Saturday, March 2, 2013

Paula C. Durbin-Westby: Autistic People Are ... Taking Risks All The Time

Autistic people are….

… taking risks all the time. The risk I will focus on in this post is the very real risk to those of us who have chosen to be “out” Autistic, using our real names. There are people who are “out Autistic” who use aliases, and for very good reasons. I completely respect those reasons, do not expect or wish for those people to come forth with their “real” names, whatever those might be, and am learning more about why it might have been easier to make up a name, say Sally Ann Smith,* for all my advocacy work. Some people using aliases have done amazing work for and with and in the Autistic communities and “autism communities,” all without using their “real” identity. I thought that would be confusing for me to accomplish so have always used my real name, which is Paula C. Durbin-Westby.

NOTE: I am NOT talking about any particular PEOPLE in this post. I do not care whether or not someone said something about me, whether or not people know about me, whether what happened was “right or wrong.” I am talking about CONCEPTS here, and basing it on a recent occurrence, which has made me have to think about this topic. Thinking is good. Or, at least, I like to do a lot of it. No one “involved” in any way in the recent occurrence I am thinking about (if you even know what it is, and very few people will) is responsible for anything I have thought, felt, or worried about. No one is responsible, in that situation, for anything having to do with ME. That’s the strongest  reassurance I can give you. OK, my reassurance measures are complete.

ANOTHER NOTE: I apologize for this not being in very accessible language. I am thinking in long stringy sentences today and not able to even think about how to shorten them.

I recently experienced the complete downside of being Out Autistic. It was unpleasant, exhausting, frightening, and other adjectives that are not coming to mind right now. You see, I had one little area of my life in which I was not OUT AUTISTIC, because I really needed to focus on other aspects of that “area of life.” While I did not particularly want to “hide” being Autistic, as I have no reason to be ashamed of being Autistic, other than the usual internalized ableism, which I work hard to counter….it just did not seem to make sense for me to talk about autism in that context. I thought it could make me lose my focus, which really needed to be on other things.

I am now OUT in that place, and feeling very uncomfortable about it. Still. I will get used to it. It’s not a HUGE deal. Not as huge a deal as someone who is NOT OUT being suddenly thrust into the position of having their autism known and maybe losing a job. Part of why it was unpleasant, exhausting, and frightening was the conversations I had around the topic and not the actual event itself.

Let me say a little bit here about risks in general for Autistic people, both adults and children, before I go into the risks of being “out” Autistic. These are farden-variety, everyday risks that people with disabilities or any other differences face routinely. The short version is that Autistic, both children and adults, whether "out" or not, can experience everything from condescending attitudes to outright discrimination, at school, on the job, on the playground, at the grocery store, in church, at the doctor’s office (scary, when one cannot access appropriate health care). The above can happen to Autistics whether we are out or not.

This is what I would like people to know about those of us who are OUT Autistic. I am not speaking for ALL Out Autistics, because I know some for whom this does not matter (Ari Ne’eman comes to mind, although he probably has some limits!):

-We should not be expected to be “on call” as Autistic all the time.

-Because we are Autistic does not mean we are Autistic in the way that is convenient for others. Typically “out Autistics” are thought of as “high-functioning,” and that “high-functioning” is sometimes interpreted as though we will understand and comply with non-autistic agendas. Sometimes being OUT is for our agendas, not for other people’s. Who knew. I have a total problem with functioning labels, but I see them, in this case, as something that makes people (non-autistic) think that we understand and approve of their ideas about autism and about us.

-We are actually human beings with some need for privacy (Autistics often do have more needs for privacy, even we intrepid Out Autistics) just like everyone else. Even though we are in three (in my case) documentaries or have had our picture in magazines or have a rather extensive archive of what we have said and done at the IACC, or videos of us not being able to speak at times we might need to be less out in some places.

-When we made the decision to “come out of the Autistic closet” we perhaps did not understand or think about EVERY SINGLE RAMIFICATION of doing so, or project those possibilities far into our own futures and those of our families. If we subsequently prefer to not be OUT in some places, please respect that, if at all possible (sometimes it is not).

-Being Out Autistic does not protect us from discrimination. Being Out Autistic does not protect us from condescension. It does not protect us from being hurt. It does not give us an “exempt from discrimination passport.” Being articulate (at times) in either speaking or writing does not mean we will be “listened” to. Being Out Autistic does not mean people will cherish us for that Outness. Sometimes we worry about what others might be thinking about us. Non-autistics do this too. I know, because I have seen a boatload of self-help books over the decades, written for other-than-autistic people, about “How to Say No,” “How to Not Worry about What Others Think,” etc. So if we, in an unusual position in society, that of being Out Autistic, have some, even unfounded (!) fears, that is actually quite normal.

-Some things we have done as Out Autistics are things we feel quite proud of. Some of us (me) may have things we wish we had not done, or that we feel neutral about until we realize that particular thing does not go well with this particular situation, but THERE IT IS, FOR ALL TIME (unless the Internet crashes forever, or other archival sources disappear, or we move to another location [and the Internet would still have to crash]).

-Being Out Autistic does not make us emotional heroes. It does not make us emotionally invulnerable to worry, regardless of the stereotypes that we have not feelings/empathy/sympathy/concerns about what others might think or do. We might have more worries, given that we live in fairly unpredictable NT territory most of the time.

-We can’t anticipate, and neither can you, dear reader, when something that we are OUT about might end up being something we wish we were NOT OUT about, but sometimes these situations occur. Please do not expect us to be all perky about those times that being OUT is difficult for us.

NOTE: We can’t blame you for “outing us” accidentally if we have over 10,000 hits when you do a google search on our names! We can ask, if we know in advance, for some support in situations that are fraught in some way for us. (Personally I do not expect any support and rarely ask for it, but it would be nice for people to offer it).

*Sally Anne refers to the Sally Anne test , purported to test “Theory of Mind” in Autistics.

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