Still Waiting

I don’t enjoy writing about Autism Speaks. There hasn’t been anything coming from the organization, since it was founded over 10 years ago, that makes me feel good.

I write as a way to inform, as a way to debunk the false claims Autism Speaks spreads, as a protest.

There was a time when I tried to talk to them. I tried to reach out. I was ignored then, as I continue to be ignored now.

Text reads: “The reason why the announcement does not make me cheer is that, so far, it is only an announcement. I, like most in the Autistic community, have been burnt out by Autism Speaks dismissiveness, deliberate lies and hostility directed at us.” (the image background is black and the text is a light yellow)

I do write quite a lot about Autism Speaks and here I am, once again, writing about them. The organization has been through some leadership changes that some see as “great news” but my feelings are very different.

One of these changes was the announcement of two Autistic adults joining the Board of Directors. They are the first Actually Autistics sitting at the table, in the ten years of existence of an organization that claims to advocate for us.

Despite the claims of “good news” from some people involved in Disability Rights and Autism Rights, I will cautiously say that this is a first step in the direction of possibly good news.

Note: it is my opinion that two Autistics in a Board of Directors of approximately 30 members is far from actual representation. Any organization claiming to advocate “for Autistics” needs at least 51% of Autistic people in a Board of Directors.

The reason why the announcement does not make me cheer is that, so far, it is only an announcement. I, like most in the Autistic community, have been burnt out by Autism Speaks dismissiveness, deliberate lies and hostility directed at us.

Clearly, any organization going through changes would need some time to reset its goals. It is not even clear that Autism Speaks is trying to change their long stated goals. It is not realistic, or fair, to put the burden of a hope for changes in the two Autistic board members either.

But it’s been a few weeks since the announcement and I was expecting more. I was expecting a public welcome statement from the Board of Directors to the new members and to all Autistics by extension.

“Expecting” might seem too optimistic. It was more like a weak hope for some small acknowledgement that Autism Speaks finally recognizes that our voices matter.

I still think the decision was a marketing move, tokenism, an attempt to silence the loudest critics.

I am not saying that the two Autistics, now in the Board, are going to sit silently and allow themselves to be tokenized. I don’t know them but wish them the strength needed to – I hope – try to move Autism Speaks away from the hurtful rhetoric they’ve engaged in so far, and towards acceptance of all Autistics.

I still think Autism Speaks would have to do a few things IMMEDIATELY, if I am to even give a second thought as to their willingness to really listen to Autistic people:

First, an official and public pledge to never again refer to Autistics as burdens, tragedies, lepers, destroyers of marriages, the cause of the country’s financial troubles, or any similar rhetoric.

Second, a promise to stop mentioning Cure and Prevention of Autism. It is extremely dehumanizing and disrespectful of all Autistics, including the two sitting at the same table with the non-autistic majority.

Third, stop the fear mongering. Parents do need support, but not at the expense of children’s dehumanization. We are not monsters.

Fourth, stop the mention of epidemic, or the CDC numbers. Our neurology is not a disease, it is part of a diverse world and diversity is cause for celebration.

Stop dividing us into categories and grades. Functioning labels is a silencing tool created by people who would prefer that we didn’t exist.

All these steps are easy to put in place. They are all about how Autism Speaks talks about us. Much more needs to be done – so much more – before I can even consider giving them the benefit of the doubt concerning their good intentions towards the Autistic community.

I haven’t seen these steps. Until I see them, this post is my latest protest.

Amy Sequenzia

About the Author, Amy Sequenzia


9 thoughts on “Still Waiting”

  1. My son has Aspergers and so I have read a lot about it. I have never heard anything from Autism speaks that speaks of of autistic people as being tragedies or lepers. Since you’re on the spectrum isn’t it possible that you’ve misread some of the things people say? Misreading people is a part of the disorder.

    You’re saying your neurology is not a disease but I think you’re in denial. Autism is a neurological disorder that causes social difficulties and physical ones as well. It’s not just difference in personality. I love my son and accept him Aspergers and all, but if I could take the Autism away I would because I see the difficulties it has caused for him in life and I don’t want him to have to go through it. If autism is just basically a difference in personality, which is what you’re almost suggesting , then why is there a need for an advocacy at all? There is need for advocacy for people on the spectrum because it is a disorder, and they need help dealing with things like social skills and motor skills. to help them navigate through life.

    1. Faith, I think the misreading goes both ways. There is a need for advocacy because of that very fact. We think differently and the world is set up more for neurotypicals so therefore it will be difficult for us.

      You can liken it to someone from another country who comes to the US and doesn’t speak the language. Such a person from another country will need an interpreter, and oftentimes meets considerable hostility from the community to which he/she immigrates for failure to assimilate. They often need all sorts of advocacy in order to navigate in the new environment.

      Of course there’s a neurological basis for autism, but that doesn’t negate the fact that we want to live as normal a life as possible. Sometimes those looking at us from the outside in over-clinicalize us and that can lead to more misunderstanding.

    2. It’s not a disease. I think you being a “normal brained” person has a lot to learn about autism. You can do that by listening more, to your child and to others who live with autism. Your son is a gift. Get into his world and enjoy the ride. 🙂

    3. No offense, ma’am, but your comments are dismissive and patronizing. She knows what she’s talking about. By saying you want to “take away” your son’s autism, you’re saying you want a completely different child. Autism is not something you can detach or leave at home. It affects every part of a person. It’s a complex neurology the same as any other and we need advocacy because people like Autism Speaks and unfortunately you would rather we not exist. Now maybe I’m just being brash, but I believe that’s called “eugenics”, Autistic people deserve the same respect as anybody else and by not listening to their voices, you’re showing just how little you respect them.

    4. Faith

      I missed this comment, I am not sure why. Maybe I just forgot to respond.

      You said you never saw Autism Speaks saying we are tragedies or lepers. I am sure you can go back and read all the things their founders wrote about us but I will help you a little: google “Call to Action” and Suzanne Wright’s speech at the Vatican.

      Let me correct you in a few things: You say that I might be “misreading” what Autism Speaks said because misreading people is part of the “disorder”.

      First: Autism is not a disorder, it is my neurology, my brain. My brain is not disordered just because you don’t understand how it works. You are right, though, even if you are generalizing, that Autistic people have difficulties reading people, facial expression, body language. But I was reading words. The word “tragedy” means tragedy. The word “lepers” means lepers. I wasn’t misreading the words.

      Second (repeating myself a little): Autism is not a disease. it is a disability and a disability is not a disease. Yes, there are difficulties and such difficulties become harder because most people think that if we don’t conform with the expectations of normalization, we must be changed, and the assumption is that we suffer. Sometimes I do suffer but not because of how my brain sees and processes things. I suffer because some people see me as lesser, as defective. They see me as someone who needs to change to be accepted. I only know how to be Autistic so I cannot “miss” not being Autistic. The ones who say they wish they were not Autistic are probably surrounded by ableist attitudes that devalue everything they do

      The assumption that Autistics would rather be non-autistic is ableist because it is based on another assumption: that “normal” people are absolutely, inherently better (which is different from being “normal” and living in a normalizing society)

      Third: the fact that Autism is not a disorder does not mean that it is not a disability. Disability needs advocacy because ableism is all around. We need advocacy because we need to be able to access supports to help us deal with the things that autism , as a disability, brings. Why should someone be forced to do things the “normal” way when accommodations can be made, certain exercises can be provided, and then the Autistic person can participate? And if none of this works, there is not reason to be ashamed of needing help.

      I don’t know your son but I know some Autistics whose parents say they would “take the autism away” to “help” their children, without considering listening to their children (who get overwhelmed with such dismissive statement – my child is not complete, let me fix them). I believe they should try, instead, to take ableism away from the communities so that Autistic people are valued.

  2. Amy, I enjoyed reading your message. I agree with you for the most part with regard to autism speaks tends to represent the desperate need to make it all go away with a diet, or place the blame on medical quackery. Many people still exploit parents because if we can get ride of the itch we won’t scratch. I never saw anyone with a condition that is behavioral in nature and jump up and say, gee, I am happy to take that nasty looking pill or answer 1000 questions. I do believe that autism and many other brain disorders involve the brain. It is biological and genetic.
    I am a person with a disability, polyarthritis and if people do not see if, then it is hard for them to accept. I have gotten run over with my cane or scooter. I am a retired school psychologist and parent of an Aspie son and maybe my daughter has some form of it.
    No matter what you call it, this is not going to go away for most sufferers. Women are now single parents and also have disabilities which need to be addressed and I do not see anybody running back to their closets.
    I have had a hell of a time getting acceptance. I also know that if you do not fit the typical maternal role, it is still not easy going. My family prefers nice pics of happy children doing appropriate things. I am a mouthy, educated broad, who loves Bernie Sanders and hamburgers. I do not believe that if you eat plant based protein you will live happily ever after. I am more worried about healthcare, hunger, and earning a living wage. I am not exactly wealthy my ex gets overwhelmed with a grocery list.
    So, we are all rolling or hopping down the bunny trail and need to work together to trail blaze.
    Thanks for this organization!

  3. It’s about time someone speaks up. I am an Aspie but I’m not too crazy about the label. I have Asperger’s Syndrome and PDD-NOS which is short for Pervasive Development Disorder-Not Otherwise Specified. Autism Speaks, at this point, should be ashamed of themselves.

    I agree with you, Amy. God bless.

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