Autism Speaks in 2018: Frankly, I’m Torn

 

“Autism Speaks has a lot of potential with its media presence, public name recognition, celebrity connections and fundraising power.  It could do a lot of good, if directed differently.  I hope that happens one day.” – John Elder Robinson in his resignation letter to Autism Speaks

I really want to like Autism Speaks.

They’re the largest (or at least most well-known) autism organization in the United States, if not the world. They are behind a lot awareness campaigns — a lot more people know what autism is (if even the most basic and rudimentary understanding) thanks to Autism Speaks (and I know, I know, acceptance versus awareness, but awareness is the first step towards that acceptance).  It would be incredible to be aligned with that much power, that many resources, that large a support base.

And they do get some things right.

There are people that I’m friends with who have worked alongside some of their local chapters, and, from what I’ve heard, the local chapters are actually very helpful and accommodating for the autistic people that work alongside them. There are parents who got much needed information and resources from their local chapter.

They not only promote but give resources towards early detection and intervention, which, if done with the proper respect and care, really can improve an autistic person’s overall quality of life a lot.

They are also focusing more on adult diagnoses and living as an autistic adult.

They have a toolkit for addressing “challenging behaviors”, and, while there are more than a few things that worry me about this toolkit (such as it including stimming as a “challenging behavior” on the sole basis that it annoys others/marks the autistic person as “odd”..and…also…left-handed handshakes?? [see Appendix 2 of the linked doc]), the toolkit actually makes some really awesome points, such as pointing out that behavior has a function, that the autistic person using that behavior is doing the best they can in a given situation, and that the most crucial “team member” for understanding that behavior is the autistic person themselves. While it mentions restraints and seclusions, it stresses that these should be used as a last resort, mentioning that improper use can have seriously bad consequences. It even encourages caretakers to take care of themselves and gives them resources for when they feel overwhelmed (it does mention residential care, but that’s loads better than the alternative…).

Their scientific goals, while stilling focusing on finding a genetic cause (which many in the autistic community fear could be used to “screen” for autism pre-natally, but terms like “prevention” or “cure” are not used in their three-year plan), also explicitly acknowledge the needs of autistic people living today:

“Meanwhile, individuals and families affected by autism need solutions now. This includes care guidelines and more-effective treatments for autism-associated health conditions such as epilepsy, sleep and GI disorders, as well as associated mental health conditions such as anxiety and depression. We also urgently need evidence-based programs supporting the transition to adulthood and the little understood issues that arise with aging. “

Their “World Of Autism” claymation ad is utterly adorable.

They do have several videos featuring actually autistic people (the video I linked, “Dating on the Autism Spectrum”, features a super cute autistic couple and is really interesting in general), and they’ve gotten better at asking for and sharing autistic input on their social media (they share a lot of genuinely helpful and interesting things).

They have two autistic board members.

Because of all of this, and because I’m a forgiving person by nature who doesn’t like holding grudges, I really do wish that I could say that this is enough, that this step in the right direction is a big enough step for me to walk with them. I want to support people who are doing good things, especially those doing good things for the autistic community. I want to be able to wear blue during the month of April and not feel like I’m supporting something that doesn’t support me or the people I love; outside of any autism-related anything, blue is one of my favorite colors in general.

 

But there are still wounds.

 

For one, the Judge Rotenberg Center is still open and still torturing people. The National ADAPT organization has done an excellent job of bringing awareness to the injustices performed by this terrible place and demanding that it be shut down.

You’d think that the world’s leading autism organization would have something to say about a publically known instance of autistic people being shocked, starved, and beaten on a regular basis. 

To be fair, Autism Speaks did condemn the Judge Rotenberg Center. In 2012. And then added them as a service provider for their DC walk in 2013.

And they haven’t said exceedingly much — nothing else that I can find — since then.

There’s also, as mentioned above, an anti-stim stance. When a parent asked about their adult daughter’s stimming (non-injurous stimming; humming and repeating phrases) to relieve work stress, their reply suggested that stimming was a “regression” and that it was only a “short-term solution” (though they’re absolutely correct that therapy could be helpful if she really is unhappy at her job, and props to her parents for noticing that she’s stressed — though they, themselves, say that the daughter can “express herself and respond”…so why isn’t anyone talking to her about her unhappiness?).

 

On that note, where were they on the Disability Day Of Mourning? They did support a Family Support Toolkit on twitter that day (March 1st), though they didn’t mention the Day Of Mourning at all, and I’m not sure if the sharing was related or a coincidence. Regardless, they hadn’t said much about the filicide of disabled/autistic children, which, given both its pervasiveness and its tragedy, is a bit surprising.

 

Their glossary definition of “challenging behaviors” doesn’t help this sentiment any [underlines added by me]:

“…behaviors that are destructive and harmful to the individual or others, that prevent learning and cause others to label or isolate the individual for being odd or different

While being isolated or ostracized isn’t fun, I can’t help but find it problematic that a behavior being considered “odd” is enough to make it considered “challenging” and, thus, in need of being “treated.”

 

Their funding priorities are still very skewed — only about 4% of their 2016 budget (the most recent they have available) goes towards services that directly benefit autistic people (here’s their annual report, for those that understand financial reports).

They strongly support ABA (Applied Behavioral Analysis), which was established with the goal of making autistic people behave as non-autistically as possible and which is still decried by both autistic people and by former therapists for being emotionally and psychologically damaging to the person receiving the therapy.

 

And, perhaps most woundingly of all, they never did give an explicit apology for the very hurtful things that they did in the past. For the 2013 Letter To Congress (which has since been removed from their website, but Suzanne Wright strongly implied that autistic people where “shells of themselves” and “not really living”). For the “I Am Autism” video [here’s a transcript from ASAN]. For knowingly keeping a clip in their “Autism Every Day” video that talks about a mother wanting to end her autistic daughter’s life in front of said daughter (though, if this article from the mother is to be believed, the mother is in a better place mentally now). For threatening to sue a teenager for satiring them.

For the persistent negative attitudes about autism and how we affect those we love and who love us, the same attitudes that would bring me to my knees sobbing, wondering if I ruined my loved one’s lives and wondering if they’d be better off with me dead.

And perhaps I never really healed from that. Perhaps I still feel guilt and self-loathing about not being a “better” daughter, a “fully-functioning” adult, and perhaps I need something to hate besides myself. And perhaps Autism Speaks is a convenient target for that — a large number of autistic people hate them, too.

Which also adds fuel to the fire — if that many autistic people are still that opposed to the organization (just check out the #actuallyautistic tag on twitter or Facebook), if the continued dislike for them is that strong, then there must be something there, right? (Admittedly, a lot of people still hold anger for their past actions. They, too, want an apology. They’re also cautious that a look into causes means a look into cures and preventions — eugenics, in another word.)

 

Now, a friend of mine (one of the ones that have worked with Autism Speaks locally) pointed out that it doesn’t have to be black-and-white when it comes to my support of / against Autism Speaks; I can promote what I like about them while condemning what I don’t.

There’s also the fact that even if Autism Speaks did issue that apology, give more funding to autistic individuals and their families, and address the Judge Rotenberg Center and other atrocities affecting autistic people, I’d still give most of my support autistic-led organizations like the Autistic Self Advocacy Network and the Autism Women’s Network.

And, honestly, I deeply considered ignoring the topic of Autism Speaks altogether while showing my support for those organizations.

But the topic of Autism Speaks is so loud, be it through Autism Speaks’s own media and awareness campaigns, including torrents of celebrity support, or through the yearly lashback against Autism Speaks.  Autism Speaks is going to be discussed pervasively, in intense detail, one way or another on April 2nd (World Autism Awareness/Acceptance Day). So I almost feel like I have to take a side — are they a flawed but well-meaning organization bringing light to an important cause, or are they still working against the best interest of autistic people and should be shunned? Do I actively and personally try to turn others away from donating to Autism Speaks, or do I leave them be while promoting different organizations?

Share the memes or don’t share the memes? (The anti-A$ memes will be plenty and likely very witty and clever)

As the title of this post suggests, I’m still torn. My answer to those above questions seem to change by the minute — one minute, I can accept the progress they’ve made as enough, and, the next, I want to throw the whole organization away, and, the next, I want to push them out of my consciousness altogether (this post has taken me four DAYS to write for that exact reason — there are a lot more delightful, less cognitive-dissonancing autism related things to focus on than this).
What I think I’m going to do– and what I  may actually do during the month of April may change — thus far is this:

-Promote the organizations and speakers I like. Lift up the voices of Julia Bascom, of Amy Sequeniza, of Judy Endow, of Max Sparrow (Unstrange Mind) of Chris Bonnello (Autistic Not Weird), of Nathan McConnell (Growing Up Aspie), of Parenting Autistic Children With Love And Acceptance, of Erin Clemens, of Chloe Rothschild, of…okay, I can spend hours doing this, but the point is that there are a lot of people that I think are worth listening to, and I’ll do my best to share the mic so that these people can be heard over all of the…everything else.

-Try to voice some useful things into the Autismsphere myself. Post more about my experiences as an autistic person (anyone here want to hear about Pokémon Go? Aaaaaanyone?) and what I think of issues affecting autistic and similarly neurodivergent people. I thought about doing a post for every day during the month of April, but that’s a big commitment for someone who posts here as infrequently as I do.

-Spread a heckton of autism positivity. Is autism all roses and rainbows? *glances at marks on arms that have been here for weeks since I took an unsharpened pencil to it during a meltdown* Hell no! But there’s enough autism negativity out there for all of us. There’s a lot to celebrate and embrace about the autistic experience, and the more we do celebrate those things, the closer we become to living in a world where autism is seen as a natural and acceptable variation of the human experience that, while it may present some challenges (as does being a Person of Color or Female or LGBT+), is ultimately worth having in the world.

-This includes going #RedInstead on April 2nd. This is one of a few times a year that you’ll catch me taking a selfie…or at least one that makes it to the internet.

-Ultimately, people are going to support who they want to support and donate to who they want to donate to, and there’s only so much that I can do about that. When asked, I’ll talk about the organizations that I, personally, would donate to and why. I’ll mention my reservations against Autism Speaks, the grievances I still have, the things I wish they’d do. I’ll try to keep it as objective as possible, not “they’re a terrible organization” or “they hate autistic people” but “there are some things that have happened and are still happening within that organization that don’t jive well with me.”

-Seriously, though, fuck the Judge Rotenberg Center. If you’d like to tell the FDA to also fuck the Judge Rotenberg Center and anyone who would ever try to use similar tactics, here’s a letter for you to sign.

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