Note For Anyone Writing About Me

Guide to Writing About Me

I am an Autistic person,not a person with autism. I am also not Aspergers. The diagnosis isn't even in the DSM anymore, and yes, I agree with the consolidation of all autistic spectrum stuff under one umbrella. I have other issues with the DSM.

I don't like Autism Speaks. I'm Disabled, not differently abled, and I am an Autistic activist. Self-advocate is true, but incomplete.

Citing My Posts

MLA: Zisk, Alyssa Hillary. "Post Title." Yes, That Too. Day Month Year of post. Web. Day Month Year of retrieval.

APA: Zisk, A. H. (Year Month Day of post.) Post Title. [Web log post]. Retrieved from

Saturday, January 12, 2013

Politics of Parent-Run Autism Groups

Even when all the parents running an autism group are good parents of autistic children, are good allies, there is still a very different feel to the group and a very different political structure when it is run by parents than when it is run by Autistic people. Autistic-run groups with parents in them run as Autistic groups, usually (sometimes the parents drag it more towards parent groups,) and parent-run groups with Autistic people in them run as parent groups (the Autistic people tend to get bullied, derailed, and silenced on the few threads they try to run Autistically.)
In an Autistic group, questions are more likely directed as "What worked for you?" as opposed to "What works?" or "What works for your child?" People seem more likely to be talking about stim toys. The focus is more on issues that Autistic adults face, since Autistic-run groups have mostly adults and some teens. Autistic-run groups also tend to have much lower opinions of, well, almost every autism therapy ever invented. Sometimes, the lowered opinion is the awareness that it can be done badly, depending on the goals of the therapy and who is choosing the goals. Sometimes, it is based in knowledge that the whole idea is fundamentally flawed, like for therapies that aim to teach communication or life skills but measure success by compliance.
In a parent-run group, no matter how many people in the group actually are Autistic, questions are usually directed at parents. When Autistic people speak up about their experience, while there are exceptions  there are four main categories of reaction:
  1. We are Universal Translators - they assume that what we think might be going on is now exactly what is going on, even if it really isn't. This falls under "walking zoo exhibit", which is the one where people think our sole purpose is explaining our strangeness to the world, often to help translate their children's strangeness. We do have lives, and we are not the same people as your children. We have similar problems (often more similar than you realize, which leads into the next reaction.)
  2. Not Like My Child. Basically, the fact that all they are seeing is our typing and the effects of having a much longer life in which to grow up and come up with coping mechanisms (and also the fact that some of us did not get put through the therapies that teach learned helplessness, meaning we are much more able to actually communicate what is going on and what is OK and what is not) comes through and hides the ways in which we are very much like their autistic children, or at least that we were. Autistic people grow up, and we're different as adults than we were as kids. The same holds true for all people, but it often needs to be restated with disabled people.
  3. Don't Really Understand Autism because Autism Impairs Judgement. Autism experts do that one on a fairly regular basis. The autism expert from Ibby's Loud Hands Project essay (you should get the anthology if you can, by the way) did that. I thankfully haven't gotten much of this one, but it's a hard one to deal with. It's a catch-22, in many ways, in that people who do this one put every Autistic into either 2 or 3.
  4. As If We Didn't Speak. Basically, they keep talking or chatting as if we never said anything. The reason can be 2 or 3, usually, but it's a method of ignoring what we say, of silencing us, and it is one of the hardest to get through to because they often won't even read what we write, simply skipping over it. 
All of these are forms of silencing, though the Universal Translator has usually struck me as the one where you have the most hope of getting education through and helping the kid. It might not do the parents much good, but I am often willing to settle for helping the kids, which I can sometimes do when seen as a Universal Translator. It still silences many of the things that need to be said, though.
It ignores the diversity among Autistic people, and it ignores the fact that we grow up to be more than just translators for the next generation. It ignores our outside lives. It is a form of silencing, and it is one of the more insidious, partially because of the fact that it it harder to see that it is silencing and partially because it is a half loaf that many of us will take in order to help the autistic kids who we are theoretically the translators for.
Those things don't happen so much when Autistic people are in charge. Parents may not be quite as comfortable, but this really isn't about the comfort of allies. Spaces where Autistic people are in charge are important, and spaces where parents are in charge can't be as safe for us. They can't teach parents as much either, but that's not entirely the point. (It's still important, though, because helping the parents understand better often means they can help their kids better.)

I updated this post a bit on January 24, 2014 (may vary by your time zone) and added it to the Down Wit Dat January T-21 Blog Hop. I'm not familiar with the way politics go in groups for other disabilities, but will entirely fail to be surprised if this applies to other disabilities as well.


  1. I don't have lots of experience with different groups of parents, because I follow only a few blogs consistently.

    I will say, as an autistic raising an autistic, I agree wholeheartedly about the autism treatments. Our family picks and chooses what we use and we use only what works. Maybe compulsive data taking is a part of this, but also being autistic helps.

    I know first hand how I think and I can easily take my son's perspective.

    We also feel the experience of autism varies greatly between individuals. Each person is their own microcosm of sensory and intellectual perception. Once one varies from neurotypical, the possibilities of experience are exponental.

  2. Thanks for sharing your thoughts on this. Communicating can be so challenging. I hear you on the 4 categories of reactions you're talking about - though I will also be honest and say that although I can imagine the impact of each of these, I can't truly know how these reactions feel or impact you and other autistics. I don't share your experience. All I can do is put forth my best effort to understand it. And to listen, and try to really hear - both those messages I WANT to hear as well as the things I NEED to hear. This has me thinking. I may end up writing a post with some of my thuoghts, and referencing your post as one of the triggers for my thinking. If that's OK. :)

    1. Go for it. Realizing that what you want to learn from us and what you need to hear aren't always the same is one of the first steps towards getting out of the whole "Universal Translator" trope.

  3. Alyssa I appreciate this post and can see where it is coming from. I am one of those parents on the group that may have seemed as if I was asking you to translate my child. I am sorry if it came across that way. That was never my intention. my son is my son and his experiences have and will be different then yours or any other autistic person will have. What I really was trying to get from you and the others were tools. New tools and ways of looking at things. That to me is what parenting is all about. They don't give you a book when your child is born. They certainly don't give you a book when your child is diagnosed. I say all the time that I am making things up as I go. And that is okay. What works today may not work tomorrow and what worked for you may not work for my child. BUT I feel that the information I get from adults who have been in situations my boy has been in, well that experience is far more valuable to me then any book anyway! I do the same from other parents. The entire world is a learning experience and I believe in taking it all in and then thinking about it all and figuring out what will work for our family. So I hear what you say. I hear what everyone says... I too just may be taking it all in and figuring out what I want and need to do with that information. Between you and me... I don't feel comfortable in that group either. I tried too but it took up too much time and like you I have a real life to live. So now I go on when I can and feel like it and take from it what I feel will work for us. If nothing else I am so grateful that I was able to meet you and many others I had not known about before!

    1. As an autistic raising (and having raised) autistics I find that I rarely fit in those groups. Just yesterday someone in that kind of group asked to friend me and seemed to run out of ability to deal when I told her that I was not a supporter of special oplympics because that group exists to segregate and patronize.

  4. I really like this post. You have definetely been somewhat of a Translator for me, at times, because YOU KNOW BETTER. It made sense for me, at some point, to come to you with questions about things because professionals don't know everything. A lot of times, they know very little if ANYTHING at all about Autism. That's a scary feeling for a parent at first- because as parents, we feel the need to DO SOMETHING. I listen to autistic adults now more than I do professionals. And I've also learned to tune into my kid more, as time goes on. The changes I've made have made life easier on the both of us- and I see that I have a happier kid for it. A lot of the therapies and things I was told to do at the beginning of his diagnosis were actually stressing him out and essentially doing more harm than good, I believe. I think the key for parents is to throw away all of the "autism propoganda" and let their kid take the lead. (and ask Alyssa when you're really stuck!)

    1. PS- it's jesicca from pddworld, incase you don't know the "moms" handle.....

    2. You're lucky I'm a teacher at heart, and actually want to be asked (appropriate) things. :p
      And that I'll tell people what they need to hear in addition (or sometimes as) the information they ask for.


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