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.