The Autistic Journalist

Using words to explain the mind

Autism “thunderstruck” by new controversy

with 7 comments

Think the vaccine debate is the only hot topic brewing in autism’s domain? If vaccinations were, they’re not alone anymore. Another lightning rod has surfaced in the form of 22-year-old Ari Ne’eman, who was nominated to the National Council on Disability by President Obama. Ne’eman’s nomination is currently on hold. If confirmed by the Senate, Ne’eman would be the first autistic person to serve on the council.

Sounds like a benchmark, right? Why Ne’eman was placed on hold may not be determined since holds can be issued anonymously (Obama’s seven other nominees to the council were confirmed earlier this month). What isn’t helping his situation is criticism he’s received by some autism advocates for his belief that autistic people should be accepted as a form of neurodiversity instead of being cured.

If you’re new to autism, it’s often referred to as a spectrum disorder because symptoms and severity can range. The common thread is impaired social interaction, but they could have anything from no verbal language to savant skills in communication. Ne’eman himself has Asperger’s, considered a high-functioning form but now a candidate for possible removal from the autism spectrum. Ne’eman is the founder of the Autistic Self-Advocacy Network and his belief mirrors a  growing movement that autism should be accommodated and not eradicated, citing the steps taken for people with physical disabilities, including ramps and bathroom stalls.

Ne’eman has spoken with the New York Times before, suggesting that pursuit of a cure, instead of improving quality of life, will provide few benefits to severely afflicted autistic people. Critics argue his philosophy only represents people who can communicate and take care of themselves. Autism Speaks, whose mission is to finance research for a cure, says Ne’eman fails to understand or sympathize those affected more severely than he is.

Autism Speaks’ rebuttal is hardly a surprise since Ne’eman himself criticized Autism Speaks over a fund-raising video last year. While Autism Speaks is the largest advocacy group in the country, their views are rarely met without criticism that began with the release of the Autism Every Day documentary 4 years ago. Critics accused the film of depicting autism as a disease that doomed the inflicted and anyone surrounding him or her. It’s worth noting that Autism Speaks doesn’t have anyone on their board with autism spectrum disorder.

I mentioned in my post about Wakefield’s ruling from the General Medical Council that the story crossed one controversy off a very long list, and the biggest squashing of the vaccine-autism link would open the door for another hot topic to swoop in. The vaccine debate still lingers, but a cure/no cure rivalry could be a candidate to take over the hot seat. The size of Autism Speaks allowed them to take the first swing at addressing the topic to a national audience when mainstream reports finally made the airwaves and newspapers about 5 years ago. After reading this article, I’m almost certain that journalists have gone away from the overview and moved to the more complex controversies surrounding it. I produced a documentary series on autism a few years ago as I was unsatisfied with the lack of digging from mainstream media, and it appears I won’t be digging alone anymore.

Regarding the story itself, Obama may have nominated him as a reflection of his attitude toward the treatment of different communities. Instead of a hard-line strategy that many consider a benchmark of the Bush years, Ne’eman’s beliefs and accomplishments in his own right could have persuaded the president to recruit someone who could speak for a group that rarely gets a chance to do so. Although a stretch, Ne’eman may mirror Obama himself: both have advocated for topics that aren’t necessarily popular or understood because they believe it’s the best way to make progress in the country. Whether they’re right or wrong is not my place to decide, I’m just discussing a theory on why Ne’eman was given the nomination.

The controversy of responding to a growing autistic population carries a few parallels with the hot buttons surrounding the gay/lesbian/bisexual community. In fact, you could replace autistic with gay in articles and chances are the story would still make sense. While I doubt we’ll see autistic marriage bans, the sense of panic over difference definitely carries over.

If Ne’eman is confirmed, and there’s nothing to suggest that won’t happen, pay attention to any statements released by him or his critics (primarily Autism Speaks). If both sides get big enough to dominate air time on cable news or print space on newspapers, the nomination could serve as an origin. Controversies are ugly, but Ne’eman could potentially be the springboard for other high-functioning autistic people to not only advocate their own stories, but perhaps pursue their dreams knowing that it’s truly possible for them to contribute to society in a meaningful way. I’m still waiting and attempting to create my chance 😛

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7 Responses

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  1. […] The rest is here: Autism “thunderstruck” by new controversy « The Autistic Journalist […]

  2. And what about the low functioning autistic persons like my son? Ari Ne’eman does not speak for him and does not share his challenges. It is morally reprehensible for Ari Ne’eman to oppose research aimed at curing autism disorders.

    Harold L Doherty

    March 29, 2010 at 6:11 am

    • Ari’s stance on “cure” is irrelevent because the National Council on Disability does not fund or make recommendations on medical funding for cures, treatments, genetics, or causes of ANY disability. All they do is advocate for services, supports, accomodations, housing, and jobs. That’s exactly what Ari is good at. His position will not in any way directly affect “cure” based research, federal or otherwise.

      Furthermore, the NCD does not “represent” all disabled people. They may or may not have a blind person, for example, but they can still advocate for what the blind need. There are only 15 seats, so obviously not every disability will be represented.

      Katie

      March 30, 2010 at 4:02 pm

  3. I feel that those who want a cure for autism are at risk of violating and damaging the human rights of those who do not wish to be cured, like myself. If a cure ever became available, every autistic would be under pressure to be ‘cured’ by society and do-gooders who have no idea of the way which I live, and the benefits I receive from a non NT point of view. I know in my heart that autism is fundamental to who I am, what I was born to be, and I would never change it.

    louise

    March 29, 2010 at 3:36 pm

  4. Lousie you have a right not to be cured if a cure becomes available. At the same time you have a right to be cured if you should choose.

    You do not have the right to tell another person they can not be cured should a cure become available. For the severely autistic, particularly when they are children, it is their caregivers, in most cases their parents, who have the right to make that choice on their behalf.

    Harold L Doherty

    March 30, 2010 at 2:21 am

  5. […] last time I talked about Ne’eman, he was still awaiting a Senate holdout blocking his confirmation. The hold, which can be placed anonymously, was later dropped, but not before controversy swelled […]

  6. Hello SportsBrain!
    I stumbled upon your site while looking into this debate/controversy, and I was pleased to see an interesting and objective discussion of the issue. I am a parent of a 4 year old with ASD, and I have been trying to understand the… venom… in this current debate. Your article helped me clarify the issues. I also noted you are from MN, as am I! So, smart and from a cool state…. love it! I would love to hear more about this topic, and I plan to follow you! Thank you again!

    Pia
    http://www.thecrackandthelight.com

    pia

    September 22, 2011 at 11:41 am


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