Column: Autism Speaks promotes hysteria, ignorance

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Column: Autism Speaks promotes hysteria, ignorance

Tue. May 05, 2009; Posted: 07:21 PM

U. Oklahoma, Norman, OK, May 05, 2009 (Oklahoma Daily/UWire via COMTEX) -- TOY

Autism Speaks is the world's largest and most prominent autism advocacy

organization. Through its partnerships with Toys " R " Us and other businesses and

its stable of celebrity spokespeople, it is able to raise well more than $30

million per year.

It would be natural to assume that donating to such a medical charity would be a

good thing. Advances in the efforts to cure diseases such as breast cancer and

AIDS have come largely as a result of widespread public concern. Wouldn't a few

dollars one might otherwise spend on luxury items be better placed in the hands

of Autism Speaks?

Contributing to an organization that speaks up for autistic individuals would be

wonderful. With my donation, this group could campaign for greater understanding

and acceptance of those with autism and help influence society in such a way as

to be more accessible to them.

Such an organization would be well deserving of your and my support.

However, such an organization also would be pretty much the polar opposite of

Autism Speaks.

Autism Speaks, whose sole concern seems to be " fix[ing] " those with autism,

engages in scaremongering, distorts facts and dehumanizes those they are

supposedly speaking for, all as a matter of policy.

Autism Speaks has likened having autism to being in a car wreck, being struck by

lightning and being fatally ill. Autistic children are said to have been

" kidnapped " from their families.

Learning to live with and understand a person's autism-related characteristics

is not an option-- autism must be defeated, and the person rescued.

This attitude has been most effectively distilled in an advertisement designed

by the unrelated New York University Child Study Center.

The ad, which is presented in the form of a ransom note, reads, " We have your

son. We will make sure he will not be able to care for himself or interact

socially as long as he lives. This is only the beginning. [From] Autism. "

This variety of approach, while no doubt useful for scaring up donations,

obviously promotes the stigmatization of autism.

Autism Speaks is abundantly eager to engage in these tactics. Autistic children

are " stolen " from their families - soulless husks, they live lives devoid of

human emotion, or so the portrayal goes.

The incitement of hysteria fills Autism Speaks' coffers, but at the cost of

further alienating a group of individuals who already face numerous social

challenges.

The most unsettling example I've seen of Autism Speaks' dehumanization of

autistic individuals is contained in their 2006 film " Autism Every Day, " which

features, among other things, a mother claiming that she would have murdered her

autistic daughter but for the existence of her other, neurotypical daughter.

That this would have been an insane or at least critically misinformed choice is

not highlighted.

Individuals on the autism spectrum, when not being obliquely portrayed as

soulless androids, are turned into mascots.

My favorite example of this is the Toys " R " Us-associated charity that offered

donators of $10 or more a complementary tote bag decorated with art by a real

autistic person. Oh boy! For $20 can I get a souvenir photo taken with him, too?

How is it, one might wonder, that an autism advocacy organization could be

comfortable promoting these views?

Why don't those autistic individuals involved in the group's running do

something to moderate its speech?

The answer is that the autistic are not represented, even by a single

individual, in the group's leadership.

Perhaps having an autistic board member would betray the fact that autism

doesn't render one totally nonfunctional.

Autism Speaks is like an all-white NAACP.

The organization also spends a significant portion of its budget researching the

connection between childhood vaccination and autism.

The hypothesis that vaccination can lead to autism is unsupported by any

evidence and runs counter to what we do know about autism's probably primarily

genetic basis. But this has not stopped Autism Speaks from pouring funding into

research on the topic, presumably in the hope of finding a link which would

accentuate the paranoia around autism.

The truth is that, while individuals on the autism spectrum face difficulty

integrating into a society constructed by and for the neurotypical, many

autism-associated idiosyncrasies are useful and positive.

Take, for example, the characteristic attention to detail and fascination with

repetition that led artist Andy Warhol, who was probably autistic, to create

some of his most recognizable works.

Recognizable contemporary individuals on the autism spectrum include actors Dan

Aykroyd and Daryl Hannah, singers Ladyhawke, Numan, Craig Nicholls (of the

Vines) and Tork (of the Monkees).

In fact, many high-functioning autistic individuals and individuals with

Asperger syndrome ( " aspies, " for the hip) prefer to live as they are, regardless

of the inconvenience, and find the notion that they must be rescued from the

ravening demon of their autism insulting.

But, even if one accepts the premise that autism must be controlled (presumably

through prenatal testing and abortion, as with Down syndrome), Autism Speaks

remains an unprincipled organization that actually fights the understanding and

acceptance of the people it purports to represent.

If you'd like to contribute to an organization making an effective effort to

improve the lives of autistic individuals, I'd suggest the Autistic

Self-Advocacy Network, found online at www.autisticadvocacy.org.

The next time a Toys " R " Us cashier tries to guilt you into giving a few dollars

to Autism Speaks, buy yourself an oversized Chupa Chups instead.

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