Okay, so I came here to do a piece on Autism Speaks. But uhhhhgggg…. it just depresses me. Depresses me is actually the wrong word. It turns my stomach into knots. It triggers my conflict anxiety, and then turns it up to 11. So the reality is, I really just don’t want to talk about it.
Anyway, many people have done it better before me, so I will give you my opinion then a list of links and information for you to check it out yourself.
Autism speaks came on the scene in the mid 2000’s around 2005. The diagnostic criteria for children had just been opened to include much more of the spectrum including what was known as Asperger’s syndrome. So there were a lot of parents looking for resources. Autism Speaks came about to fill that resource void.
They are technically a non-for-profit charity but the way they use the money that they raise is often a little suspect to most actual autistic people. They also do not consider the voices of the autistic community when dishing out funds or grants. And for the longest time, perhaps even still, their main focus is a cure. To most autistic people, talk of a cure is insulting.
In my opinion, we don’t want a cure for autism. We want cures for the hundreds of comorbid conditions that often plague autistic people. We would like to be autistic without ADHD, without OCD, without Apraxia, without horrible gastrointestinal issues, without food sensitivities, without immune disorders. The list goes on and on. Now you may say, but you have all those things because of your autism. I don’t think so. Because you don’t have to be autistic to have ADHD. You don’t have to be autistic to have Apraxia. You don’t have to be autistic to have a learning disability. Being autistic might mean that you are more susceptible to these conditions, but we are more susceptible to A LOT of things. Like hyperosmia; do you know who else gets hyperosmia? Pregnant women. Are we looking for a cure for all pregnancy? Are we trying to “END PREGNANCY NOW”? Do we pity the people who have pregnant people in their families? No. No, we don’t.
But Autism Speaks did or said all those things to autistic people, or more in particular, the families of autistic people. They are trying to turn their checkered past around with a more kind and inclusive approach, and I applaud that. But I also share the opinion of Sarah Turner aka Autistic Barbie, she tweeted @autismspeaks when they introduced their new “rainbow puzzle piece” to represent a new era of inclusivity-
How powerful would it be if your organization just admitted ignorance & fault towards the mistakes you made in the past, issued a public apology, and subsequently, truly included autistic individual input moving forward?
Imagine the impact and power of your transparency in allocation of funds, restructuring, rebranding, creating a new inclusive organization and designating leadership to autistic people within it…isn’t it time to set your ego aside and just work together?-Sarah Turner
Honestly I think it has a lot to do with the damn puzzle piece and identity politics. So many people really grabbed hold of Autism Speaks identity, in a time where all they wanted was to help their children. So the puzzle piece logo became a rallying cry for their community and their children. But their children are grown up now, it’s been over fifteen years, and they don’t like what Autism Speaks has to say about them. (I won’t even get into the extremely insulting media campaigns that portrayed autism as a deadly disease or a serial killer hiding in the bushes. It was shameful.)
But the parents have already internalized the puzzle piece as part of their identity, and they can’t see why #ActuallyAutistic people are getting upset about it. So they start developing ideas like “Autistic privledge” or functioning labels that still portray their children as somehow less than human.
No one is arguing against the fact that some autistic people will need support their entire lives. No one is doubting that some autistic people have serious intellectual disabilities. All we are saying, is we are alive. And we have worth. The majority of us aren’t a burden. And none of us are dying from autism. If anything, we are dying from horrible “cures” like bleach enemas. Or the biggest “cure” of all, familicide. That’s right, disabled people are being murdered by their families because they are “better off dead.”
Now… I am not saying that Autism Speaks wants to murder disabled people. I don’t want that to be what you take away from this post. But they are perpetuating a culture of infantilization and abuse in the guise of good parenting. And I never want to support that. In fact, if Autism Speaks cares so much about the “burdens” autism families face, we really need financial help for medical bills and safe housing for intellectually and physically disabled adults who need more support.
Please, please keep your puzzle pieces, they are sweet and charming. But also, separate your icon from a company that does nothing to support your children. Start seeing your children as people, not emotional burdens, not permanent babies, and most importantly, not victims.
Remember, you don’t have to be “high functioning” to live a good life. You don’t even have to be smart. I’d say being smart often gets in the way of that. You need a good support team, love, respect, and a little bit of space. So if that means that your intellectually disabled adult autistic son lives in an apartment over the garage, or a SAFE community home/school where he is respected and watched out for, or even, his childhood bedroom with a lock on the door that he controls, that is still a successful life.
They don’t have to be a lawyer like my husband, or an advocate like Sarah Turner, but they do need the respect that all human beings deserve.
So next time you hear someone talk about Autism Speaks, you don’t have to get angry, that’s not how you change people’s minds. But you might consider suggesting the Autistic Self Advocacy Network, or any of the other autistic support groups that include autistic collaboration and respect.
Autism Speaks made people aware of Autism. That is good. I will give them credit for that. They have also raised thousands upon thousands of dollars, that’s great. I just would like to see them change. Do like Sarah said and put aside the past and listen to the community they claim to serve. Honor the new diagnostic criteria about women and stop suggesting to “light it up blue.”
(Yes. Blue as in boy. Because only boys “get” autism. WTF.)
And as a disclaimer, I do not check off all the boxes as a perfect autism advocate. I think that certain comorbid conditions of autism are debilitating. And if there was a way to wipe out all those conditions with the elimination of my personality type, I would probably take it. I would do that for my son.
(My son has both Apraxia and Dyspraxia. It is downright painful. I would legit wipe out everyone’s personality type if I could help him speak without the anger and frustration that builds up with his processing issues. Maybe if we were all the same, people would stop being ableist assholes. Probably not.)
I also put my son into a preschool that uses ABA therapy, a controversial, sometimes emotionally harmful, practice. We have our reasons, most of them having to do with the availability of other therapies, insurance coverage as well, and I would be happy to tell everyone about our experience, both the wonderful and the questionable. (It’s 95% wonderful, by the way. Although I think that has more to do with his therapists and this particular school than ABA therapy itself.) So there are no easy answers when it comes to such a complex conversation.
The point is… you can’t “cancel” Autism Speaks without erasing a whole generation of parents who just wanted to help their children. And you can’t give Autism Speaks a pass just because they want to have a “year of kindness.” I believe those that support Autism Speaks should evolve, but I also don’t think they should be regarded as monsters. Wrong and misinformed, but not monsters. And they should be allowed to keep their puzzle piece tattoos because they are darling, and they had to hurt.
It’s a lot to discuss. Hence, the need to bring in the other experts… Here is a list of links to help-
- Autistic Self Advocacy Network
- Sarah Turner aka Autistic Barbie ‘s Instagram
- That article in Forbes by Emily Willingham entitled “Why Autism Speaks Doesn’t Speak for Me” -this is where I learned about the regrettable media campaign “This is Autism.” Do yourself a favor and don’t look up the actual commercial, or the CEO of the time’s keynote address. It’s infuriating.
- This note from the FDA about dangerous “cures” for Autism. I am not putting this on Autism Speaks, but rather the “cure” culture that AS perpetuates. Also, MMS is the bleach enema one, they kind of gloss over that. Read the quote from a snopes investigator from a mother about how her two year old “cried really hard” after her first bleach enema “but things are just getting better and better” …That’s not just child abuse, I think that carries over into sexual abuse when you consider that you are forcibly inserting… Jesus wept, I can’t even finish the statement. Autistic people are statistically more likely to be abused, let’s leave it at that.
- Recent Washington Post article about Autism Speaks’s new look.
- From a new fave Autistic Mama, “5 Shocking Reasons NOT to Light it Up Blue”