Stop Bashing Autism Speaks!

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The voices on the internet that expressed dissent against Autism Speaks did not exist, in significant numbers until 2004, about the time that Autism Speaks started up. AFF and WP in 2004, and ASAN in 2006. Creating awareness for Autism in the general public as well as autistic individuals, for the most part who are considered HFA/Aspergers having a voice as a community, on the internet, is a relatively new concept.

The fact that Bob Wright was the former President of the NBC broadcast Network, means he probably understands marketing very well, if not an expert, and had many connections of individuals in the industry to help with the marketing campaign at the start. The perspective and concern at the beginning was focused on the type of autism that their grandson had and the parental fears associated with regressive autism. There was more to learn about other forms of autism as time went on, to understand perspectives are different among people with different expressions of autism.

One thing to consider too is the actual percentage of HFA and AS cases identified and diagnosed of all identified cases of ASD's in the US.

http://en.wikipedia.org/wiki/Epidemiology_of_autism

According to statistics from Wiki, about 10 percent of diagnosed cases on the Autism Spectrum disorder are HFA and Aspergers. About 5 out of 10,000 diagnosed with Autism and about 4 out of 10,000 diagnosed with HFA. Close to 70 percent are diagnosed with PDD NOS, out of all diagnosed ASD disorders. Close to 20 percent with classic Autism are diagnosed out of all diagnosed ASD disorders. Rhetts and Childhood Disintegrative disorder are rare.

From a statistical point of view HFA and Aspergers is still extremely rare. A majority of the voices that have expressed dissent on the internet are within that 10 percent, not the 90 percent of other autism spectrum disorders, but Autism Speaks is attempting to listen to that minority and make some adjustments based on the opinions of the minority, as they are statistically seen.

The potentially largest majority of high functioning autistic individuals are potentially neither diagnosed, identified, or have any idea they have a form of autism. It is part of why the actual numbers of autistic individuals dissenting and expressing an opposing view and suggestions are so few in number, in relationship to the total number of diagnosed cases of ASD's.

It is also why it is so important to have voices like Tambourine man speaking within the organization, presenting points of views that are not normally heard by those that support the Autism Speaks organization.

It certainly hasn't been a terrifying cloud of doom as they portray it.

Sure. When Autism Speaks employs a single actual AUTISTIC, I'll give a damn about their fearmongering.
Until then, they're satire to me.

Autism is neither good or bad to anyone, it just is. Everyone has to deal with something in their life, for some of us it is Autism. The problem starts when a group of people treat it the same as breast cancer/MD/MS/polio/etc. and set about to find a "cure." Well, Autism is not something you "get" or "catch," it is something you are born with. There is no cure, so why throw all sorts of time & money on a hoped for cure? It would be much better to look for ways to help people function better and live better lives. I'd like to see a "cure" for school, job placement, and dealing with social situations.

They have employed several. They have hired me for jobs, have paid well, and have not censored any of my work.

Watch episode 17 of Autism Talk TV for evidence of autistic employment by Autism Speaks.

http://www.google.com/search?q=autism+t ... 24&bih=690

They have hired me as a journalist to give an "autistic perspective" on events that they are involved in. And, once again, they do not censor my work and allow me to speak my mind and say what I feel.

Unfortunately, it is a terrifying and hellish ordeal for some people. Online Aspies full of righteous rage should really get acquainted with the suffering and devastation of severe autism. It isn't pretty. Some of these people have to be supervised and restrained 24 hours a day to keep them from seriously injuring themselves. They have bowel problems. They have epilepsy. They are confined to adult diapers. They scream and cry endlessly. They are suffering.

These are the people Autism Speaks set out to help. They didn't expect to run into a bunch of plucky, self-advocating Aspies screaming neuro-racism all day long.

Now they are making up for their oversight.

Tambourine-Man Wrote:

I think that it's fair to say that life can sometimes be a terrifying and hellish ordeal for some people with Autism, but to say that Autism is a terrifying and hellish ordeal for some people is flawed because we don't have a clear definition of what Autism is.

I don't agree with describing Autism as "severe" with those Autistic people you described above and "not severe" with many of the people on this site. I don't believe that Autism is a strictly negatively-affecting condition where the more you have it, the worse you are. It is just a label given to people who exhibit a certain set of behavioral traits.

The problems that the people you describe experience are due to a complex set of medical issues, many of which have nothing to do with Autism. One that you listed was epilepsy, which although co-incident with Autism, isn't itself part of Autism. I keep coming back to it, but I really think that the poor definition of Autism lies at the root of these arguments.

Exactly, there's quite a few co-morbid conditions that are entangled with Autism. In fact nearly all the negativity that's portrayed about Autism is actually caused by these co-morbid conditions, not Autism directly.

Here's a list of them: http://en.wikipedia.org/wiki/Conditions_comorbid_to_autism_spectrum_disorders

Deduct everything else except Autism, and Autism itself would appear as nothing more than an eccentricity in social behaviours.

How about being unable to speak or wipe your own bottom? Or not hit yourself in the head.
I do not think of my sons inability to talk is a 'difference', it is a disability. There is nothing useful or special in that - for him, for me, for anyone else. A cure for whatever it is that prevents him from talking would be great, and I reject the premise that it will never be possible to have one since we don't even understand the mechanism yet.

He was talking to Nostromo.

Could I see these examples?

Both aghogday and nostromo are or were parents of autistic children. How interesting.

I think nostromo is that you were projecting your negative experiences with autism on to actual other autistic people who don't have severe disabilities like your son. We aren't all the same.

I think some of us also project our lack of negative experiences (not you specifically Gedrene).

Medically speaking, autism is nothing but co-morbid conditions. It is a list of similiar deficits and disabling characteristics lumped together under a vague label by a bunch of doctors.

Here is one example from Part III. This conversation really took place, and I find this thread to be quite complimentary.

---

I thanked Shih and wandered off to abduct someone important for our next interview.  Luckily, I was distracted by a group discussion in the dining area.  Marc Sirkin, Peter Bell, and Steve Silberman were gathered together in heated debate.

“Do I hear opinions?” I said, plopping into a nearby seat.  “I’m sure you’re all wrong.”

“Nice to see you again,” Steve said.  “We’ve been discussing autistic self-advocacy.”

“Uh oh,” I groaned.  “The last thing we need is a pitchfork wielding mob parading through Alex’s shots.”

Marc laughed.  “It is a controversial subject.”

“Has anyone seen my soapbox?” I said, looking about.

“Huh?”

“Oh, I’m already standing on it… Black and white thinking is a recognized symptom, and one which casts a troubling shadow over autism politics. We’re not characters in some autistic version of Star Wars.  This isn’t about heroes and villains… though I wouldn’t mind seeing Peter here cross light sabers with Ari Ne’eman.”

“You’re a storm trooper… but your scene was cut.”

“Autism Speaks has made mistakes.  We’re all learning.  Autism was poorly understood when I was a kid.  I lived 24 years without a diagnosis.  Awareness is spreading.  It is only natural to see more people being diagnosed.  We finally know what to look for.”

“Aren’t you offended by the notion of a cure?” Steve asked.

“I don’t know what that means, and I’ll give five bucks to anyone who can offer a simple explanation.”

No one made a sound.

“Anyone?  Mark?   Bueller…?  Bueller…?”

I’d have to remember this little challenge the next time Alex needed a quiet set.

“Good, I’m broke anyway. Autistic pride is great, but we need to remember those who can’t advocate for themselves, or communicate at all.  The promise of a cure brings hope to many devastated families.”

“False hope?” Steve asked.

“Maybe, but people need hope.  More importantly, they are willing to pay for it.  We may never find a cure, but there is no telling what will be discovered along the way.  Knowledge is a powerful asset.  I’m not opposed to genetic research, but I’d like to see a greater emphasis on services and support – that’s why I’m sitting here with you fine people!”

The conversation continued for some time, everyone offering valuable insights.  I realized, quite suddenly, that precedents were being broken all around me.  For far too long, the autistic community has been relegated to either side of a massive, ideological divide.  In that moment, we were unknowingly constructing a bridge.  This was truly an unlikely meeting of minds, and a rare dialogue.

----

These were my opinions long before I had spoken to anyone at Autism Speaks. They are my opinions today. I have refused to praise their every endeavor. On their own website I talk about the impossibility of a cure and write of the need for services, support, and acceptance. That message reaches far more people through their website than it would anywhere else.

I will go with the largest platform and the widest audience, but my message remains the same. It is a message of moderation and cooperation in a an all too divided community. It always has been.

Please visit this link for a list of all the articles I have written for Autism Speaks (I think there six or seven).

http://blog.autismspeaks.org/?s=John+Scott+Holman+

Here you will find many examples of the message I am sending. I frequently write about embracing my individuality and persevering in the face of adversity.

Tambourine-Man Wrote: (quoting someone else.)

Huh? Is it me or is the person you are quoting admitting to either contemplating exploiting the false hopes of families for money, or actually even admitting to it? If I'm misunderstanding something here I apologize, I'm having difficulty understanding the the context of this conversation.

Yes! And i wasnt quoting someone else, i was quoting myself. I basically claim that the cure is a marketing scheme to generate money for valuable research, then go on to say that some of this money needs to be going to services and support.

They printed THAT on their website. Change of direction?

Exactly. For all you know nostromo we don't have any specific issues similar to your son. I myself understand the fact that autism is a junk taxon and I think to be honest we should get rid of the autism epithet at the centre of our understanding so we can actually get down to the nitty gritty of actual conditions where cure is either a waste of time or unethical and where it is actually required.