{image is the iconic depiction of a hand on which is written the mantra of the disability advocacy movement: Nothing about us without us.}

Yesterday, Lydia Brown wrote a searing post about the lack of autistic representation on the Massachusetts Autism Commission. Not only, Lydia tells us, is there only one seat out of 35 held for a member of the constituency that it purports to represent, but the commission has already met – twice – while that seat remained empty.

I’d ask you to read that last sentence again.

What if it were a Commission On Working Mothers? What if 25 of the commissioners were men and 11 were stay-at-home moms whose moms had worked when they were growing up, so they really felt that they had a handle on the issues? And what if those men and stay-at-home moms met as a group not once, but twice, before even appointing a working mom to join them to talk about the life that, out of that group, only she lives every day?

What if they said, “But it’s hard to find a working mom because, well, they’re all working. And moms.”

What if they said, “Well, the only working moms who are able to show up are the ones who have a means of transportation, who can afford to take off of work and manage child care for the two hour meetings. Those women can’t possibly be capable of advocating for the ones who don’t have the same resources.”

What if they said, “If they were here, they would surely only advocate for their own narrow self-interest and those working moms who have greater needs wouldn’t be represented at all. So we’ll just go ahead and get started without them.”

There are so many things wrong with all of this it’s hard to know where to begin.

Lydia says:

No one is saying that every single disabled person under the sun is personally interested in public policy, personally capable at any point in time of participating in formal government processes re: public policy as they are run now, or individually represented by every other disabled person who is participating in public policy. (Every single community, ever, is made up of many disparate people with diverse perspectives and experiences.) But. Disabled people know better than non-disabled people what it is like to be disabled. Disabled people who do activism or advocacy tend to have a keen grasp of issues affecting them and people like them, even if we have an incredibly long way to go in sustained cross-disability work.

Parents have a place on these committees – an important place. So do educators and doctors, clinicians, care workers and legislators. So do decision makers in the realms of employment, transportation, housing and various and sundry other areas of both public policy and the private sector.

But we cannot have a remotely effective commission on autism without meaningful autistic representation.

In the post, Lydia linked to other posts. I followed them all. I read every word. And when I got to the following paragraph, I stopped in my tracks. I read it again. And then again still. I’m going to ask you to read it too. Because, for me, it contains the crux of all of this. It explains why it it so vital to have autistic people at the table LEADING THE DISCUSSION about autism. Because otherwise we, as parents who do love our kids and who do want only what we assume is best for them, may very well be unwittingly fighting for all the wrong things. Things that feel, from the inside out, far, far different than they many look from the outside in.

This is what Lydia wrote:

The disabled adult who survived involuntary treatment aimed at fixing their supposedly broken, inferior brain or body knows better than anyone else what a disabled kid whose own parents who claim to love them keep making new appointments with the same doctors or therapists for the same marathon sessions of pain where no one believes what the kid says about their own feelings, where they tell them over and over again that they’re hurting the kid for their own good, knows exactly what it is to be told that if only they stopped talking like that or moving like that or being interested in that then other people could accept them, or at least a fake version of someone who never existed but who everyone else believes is better than who they are.

I used to stand up in front of crowds of people, pleading with them to help us find a cure for autism – to put it another way, to fix my daughter’s broken brain. I begged them to help us institute policies that would ensure that every disabled kid would have access to even the most draconian of recommended treatments – or to put it another way, those marathon sessions in which they could be taught that if only they stopped talking like that or moving like that or being interested in that then other people could accept them. Because I wanted to help my child. And I was told by the people around me that that was how I could help her.

It wasn’t until I began to read the words of autistic people that I finally understood how harmful my early brand of advocacy really was to my child – to all of our children.

Every human being has a right to support without the prerequisite of fundamentally changing who they are. So to, they have the right to advocate for those who share their neurology, disabled people at large, and all of humanity should they see fit. And that means that the rest of us have an obligation to make room at the table.

It doesn’t mean we have to leave. (Inclusion is not exclusion; it’s only framed that way when outdated power structures are questioned.) It does mean we have to listen. And it means that we have to let autistic people lead the conversation and educate us on how we can best help them reach their goals.

A commission on autism has as its membership 1/35th autistic people. (That’s 2%.) And 34/35 (98%) of them met as a ‘full commission’ before the 1/35th who actually has the neurology of the people for whom they are supposedly there was even asked to join them.

On what planet is that okay?

13 thoughts on “representation

  1. It’s just unfathomable to me the amount of push back autistic advocates get from the parent community. When I first started to realize my daughter was neurodivergent, I could not even wrap my head around it being true because I could not relate to the doom and gloom I was hearing in parent groups. She was delightful, she had a sense of humor, she had empathy, I could not see the nightmare that was supposed to ruin my life and make my husband leave me, and I could not believe she was autistic because that was what I was told autism was. I would ask and ask the “professionals” wasn’t there adults that we like my child when they were little? Could I please see a version of the end, so I could know where to start? I was continually told that they didn’t know of any adults, that there was basically no sign of them existing. All I wanted was to talk to someone who might have insight in to how my daughter felt and perceived things, and I was continually told it basically wasn’t available, as if that could even be possible in a world of 7 billion humans. Nothing has been more helpful to me parenting my child than realizing how often the professionals are completely and utterly full of shit, and that there are real experts with the full range of human emotions and experiences who also happen to be autistic. I’m so grateful to them.

  2. Your image of a group for working moms with no working moms on the panel makes it so easy to see how irrational the Mass Autism Commission is.
    I needed to stop what I had been doing, to apologize and try not to feel horrible forever for what I did with all the best intentions. Put the guilt down, turn around and change. It takes words from Autistic Adults to teach me about autism.

  3. Pingback: An Open Letter to Allies of Autistic People | Ultimate Oddball

  4. Brave of you to admit where you believe you made mistakes about representing your child–a tough acknowledgement that. I have looked back on all the things I did or said, thinking I was moving in a direction to help my son. I may never know whether I harmed more than I helped. It was like parenting blindfold and being spun round and round until dizzy and then asked ‘find the right key to unlock the magic’ out of a barrel of rusty, blade-sharp keys.

  5. This is so true! I constantly/daily learn from my kiddos and adults how to best serve or help them learn. If only we’re ready to listen to them and include them in the decision of their own lives instead of group of people coming up with how their lives should be run, things would be a lot different!
    If we have an open heart and ready to listen, there are a lot to learn from people living with ASD and they should be largely included in their decision making!
    Thanks for sharing this important piece!

  6. We need to contact our state representatives and the leaders of the commission about this. Jess, any advice on key players on this issue?

  7. Not sure where to ask this but I know you read all of these comments. I am looking to by headphones or earmuffs for my daughter. She is not on the spectrum but has a major noise sensitivity. I found some on a website called with a tag line of supplying pieces to solve the puzzle. I was just wondering if you knew anything of this company or had other suggestions. I’m asking because I don’t want to give money to a company that is not supportive such as autismspeaks.

  8. Hi Jess,
    (This relates to your FB post, not this blog post specifically). As I have mentioned previously, and you may remember, I graduated from the high school Katie attends last year (I am a freshman in college now). Picking classes and feeling the stress of keeping up and getting through all the classes is very familiar to me! If you ever have any questions (or if Katie does too!) I would be happy to help 🙂

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