When Advocacy Means Taking It On the Chin

One of the most painful parts of any kind of advocacy work, for me, is having to call out a person who just doesn't get it (just doesn't get it yet, one would hope). It's even harder when that person is a beloved community member. But ... that doesn't mean they can't stumble, and badly. That happened yesterday when Rob Gorski of Lost and Tired published his autism opinion piece Autism is NOT one size fits all, in which he attempted to call for community but actually ended up reinforcing some fairly harmful stereotypes about people with autism, as well as divisions between autism and Asperger's. Which Emily Willingham called him on, and rightfully so.

Thing is, it's completely fair to say that my son's experience as a non-conversational person with intense autism is not the same as those of Aspergians like Alex Plank or Rudy Simone. We should absolutely be true to our own experiences, and to that end I implore you to read Kyra Anderson's brilliant meditation on autism parenting and autism diversity and inclusivity and open dialogue, Bring Everyone Out.

But it is rarely helpful to make those differences dividing lines or points of contention, because focusing on them obscures a critical commonality: every last person with autism or Asperger's -- no matter their node on the spectrum, no matter how "high functioning" you perceive them as being or whether you think they can "pass" -- has that diagnosis because of intense challenges in at least one area, usually more. I recommend reading Steve Silberman's recently published interview with Ari Ne'eman, specifically the passage:
"Not too long ago, a colleague commented that I should be proud for being so nearly “indistinguishable from my peers.” Only in the autism community would anyone consider that a compliment. Despite the good intentions behind the remark, I felt a profound sense of hate and disgust motivating it — not of me as an individual, but of the person I was growing up, and of the person I still am, hidden underneath layers of mannerisms and coping strategies and other social sleights of hand. Those kinds of statements define our worth as human beings by how well we do looking like people whom we’re not. No one should have to spend their life hiding who they are."
Autism and Asperger's are the same universe. Anyone who thinks differently has not spent enough time participating in the wider autism community.

The real issue is that Rob is seen by many as a role model for autism parenting -- and if his opinion has influence, and that opinion is actually damaging to autism communities rather than constructive, then we can't stand by and excuse him because of the separate issue of his personal life being so stressful. That's the hard truth of real advocacy, and it sucks.

I think we all empathize with Rob, and we want to support him and his family the best we can -- to that end, we have featured his writing on Thinking Person's Guide to Autism, and I encourage you to visit the Move the Gorskis campaign page.

I don't envy Emily for the blowback she's received for being willing to call Rob out -- his readers are very protective of him, which is understandable. Their emotional investment, and the fact that even deserved criticism can feel like an attack, makes it hard to accept the fact that his opinion piece, though heartfelt, was badly misguided.


  1. Thanks for writing this. When I originally read Rob's post, the thing that struck a chord with me was him saying the criticism he feels for not always seeing the positive side of autism.

    While I have never witnessed criticism (instead I have gotten nothing but support) I can relate to this statement though purely out of envy.

    If you've read my blog at all, you'd know we're facing some pretty tough circumstances with my Aspie son.

    I long to be able to look at the humorous side, the light side and the positive side. But circumstances do not allow for that right now.

    Please don't get me wrong. I love my son and all the quirky things that he is made up of. What I dislike is the behavior -- and the lack of support.

    I don't agree with the characterization that one end of the spectrum is more difficult than the next -- but I was not offended by this statement. I figured it was one person's take on their particular circumstance.

    What I find beautiful is that we can all speak to the different realities, the different people that make up the autism community. Whether I agree or not, I try to take everything with a grain of salt.

    No matter what our differences we have a mighty common bond. And if we learn to capitalize on these and band together, nothing can stop us.

  2. What can we do to support you?

  3. Listen,

    I don't understand why this is still an issue. The entire point was about "raising" children in different places on the spectrum and the different challenges it presents. I wasn't speaking diagnostically. I was talking about the what happens to me and my family.

    I have no problems with Emily having a difference of opinion, however instead of having a conversation about it, she handled it in a manner that was aggressive and counter productive. That was my ONLY problem.

    I very much know that Aspergers and Autism are on the same spectrum. I was writing this in response to the people who have high functioning kids that are doing well and assume everyone else's experiences are the same.

    I have about 2000+ people visit my blog on any given day so it stands to reason that maybe I come into contact with this more frequently than others.

    I was sharing my frustration with the people that assume that simply because their child can do something or that their experience with Autism is a certain way that mine should be as well or anyone else's for that matter

    That was my whole point. That was my only purpose for writing that. The fact that this whole thing went down the way it did shows that there is something to what I was saying.

    Emily was not attached by anyone for her difference of opinion, it was the manner in which she presented it.

    I absolutely do not condone the name calling at all. Emily didn't call me out on anything because she took my post in a way I hadn't intended.

    Perhaps I should have worded things a little better in order to better convey my message but in the end, instead of asking for clarification, it was assumed that I was doing something that was horrible.

    I have people constructively, approach me all the time. Many times there perspective helps me to see things in a different light. However, nothing about what happened last night was constructive.

    I was trying to do something good and it got twisted and pulled apart and turned into something other than what my intention was.

    As for people saying that my readers will follow whatever I say and support me no matter what I say....that's just sad.

    I give my readers alot more credit apparently. They are intelligent, people, very capable of forming their own decisions based on their own experience. Just because they agree with something I have to say doesn't mean they are blindly following me.

    Maybe, just maybe, they are experiencing something similar to what I am. Assuming anything other than that, simply because you haven't experienced what we have, is irresponsible.

    I mean no disrespect to you or anyone else, but this is extremely frustrating. You mentioned that people look up to me. Maybe that's because they find a commonality. In the end this was ONE post. I'm sorry that it was taken wrong and people were offended.
    However, I stand by what I was trying to say. Regardless of what you or anyone else thinks, this is my experience and my truth. Until you walk in my shoes or the shoes of others experiencing the same thing, and their are many, no one should shoot this down simply because they haven't experienced this for themselves.

    We are supposed to all be on the same team. Disagreements need to be handled better.

    Thanks for your comments and opinions. I respect your right to have them, even if I don't agree.

    Have a great night..and I hope we can all rise above this because we have way bigger things to worry about.

  4. You keep telling me I should have contacted you behind the scenes when what you posted was public, and *I* am the one who made you aware that I had posted a response. And you know what? When people have a difference of opinion, it's just fine for them to hash that out. You seemed absolutely fine with doing just that with my own post on your blog, in fact, and then closing comments.

    What you wrote--and you still don't seem to understand this--was mind blind. I've got no issue with your personal experiences or your relating them. And I posted nothing critical of those. I was and remain critical of your assumptions, your description of a division based on "high" and "low" function, your critiquing parents who are positive, and your assertion that autism has no positives. I've explained, as have others, why these things are issues, and you have yet to address them.

    Really reaching for concordance is not a matter of listening to a choir of people who are experiencing what you do. It's a matter of finding the wherewithal to listen beyond that. You seem to think that in your post, all you did was relate your own experience. But that's not all you did. You generalized extensively and judgmentally about others and made statements that a group of people who are part of the community you describe find offensive. Does that not matter to you?

    I also stand not only by what I was trying to say but by what I said and how I said it. Everyone's hand waving about the fact that I took the words of your post and critiqued them. So? You wrote them and placed them in the public sphere. You knew--and indicated as much in your post--that it was controversial. Yet you somehow expected that I would contact you privately and leave your words there, unchallenged, for the public sphere.

    You brought up a controversy and wrote about it controversially. I am *not alone* in my interpretation of what you wrote. I just happen to be the one who responded.

  5. Emily,

    I wish you the best. As far as I'm concerned this issue is closed. I had said my piece and we will have to agree to disagree. I wish you the best in your journey.

    Have a great night.

  6. Also for the record, I never closed the comments on that post. I have no idea what you are referring to. It would say that commenting was closed by the administrator.

    I'll look into that. I have no desire to restrict comments.

  7. Rob, the people who come to your site, no matter the numbers, are a self-selecting audience. They're there to listen to you, not to broaden your mind or autism knowledge -- you'll have to do that on your own. I recommend looking through the Autistics Speaking Day posts as a start.

    As Emily said, you openly courted controversy, and made generalizations about autism and the autism communities. Why is it so surprising to you that people are evaluating your post critically, and finding fault with it?

    We are not criticizing you, but what you wrote. Comprehending that distinction is something you'll need to learn to do if you're going to write about autism in general rather than just your own family's experience.

    I know your life is stressful and doesn't give you much time for contemplation, but you really need to think about some of the things that have been said in response to your post. Especially if you really do want the best possible world for your children, and the adults they will become.

    I also wish you the very best with your family's move. I hope many many many people contribute to the campaign set up in your honor.

  8. Rob, I apologize about the comment thing. It was something someone else had posted. I share with Shannon the hope that people contribute to your campaign so that your family can live in a safe place.

  9. I just sent this to Rob by email and feel I should post it here, too--already posted it on my own blog:

    I know you see what I wrote as an attack, and I'm sorry that you felt attacked. I saw it as taking on your words and ideas, not you personally. I know that taking those two things as separate can be almost impossible, especially if you've poured a lot into your words. I want you to know that it wasn't *you* that was the point--it was ideas that I have been working and will continue to work to change. I wasn't thinking at the time about you personally or your horribly stressful life, and had I been, I *probably* wouldn't have been as blunt. I apologize for the personal pain I clearly caused you and your wife.

  10. No hard feelings hear. I didn't mean to come across in my post the way it did to some. The last thing in the world I was to do is create more resentment and division.

    Anyway, as I said, no hard feelings on my end. I'm sure our paths will cross in the future. I will be more care in my writing in the future in order to avoid misunderstanding.

    Thanks Emily :-)

  11. This is an interesting post. I agree that there is certainly dissension among the autism community. Sometimes it feels a little Twilight; Team ABA vs. Team Biomed...or whatever. I read Rob's original post, and did take issue with some of the things that he said. His opinion and experiences are his and mine are mine. I respect that completely. We do- blogger, parent, advocate- all have the responsibility to give an accurate view of our world, however, we also have the responsibility to be respectful of others' struggles. We can't know if a specific Aspie kiddo is truly easier than a specific kiddo who is non-verbal unless we are truly walking in their shoes. It's all in the other person's perception of how their own, personal experience hits them.


Respectful disagreement encouraged.