Autism and Healthcare

Having  an experience which science suggests is not unusual for the autistic adult. 

Having had a health crisis brought on by an allergic reaction to Humira I followed a string of instructions on how to get better from it only of course being me things kept getting worse. 

Today I had to conclude I needed to make arrangements for the dog so I could go to hospital.  

The doctor did not properly examine me at all before breezily suggesting that I just double my water pill.  He barely listened to how I have kept following one set of instructions after the next only to arrive at a point where I thought some attention to what was going on was badly needed. 

He definitely did not listen to the perhaps related and perhaps not  – of my knee over rotating which was a difficult one as I heard him treating someone with a comparatively minor knee issue with great care. 

Great care is not something most doctors seem to feel this autistic or any really are worth . 

Last month an American fellow autistic friend turned the average age of the American autistic which prompted a flurry of discussion and well wishes that we all exceed the average. 

It’s generally held to be all of 32 for American autistics and 50 for Canadian and the EU.   I am 50 and well the toll it takes to find you will rarely be treated for even the most painful issue is considerable and saps the conviction your life is sacred.  

While there are tools meant to help autistic people more successfully get medical care those only work if you have a doctor who is invested in them working or in your health.  

We are now up to 23 unique encounters where only one of them resulted in any thing close to appropriate care. 

My issues here were both complex and scary and yet if I hadn’t  finally managed to mention the one thing that the new treatment plan kind of rests on he never would have checked or asked about my ability to go pee. 

I’m sitting in an uncomfortable chair again, drinking fluids so I can pee and go off into a world that manages to show too often how little value I have 

I have massive amounts of edema and I am over-rotating my right knee in ways that should be obvious to people and it might occur to them that it would be painful – only it won’t. 

Blogs often aim to be encouraging but there doesn’t appear to be much encouraging to say about the autistic adult and the healthcare system. 

I’d like to think it will change but in the past 10 years for me personally it has gotten way worse and one chilling way it gets worse is that I am sometimes seen as likely to have an intellectual disability and this has been used way too often as a reason not to pursue treatment. 

My rheumatologist who I am not exactly a fan of at this point also thought I had this issue but he does get the sole win in a depressing run of people for opting to treat me. 

This should truly frighten us with what it means.  Being autistic often means people will have very set notions about you without regard to how accurate they are or anything like that.  

This doctor mostly talked to me as if I was a child and in  way too long a day the only people who were remotely nice to me were those who had to treat the part of things he was even willing to consider as being a problem, 

In defense of my rheumatologist to my GP who has to get a depressing number of notes back from specialists and so on  and thus was alert to the very strong possibility this was again an issue. 

I almost cried explaining that I  can’t care about the fact that I am not intellectually disabled versus the whole there were so many doctors who thinking I was opted not to treat.  I have to care that this wasn’t relevant to if I should have care as a good thing. 

We live in a world where people are that easy to discard.  

One where statistically I almost never encounter a doctor who isn’t in some sort of ethical bind as of course not treating doesn’t just do harm by letting some things get worse it sends the message over and over that your life has less value than that of the “normal”. 

We obviously need to do better than that. 

I wish I  knew how. 

I’m in pain and seated for maximum discomfort in an ER which has ignored clear needs in the past. 

My ability to advocate for myself in this sort of stressful situation doesn’t exist.  

The tools that are meant to help have the premise that if autistic needs were communicated better to the health care provider that would  result in better care.

Does anyone know how we work with the fact that over and over we will be see as less than human and treated in ways that make that clear ? 

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