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my-autistic-things · 4 years

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hey! omg i'm so happy I found your post / responce on your diagnosis for autism. i've thought i'm on the spectrum for a while now, i'm diagnosed with ADHD and have always had 'compulsions' that don't fit the criteria of OCD but that dr's have always put under that category UNTIL I read your post. okay I have NEVER had someone mention needing to feel stimuli on both sides of ur body ... "the gotta do the same thing on each side thing that’s super common apparently"as you put it ... (pt 1)

but when I read that today, idek how to describe it. ive honestly never met someone who has that urge and never been able to explain or understand why I do. thnk u so much for sharing that, it seriously did so much for me and connected a lot of dots in my head that I should connect with a dr to get 'tested'. idk if any of this makes proper sense. I did want to ask though if you know what that urge / compulsion is called or if u know of anywhere I can read up about it?! thanks so much (pt 2).

Super sorry this has been sitting in my inbox for so long! I’m glad my post was so relatable! I felt the same way until I read others talking about it vaguely and I was like...hEY! I don’t know what that urge/compulsion is called, but I really wish I knew! I haven’t come across any documents/research about this specifically, BUT I have read some articles about diagnosing autism that alluded to it. It’s typically coded as “repetitive behaviors” which for me, means that I touch the side of each finger with my thumb at the same spot over and over again, or do things 8 times. I don’t have the energy to look more at the DSM rn to find the specific language that it uses when describing essentially what the autistic community refers to as stimming, but that is generally what the DSM is referring to in various ways in that section of the criteria.

I’m going to discuss some stuff here just in case others want to know more/can relate!

On the show Atypical, the character does some things 3 times and it’s never mentioned that he has OCD, just autism, so it seems as though there is fairly wide recognition of having a compulsion to do something X amount of times. When I first watched the show I had an amazing moment of “I do that too!” because I never saw it before outside the context of OCD. After doing whatever fidget/stim thing I do with my right hand, I feel like things are super uneven and desperately need to do it on my left hand. My brain is just like “gotta do it” and there’s no reason for it. This got very bad when I was 12-14, which just so happened to be when I was under the most stress; I had just started going to school, I was fairly socially outcast, I realized I was transgender, I came out to my mom and I wasn’t allowed to start my transition, and I was severely depressed. When I was 14 I started transitioning, changed schools, was super stressed about suddenly having friends and wanting to keep them, and I actually started medication for depression and OCD (which did NOT work and made everything worse and scared my mom into stopping all medication). Anyways, soon after that I started research autism, started college, got my drivers license and had a lot more freedom, fully transitioned, and got diagnosed with autism as well. Learning about sitmming and being under so much less stress allowed me to...not be as stressed lol.

One of the ways OCD was explained to me (as in, me at 13 telling my therapist I have OCD and him telling me I don’t until I explained how distressing it is I have to do things 8 times), was that you feel like you have to do a specific ritual otherwise something bad will happen. Like there is an actual consequence you can explain. He asked me what I was scared of happening if I didn’t touch my fingers 8 times and I didn’t have an answer. For a random example, you need to flick your light switch on and off before leaving it on to scare away a monster under your bed otherwise it might attack you. Or, you’re scared your family is going to die and your brain tells you that if you do a specific ritual they will be safe.

Stimming is more like “this feels good and I will continue to do it until I am satisfied.” This can be very confusing when it feels compulsory, but I noticed that it only feels compulsory when I actually need to stim and prevent a meltdown/shutdown/in sensory overload. Once I started using stim toys, carrying a tangle around, using a necklace of fidget rings, and being aware I’m autistic and need to stim, my “OCD” started going away. Still got plenty of social anxiety, but the daily struggles I thought were due to OCD got so so so much better.

I’d just like to note, the main posts I’ve seen talking about needing to do things until it “feels right” or organizing things in a particular way that doesn’t make explainable sense but more until it “looks right” have all been about ADHD. ADHD and autism are so close, I don’t mean to mislead anyone to think about this OCD/stim compulsion whatever this is, is an exclusive autism thing. I was able to identify this as an “autism thing” by looking at the DSM criteria and interpreting the traits related to stimming and finding them directly corresponding with my “OCD” symptoms. But, the “feels right” aspect I have identified as an “ADHD thing” by reading posts made by others with ADHD talking about the same feeling. So, I’m guessing this is a neurodivergent thing in general that some people experience! Probably more commonly found in autistic people, but I wouldn’t say it’s only an autistic thing.

Feel free to comment if you can relate to this! Or have any more information/want to share your experience!

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