Thoughts on Self-Diagnosis by #ActuallyAutistic People #SelfDXIsValid

Today, Autistic Zebra wrote an interesting post on self-diagnosis by autistic people. They are a self-diangosed autistic who have no intention of seeking an official diagnosis. They embrace the hashtag #SelfDXIsValid on Twitter, a hashtag used to make it clear that you don’t need a professional diagnosis to be autistic.

I was “self-diagnosed” for years before my official diagnosis in 2007. At the time, I didn’t like the word “self-diagnosis”, because it presumed people who “self-diagnose” are akin to professionals making an official diagnosis. I felt people should state, as is the norm in the Dutch autistic community, that they suspect they are autistic. I myself didn’t even want to post to a main autism forum, even though I’d been reading it for a few weeks, till the day I got my official diagnosis.

Years went by in which I remained officially diagnosed. I had no problem with self-diagnosed people, even though I (not always consciously) often saw them as less obviously autistic than I saw those who had an official diagnosis. The reasoning was that, if they were struggling as badly as those who needed an official diagnosis were, they would’ve been formally diagnosed. I based this reasoning upon the way I had myself been diagnosed: I was falling apart and the staff at the home I lived at at the time, sent me for diagnosis. Now I realize how lucky I was to have had staff who suspected autism in me and not, say, dependent personality disorder.

Now that I’m no longer formally diagnosed as autistic, I can see that not everyone who struggles with autistic issues can get a formal diagnosis or gets one right away. I do not struggle any less than I did when I still had an official diagnosis.

I am also more aware that professional diagnosticians are human too with their own weaknesses and strengths. Some use “clinical judgment” only, like my current psychologist. She flat out denies I can or should receive any testing. Others rely heavily on testing or on developmental interviews. Professionals also have different areas of expertise. My first diagnosis was made under supervsion of the psychiatrist at the autism center in the city I lived in at the time. My second diagnosis was also made by a psychologist with expertise in autism. My third official diagnosis, which was partly based on the second, was made by a psychologist with mainly expertise on blind people.

When I lost my formal diagnosis, I became incredibly distressed. It wasn’t helpful that some autistic people said that no longer having a formal diagnosis meant I wasn’t autistic after all (and had never been). Supposedly my nine years in a mental hospital made me act autistic (desptie the fact that I was first diagnosed before I was hospitalized). Some of these people also twisted my words by saying I was going for a “second or how-many-have-you-had-already opinion”. The truth is none of my diagnostic assessments or changing diagnoses were at my own request, except for the current second opinion I’m waiting for. Besides, if three diagnosticians say I’m autistic and one says I’m not, apparently that one last diagnostician is right and those how-many-have-I-had-already who validated my autism “self-diagnosis” are not.

Of course, there may be people who self-diagnose who aren’t actualy autistic. However, by the logic that I’ve been hearing over the past half a year, there are also officially diagnosed autistics who aren’t autistic after all. Indeed, I did not suddenly become non-autistic when my psychologist dropped my diagnosis. Either I am still autistic or I never was.

3 thoughts on “Thoughts on Self-Diagnosis by #ActuallyAutistic People #SelfDXIsValid

  1. Hi, thanks for reading and mentioning my post.
    It’s not that I’m ‘against’ seeking an official diagnosis for myself. If it were easier to access, and there were something like services I could access as a result, then I’d certainly seek one. I admit there is also a certain fear of the stigma, especially by medical professionals, that I may encounter if I were officially diagnosed. I’m happy enough plodding along as I am.
    I might poke around your blog a bit, I haven’t read very much of it yet. I’m not sure I understand how or why you were ‘undiagnosed’?

    Liked by 1 person

    1. I didn’t mean to sound like you were against a formal diagnosis, since you did seek one for your children. I understood it’s in part an access issue. As for why I lost my formal diagnoss, I barely understand it myself. Part of the reason is the agencies that did my first and second diagnoses, lost the reports and the third was partly based off the second. (I didn’t have copies of my reports because I didn’t know to request them when I was diagnosed for the first and second time, in part because I was very mentally unstable.) Another reason is that I have hydrocephalus (yet have been asymptomatic since age two), which was known to all my diangosticians but which my current clinician says means autism can’t be diagnosed. This is bullcrap, but my psycholoigst has an attitude like she doesn’t accept criticism from a mere patient.

      Liked by 1 person

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