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

Thursday, August 28, 2014

X Years of Experience

As an Autistic adult, when I see a professional listing some large number of years experience working with autistic children (or working with children with autism, that bit of language worry isn't the one I'm talking about right now,) I get kinda nervous. I don't really want to use that professional.

I've done some thinking about why, and there's a few bits.

Bit the first: children.

Why children? Is this a hint that the person thinks of all autistic people as children, regardless of age? If it's that, run far and run fast. That's extremely unsafe, both because the way children are treated is messed up and because the idea that we're children forever is just factually inaccurate. Even if I were working with the same set of cognitive tools now as I was at 5 (I'm not,) the extra 16 years working with them makes a big difference.

And if it's not that, if it really is that they only worked with autistic children, why did they only work with autistic children? There are answers to this that are OK, psychologists specializing in children's issues having autistic children be a specific subset of children they work with a lot is a thing. But. There are also a lot of answers to this that are worrisome.

Like, "Autistic people who worked with this person as a kid ran as soon as they could." That's not a good sign. Or if the person actually really worked with parents, that's a worry- that's an issue Neurodivergent K ran into when she was trying to get services. Places said they only worked with parents.

And whatever the reason, if they only ever worked with autistic kids... they probably don't know enough about autistic adults to be much more help to me than someone who knows they're clueless about autism. They probably don't love hearing it, but it's true. Autistic children and autistic adults are not the same! We have different issues, have different goals, have different priorities.

Bit the next: working with autistic, as it tends to mean.

Unfortunately, we live in a world where "working with autistic people" tends to mean "teaching autistic people to look less autistic" or "teaching autistic people to be obedient." That actually applies for a lot of disabilities, it's just that autism is the one where I have the most opportunity to know it.

This is pretty directly opposed to what I actually need. Hiding my autistic traits takes energy I don't really have to spend, and spending lots of time and energy explaining why is only worth while if I'm actually going to get help of the sort I do need out of it.

Bit the last: experience.

Remember that the experience is in the things I just talked about. That means it's going to be experience in deciding what an autistic person needs for them, deciding how to accomplish that goal, and enforcing it, probably with a good bit of talking over the autistic person.

Do I really want someone with large X number of years experience talking over autistic people with the idea of making us act less autistic to be the one "helping" me deal with the mismatches between me and the neurotypical-dominated world?


  1. I only work with children (autistic and otherwise) because I'm a pediatrician. I'm also autistic although not openly professionally so, because I'm trying to stay employed as a pediatrician and ableism is a thing.

    I admit I have used "worked with" for lack of another phrase. I'm not sure what to say instead. I have taken care of a lot of autistic kids and teens, because pediatrician. I also have adult autistic friends. I also read, not all the autism blogs, probably, but a lot of them. I actively advocate against normalization and give families handouts from ASAN. But I'm stuck on a phrase I can use instead of "worked with" to describe my professional experience. Everything else seems worse - "cared for," for instance. Any word-finding suggestions?

    1. How about "worked towards autistic children's wants and needs"? it's a little verbose, but emphasizes individual agency.

    2. There is nothing wrong with "worked with"... Don't be afraid to use language because someone else may have misused it! Alyssa says that "working with" tends to refer to a way of working with that's actually very oppressive, and she uses the phrase (and the other ones mentioned in the post) as a cue of that. That is her assumption and it may be a fairly reliable cue, or it may work in some cases and not others (I think the latter is most likely, but that is my assumption... I haven't researched it and wouldn't know how to get that info).

      In any case, it doesn't necessarily help to get afraid to use the phrase because if professionals stop using certain essentially neutral, straight forward phrases to refer to what they do and still really "do the wrong things", then the "bad meaning" just moves to the new phrases they use instead. It is better to keep the phrase and use some other cues to signal that you respect the needs of your clients in their own right.

      I think it is a good point though, that if a professional has worked with autistic children only for many years, it could be a cue that his/her clients run as soon as they get old enough to decide for themselves! ... if the professional is not a pediatrician (as a pediatrician you're part of the category mentioned in the post as "answers that are OK" anyway).

    3. Yeah, this.
      The phrase isn't the problem.

      It's the mindsets that it's often (not always, but often enough that if someone says they have X years of experience working with autistic kids I can guarantee you that I am not choosing them as a therapist) go with them.

      I'm more working through the mindsets that tend to be attached to the language and society as a whole than thinking the language needs changed. More complicated euphemisms don't fix mindsets.

    4. I appreciate the discussion. I have certainly encountered the mindset described and I find it off-putting as well. Maybe it's a little of I[emphasis on I] work with THEM, rather than I work WITH them. The latter is what I like to think of myself as doing.

      Thinking hard about how to choose words to not bring that mindset to mind, if you will.


I reserve the right to delete comments for personal attacks, derailing, dangerous comparisons, bigotry, and generally not wanting my blog to be a platform for certain things.