diagnosed "Aspies" and at a few conferences about Asperger's and special education in general. One of the things I've always tried to stress is the vital importance of recognizing the advantages of difference and not falling into the trap so many do that different is defective.


I haven't bothered to provide the links, but I think the one to the last statement about Asperger's is still there and can be found in the blog post where I first posted this.  ASAN deleted the article on their web page in which the difference is not disability statement appeared at the time I first blogged about it and the senate was still considering Ne'eman's appointment to the national council on disabilities.

Based on these statements, I would certainly concur with Donvan and Zucker that Ne'eman has stated that autism is not essentially a disability and this has been his belief all along.

Are autistic behaviors considered by some to be pathologic adaptive in nature?  Ne'eman writes:

Many unusual autistic behaviors are important and adaptive in nature. Hand flapping, rocking, and other forms of stimming serve as important means of emotional and sensory regulation for autistic 

children. 

These behaviors cause attention to be drawn to the individual resulting in bullying and discrimination in employment.  While I agree that the bullying and discrimination should not exist, we still have to conform to society, so in that sense the behaviors are maladaptive.  My twiddling (self stim) has made my life miserable.  It prevents me from getting things done during the day and is incapacitating.  It is due to a serious organic brain impairment and I wish something could be done about it.

I don't know anything about the run-in that Ne'eman had with Peter and Elizabeth Bell except for what I read in In a Different Key and what Ne'eman wrote about it in this article.  However, I only hold Pete Bell in disdain for advocating for funding of Alex Plank's and Cubby Robison's Autism Talk TV when he was an executive at autism speaks, even though his son will likely never function at the level of Ne'eman, Plank, or Robison junior.  If the Bells are still unhappy with the neurodiversity movement, I see them as part of the problem rather than the solution. 

As the neurodiversity movement becomes more prominent, I do see them as a threat toward advancement in the science and research that could lead to a greater understanding and treatments that could help mitigate if not cure autism at some future date.  I've now read Donvan's and Zucker's book and I'm glad they question the neurodiversity movement and I hope more in the media will continue to do so, since not too many people read my piddling Gadfly blog where I've been trying to take them on for years.

11 comments:

Roger Kulp said...

I just posted a link to this wonderful tweet by author an stand up comedienne Sarah Hendricx on your Facebook page.I honestly don't know what Hendrickx's beliefson neurodiversity are,but it is one of the best quotes I have ever read about autism,and it really sums up Ne'eman and much of the neurodiversity movement very nicely.

"Feels like those with LD+autism fight to prove they have strengths.Those with no LD+autism fight to prove they have difficulties."

Ne'eman is a hypocrite.He can talk about parents all he wants,but he has no idea what it is like to live with either regressive autism,or any of the other forms of autism with severe disability.There was a video,from 2009,I think,of Temple Grandin speaking at a conference.Te video is no longer available online that I know of.During the Q&A,someone asked Dr.Grandin about regressive autism.All Dr. Grandin said was regressive autism is not the kind of autism she talks about,and she did not want to discuss it any more.Dr.Grandin's reply speaks volumes.Maybe this is because regressive autism tends to be more severe autism,with more complex medical issues.

Medical issues aside,Ne'eman has no idea what it like to be too low functioning to do basic tasks,like cooking your own food or doing your own laundry.To be socially promoted through school,because you were considered "unteachable",because of severe combined behavioral problems and learning disabilities,problems I had before my cerebral folate deficiency was discovered.Nor does Ne'eman ave any idea what the struggles are of those who have both genuine high functioning autism,and serious comorbid mental illness,like my sister does.Having lived with a sibling with this type of autism all of my life,I know how seriously disabled these people can be.I was surprised to learn,a few months ago,just how many psychiatric hospitalizations my sister has had.Some for suicide attempts.It seems to be a very common picture with teens and adults on the spectrum.Especially on the higher functioning end.Unlike,say John Elder Robison,Ne'eman seems to want to ignore this too.The problem isn't a lack of accommodation by society.Most people get that.

The problem is the way autism is viewed by people like Ne'eman and Silberman.They make no delineation at all,between syndromic autism and nonsyndromic autism.The latter is largely ignored by them.I see this as the number one issue we need to keep confronting those who advocate neurodiversity with,before we can have any further discussion.People like Ne'eman and Silberman should always consider regressive autism and autism with multiple comorbidities whenever they speak or write.

Anonymous said...

Can we not throw the baby out with the bath water? Can we at least agree that much (but not all) of the challenges faced by people with disabilities are due to the prejudices of people who are not disabled? It's human nature to fear, reject, or avoid things that are different. This causes people who are different to be rejected, discriminated against, and sometimes even abused. It's not fair for people to be treated that way when they've done nothing wrong. The neurodiversity movement aims to combat this problem. While I don't follow some of their more radical initiatives, I think it's important to foster tolerance and acceptance for those of us who are different. In other words, it's not all bad.

jonathan said...

I will partially agree that there are some challenges to disabled people due to society's lack of understanding and that it's human nature to avoid differences. I agree there is some unfairness. But this does not deny the fact that autism is and of itself an intrinsic disability rather than a difference that can be accommodated for by society and that this will solve all the problems autistics face as Ari Ne'eman has stated.

farmwifetwo said...

Yesterday, my severe son wanted to know when he was writing exams. They start Wed. Then I had to remind him his class doesn't write exams. He's in Gr 9, and one of the VERY RARE, severe ASD, not ID, poor adaptive skills, poor verbal skills, can out read kids his own age, but infers the world in black and white, emotionally normal severe ASD "children, teens, adults" out there. Or as the "guy that knows all about ASD" says he's the perfect example of the DSM V's dx once you remove "behaviour, IQ, speech" criteria's. In other words.... too smart for his own good, yet very disabled.

So... I have little use for the ND crowd who think he should embrace his disability. He wants to go to college. He thinks he should move out and get married. Truth is, the chances of that are rare to not going to happen. Luckily, although I may have to fight the entrance requirements, there is a Dev College program for students in his program.... He's in the HF developmental class (they wanted to put him in the LF class and I won that fight) where he pushes the other kids to learn academics and they teach him speech and social skills.

"Feels like those with LD+autism fight to prove they have strengths.Those with no LD+autism fight to prove they have difficulties." Roger.... exactly. Which is why I won't allow my HFA, headed for Univ, "cured" son to claim he's autistic.

So... how do you tell a severely autistic teen that he's disabled????

Ray Rees said...

I feel like since most of us are Neurodivergent in one way or another (usually Autistic), our opinions do matter and should be listened to by researchers. We want acceptance and accommodation and we don't want a cure.

I didn't read the entire article, but what I did read was Ne'eman saying we must be listened to. I have no idea why that's controversial. I do agree that Ne'eman has sold out the Neurodiversity Movement, but I can't find any fault with that point.

There is no anti-cure movement for diabetes mellitus because DM is a disease that attacks you, but a lot of us feel like Autism (or whatever else we are) can't be separated from us.

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

Ray,

You don't even know what autism is if you believe in that claptrap.

salpurdy786@gmail.com said...

Dear All, I don't even know where to begin, as you've all brought up so many interesting points. Yes there is a "claptrap" dialogue going on,in the Autism community, if it is a community, and not merely an aggregate, and it seems to be part of the new "ethic", if we can call it one. Why should anybody pursue Peace, when there is SO much to be made on Endless War--war out there, or war between, say the LD and the HFA people, which I know is NOT what the poster said, necessarily, but I do get the sense of two marginalized/vulnerable populations being pitted against against each other, possibly as "blood" sport, for the amusement of others--you can't fight chickens legally anymore, or dogs, not that i'd want to, but people don't have the same kind of protection. There is an old saying: "People who live in glass houses shouldn't throw stones". Right now, we are ALL in a very fragile glass house. Dena Gassner, who was on that "infamous" thirty-second TV spot, and was attacked viciously for what she said, along with the others, by another blogger, name withheld, which made me INSTANTLY want to go find her, and share information/network, with her and others, the latter skill which is almost non-existent with me. She sounds really cool, and not a "Yay Autism! NT's stink--more severely Autistics stink", kind of person--NO she isn't, from what I know, at all. I identify with her, even though I never had children, and I was never abused at home, only when I got out into. As far as the aforementioned kid who had no social skills, and barely made through High School--I was that kid. I had NO idea how the world worked, except from what I learned from my family, and from reading Psychology books. I could do the laundry, and so forth, EXCEPT when my Neurology has one of it's nasty turns, (The Cortisol Kid--that's me.) which it does frequently--yes, this chickabiddy is going into Menopause, an those of you who are female and over 40-something KNOW what that means--also, the world has trebled its speed, and most of us are going to be left in the dirt. Besides, I'm fed up with all the BS. There is NO transparency in society anymore, and I am hardwired to be unable to deal with the other stuff, unless I get gobs and gobs of support, but guess what? The days of the Great Society are over for good, unless somebody can work a miracle, and fast. I would NEVER say, I'm non-disabled, as I draw SSI every month, and I don't believe in the zero-sum game where if you get something, you're taking something away from somebody else, no. But, the medical system, the welfare system, and everything else, is severely broken in our society, and I'm not going to try and "fix" it--too much wheel spinning. I've downsized my life greatly, and tried to reduce my expectations, which as a literal thinker, is REALLY hard. Good luck all, You're going to need it.

spinoff said...

But is disability the same as illness or disease? An illness is an active process which evolves, can be treated with more or less success, can kill you or can leave you with a disability. The Convention of Rights of Persons with Disabilities in its preamble says: “..a disability is the result of the interaction of the subject’s deficiencies and the environment, which is inadequate for being “normal”.... Diabetes is a disease, the blindness that it produces is a disability and to some extent daltonism o severe short-sightedness are too. ? And neither pedestals, nor drugs are useful things, Braille, guide dogs, and glasses are.
The definition of the Convention should solve some of your disputes Jonathan. It does not deny the reality of the deficiencies and burdens, although there are disputes about their nature, nor does it deny that the end result depends on external factors. And this is something I have seen with my own LD + autistic son. He is now going to a centre for the disabled where they adapt somewhat to his rituals, and let him spent lots of time tearing newsprint to thin ribbons, listening to music, and interacting with him with few demands. He loves it. His challenging behaviours, have disappeared, and he loves food life and being with people. Very different from the school from which he was excluded, where a sort of ABA program ended up with him bleeding and us parents blamed for not “bending” him for not wanting to medicate him.
ABA was to bend him into normality which he could not do, medication to justify the failure of the program. The exclusion opened our eyes to accepting him. You see you both would be right if you saw the disability as a burden but that would no prevent you from fighting for your rights. To normalize people with LD+autism we have seen all kinds of abuses, from aversion to neuroleptics; some have added disabilities and diseases. Some have died. Yet my son who does not speak can teach you Jonathan to be realistic and the neurodiverse to be humble and both to fight for your rights. You do not have to conform to society, you have to conform to the laws and some like the Convention say that it is society that in some ways has to conform to you. Or, should not an achondroplasic have a adapted car, o should there not be wheelchairs and ramps.

Ray Rees said...

Anonymous,

.... I am Autistic and all I said was "Autistics should be listened to and Autism is part of who we are!" I've lived Autism since birth. I know what it is like.

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

Ray, tell us where you went to special ed. schools and made such a remarkable recovery as to write about "rights". Let us verify.

Shanti said...

Ray - You said "we don't want a cure." It is true that some don't want a cure, but just because you are autistic doesn't mean you can use the collective 'we' and speak for all autistics. No one said that autistics should not be listened to nor accommodated. Gadfly's point here is that autism is a disability and Ne'eem flip flops on 'disability' as it works for his argument of the moment.