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Friday, October 9, 2015

It is Time to Revive an Autism Movement

From Forbes Magazine

By Emily Willingham
September 25, 2015



In an interview with CBS reporter Bianca Seidman, Neurotribes Author Steve Silberman makes the following point:

“The initial mission of the parents’ movement — the autism parents’ movement — was to change laws and develop resources and build schools so that the world was a better place for autistic kids,” said Silberman. “All that energy got diverted into a dead-end argument about vaccines in the 1990s.”

And what a diversion it was. The consequences of a retracted 1998 case series of 12 children have reverberated through society, affecting public health, vaccine research, and strikingly and profoundly, autistic people themselves.

Seen as poisoned changelings deprived of their original selves by ‘toxins’ in vaccines and characterized in dehumanizing terms by Suzanne Wright, co-founder of the largest autism-related organization in the country, children diagnosed as autistic have been subjected to non-evidence-based efforts to ‘cure’ them of their condition.

Some parents have used actual poisons and turned to peddlers of every form of snake oil, convinced by practitioners and true believers alike that these efforts were the only way to exorcise the autism from their afflicted children.

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Emerging sometimes quite scathed from that wicked brew of toxic attitudes toward autistic people is a growing movement of collective self advocates and their allies, people who want to see society work more toward accommodations and supports and resources for autistic people and less toward unproven cures or preventions.

But they aren’t the first to try.

As Silberman details in his book, some parents tried that decades ago. From the CBS article:

"The book also describes the efforts of the original autism parents’ movement, led by Ruth Christ Sullivan, whose son, Joe, was one of the models for Dustin Hoffman’s “Rain Man.” Beginning in the 1970s and ’80s, they worked to build community and provide the kind of resources that could help autistic people thrive as adults over the long term."

Then came that Wakefield distraction and redirection and the fear and panic that led down rabbit holes and dead-end paths to nowhere, and certainly nowhere useful for autistic people.

As Silberman also details in his book and as I and others have noted before, autistic people, including adults, have been around for decades. Through childhood and into adulthood, they have either been disappeared into institutions or gone without the supports they needed, at first because of the personal and political distractions from clinicians in the ’70s and ’80s, and then because of the vaccine red herring.

Prior to that, the history of autistic people is chilling and horrific, one in which they and others who were disabled served as the Nazi’s trial run for the Holocaust.

As Silberman said in the CBS interview, in the last few decades, while non-autistic people threw money at the wrong things and looked away from needs, autistic people were there all along, “surviving at the margins of society.”

Some non-US studies suggest a consistent autism prevalence of 1% across age groups. Silberman points out that no one knows for sure in the United States because in the furor over vaccines and the incessant distractions looking for causes and cures, no one in the US has bothered to assess US adult prevalence.

If 1 of every 100 people in this country had some other disability, they and their allies would be demanding that we do something about it. Some now are.

Autistic advocates, thanks to the Internet, can connect and communicate in ways they couldn’t before and work for themselves to push for resources and supports. Allies and advocates can work together to ensure supports and accommodations for them.

Meanwhile, Autism Speaks, which likes to say that “it’s time to listen,” evidently doesn’t think it’s time to listen to autistic advocates and devotes a small fraction of its annual monies to these goals.

According to Autism Speaks’ president Liz Feld, the organization has “funded more than $1.2 million” to 57 organizations to expand services for adults with autism. That seems like a big number until you realize that averages out to just over $21,000 per funded entity.

It seems even more limited when you look at their financials from 2013 and 2014 and realize that the overall number is about what Autism Speaks spent on “Catering” in 2013 and a lot less than it spent on “Travel, meals, lodging, and other transportation.”

The National Institutes of Health funding for autism research is similarly sparse for research into adult needs. Some autism-related groups emphatically reject the idea that autistic adults exist because recognizing that they do would mean acknowledging that vaccines of the latter 20th century couldn’t be to blame for autism.

In the CBS article, Silberman calls for change:

“Our society needs a massive reset in terms of its priorities,” Silberman said. “One of the main problems facing families now is their children aging out of services. Yet almost all of the funding into research goes into investigating causes.”

It’s time to do more than listen. It’s time to act, it’s time to look around and see what needs to be done for autistic people, adults and children, across a lifetime and fund it. It’s time to learn how parents and friends can support autistic people as allies in reviving a movement that began more than once but fizzled in the face of personal ambitions.

Let’s not allow the needs of autistic people to become a footnote in their own histories yet again.

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Emily Willingham, Ph.D.
I am a journalist and biologist. My book, The Informed Parent, with co-author Tara Haelle, is available for pre-order. Read more about me here and find me (too often) on Twitter.

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