To disclose or not to disclose

I’ve been thinking a lot lately about accessing healthcare while autistic, particularly while less-visibly autistic (since that’s me). Some in more general terms, but also in very concrete, this-is-relevant-to-my-life-right-now terms.

See, I’m planning on having a medical procedure done (it doesn’t really matter what it is, and no, I’m not sick), which is involving a number of consultation appointments and appointments for paperwork, appointments for scans – all sorts of things. 

I have not told them that I am autistic, and I don’t know if I should.

As it is, I am masking really hard during appointments and doing my very best to look and act in a way that people would see as “normal” while simultaneously gathering information, asking my questions, and generally just being mentally present for my appointments. This is an enormous amount of work and consistently leaves me completely exhausted by the end.

Of course, that on it’s own wouldn’t be enough for me to consider it a particular problem, but the fact that my mask is hitting limits and sometimes I’m having noticeable processing lag or not responding the way I realize later I’m supposed to IS enough for it to be a problem.

Communication with doctors has been an incredibly confusing blend of direct information and them (I assume) trying to be polite – except a large part of “politeness” is actually just being indirect. Then I take longer to respond, or I ask a clarifying question and the doctor gives me a funny look because from their perspective, they literally just told me what I’m asking about. The processing lag gets worse, I start to get flustered, it’s overall awkward. 

So yeah, I think about letting them know I’m autistic so that maybe they’ll understand why communication goes a little funny sometimes.

Buuuuut… I worry. 

I don’t actually know how they’ll respond. I’m sure that from their perspective, they will be supportive and understanding. But sometimes all that adds up to is immediately, drastically lowering their estimation of my intelligence or my ability to make choices about my own body. I don’t know what kind of latent assumptions they have about autistic people that will negatively impact our interactions if I make it known that I am autistic. 

I mean, I once casually mentioned that I’m autistic to a person on a train, and he immediately asked me where my Carer is. I don’t have a carer. I was taking the train by myself. There are assumptions everywhere. Since they are assumptions, the people who carry them are generally extremely comfortable forcefully shoving their assumptions onto me. It’s one thing to explain how my autism works to a random stranger I’m never going to see again. It’s another thing entirely to explain it to a doctor who is going to be Doing Things to my body.

Most of my posts to my blog are because I have Something to Say about a particular topic, but this time it’s because I’m genuinely lost. Is it better to share or not? I really have no idea. I wish I did.

5 Comments

Filed under issue, personal

5 responses to “To disclose or not to disclose

  1. Tricia

    Been a while since I’ve had a chance to catch up on your blog posts, but it’s a good one to catch.

    I have no idea either. There are pros and cons for each side. I take my bff to all of my appointments and blame it on my anxiety. Which is a true thing, but it also helps with my poor memory issues and my grab bag of problems such as processing and the like. Never mind the hearing issues.

    I guess it comes down to is there a doctor you can trust with such info who you believe will be on your side no matter what? I know I have one, but that only happened after a trip to the ER with bronchitis and a long discussion about giving me codeine (I couldn’t stop coughing and she didn’t want to give me codeine. ER finally gave me some.)

    So, yeah, I don’t have much advise or ideas either…

  2. Emma Sisco

    I am working through my own struggles of whether to disclose or not at a new job that I am starting soon. It’s a good sign that they have a form to request accomodations. But I still don’t know if it will change their perspective on my work, either work quality or work ethic. I also don’t know what type of accomodations I may need.

    Also, the biggest struggle in an office is people being sarcastic, which I don’t understand most of the time. There is no guarantee that if I tell people I’m autistic they will stop being sarcastic.

  3. Jolie

    My advice is to tell them. I feel they need to know. I’ve always been a great chameleon but it’s very draining. And you limit yourself while masking. I let my doctors know because I ask a million questions. I need to fully understand everything. Plus, people are more knowledgeable about autism these days. I have learned if they know I have Asperger’s then they don’t get defensive when I question them. They have more patience and that’s important when I’m trying to process health related issues.

  4. Mark Kent

    it would help you a great great deal too take part in Research .i have Aspergers and M.E . . how does Noise ANY effect you a lot or great great deal ..my blog.http;//mark-kent.webs.com twitter.supersnopper MARK

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