Why I Don’t Seek Formal Diagnosis

It is likely to end up being pointless in the USA.

Once in a while I run into someone who insists that I should get a formal diagnosis. If you live in the USA, this is often a futile, frustrating, and expensive endeavor. It is not worth it if you are unlikely to get accommodations.

I live in the USA. One distinguishing feature of this country is its appalling health care system. I have tons of stories about how world-class institutions have mistreated me time and again. I have tons of stories about how the billing system in the USA is maddening. Most of our costs are not due to the medical acts performed on us, but due to administrative overhead. This is stupid and ridiculous.

What I’m describing above is the general landscape. When it comes to being diagnosed with autism as an adult in the USA, the situation is even more stupid and ridiculous. I am not a rich man by any measure. I don’t have money to throw around with wild abandon. My insurance would not cover the cost of an adult diagnosis. These can easily run into the multiple thousands of dollars. Right off the bat, it looks bad.

Add to this that some practitioners hold onto outdated models of what autism should be. I know I don’t fit those outdated models. I don’t want to piss away money on someone who will tell me that I’m not autistic only due to the fact that I don’t fit those outdated models. Anybody who insists on a formal diagnosis should read Unmasking Autism by Devon Price.

You’ll learn that the prevalent model among autism specialists was very narrow in scope. I actually find that I, a man, have more in common with what is called “female autism” in the book. Note that this label is both outdated and bullshit, and the book does a good job explaining why it is both outdated and bullshit, but that’s the shortest way I know for now to describe myself. I do not fit the old obsolete model of what autism should be.

So I could find a doctor who holds onto such outdated models, and declares that I’m not autistic. What do I do then? Do I seek another diagnosis until I find one doctor who agrees that I am in fact autistic? This won’t look good to anyone who knows that I’m doing this, because this looks exactly like doctor shopping. I may have a good reason to seek another diagnosis, but people won’t know this. If I need more than one diagnosis, how much money will I throw at the problem before I get what I want?

Come to think of it, I’m glad that nobody accused me of doctor shopping when I had my cancer, because that thing was misdiagnosed a bunch of times, and I almost died from it. The first diagnoses I got were a series of eye diseases. Then I had my attack. Then I was diagnosed with a stroke. Then with multiple sclerosis. Then I sought a second opinion at Johns Hopkins. That doctor said that he did not know what I had, but that it was not multiple sclerosis. Multiple tests later and another doctor said I probably had cancer. Then we did the brain biopsy and found that I indeed have cancer.

In the case of cancer, the test was mostly a black and white thing: either I had it or not. Moreover, this test is the same for everyone suspected of having my cancer. It is much more complicated with autism. There’s a saying among autistic people:

When you’ve met one autistic person, you’ve met one autistic person.

The implication here is that autistic people manifest in the world in diverse ways. What goes for one autistic person, won’t go for another autistic person. It is a mistake to see one autistic person and assume that all other autistic people will present the same set of characteristics.

Then there is the fact that even if I come back with a positive diagnosis, it won’t mean much in my day-to-day life. I cannot see what kind of accommodations I’d benefit from. I don’t need to be isolated. I don’t like phone calls, but I still do them. I really don’t see how spending money on a formal diagnosis would benefit me.

I do talk to other autistic people every day, however, and maybe one day I’ll see a benefit. I don’t see one now. So I’m reevaluating my life, through the lens of autism, and finding that the signs were there, but nobody put two and two together.