Tuesday, August 16, 2016


Telling medical professionals that I am autistic is always really hard for me. Because I am so used to passing, it is something that not a lot of people would suspect about me and it is also something that some people downright disbelieve.

I started physical therapy for a running injury at the end of June and I was nervous about telling my physical therapist, but it seemed important to do so because the way I feel pain and sensation is directly related to my being autistic. I was super relieved when I told him and he said, "I wouldn't have guessed that," but then respectfully listened to my sensory perceptions. I was really happy.

Then that PT left for a different practice and I was transferred to a different PT and I was nervous all over again, but I told her and not only was she very respectful about it, she asked a lot of questions and seems to have kept it in mind in terms of her treatment.

Then I had an injury that required me to go see an orthopedist (or, as my sister likes to call them, an orthopod) and because I mostly wanted to (a) make sure I didn't have a dire injury and (b) get a cortisone shot, I didn't bother mentioning my autism because (1) it didn't seem important and (2) I didn't really want to dive into that particular minefield this morning, especially considering going to doctors is hard enough for a plethora of reasons.

But then he looked at my paperwork, which includes my place of employment and was all, "The Autistic Self Advocacy Network? I've never heard of them," so I gave him my elevator speech about ASAN, including the information that I am autistic and he said...

"If you are autistic, you are very high functioning. I have a nephew who [does this negative thing and then these other negative things]."

*all the sads*

I don't have a script to reply to that although I really should get one. If I'm autistic? Very high functioning with the implicit dismissal of my struggles and accommodations? A nephew whose frustrated actions are either this man's vision of him or a conversational weapon to disprove me being autistic enough?


Fortunately that conversation was at the very end of the appointment because all of the emotions that hit me as I walked back to my car were crushing.

I was hurt by his flippant dismissal of me—really hurt.

I was upset that his reaction to my autism was to provide a counterpoint of "there are so many who are really affected."

I was saddened that his nephew is having a hard time.

I resented the power differential that forces me to be deferential regarding my own lived experience with him because he is in charge of my medical care.

This isn't the first time this has happened to me. I hear this type of response all. the. time. This isn't even the first time this has happened to me with a medical professional in the two and half years I've worked for ASAN. And I don't go to doctors all that often.

To be clear, I know that there are many autistic people with many more support needs than me. I absolutely understand that I don't understand fully what they are going through. I also know that I have a lot of things in common with them that may not be apparent to people who don't know me well.

I just hate being so dismissed from my very real experience of autism because a doctor who has spent ten minutes with me has a different vision.

I walk through this minefield all the time.

Every time I tell someone I'm autistic I wait to see whether I will get hit with shrapnel. I have been lucky with a lot of people—and with the most important people, but that doesn't make the explosion hurt any less when it does happen. Even small landmines are landmines.


  1. My heart cries for you. You are a very brave and strong woman!

  2. My experience exactly.
    Just once I'd like someone to say, 'oh, I have a friend who's autistic, and he is really cool.'
    But no. It's always a nephew/cousins dog walkers neighbor and they are always, always much worse off than you because you can talk.
    wven when they don't know about your difficulties at all, they always dismiss you. Always.

  3. This is so hard. Having to make that call every time... "should I say anything?"... weighing up the emotional cost, the likely reaction, the benefit to disclosing. Either way it's overloading, if I disclose and it went badly and I didn't have the responses to fix it, or if it went okay but left me feeling vulnerable. I'm really sorry that your experience was so sucky, the medical community in particular needs so much more educating. Thank you for writing about it, I hope that someone reading it will make it better for the next person that tells them they're autistic.

  4. So sorry for your experience. I've never understood how so many MD's can be clueless about Autism and other developmental disabilities.

  5. Ok, that was a crappy orthopod. Because, seriously, that was key information, and dismissing it was way out of line. Dismissing YOU was even worse, and that was what he did- while dissing his nephew at the same time. And yeah, we see it ALL the time here, too. Sometimes you just want to slap people upside the head, because their JOB is to not be ignorant jerks. And "being affected" isn't a contest.
    Sending you big, big hugs.

  6. So, I know this is going to sound about as fun as a root canal... but... I think you should write a letter to that doc's office.

    Let him know that it's dismissive, and probably he didn't mean for it to be, but reiterate that AS A MEMBER OF THE MEDICAL COMMUNITY, even if this isn't his area of expertise, it's incumbent upon him to be a little better informed and careful with his words (if not his attitude). This is an opportunity to educate, so that maybe it doesn't happen to someone else.

    Also: WHAT A DICK. I'm sorry, honey.

  7. I feel you. I have the same issue every time whether to disclose or not. I am surprised when people ARENT'T shitty. One time I was reading a book waiting for a doctor and she asked me what I was reading. I said "women from another planet. It's written by Autistic women." She went, "oh, that's so SAD." I didn't see that doctor again.

  8. I hate to say it but that is why I avoid a diagnosis

  9. I wish I knew how to deal with that with my kiddo. Me to friend or family member: "our child was diagnosed with autism" or "our son is being put in the autism program at school" or some other explanation of what is going on.

    Typical reply, "but he is so smart and empathetic, he can't be autistic" (sometimes followed by "why can't your son move on to the next fun activity?" umm...because he is autistic and we are working on it). Yes, he is a smart, funny, kind kid, he is also autistic.

    Things I would love to hear. "I don't know much about autism, can you tell me more about it" "Wow, I had no idea, do you want to talk about it?"

    What I don't want to hear: "He'll be fine, he is high functioning". Yes, he is fine, and he will be fine, he is who he is and we love him! Yes, he has good communication skills, but over the years I have met lots of kids with autism and they are all different (you know, just like people!). Just because a person don't have obvious verbal communication skills does not mean that are not smart, funny, and kind.

    Gah, sorry to rant, and sorry that you received that treatment.

  10. My first experiences with folks on the spectrum were with friends I first met online leading up to the 90s tech boom, so my initial anecdotal stereotypes were all positive: rigorously ethical, analytically gifted, masters of etiquette, and incredibly highly paid without formal credentials. Also immune to irrational exhurberence so weathered the bust incredibly well, and are now either VCs or continuously working in Silicon Valley. Then many had kids, which gave a better sense of the range of neurodiversity. Some have said that awareness of the spectrum in the Valley has been double-edged; with more aggressive recruitment of programmers & engineers but a new glass ceiling when it comes to upper management. Not my industry, so only second hand.

    Anyway, despite having other varities of neurodifference, there are some family resemblence I see in that interaction. Clinician biases are an issue for everyone already, without the complications of ignorance combined with the (cursed) halo-effect of being high-functioning enough to pass. Getting written instructions after my frequent medical appointments, rather than relying on remembering verbal instructions baffles many providers at first, because "but you're so smart". Honestly, one of the best first impressions a provider (or supervisor/colleague/acquaintance) can make is to simply shrug and provide the accomodation without even having to disclose, because everyone is different, right?

    Being good at "hard" things is fairly irrelevant when the "easy" things most assume anyone with a pulse who simply makes the effort can do remain challenging on each occasion daily, even with routines & adaptive behaviors in place. Too many people have been told for a couple generations that they are "special" when they are in fact "unique" for many people to be able to hear "only 1:900k people" deal with this. At this point, few things make me flinch more than having my intelligence complimented, as what is always implicit is "therefore everything with just balance out" or "accomodations are a devious scheme to gain undue privileges", which is clearly ubiquitous anyway, as a local bus driver used it to refuse kneeling for a passenger in a wheelchair so she could get to work on time.

    Likewise, the "other people have it worse" fallacy the doctor pulled to dismiss you doesn't change your actual experience of accessibility or medical needs as a patient one whit, it was just an unprofessional dick move. While I hope growing awareness eventually leads to acceptance, at least from observing the queer liberation struggle (only other invisible identity movement), the "coming out" phase often seems to bring out and/or spawn bigotry, at least for a time.

  11. Good rant. :) Thank you.

  12. Thank you all for these comments. I really appreciate the support. It is very validating. Love to you all.

  13. Yeah.

    I'm an autistic medical professional who works in the field of autism. And this is why I pretty much can't tell anyone at work. They believe their research based on faulty premises and don't actually listen to actual autistic people.

    I'm trying to fix medical cultural beliefs about autism and disability in general. It's. . slow going.

  14. I am, at present, a student heading towards the end of their high school years. I'm debating between going into creative writing in the English department, because I absolutely adore writing poetry (especially as a means of activism for various causes), and I would loathe to abandon writing it; but, I also am thinking of going into psychology to work with autistic children, because it seems that so few people in disciplines such as psychology and psychiatry actually have the disabilities of their clients. Thing is, I am not sure what specifically to do... I know that I sure as hell wouldn't want to be an ABA therapist who makes kids do drills anywhere from sixteen to forty hours a week, not after reading the horror stories by autistic adults and some parents of autistic children, as well as quite a few academic studies that raise both ethical and educational issues pertaining to ABA.

    So is this society where so many are convinced that autistic people's lives are inevitably going to lead to an endless pit into oblivion...

  15. Hi Jean,
    I'm very sorry (and yet also relieved) this happened (happens) to you, and I can so relate to your hurt.
    It's a blessing we're able to be high functioning, yet it's also the reason for people not understanding all the different kinds of hurt you're going through.
    I was diagnosed last year at 62 and altho people I told to were nice and accepted it, they áll said similar things to me like yóu had to endure. (esp. the "Glad it's only a minor form of autism", which tells me they will never be able to understand what ány kind of autism can do to you)
    I know they don't mean it in a derogatory way, I guess they want to make me feel better .... but what they're doing takes away the validity of my diagnoses, and makes me doubt all over again too.
    Hence I, just last Friday, asked for a second opinion by an independent bureau, in the hope they grant my request.
    Wishing you loads of mental strength, and thánk you for what you're doing for 'us', óne fine day people with autism (and hey, maybe neurotypicals too) will só benefit by all you and the likes of you dó.
    Jos. (Netherlands)

  16. Reading this was unctioning me to write a letter to the general practitioner who without speaking a word to my son said "I'm not saying autism I think maybe it's Tourette's. I'm not a specialist though." I informed her that so I didn't know too much about Tourette's being many specialist that we had worked with over the years all confirmed that he is in fact autistic. When we checked out that day I just asked for a different doctor for his next visit. But reading this makes me want to write it a letter explaining why I made the change.

  17. Hi C,
    I think you'd make a great psychologist, you've thought things wéll through already. I so agree with you: most of the professionals who want to help those with an ASD seem to have learned their 'wisdom' by learning what's written in books. Very commendable, undoubtedly, but it just lacks the truly 'understanding' of the questions newly diagnosed autistics (or their parents) may have, and also they can't fully únderstand WHY the problems I see so many autistics run into can be so debilitating. (and this goes for kids, their parents, but also those who are diagnosed in their adult years. (or elderly years, like me, LOL)
    I wish you luck, with whatever you chose to do in the future.

  18. I can't even GET a diagnosis even if i wanted confirmation. The general excuses -- I'm a middle aged woman, i'm too poor, and the doctor does not handle incurable diseases. And yet mysteriously is willing to treat diabetes.

    Yes, I fired the ass. And yes, I do not have health care now. Because that man is the only one who takes my government insurance.


Thanks for commenting! May you be visited by unicorns and kittens.