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.

[u/mvea]

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

[u/toin9898]

I finally figured this out for myself about two years ago, thanks to online research.

I didn’t pursue a formal diagnosis as there isn’t really anything that the medical field can do for autism, but since I started approaching things as if I do have it, I feel much better. That’s good enough for me.

[u/rollin20s → u/toin9898]

What are some examples of things you’ve done differently that have made a positive difference?

[u/toin9898 → u/rollin20s]

It’s a lot of managing stimuli. Noise cancelling headphones is a huge one, along with clothing choices. I realized during the pandemic how much of my brain space wearing “hard clothes” takes up. I CAN wear them, but the effort I’ll have to put into suppressing the fidgeting and squirming of trying to get comfortable makes it not worth it, unless the situation strictly calls for it.

But also just giving myself grace and being more aware/understanding of my limits. Seeing my tendency to get overstimulated from seemingly trivial things or EXHAUSTED from socializing is not a personal fault, it’s literally just how I’m wired.

I’ve been a wedding photographer for well over a decade and all those years I couldn’t figure out why I would literally feel hung over the day after every wedding. Exhausted, migraine, barely functional. After I got a smart watch that tracked my steps I could see that it wasn’t particularly physically exhausting, but looking at it through the lens of having to mask all day and being burnt out from that makes so much sense. Many of my peers do “double headers”, where they work weddings on both Saturday and Sunday. I literally could not.

Working from home has also helped a lot in preserving my functionality. I didn’t realize the degree to which being “on” all day at the office took a mental toll on me until my former employer started with RTO. I was having meltdowns on the train home every day and had zero energy left for anything other than sleep, I felt like I was losing my mind. The pandemic was a huge wake up call for me and the degree to which I had been masking my whole life.

I’m obviously on the low support needs side of the spectrum and have learned coping mechanisms that let me blend in enough that most people only think I’m a little weird, but looking back to my childhood? Textbook autism. Extreme food texture aversion (I still physically CANNOT eat eggs), selective mutism, intense special interests, tics/stims, hyperlexia, meltdowns, etc etc. I was a girl growing up in the 90s so never got screened. There’s a lot of it in my family, I’ve got a high support needs cousin, his sister is medium support needs, my brother and my grandmother have more of the same flavour that I do.

[u/GoGoRoloPolo → u/toin9898]

Building in rest time to my schedule is so important now that I wonder how I ever coped without it before. Ah, that's right, I didn't cope before. But I'm much more aware of my needs now in a lot of ways and I can't keep suppressing everything until it all comes to a head with a massive burnout.

[u/Razur → u/toin9898]

It didn't even occur to me that WFH could be an accomidation. Definitely need to remember this.

[u/toin9898 → u/Razur]

It’s a night and day difference.

I’m not being perceived all day, so I don’t have to consciously mask, and I tried wearing noise cancelling headphones at the office but my boomer coworkers would just walk up to me and talk at me anyways so the headphones were more frustrating than helpful.

[u/corvidcurio → u/toin9898]

Before I worked from home, I didn't realize how much of what was making me feel so miserable and exhausted all the time was related to the constant sensory stimuli and need to mask at work.

If I only had to go out and be in those environments occasionally, I could cope, but to spend the majority of my time like that... I can't live like that again. I couldn't even live like that before, really. It was wild how when I started working from home, I stopped wanting to die. But when my life was constant horrible noise and contact and people where I would get home shaking with my head buzzing and my skin crawling and a pit in my stomach knowing I'd have to go back the next day, and the day after, and the day after...

It broke me. I was exhausted all the time, I couldn't hold down most jobs for long due to burning out or melting down at an inconvenient moment, and even jobs I enjoyed I would come to hate due to constantly being overstimulated. But I loved getting up for work when I was WFM. I've been enjoying being alive for the first time in my life since maybe middle school? But I got laid off last November and WFH isn't as prevelent as it was when I got that job.

I'm struggling to find another WFM job, my EI is long gone, and bills keep coming, so. Needs must, I guess, until I can find something more suited to my situation. I would love to keep not being perceived all day, if I can help it.

[u/DowntownRow3 → u/toin9898]

People that don’t have autism or adhd don’t realize this is where a lot of self diagnosis comes from. 

Before I got diagnosed formally (at 16 ONLY because I got hospitalized) I started approaching my life long problems with AuADHD solutions, which can be the opposite of what works for most people. Very easy to comment on self diagnosis when you aren’t adhd/autistic and haven’t been naturally surrounded by other autistic people your whole life. It’s a nuanced topic

[u/ElvenOmega → u/toin9898]

My problem was I could tell something was wrong with me, and people treated me differently no matter where i went so it was something they could clearly see, but I couldn't figure out what it was. Every time I brought it up, people denied it and still continued to treat me differently and gaslit me over it.

I started to feel psychotic or like I was in the Truman Show.