Sunday, April 6, 2014

Autism Acceptance Month PSA

Autism is something near and dear to my heart. Not surprising, considering that JV is autistic himself. So when April rolls around I cringe inside because the conversation is inevitably coopted by anti-scientific, practically anti-autistic groups.

Autism $peaks is probably the biggest autism-related charity in the US, and is definitely the biggest force behind those puzzle-piece ~awareness ribbons~ you see on cars and websites as well as the "Light It Up Blue" campaign for Autism Awareness Day. If you feel moved to donate to them during this month of awareness, though, your money is better spent elsewhere.

1. They fund and encourage bad science instead of support and services for autistics and their families.

A$ is, among other things:
...dedicated to funding research into the causes, prevention, treatments and a cure for autism...
Except that the most likely cause of autism is genetic, so there isn't any possible prevention or cure for it. That 44% of the pie? It's money invested in science that will go nowhere. The only portion of their budget that even has the potential to perform any good is that 4% of "Family Services."

 Not to mention that people who drink the A$ Kool-Aid are more likely to buy into the "vaccines cause autism!!111!" anti-science as well, which is absolutely and totally false. A few of their board of directors even hold to this nonsense.

2. They have a limited understanding of what autism actually is.

Autism happens along a spectrum with varying levels of functionality across different abilities. It runs the gamut from people who can "pass" as neurotypical (NT) to Rain Man-style savants to, yes, the nonverbal cases that A$ loves to showcase in defense of their claims that "autism is stealing our children."

Except that is only a small, limited part of the spectrum. Implying otherwise is disingenuous. Scare tactics like the ones in their "I Am Autism" video don't help anyone; they only encourage negative stereotypes and baseless fears. Never mind that those low-functioning/nonverbal cases are people, too. Not monsters, not burdens....people.

By insisting that the only autism that counts is a narrow slice of that spectrum, and dismissing and ignoring anything else, A$ can target a parent's worst fears: that their child is incapable of communicating with them; that their child will never have a happy, fulfilling life; that something might "take away" their child.

Your child will know love, and happiness, and fulfillment, I promise. They will know all of these things from you. You just need to meet them where they are.

3. They are more interested in "helping" NT parents than actual autistics.

For a charity that purports to help autistics, they are markedly disinterested in input or suggestions from autistic people themselves. They don't have any autistic members of the board of directors. One of the few autistics they did consult with (John Elder Robison) resigned his role at A$ in November of last year because he'd had enough. As he put it in his resignation announcement:
Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.

Of course, A$ isn't the only autism charity getting money this month. The National Autism Association, a strident anti-vaccination group, will be getting 10% of Chili's proceeds this month. Vaccinations do not cause autism. Any group working towards discouraging vaccinations, no matter what other good they might or might not be doing, is doing more net harm than good. Autism on its own has never killed a single person. Mumps, measles, smallpox, and whooping cough have.

What's a good alternative, then?

If the spirit has moved you to donate to an autism-related charity, I cannot recommend the Autistic Self-Advocacy Network highly enough. They are run for autistics, by autistics: "Nothing about us without us." Their current projects include investigating healthcare discrimination, promoting campus inclusion, assisting autistics in crafting resumes and searching for jobs, and more.

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