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Jake Crosby’s great big straw man

10 Jun

I’ve said it before—a blogger could spend his entire online time debunking blog posts from the Age of Autism. Between the pseudoscience and the bad policy promoted on that site, it is draining to just read it on a regular basis, much less respond. A few weeks ago a particularly bad post came through and I wanted to respond but, frankly, I just didn’t have time. The post was by Jake Crosby about a (then) upcoming article in Newsweek about Ari Ne’eman.

It is no secret to people who read this blog that I admire Mr. Ne’eman. A rough analogy is that Ari Ne’eman is to autism advocacy what David Mandell is (in my mind) to autism science: a person who is asking the right questions and staying above the vaccine debates. Mr. Ne’eman founded the Autistic Self Advocacy Network (ASAN).

It really is worth taking a few minutes to read the Newsweek article. I read it online, read Kev’s blog post, and then stumbled upon it in my doctor’s office last Friday.

Erasing Autism

Scientists are closing in on the genes linked to autism. So why is Ari Ne’eman so worried?

Since I am discussing Mr. Crosby’s blog post, you should read that as well. The history leading to that post is somewhat sad. A reliable source I know says that prior to the publication of the Newsweek article, Stephen Shore leaked the information. This led to a blog post by John Best, including death threats. Jake Crosby at the Age of Autism decided to blog his own misconceptions about it. Here’s one bit of advice for Mr. Crosby: when you are pickup up stories from John Best, fired Generation Rescue “Rescue Angel”, you are putting yourself in really bad company**. I am sure Mr. Shore did not intend to precipitate a blog post by John Best. At the same time, I hope Mr. Shore is somewhat chagrined to realize that this happened.

Mr. Crosby’s blog piece had a fairly simple theme: “don’t publish the Ari Ne’eman article; interview me instead”. Or, failing that, “Give me equal time”. We all knew (and I assume Mr. Crosby is intelligent enough to know as well) that his was an empty commentary: the article was already in press. There was no way to either pull it or to add Mr. Crosby’s comments*. But, it makes good blog fodder and may get Mr. Crosby’s foot in the door for future articles by Newsweek. Somehow I doubt Newsweek is impressed by strawman arguments, but, who knows, Mr. Crosby might appear on their radar now.

Let’s do what Mr. Crosby didn’t do. Let’s really look at what is being said and done by Mr. Crosby, Mr. Ne’eman, ASAN, Newsweek…you know, let’s discuss some facts.

Mr. Crosby has taken on one of the Age of Autism’s favorite tactics: the “straw man argument”. He pretends that Ari Ne’eman promotes the idea that autism is not a disability. There is a common tactic amongst those who dislike Neurodiversity: try to define it to be something it isn’t. I understand the motivation: it is really hard to go out in public as an autistic or the parent of an autistic and say “I am against a movement that thinks autistics deserve civil rights”. But, they people try this argument all the time. Case in point, Mr. Crosby’s blog post:

Neurodiversity is an ideology supported primarily by some autistic individuals and parents who do not believe that autism is a disability, and opposes any potential cure.

The statement was clearly false when Mr. Crosby wrote it. Mr. Ne’eman clearly considers autism to be a disability. I hope that Mr. Crosby was duly embarrassed when the Newsweek article was published, including a simple statement outlining Mr. Ne’eman’s position on the autism spectrum:

It’s a disability, yes, but it’s also a different way of being, and “neurodiversity” should be accepted by society. Autistic people (he prefers this wording to “people with autism,” a term many parents use, because he considers the condition intrinsic to a person’s makeup) must be accommodated in the classroom and workplace and helped to live independently as adults—and he is pushing to make this happen for everyone on the spectrum. They should also be listened to.

See what I mean? I find it amazing that a person with an ASD like Mr. Crosby could be against accommodations, independent living, and acceptance as people. So, rather than address this issue head on, he builds his straw man.

The real argument, we all know, is about the “cure” question. Mr. Ne’eman believes that Autistics should be allowed to say, “I don’t want a cure” and “please respect me as for who I am: autistic.” For those using pity politics to promote a cure agenda, people like Mr. Ne’eman are very tough obstacle to overcome. Case in point, a quote from the Newsweek article:

“There’s a misperception that autism is some thief in the night that takes a normal child and places an autistic child in its place,” he says. “That’s not true.”

Mr. Crosby has cast his lot with the pity-politics groups represented at the Age of Autism blog. That’s fine, it is his right. He is even within his rights to misrepresent other people and organizations in order to further his own ideology. I don’t think it is a good idea, or that it makes sense, but it is his right.

Mr. Crosby makes a number of completely unsupported assertions.

Yet, it appears there has been a mainstream media blackout on those of us within the community who publicly disagree with that point of view.

When I first read “Media blackout” all I could think was: do a Google news search for Jenny McCarthy and for Ari Ne’eman and get back to me on that one, would you Mr. Crosby? But, Mr. Crosby is lamenting the fact that autistic voices that dissent with Mr. Ne’eman are not heard. Well, perhaps that would change if, say, Generation Rescue or any of the other organizations who sponsor Mr. Crosby’s blog writing would put autistic people in prominent positions? Isn’t it ironic that this is exactly the sort of thing ASAN is promoting? Nothing about us without us. If Generation Rescue would listen to ASAN, perhaps Jake Crosby would have his platform. Instead, he supports groups that have no autistic representation.

Mr. Crosby uses another common Age of Autism tactic: use every chance possible to promote the “epidemic”. He argues against the “epidemic denialists” who don’t agree with the mercury-autism hypothesis. One thing I admire about Mr. Ne’eman is that he doesn’t spend much (if any) time on the “epidemic” and, instead, fights for the rights of people with disabilities.

Jake Crosby has to dig deep in order to find reasons to criticize Ari Ne’eman. Case in point, from a second blog piece by Mr. Crosby:

Then the Ari Ne’eman piece ran online a week later and then in the May 25th issue, where he professed his anti-cure views while expressing an unfounded fear of the unproven idea that autism can be prevented through eugenics.

Mr. Crosby plainly gets it wrong. The argument isn’t that autism can be prevented through eugenics. The argument is that with a good genetic test, one might in the future prevent autism through eugenics.

If one can find anything amusing about eugenics discussions, it might be this: Jake Crosby disagrees with JB Handley…and JB Handley agrees with Ari Ne’eman. You see, JB Handley has also raised the worry about genetic testing leading to a form of eugenics in a piece Autism Speaks: The Abortion Industry’s Best Friend.

Mr. Crosby closed his first blog post with this lament:

Unfortunately, I have not been as active as I would have liked since I am in college and just declared my major in history

Let me just point a few things out to Mr. Crosby: While an undergraduate, Ari Ne’eman has founded ASAN, worked in numerous states on bullying issues, special education reform, assisted living supports, issues for adults with autism and he was instrumental in getting the “Ransom Notes” ad campaign pulled. Mr. Ne’eman works with other disability groups to give advice to the federal government at high levels.

I don’t think he got where he is by making obvious staw man arguments about people he disagrees with.

Perhaps that is why Newsweek wants to talk to Ari Ne’eman and people like Mr. Crosby and myself are just blogging.

*Mr. Crosby has noted that he did not know that it would be difficult or impossible to pull or change an existing story. He also did not know beyond a vague “couple of weeks” how soon the article would be published.

**Mr Crosby states that his information did not come through John Best. I take him at his word and appreciate the fact that he doesn’t want to be associated with Mr. Best.

Ari Ne’eman on autism

16 May

Ari has had a quite wonderful piece on him in Newsweek. It takes on the hard questions for Ari and he answers them with the aplomb that has come from years of hard work of learning to be an excellent networker:

Ne’eman battles a strange kind of image problem: his critics accuse him of not really being autistic. His mother, Rina, is particularly sensitive about this. “People who see Ari today have no idea where he’s been,” she says. As a young child, Ne’eman was verbally precocious but socially challenged. “I didn’t understand the people around me, and they didn’t understand me,” he says. He was bullied and ostracized—back then he didn’t look at people; he flapped his hands and paced incessantly (he still does both today); he brought newspapers to elementary school as leisure reading. “I think the word ‘freak’ may have come up,” he says. He was, at one point, segregated from his peers in a special-ed school. That led to struggles with depression and anxiety so severe he would pick at his face until it bled. I asked Ne’eman how he manages all the professional mingling he does today. Small talk makes him uncomfortable, but he’s learned to play along. Still, none of it is easy. “You come out of a meeting and you’ve put on a mask, which involves looking people in the eye, using certain mannerisms, certain phrases,” he says. “Even if you learn to do it in a very seamless sort of way, you’re still putting on an act. It’s a very ex-hausting act.”

This is a common attack tactic from people like Jake Crosy at AoA or Harold Doherty. They demean the efforts that autistic people such as Ari have needed and still need to put into their lives to advocate for their own beliefs in favour of the promotion of their own limited and limiting set of autism related beliefs. But as history has shown, its people like Ari – those who are willing to be openly challenged about what they think who will win the respect of people.

Well done Ari, I’m proud to think that you are representing all manner of people on the spectrum, from the very high functioning Jake Crosby to the very low functioning such as my daughter. Thank you.

Neurodiversity in action

6 Sep

On….(wait for it)…..the Age of Autism blog.

Have you recovered yet?

A new guest piece has been posted on AoA from a student who has Asperger’s Syndrome named Jake Crosby.

Its a very well written piece and Mr Crosby expresses his viewpoints very well. However, I don’t agree with many of them at all although I respect his right as a self-advocate to say them. He begins thusly:

These are the ways I have been impacted by my AS; I can’t think of anything positive it has done other than my sense of accomplishment after overcoming some of its challenges.

Well, you are in good company! I have heard many of the autistic bloggers on the Hub say exactly the same thing. Of course, some go further and say that their right to be who they are and live as they are within a sometimes less than tolerant society is also gratifying. I wonder if Mr Crosby feels the same.

However, a small, new camp is emerging from within the Autistic community of Aspies who believe AS and even Autism in general is a great thing.

Hmmm, I’m not sure I’ve ever seen anyone say autism is a ‘great thing’ with no form of context. I’ve seen it simply referred to as part of who someone is and that it (as an entity) has no properties. In other words, its neither great, nor terrible, it simply is what it is.

I’d also like to educate Mr Crosby about this ‘small new camp’ he refers to. It is neither small, nor new and nor indeed does it refer solely to Aspergers – or even autism. Its first use dates back to 1997 – a year before the emergence of the autism/vaccine hypotheses. It now encompasses tens of thousands of people worldwide and has widened to include people of varying neurological differences such as OCD, Tourettes, Dyspraxia, Dyscalcula, Manic Depression (chest bump) and a multitude of others. See ‘Mad Pride’ for example. I don’t believe any of us are saying that we do not live with a disability. What I gather from conversations with others like me is that the word ‘disabililty’ does not define or limit our existence. That there is good as well as bad and that nothing in life is as black and white as Mr Crosby sadly wants to see it.

Mr Crosby makes a variety of intelligent challenges:

This politically correct group of people says that Autism is not a disorder, but a “way of life.” They deny that any environmental factors such as mercury and vaccines could have caused Autism and they claim they were meant to be Autistic. Most of all, they rail against any potential for a “cure,” and see wiping out Autism as synonymous with wiping out the people themselves. While there are many mildly Autistic people like me who are busy trying to overcome our challenges as much as we can and severely Autistic people who are struggling to even speak a word, this crowd is getting more and more vocal about their staunchly pro-Autism views.

Again, Mr Crosby is attempting to paint life as black and white. Autism _is_ a disorder. It is also a way of life. I also know of at least one neurodiversity advocate who staunchly believes vaccines cause autism, although my personal opinion based on all available evidence is that it does not.

I personally don’t rail against a cure. I have no opinion on one since one does not exist. I know Alex Plank who runs Wrong Planet – a very large online Asperger’s community – feels the same. In 2006, the actor Stephen Fry made a documentary about manic depression. I’m sure if one visited any number of Torrent sites one would find it. At the end of it, he asked all his interview subjects a question: if you could press a button that would remove your manic depression, would you. the vast majority said ‘no’.

Sadly, Mr Crosby’s piece then degenerates into the core anti-vaccinationism we all know exists on Age of Autism:

Despite this, these people are determined to see AS as a positive advance in nature, not a negative impact from toxicity or any other cause. When confronted with the emerging information that the 6000% increase in Autism is related to poisons in vaccines that are overused, they instantly say there’s “no evidence,” citing the pharmaceutical/CDC party line. Similarly, they ignore mountains of independent studies that show the link to Autism just as the CDC has. While the “neurodiversity” advocates and the pharma-goons clearly have separate agendas, they act similarly.

With all due respect to Mr Crosby, these views and statistics are ridiculous and not based in any kind of reality or science. There are in fact, no reputable studies that link vaccines to autism. Unfortunately, a goodly remainder of his piece carries on in this vein. he then reiterates his main theme:

If only they would stop pretending Autism is in any way beneficial, and realize that their true strengths are who they really are, and that their disability is not. I can’t speak for all, but as someone with Autism I can say these people with my same condition who claim to speak for me do not. I do not believe these people speak for the majority of people with AS. No one else I have known with Autism has actually said they liked having it and I have yet to actually meet these people who do.

Mr Crosby seems to be missing the point of self-advocacy. To _some_ autistic self-advocates, their autism _is_ beneficial. To Mr Crosby, it seems it is not. It is largely a matter of perception and choice in my opinion. I have no idea who (if anyone) speaks for the majority of people with Asperger’s and I’m not sure it really matters that much. What matters is that all people with all forms of disability have a right to express their opinions and share their experiences as those who live the daily reality of living with those conditions.

It is great to hear autistic self advocates like Mr Crosby speak out – particularly on a site like Age of Autism where the views of autistic self advocates have never been welcomed before – and aside from the rather embarrassing and unnecessary sections of his post regarding vaccines, he makes some good and interesting points.

However, I feel that he has, like many before him and no doubt many after, misunderstood what neurodiversity is. I’d gladly have a conversation with him regarding neurodiversity and what it actually is, who it affects and what I think it means to me and my family.