Text: If you really want to be an advocate, start by listening to the people you claim to be advocating for.

Earlier today, I sent the following email to Liz Feld, President of Autism Speaks. It is short and not particularly well-written, but it is what it is. I didn’t feel the need to repeat what I’d said in countless other emails. Clearly, they never had much of an effect anyway.

When I heard from a friend today about Autism Speaks’ new documentary, I was overwhelmed by sadness, anger and frustration and I had to say something. I don’t imagine that Liz will choose to respond given our last exchange following my most recent post about AS, but I had to send it.

I had to say something.

This community works so damned hard to create a world in which autistic people – no, in which ALL people – are viewed as fully human, whole, worthy of compassion, support, and respect. Autistic people fight every single day to find the smallest pockets in this world in which they can be safe. Not even comfortable, happy, productive, respected, loved … just SAFE.

No matter how hard I try to bite my tongue for the sake of continued dialogue with those who are still involved with AS, I simply can’t do it anymore. I can’t stand idly by while those who claim to speak in this community’s name tear our efforts – tear our community – apart.

I just can’t.

My daughter is depending on me not to.


I’m writing what feels like the same email I’ve written so many times before, but, well, here I am again, scratching my head.

I heard this morning from a friend (who has long been an enthusiastic supporter and fundraiser for AS) about a line in the documentary shown at the Lurie Ctr in which a mother says that she couldn’t trust her son to strangers because “most days *I* want to kill him. And I love him. How is someone else going to have the patience?”

(Ed note: Just to be clear, while I linked to Susan Senator’s post for information on the documentary and Susan is indeed someone I consider a friend, she is not the person to whom I refer above.)

An off-hand line meant to be wry humor? Probably. Even a little bit funny given that autistic people are routinely neglected, abused and yes, murdered by their parents and caretakers (and the parents and caretakers are then viewed with sympathy for *their* plight) and the fact that autistics have begged you all again and again (and again) to change the tenor of your rhetoric so as not to encourage / condone violence against them AND on the heels of the PR debacle of Suzanne’s call to action in November? No. How does this keep happening?

I’m lost. I’m just really, really lost.


Read about the widespread, autistic-led effort to boycott Autism Speaks HERE.

Read my post about AS Founder Suzanne Wright’s November Call to Action HERE.

Read Amy Sequenzia’s post about the conversation that followed HERE.

Read Peter Burns’ Open Letter To Suzanne Wright on behalf of the Arc HERE.

15 thoughts on “again

  1. How could someone say that and worse, how could others reward it with recognition and think that it wasn’t a cry for help on the part of the mother? It’s -human- to reach your limits with a situation no matter what it is. It’s -inhuman- to ignore a statement like that, even if it’s supposedly said in humor, a degredation of the needs of the mother and the child.

    The community AS claims to serve should be like any well functioning community and SUPPORT all of its members. Peddaling something with a comment such as that included is not support, it’s explotation at its worse. I want to work with people who see humanity and foster it, after all. That’s the person I want my son to be and this organization’s values are not going to teach him and others that value at all.

  2. It’s time Autism Speaks is no longer the major organization linked to families of children with autism. They’re not getting it, and my kids’ world needs to change. My world needs to change. I can’t be the only parent who feels this way. Perhaps it’s time for your readers to band together and create a new group? One that is formed WITH autistic people, with the goal of unity and true acceptance, to help parents and children alike and to truly change this world. I can’t be the only one feeling this way. And speaking out against AS is the right thing to do, as is boycotting companies that support it. But still… I’m sitting here with a desire to do something more, and I know I am not alone. I don’t want to feel helpless anymore.

  3. My sense is that Autism Speaks created a game plan of using bleak rhetoric regarding autism in order to boost fundraising and motivate lawmakers, and I can understand the thinking/strategy behind that.

    The problem is that over the last few years the autism community has expanded and now has a very different profile and includes numerous voices advocating for a more vibrant and constructive paradigm. The community is growing, moving forward…Autism Speaks has decided not to join the community and move forward with it. They continue to use rhetoric that is clearly outdated and in fact works against the community it ostensibly represents.

    For me, this is why Suzanne Wright’s recent comments…and this documentary…have created so much pain and frustration: Autism Speaks has to realize that the community is very, very different from what it represents…yet it continues with the same scare tactics and fear-mongering. In other words: Autism Speaks is willfully tone deaf, has made a conscious decision to shut out new voices and proceed with business as usual.

    The questions now: what are alternative groups we could support? How can we help those groups both raise money and make connections with lawmakers? Autism Speaks wants to stick to it’s game plan, I don’t see any signs that they are willing to connect with the community, change. So in a way, this is a real opportunity: what a great chance for other groups to step into the spotlight, grow, rally a community that is eager for constructive ways forward.

  4. Shouldn’t you see the movie first before assessing the movie? Wouldn’t that be like someone writing a commentary on one of your blogs without reading it?

      • Assumptions are dangerous, “Patricia”, true…fortunately Jess and everyone else knows beyond any doubt what the message of Autism Speaks is. Same message it’s had forever, has never changed…no assumptions needed, I’m sure that alleviates your concerns. Here’s another concept that is dangerous: ignoring the obvious.

    • Not if they had the text of it, no. Though since this is in writing, I suppose that the equivalent would be for them to have heard it read aloud. In either case, no.

      In the wake of a year in which autistics were killed by their parents (or their parents attempted to kill them) at an alarming rate and the press routinely and nearly universally sympathized with the killers / would be killers, there is no context for me that could possibly mitigate a mother saying that she wants to kill her autistic son in a movie that is meant to illuminate the autism community’s need for help. None. She could be wearing a clown hat and holding a sign that said “I don’t really mean this; it’s just for the sake of hyperbole” and I would be just as sad and angry that autism speaks chose to feature those words in this environment as I am right now. The insensitivity in that is unthinkable to me, no matter how it was said. So no.

  5. So, they have managed to take a very real fear that so many of us live with – that misunderstanding coupled with vulnerability can so easily lead to abuse- and they have trivialized it by making a joke out of it and turned it around to be once again the autistic person’s fault for being abused. Shameful.

  6. I’m sorry you had to write those e-mails. Autism Speaks is not listening and apparently won’t listen. We have to move on.

    Love you,

  7. Jess…thank you for this.
    Someone asked about alternatives to AS. I would say ASAN (Autistic Self Advocacy Network) and AWN ( Autism Woman’s Network) and also try yoir locals. These organizations , ASAN and AWN need building up so they can be the voice and also have more resources to provide much needed services directly to families. Not AS meager 3.5%. Please go to and join us. We are on FB and Twitter (#boycottautismspeaks) we’ve had 2 twitter bombs, the most recent was yesterday. We also celebrated our Autistic loved ones with our very own “This is Autism” in response to Wright’s awful call to action. It was a beautiful thing! If we all join together, we can change this for the better!

  8. It makes me so ill to my stomach, actually physically ill, that someone would say that about their own child. I am with you on this boycott. My son and I do not want Autism Speaks speaking for us at all. They have no right. It’s sad that they keep on pulling this sort of crap. It’s incredibly harmful.

  9. I do not have a child with autism & yet even I can feel the pain of these ignorant words & actions. It is not about the feeling of insult and degradation to children & adults living with autism, but the insult and degradation to children & adults. Period. It makes me sad that an organization designed to support people with special needs would behave in a way that absolutely does not help, but goes so far as to harm, cause discord, and possibly ostracize the very people it was designed to help. Incredibly sad.

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