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

Comments

[kittenmommy]

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]

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]

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]

Yes, I think I have both empathy and friends!

See you soon!

[catsidhe]

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]

Welcome! Might I friend you

[catsidhe]

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]

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]

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]

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]

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.