r/science Professor | Medicine 5d ago

Neuroscience New study finds online self-reports may not accurately reflect clinical autism diagnoses. Adults who report high levels of autistic traits through online surveys may not reflect the same social behaviors or clinical profiles as those who have been formally diagnosed with autism spectrum disorder.

https://www.psypost.org/new-study-finds-online-self-reports-may-not-accurately-reflect-clinical-autism-diagnoses/
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u/VGSchadenfreude 5d ago

A big issue with self-diagnosis is simply the fact that proper diagnosis isn’t even an option for most adults at all. An adult can show every single classic symptom of Level 1 Autism and still not be able to get a formal diagnosis because all of the current medical resources are almost exclusively focused on children.

Sometimes, self-diagnosis is all we’ve got.

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u/kindnesskangaroo 5d ago

This is what I’m going through currently in regard to my own diagnosis for autism. The psychiatrist who evaluated me for ADHD strongly suggested I get formally assessed for ASD if I can afford it. The problem is that insurance does not cover autism assessments for adults so I would have to pay out of pocket. This will cost me at minimum $1200 USD where I live. I can’t afford that, who the hell can afford that?

Do I have autism? Yes, most likely. I haven’t worked in 9 years and my husband has to help me navigate daily life because I had what can only be described by my therapists as autistic burnout so bad in 2016 that I almost literally died. It left me so cognitively impaired and destroyed my cognitive function to the point that I had to restructure my entire life around healing from this burnout. At this point my therapy team believes I will never fully recover and my new normal looks so wildly different from how I was ten years ago. All I want is an official diagnosis so that I can have peace of mind and so people like the miserable, hateful ones in this thread mocking others who are just desperate for some clarity will finally be quiet.

I’m so exhausted.

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u/VGSchadenfreude 4d ago

I’m going through that burnout myself right now, but without any support system and still needing to find a full-time job to keep a roof over my head…

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u/kindnesskangaroo 4d ago

I’m sorry to hear that. If it’s as severe as it was for me, I really suggest you make arrangements or something before your body decides for you. Because it will eventually until you’re disabled physically, too. I didn’t have the stability or support at the time either. My husband and family used to tell me all the time, “Of course people don’t want to go to work, you’re not alone. Suck it up and stop being dramatic.” So I thought I was just struggling with something everyone else dealt with easily (this was not it by the way and contributed major harm both mentally and physically). I thought everyone wanted to literally die when they woke up every morning and had this awful knot in their chest that never went away and were constantly nauseous, exhausted and miserable at their jobs. It wasn’t until I was hospitalized anyone took me seriously, but by then the damage was done.

On a brighter note after almost a decade of recovery and equipped with what a new normal looks like for me, I am stepping back into the academic sphere to finally and hopefully finish college. I was worried the sense of dread I always felt that made me want to throw up when faced with structure and constraint would return but it hasn’t so far and that’s been a relief. It gives me hope that maybe I can piece together som semblance of a life that isn’t dependent solely on government assistance, which would be a privilege and blessing.

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u/VGSchadenfreude 4d ago

I’m trying, but literally everything costs money that I just don’t have.

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u/PenImpossible874 3d ago

Also all medical resources for everything are directed at white men who live in Western nations who are middle and upper class.

It's hard for working class Americans, People of Color, people who live in Africa, Asia, Latin America, Polynesia, and Melanesia, and women, because none of the medical establishment is made for us.

Because a lot of symptoms of everything varies by culture and sometimes biology, stereotypical symptoms of autism in America is going to be very different from stereotypical symptoms of autism in Burundi.

If the stereotype in America is "boy who would rather play with chemistry sets than with other kids his age" then how would a poor child in Burundi get diagnosed if their family can't afford chemistry sets or any toys at all?