Autistics Speaking Day: speaking from the shadows

[nightengalesknd]

This is my post for Autistics Speaking Day, being hosted here this year. I don’t know if they will include my post this year or not but I am putting it here anyway. Some historical background on Autistics Speaking Day is here. My post from last year is here.


I was debating whether or not I should say anything for Autistics Speaking Day this year, because most of the time, I’m not speaking out as an openly autistic person. A few people know at work and in the community, but in most cases when I speak about autism at work or at community events, I do it without disclosure. And so I wonder if I’m a legitimately speaking autistic in the spirit of Autistics Speaking Day.

But I’ve decided to speak out. And specifically, I’m going to speak about the three reasons I’m not openly autistic at work and in my community, things I’m afraid would happen if I were. Things I have legitimate reason to fear, based on current available evidence. My fears are that I would be disbelieved, professionally discredited or tokenized.

1) Disbelief

Beliefs about autism and the lack of competence of autistics are so ingrained that people who know me professionally as a reasonably competent person may not believe my diagnosis.
I wish I didn’t think this was a likely outcome, but I really think it is.
People make flippant comments about how “soon everyone will have an autism diagnosis” and I wonder, would they believe mine?
People conjecture about the ability of autistics to understand humor or have genuine friendships and I wonder, if they think I can tell a joke or be a friend, would they believe I’m autistic?
People jump to issues such as guardianship or sheltered workshops as things relevant to autism, and I wonder if they could ever believe that a practicing physician could be on the same spectrum. If they did potentially believe I was on the same spectrum, they would likely say I was basically so far at the other end as to not have anything relevant to say on the subject of “real autism.”


2) Discrediting

Beliefs about autism and the lack of competence of autistics are so ingrained that people who know I’m autistic may then use that as reason to discount me professionally.
I wish I didn’t think this was a likely outcome, but I really think it is.
People make comments about impaired theory of mind, and I wonder if they would then think I can’t have any empathy or understand other people’s perspectives. They may then believe I can’t say anything relevant or useful about the treatment plan for a particular autistic child.
People make comments about the ability of autistics to have genuine friendships and I wonder if they would then not believe I was able to be a friend, or even discredit anything I have previously said about my friendships.


3) Tokenization

Beliefs about autism and the lack of competence of autistics are so ingrained that people who believe I’m autistic may then try to use me as a token autistic rather than meaningfully engaging with multiple autistics as whole people.
I wish I didn’t think this was a likely outcome, but I really think it is.
There’s the danger of being labeled as a “so high functioning” outlier, and I could be asked to speak at conferences as an autistic without the organizers having to recognize that there are multiple autistic people in the community who could also speak or serve as board members.
There’s also the danger of being asked to be a self-narrating zoo exhibit and to be asked to explain autism from the inside, losing the chance of getting autistic community messages of access and civil rights and acceptance out there.

And yes, I realize that some of these worries are in direct opposition to each other, so that if one happens, the other cannot happen. For example, I can’t be discredited if I’m not believed. Although I could be discredited in a different way if I am not believed, because then I would be considered someone who “thinks she’s autistic,” which doesn’t do well for one’s credibility in a professional field. But more, some of these worries are different depending on the situation. I suspect some specific colleagues wouldn’t believe me, I suspect potential employers would summarily discredit any openly autistic job-seeker, and I know several in the local parent organization who would pounce on me as a potential token in a heartbeat.

And so I continue to hide in plain sight, an autistic working in a field of self-described autism experts and engaging in autism community events that are largely parent/professional driven. I have mixed feelings. I think about being openly autistic. Then I hear some of the things people say, and I realize I can’t. Then I worry I’m being part of the problem so long as I don’t disclose. Then I worry about my credibility if my patient’s parents learn their child’s doctor is autistic, and my ability to get future employment in the field. The worry and anxiety autistic cognitive loop can get impressive.

I’ve settled on a compromise of sorts, a cognitive truce with my own brain and reality and my perceptions of my reality. I am openly disabled, and I speak about autism issues from the perspective of pan-disability advocacy. I am openly involved with the autistic community, and try to amplify and center autistic voices and perspectives when I speak up. I quote autistic people or advocacy groups whenever possible. I let people think I’m a disabled ally. I exploit passing privilege a little. I push for meaningful inclusion of autistic adults at community conversations about autism. I push against the commonly held beliefs about autism and the lack of competence of autistics whenever I can safely do so at work and the community.

Right now, I think I can do more for autistics at work and in the community if I don’t bring myself into it and have to wade through layers of disbelief, discreditation and tokenization. I can spread the message more without it being made all about the messenger.

I work to make my community and field a place where, someday, I feel I can be openly autistic.

I am speaking as much as I safely can, I am trying to open up opportunites for others to speak, and I am trying to make my environment a safer place for me to speak myself.

I don’t know if this will count towards the official Autistics Speaking Day or not, but I’m speaking here, now. And hoping for a future where I don’t have to be afraid to speak, anywhere, or a future where I don’t have to speak, at all.

Comments

[kittenmommy.livejournal.com]

Bravo!

And wow... this post makes me so sad. I shouldn't be surprised that being autistic would automatically discredit you in the eyes of so many (including organizations who advocate speak for autistic people). Logically, you should be better able to speak about autism than any non-autistic person. But realistically, I know that's not the case.

[nightengalesknd.livejournal.com]

It makes me sad, too. (Although it makes me happy it did get included on the official Autistics Speaking Day site!)

I keep hoping that my work, even if it's ostensibly from an otherwise disabled ally, and the work of people who CAN be openly autistic will slowly change things.

[mst3kforall.livejournal.com]

I agree with what you say here, including your concerns and your choices. I do feel that you can accomplish more for now doing exactly as you are doing, rather than "coming out" and risking the concerns you mention.

On a personal note, you seem to me like someone who has empathy and has friends;-)

[nightengalesknd.livejournal.com]

Yes, I think I have both empathy and friends!

See you soon!

[catsidhe.livejournal.com]

It counts.

I am publicly open about my autism. It probably helps that I am a unix system administrator, and so conforming to the stereotype.

And it has helped: the Health and Safety person has actually made efforts to reduce the light levels in the office. I have been given leeway in not going to early (for me) morning meetings when I pointed out that the stress of destroying my routine and futilely attempting to make it in on time was throwing me into two-day-long meltdowns. (And my bosses agree that no-one wants me melting down two days out of a fortnight.)

What I have found most hopeful is when I am required to explain that I am autistic (why I'm wearing sunglasses inside, or why the person can let me work, or gossip, but can not have both), they usually make some sort of comment that I don't look autistic. At which point I can point out that we look just like normal people, and one more person has a mental picture of autism which isn't Sheldon Cooper, Rainman, or whatever Autism Speaks is going on about this week.

[nightengalesknd.livejournal.com]

Welcome! Might I friend you?

I would really like to be openly autistic at work. I also really like having a job and prospects to get another job after my current one (a training position) ends. I would really like these two likes to not be in opposition of each other.

I work in developmental pediatrics where about half our patients are autistic so I work with people who THINK they know what autism is and yet believe a whole bunch of stereotypes. So they are harder to correct than people who think Rainman, because they see 20 autistic kids a week and see themselves as evolved beyond the people who think Rainman. Like I'm talking about a teenaged patient who is autistic and who hates school except that he likes to be with his friends there, and someone says "but are they really friends or just people he sits with?"

And I'm like, OK, one more person I know I can't ever tell.

Everyone at work knows I have a high anxiety level and hate change and hate travel and have no sense of direction and poor visual processing, so I've basically disclosed everything I need to get through the day, just not the label. Then it cracks me up that no one seems to have guessed, but, well, that's the power of myths and stereotypes for you.

[catsidhe.livejournal.com]

Friend away.

I can see how your position is more difficult than mine, because most of my peers know they are arguing from a position of ignorance. (Although I have had one person tell me that I couldn't be an Aspie because I don't stare at my shoes, and because I was too like her own husband. Turns out, her husband later got a diagnosis himself...)

I would argue that your peers are precisely those people who need to be better educated, because the results of their misconceptions are so much more immediately damaging. But I'm not the one on that battlefront.

[nightengalesknd.livejournal.com]

Part of the problem is that the people aren't my peers. They are my teachers and employers. I've learned the hard way how risky it is to try to teach your teacher that what they are teaching you is wrong. It's even riskier when they have the power to fire you too.

So I'm doing everything I can to educate them except disclosing, including quoting ASAN, autistic blogs, books written by autistics, describing Autreat, talking about my adult autistic friends and their jobs. . . and using their response to gauge if it is safe to disclose.

So much work to do. I went through a lot of this when I finally got my cerebral palsy diagnosis in medical school and did pretty wide disclosure. I finally did get a lot of the accommodations I needed, but I also fought through an awful lot of ignorance and I'm not sure looking back how many people I was really able to educate.

[glynhogen.livejournal.com]

Just because some of your worries are in opposition does not mean they can't happen together. Humans have a tremendous capacity to hold conflicting thoughts in their skulls at the same time.

You're already operating with several obvious strikes against your credibility, not least your gender (although your specialty may offer partial cover on that front). Failing to open each and every professional interaction with a complete medical history strikes me as a) prudent and b) perfectly in line with what most people do on a day-to-day basis, even before taking the power differential thing fully into account.

[nightengalesknd.livejournal.com]

And it's not as though I think that one specific person will say, "you aren't autistic, but if you are, then I can't believe anything you say, but would you please give a talk on autism from the inside anyway?"

It's more that I think certain people would tend towards one reaction, while certain other people would tend towards another.

My father would remind us that I am also currently both Jewish and a Yankee in the South. Although people here seem OK with Judaism, so long as they don't know about the athiesm. I also don't have a boyfriend/husband and thus may be suspect as lesbian. Gender is probably the least of it. Young male pediatricians are not as rare as young male OB-GYNs, but, well, neither are hen's teeth.

[shehasathree]

I was really excited to see this post because I remember seeing you around the place on lj for years now, and I have just been professionally diagnosed with ASD/Asperger's myself at age 32.

[nightengalesknd.livejournal.com]

Welcome, both to my LJ and to autismland. I write a lot about autism, and about other disabilities, and about health care, because I work in health care, and sometimes I write about completely unrelated other stuff. Or I get busy and don't write anything for weeks and weeks.

I wrote up my own diagnosis, at age 35, and my response to it, here: http://nightengalesknd.livejournal.com/84946.html

[shehasathree]

Thanks very much! I am currently 2 for 2 - in the last 12 months I have accurately self-diagnosed (as in, had the diagnoses confirmed by relevant specialists) myself with both ASD and Ehlers-Danlos Syndrome (hypermobility type). I started reading your post about your own diagnosis, and I identify with it SO MUCH that i am going to have to come back to it when i am calmer to give it the proper read it deserves.

I work as a piano teacher (one on one with students) and I'm sure it's not just a coincidence that I tend to end up bonding/working the best with kids who are different one way or another - kids who have learning disabilities, kids who are gifted, kids who are otherwise quirky-brained. I'm also (supposedly, in between paid work and healthwork) working on a PhD on the lived experience of fatigue in chronic medical conditions, from a disability studies and sociology of sleep perspective.