Autism Speaks, and NPR + Autism Speaks

Before I begin, I want to emphasize that everything in this post is accurate to my knowledge, but don’t take it as gospel because my knowledge isn’t comprehensive or impeccable.

“Before you go on, I want to explain why your lived experience is irrelevant here.”

Moving on: NPR is sponsored by Autism Speaks.

(That, I know to be accurate with 100-percent certainty.)

I don’t know how long this has been going on, but it’s been in the past few weeks that I’ve been hearing their live reads during NPR’s morning programming — it’s, like, this great group that’s so supportive of people with autism (never, of course, “autistic people”) and their families, and it also supports NPR.

It’s such a punch in the gut to hear it every morning. Every morning. I listen to NPR as I get ready, both to keep me informed about the world and to have some much-needed background noise while I’m getting dressed and putting on my makeup, and I never don’t hear at least once that the programming I love is brought to me by Autism Speaks, which then gets a fifteen-second live read bragging about services and resources they don’t actually provide and messaging I know they don’t really believe. They talk about how much they love me and want to help me, and I know it’s bullshit. But there they are, right there on my radio in a sponsorship break during Morning Edition.

In case I haven’t made myself excruciatingly clear: Autism Speaks is not good. And I’m not the only autistic person who feels that way — many actually autistic people (like, the people who are autistic, not the ones who regret having to parent autistic people) vehemently object to its messaging and the focus of its advocacy. Regardless, Autism Speaks claims to support the needs of autistic people — sorry, “people with autism” — while evidence suggests otherwise, and hearing its praises sung during my morning programming is kind of a blow.

What am I talking about? Oh, lots of stuff.

Autism Speaks a good game.

The sneaky thing is that on the surface, Autism Speaks seems like a supportive organization. A lot of the things they promote seem, on the surface, to be positive. Early intervention, for instance — for some kids, autism comes with challenges that, with things like speech therapy and occupational therapy, can be addressed to make their life easier to live. Support shaped around the individual child — finding alternate ways to communicate with a nonspeaking kid, rather than trying to force them to speak, and finding ways for an active kid to move around nondisruptively, rather than trying to force them to sit still, and actually dealing with the emotions and stressors behind destructive behavior rather than just restraining them or punishing them — can make a difference in a child’s ability to function in the world.

But ABA is abuse — like, flat out, not like “I believe ABA is abuse” but straight-up ABA is abuse — and is focused entirely on making an autistic kid appear “normal” — “indistinguishable from their peers,” to pull a direct quote from the founder of ABA, to whom I’m not going to link because fuck him — no matter how damaging that is to the kid themself. Through positive and negative reinforcement, it trains kids to suffer through painful sensory experiences, deny their emotions, deny their physical needs, and force themselves into stressful situations by dictating behaviors. ABA practitioners insist that they aren’t actually abusive, that ABA is changing and becoming better, that they have never done or observed abusive things, but even when they provide selective details about what they do, it basically tones ABA down from “conversion therapy” to “dog training for human children.” And that’s what Autism Speaks promotes to parents who are grieving their broken child.

Autism Speaks tragedy.

And yeah, “grieving.” And again, it’s something that, on the surface, is somewhat reasonable. I do actually think it’s natural for some parents to grieve (I wish we had a single word in English for “brief nostalgic regret over something that’s not going to happen”) when their child is diagnosed with autism — they probably had all kinds of images of how their childhood might go, how they might interact, what they might do, and now they’re looking at what could, potentially, be very different from that. Having an image and then realizing it’s not going to happen is difficult. Wanting to be a pilot and then finding out you’re colorblind is difficult. There’s going to be a degree of grieving involved.

But it’s just that — it’s a degree of grieving, about things that aren’t going to happen, not about some earth-shattering tragedy. Something you wanted isn’t going to happen, and you feel sad about it for a bit, and then you move on. You find out you’re not going to be a pilot and you find something else to do that you might also love. And you find out your kid is autistic and you adjust your dreams of what their childhood is going to look like. The kid isn’t fucking dead, they’re autistic. But if you listen to Autism Speaks, they’re just about as good as equivalent.

I sympathize with a parent who has to come to terms with the fact that their reality isn’t going to match their dreams. But a parent who’s grieving because they’re getting a real-life kid and not some Instagram fantasy tot? Fuck you. My personal policy is to accept that people will feel what they feel, and feelings are valid, and they’re something to work through, or whatever, but in this case: Fuck you. You can mourn — briefly — the life you thought you’d have but actually won’t, but you don’t get to Kubler-Ross your way through your feelings about your dead imaginary perfect child. And the Kubler-Ross method is exactly what Autism Speaks prescribes to deny, anger, bargain, and depress your way to accepting that you have the child you have and not the child you want.

My deepest sympathies.

Autism Speaks evasively.

Now, Autism Speaks purports to have been responsive to its critics. It’s changed its ways! It’s reformed! It’s been visited by three ghosts, and now it has one (originally two) whole autistic person on its 27-person board, after a full decade of having no autistic representation — no actually autistic person with an opportunity to speak — whatsoever. In 2015, it finally caught up with the science that makes it abundantly clear that vaccines don’t fucking cause autism.

In 2016, it removed the word “cure” from its mission statement, possibly in recognition that autism is an extremely complex condition affecting multiple aspects of an autistic person’s life in ways that are unique to each individual and not some disease that can be removed from the body like a tumor, but probably in recognition that “cure” had bad optics and they’d be better off without it. Now, they purportedly focus on services that make life better for autistic people and their families, while dedicating more of their research grant money toward causes and treatments than actual services.

Per their 2021 annual report (PDF there), 21 percent of their funding goes to Services and Support. But if you look at the specifics in their 2021 audited financial statement (another PDF), you’ll see that only 1.25 percent of their total Program Services expenses go to “family service grants, awards, and science.” That’s just over half as much as goes to “printing and promotion.” And while the annual report says 15 percent of their Program Services funding is dedicated to Science, the financial statement reveals that only 8.2 percent of that actually goes to “science grants, awards, and science.” That’s less than they spend on their website and advertising expenses.

They claim they want to listen to autistic voices, they claim they want to provide services and support, they claim they’re not working toward a cure. They talk a good game. The game they actually play doesn’t exactly match the talk.

But who does Autism Speak for?

“Are you done yet? Let me know when you’re done. I have important contributions that probably contradict whatever you’re saying, but, like, whatever.”

The thing about Autism Speaks is that they’re cagey about who they speak for — and in the end, it isn’t for autistic people. It’s for the families of autistic people, and for both the researchers who want to understand us better (which is good) and the ones who want us gone (which is fucking horrible). Actual autistic people don’t get a voice, and when we try to speak up, we’re shouted over by parents spewing horror stories about how terrible it is to have to raise a child who doesn’t speak, doesn’t convey love in the way the parent would like, needs extra help with things like learning and the activities of daily living. We don’t matter, our voices don’t matter, our lives and experiences are irrelevant, because there are unhappy parents whose lives are difficult.

Parents and caregivers of autistic people do need to have a voice, and they do need to be able to advocate for themselves, because parenting an autistic kid isn’t always a picnic. When communication is a challenge, when they engage in destructive behavior, when they have other co-occurring disabilities, it’s not an insignificant thing, and I won’t pretend that because there are autistic people like me, who can communicate clearly and live independently, there aren’t also autistic people who require a lot more support. And that that need for support doesn’t have an impact on the entire family.

But goddamn, why do the needs and preferences and priorities of those parents and caregivers supersede mine? Why do they get to be universalized as the voice of autism when I’m here, perfectly capable of speaking for myself? When people with those high support needs are capable of speaking for themselves, if they’re given the opportunity and support to do so? Why, when what they say is in conflict with what actually autistic people say, do the parents and researchers always win out? Where do they get off calling themselves “Autism Speaks” when the actually autistic people are being systematically silenced?

[Insert petition here for Autism Speaks to change its name to “People Who Resent Autism Speak.”]

Autism Speaks over autistic people.

It happens every time: If you’re able to speak for yourself, you’re deemed too “high functioning” (ugh) to be able to participate in the conversation. Even if you don’t speak but can communicate some other way to advocate for yourself, the fact that you’re able to do so excludes you from the conversation. Conveniently, the only autistic people who qualify to participate in the conversation are the ones who are unable to do so, but luckily, they have parents and guardians who are happy to speak for them. And do so loudly, and at length.

Apparently, there is a huge, major, significant difference between autistic people who are able to advocate for ourselves and those who aren’t. Apparently, that’s a dividing line at which our needs completely change, our potential completely changes, our best interest completely changes. That’s the only possible reason that the things we say, that we ask for, that we object to, can be so directly overruled by the parents of Autism Speaks.

Right? When a nonspeaking autistic person who sometimes becomes aggressive writes a blog post about specifically why that happens and how they could be supported to prevent it, are we to assume that their experience is vastly different from a nonspeaking autistic person who sometimes becomes aggressive and doesn’t have internet access? When a nonspeaking person uses an AAC device to say ABA is abuse, does the fact that they’ve been given an AAC make their experience vastly different from one who hasn’t?

But that’s the constant argument. Anyone capable of speaking up, in any way, by any method, must be too “high-functioning” (UGH) to understand, and you can’t possibly know what it’s like to live with someone who can’t speak and sometimes lashes out at loved ones, even if the voice being dismissed is that of someone who knows what it’s like to be that someone. Even they have no way of understanding what life is like for the children of Autism Parents(TM). Of course, parents who aren’t autistic have no way of understanding what life is like for people who are, but that’s not what matters here. What matters here is that autism gets one and only one voice, and it’s not the voice of anyone who’s actually autistic.

NPR doesn’t have to speak for Autism Speaks.

I recognize that NPR isn’t exactly flush with cash, and they aren’t in a position to be rejecting donors right and left. But they have to have some standards. They have to have limits set somewhere. (Right? They have to have some limits.) And an organization that’s this objectionable, that’s been this objected to, should at least brush up against those limits, right? It’s not like the controversy is has been obscure, or in the distant past — it was just over two years ago, in the fall of 2019, that the Autism Self Advocacy Network broke ties with Sesame Street because of its partnership with Autism Speaks, and it was pretty damned explicit about its reasons for doing so. If NPR wanted to vet its sponsors, there’s plenty of readily available information for them to see.

As with any good, ethical media source, NPR’s business and reporting departments are completely separate. That’s precisely as it should be. But it still has a responsibility to provide accurate information in its programming. It still has a responsibility to fact-check and make sure it isn’t misleading. And yet every morning, it takes a moment out of its programming — the programming I used to enjoy unreservedly — to tell us that Autism Speaks “is working to create a world where all people with autism can reach their potential.”

Citation needed.

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