Saturday, June 14, 2014

Position Statement on Autism Speaks

For several months now, I have been struggling with how to write this.

I had hoped that I would never feel the need to do so, but over the past few weeks in particular, I have received random messages on Facebook and tweets from people telling me not to support Autism Speaks. These faceless message-senders are strangers, folks to whom I have never before spoken, but who feel the need to step into my space and tell me what to do. That is something of a problem, if for no other reason than because my relationship with and feelings toward Autism Speaks are far from black-and-white.

First of all, let me be clear from now on one thing: This is not a “defending Autism Speaks” post. I have seen numerous posts circulating on sites such as Tumblr talking about how Autism Speaks is "evil" and no one should support them. The truth is, the grievances that some people have against Autism Speaks are absolutely justified, and I am in no way here to diminish their experience or tell them they aren’t allowed to feel what they feel. In fact, I am on the autism spectrum myself (diagnosed at age 10), and have been appalled by many things that Autism Speaks has done over the years.

So that is why, when I was invited to join the Communications Committee of Autism Speaks three years ago, I said ‘yes.’

Huh? Wait a minute…what? you may be asking yourself right now. The reason that I accepted this position is because in the course of being aghast at many of Autism Speaks’ past actions, I also realized that they have an incredible platform, a place of visibility in the neurotypical world that is unmatched by any other autism organization. The enormity of Autism Speaks also means that—as much as many of us wish otherwise—they are not going away anytime soon.

I joined the Communications Committee (which deals with the public campaigns and partnerships of Autism Speaks) because I saw it as an opportunity to make changes to Autism Speaks from within.

Has progress been made over the last three years? Absolutely. Has enough progress been made? Sadly not. But it is a slow process—so slow, sometimes, that it’s unbelievably frustrating. One important thing to note, however, is that the people with whom I am in contact are in no way supportive of the “cure” rhetoric that was the previous trademark of Autism Speaks. That was a mindset that came with the organization’s founders, but to which very few of the people there still subscribe.

It’s not enough that I know that, but the public overall does not. That change has not trickled down, has not shown in much of the media put forth by Autism Speaks. And that is one of the things I am trying to make happen by being on this committee.

When I sit there in the committee meetings, it becomes my job to operate as the eyes and ears of the entire autism community. It becomes my job to be the voice for individuals on the spectrum, a task that is in no way easy because I know that not everyone is coming from the same place that I am, nor has everyone's experience with autism has been the same as mine. But I am in there to speak for you, to make your concerns—which are also my concerns—heard.

The simple truth, and the one thing that I always try to keep in mind, is this: They’re not going to hear it if I’m not there to say it.

My reputation with Autism Speaks has become one of being the person who will not sugarcoat things, who will not hold back, and who will be tough on the organization because I know that it can and should do better. I have met and spoken to Autism Speaks’ executive director, Liz Feld, herself, and told her as much. I have also purposely gone to Autism Speaks events where there are big donors in attendance to make sure that no one loses sight of who they and Autism Speaks are supposed to be helping: People on the autism spectrum.

As I have stated previously, it is my belief that working from within is the best way to effect change. I hope that by using the capacity I am afforded as a member of the Communications Committee, I can create an honest and open dialogue about the concerns, grievances, and needs of the autism community with Autism Speaks, and by doing that, change can and will happen.

Thank you.


  1. i do hope you can get them to listen. I've been told by several Speaks supporters things like "you're saying i'll send humanity back to the stone age if i cure my autistic child? well, at least i'll do it making my kid happy!" (like she wants to hunt for food again), "my kids will NOT become the next Grandin or Robison. That's cult like", "caring about high functioning autism is pointless and a waste of money", "doctors without a diagnosis know more about autism than autistic people because that's the way education goes", ect.

  2. aspies like me often get accused of being against a cure just cause we're aspies.

  3. It's a very difficult situation you are in. I agree with you that most of the people at AS seem to be progressive thinkers. I think people like us are respected and welcomed by most of the rank and file workers. But I think the founders are so detached that they don't even know who we are, nor do they care. Missives like the one published by Mrs Wright last fall tell me that the founders have not changed their views as regards autism being a disease in need of cure, and the fact that the piece appeared without you or me being consulted tells me our autistic opinions do not matter one bit to them.

    What I realized is that educating the staff is largely meaningless if the leadership's mind is closed to people like us. If the person who has the final say believes we are a scourge, that thinking will continue to be reflected in their actions, and their funding decisions and public missives demonstrate that. That is the reason I resigned.

    I believe change has been accomplished but not at the top. I believe we've opened the eyes of many volunteers, workers, and donors. That's a good thing. I don't think we've influenced the Wrights one bit. That makes me sad, and ultimately it made me see that my efforts to effect change at the top were unlikely to bear fruit. I balanced the possible benefits from the organization changing against the substantial reputational cost of my continued association with them, and realized it wasn't worth it to me. All I got was criticism, and I wasn't making the difference I hoped for.

    1. Thank you for this, John. I completely agree with you about the founders (Bob and Suzanne) being detached. I've met them both on more than one occasion, and I do think Suzanne remembers me but our exchanges never seem to go beyond that of pleasantries. It does sadden me that so much of the progress I have seen made has stalled out at that particular level, and thus is why none of it has trickled out to the public campaigns.

      I am slowly coming to that point myself, of trying to figure out whether the possible benefits of continuing to be on the committee outweigh the potential damage to my reputation from associating with them. Truth be told, nobody really knows that I am on the committee, largely because I'm afraid to be open about it because of the posts I've seen online from others on the autism spectrum.

      I believe that change is possible still, as I have seen it in the volunteers and staff members, as you said. Perhaps I am unduly optimistic, but there's a part of me that still wants to keep trying and that it won't be fruitless. I suppose only time will tell whether or not I am wrong...

  4. They didnt listen to John & he had money & success & all those things the wrights hold so dear behind him. They havent listened to the literally hundreds of people criticising them, in all sorts of words & all sorts of ways.

    WHy on earth would they listen to you? I'm sure you're a lovely human being and all, but you can't save an organization run by people who are absolutely refusing to listen. They have to save themselves.

    1. As John stated above, it's not the staff members and volunteers who aren't listening. The problem lies with the Wrights themselves, who act as the figureheads of the organization and who are the ones with which the possibility for real change lies. I've met Bob and Suzanne on several occasions, and have seen firsthand how much they operate in an entirely different sphere than the rest of the organization (including executive director Liz Feld, whom I've also met and spoken to multiple times).

      I agree that the organization has to save itself, but my being there is my way of trying to hold them accountable and show them *why* it is so important for them to listen to us. And as I said in my post, if I am not there in those meetings to say these things and hammer it home, they're not going to hear it. So that is why I am still trying and fighting to make a difference.

  5. The hardest things we as adults have to do is decide to whether to sell out a part of ourselves to get benefits. Those who claim they have not are probably lying. Most people who go to jobs do this every day. Whether we call it passing, acting or faking as Autistics we are forced to do it more. The poor mental health of many on the spectrum is partially caused by this I believe. Autistics are forced do this more then most. But there comes a point where no matter how great the benefits are the price is to high.

    This blog entry was written in June and you were in conflict over these issues. Has there been any change at the top at all in the last 6 months?. If there has not been change no matter how understanding the rest of the staff is, it does not matter. As that is how it should be, as they have put time an money into it.

    It is well known that we Autistics stay in bad relationships too long. Relationships are not only sexual/romantic they encompass many things. If you are changing things at the top you have my wholehearted gratitude. If they are not changing, you are staying in a bad relationship too long. It is not only you that is effected. Unlike most critics I have spoken with you. I did so Wednesday at the GRASP meeting. I do get a lot out of these meetings BUT I do feel guilt over associating with an organization that has Autism Speaks on it's main webpage