Autistics and self diagnosis

I see a lot of bullshit in autism and autistic communities about those who self-diagnose. They try to say that their identity isn’t valid, or that they just must not be autistic enough, or a whole slew a thing. There’s a plethora of problems with this.

First of all, read this.

And now we are going into my personal beef with people who bash those who self-diaganois.

  1. It is classist. Testing is expensive and often not covered by insurance.
  2. The testing is EXTREMELY taxing and emotionally overwhelming. The fallout from testing can be sometimes not worth getting the official DX.
  3. For some. once the official DX is in your medical chart, it can cause doctors to be ableist and ignore other very real problems, brushing it all up to autism.
  4. Getting a DX can literally endanger lives as autistics are more likely to be murdered at the hands of police – even when they know the person is autistic.
  5. It doesn’t stop the “you’re not really autistic” bullshit.
  6. Even if you can afford the testing or your insurance covers it, if you don’t find a provider you’re comfortable with, the testing results may not be accurate
  7. You still could be misdiagnosed and this can be soul-crushing.
  8. You’re still denied either agency or resources
  9. You don’t escape the functioning labels. You’re still labeled as “smart”, “high functioning”, or “mild” and hearing doctors throw around those words in relation to you all the time sucks ass.
  10. It’s sexist. Women are less likely to get the official DX. Not only that, this excludes gender non binary people, which is another problem all together.

 

Next week I will write 10 more reasons why denying people the right and freedom to DX themselves is problematic at best.

3 thoughts on “Autistics and self diagnosis

  1. Hell yes to this, if I am not going to recieve any medical treatment and I can’t financially or emotionally afford to go through testing that shouldn’t mean that my struggle doesn’t count.

  2. I agree! My son was dx before the age of 1 with Cerebal Palsy and then over the next few years he started having seizures. But these 2 things you can see!! I was seeing things that were not typical. The Dr and schools always brushed away everything I said as being a result of Cerebal Palsy or seizures or behavior problems!!! Finally at age 7 I pushed hard enough that the school tested for ASD and the Dr gave a referral for nuero psych eval. The school completed the testing right before the end of the year. And the school psych actually told me that there was no way my son was on ASD because he was learning to cope in life. I told he was full of it for saying that autitistic kids can’t learn to cope and grow!! 2 months later I took the school testing to the nuero psych eval. He was diagnosed PDD-NOS but my son had a meltdown and wouldn’t cooperate with testing. Now at age 10 I moved from Alaska to California for better services. Right off the bat we were sent to UC Davis Mind Institute for ASD testing. Again I took the Alaska school testing and the last nuero psych eval and my son was dx with ASD & ID. I didn’t know whether to feel relief or cry or be MAD!! You see with the ID dx I was told his thinking /processing was half his age!!!!
    Had the schools and Dr listen to me in Alaska he could have had early interventions put in place. Instead of him suffering through everything that he has gone through with the schools!!

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