Image text: @agnieszkasshoes: "Part of what makes small talk so utterly debilitating for many of us who are neurodivergent is that having to smile and lie in answer to questions like, "how are you?" is exhausting to do even once, and society makes us do it countless times a day."
@LuckyHarmsGG: "It's not just the lie, it's the energy it takes to suppress the impulse to answer honestly, analyze whether the other person wants the truth, realize they almost certainly don't, and then have to make the DECISION to lie, every single time. Over and over. Decision fatigue is real"
@agnieszkasshoes: "Yes! The constant calculations are utterly exhausting - and all under the pressure of knowing that if you get it "wrong" you will be judged for it!"
My addition: For me, in addition to this, more specifically it's the energy to pull up that info and analyze how I am. Like I don't know the answer to that question and that's why it's so annoying. Now I need to analyze my day, decide what parts mean what to me and weigh the average basically, and then decide if that's appropriate to share/if the person really wants to hear the truth of that, then pull up my files of pre-prepared phrases for the question that fits most closely with the truth since not answering truthfully is close to impossible for me.
https://www.instagram.com/p/CvPSP-2xU4h/?igshid=MzRlODBiNWFlZA==
Yes, it is genetic. If you are a woman, that makes a lot of sense as the diagnostic criteria is only now starting to catch girls more frequently, even though it's still very flawed. Girls (and non-white people) are missed because the diagnostic criteria was developed studying young white boys exclusively. It turns out symptoms of autism are very variable and girls are much more likely to mask their symptoms and fly under the radar as just shy or quirky.
Here's Kate Kahle on why autism is missed in girls https://youtu.be/UI6kObHls-4
Here's a YouTube channel from a mom who was late diagnosed after her child was diagnosed https://youtu.be/zoXmrGtybts
Autism Instagram talking about how the older generations of their families are all full of autism and just don't know it https://www.instagram.com/p/CvMwpDNxiPL/?igshid=MzRlODBiNWFlZA== https://www.instagram.com/p/Ct1VlsMxrSn/?igshid=MzRlODBiNWFlZA== https://www.instagram.com/p/CmFFZuDMjXJ/?igshid=MzRlODBiNWFlZA==
Scientific paper on heritability of autism "heritability was estimated to be 83%, suggesting that genetic factors may explain most of the risk for ASD. " https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5818813/
Wow, thanks for all the information. I’m a black male and I would have to say that it’s not really talked about at all, because it’s a sign of seeming “weak”.
That YouTube video you linked hit home and explains a lot of things that my ex partner did such as not taking care of her hygiene properly, and I just couldn’t understand at all.
I’m thinking mostly that she was autistic and I’m starting to see that I demonstrate some signs, but not as much as she did. I’ve already started medication for anxiety and I can tell a world of difference in my daily interactions with people.
Haha my bad for assuming, maybe because you said daughter my brain just thought Mom idk I feel dumb. But being non-white is definitely also known for being missed for diagnosis.
And something I've been thinking a lot about recently is that in the medical profession "diagnosis" is reserved for people whose symptoms impact them to a very specific (and arguably arbitrary) criteria of severity. And these criteria are constantly being challenged and updated since autism and ADHD (the conditions I'm most familiar with) are still very misunderstood and research is ongoing.
But, in my opinion based on my understanding as a layperson with a special interest in psychology generally and autism and ADHD specifically, these conditions are Neurotypes that are spectrums. And so many people like myself, and perhaps yourself, may have a lot of symptoms but have managed to fly under the radar because we were able to get good enough grades in school for example, and have good enough social skills to make and maintain friendships, and get and keep jobs, all to varying extents. But inside, unbeknownst to those around us, we have been expending 10 times, 100 times the energy that most people use in order to meet those expectations put on us. And we just assumed everyone was struggling this hard with everything. But it turns out it's not supposed to be this hard.
And that's why you see most autistic and ADHD folks diagnosed with other mental health conditions, like anxiety, and depression in particular. Anxiety because we learn to be on high alert for when we are not behaving in the socially acceptable way so we are constantly in fight or flight mode in order to stay on top of those expectations. Depression because it's fucking debilitating to be using so much energy to meet those expectations and constantly being on edge and constantly feeling like you're failing or messing up. But the root cause of all that is that our brains are wired differently and society is not made for us.
I thought this was an absolutely excellent video about the Black experience with autism and getting diagnosed, still a little long half an hour, more focused on children but super valuable for adults as well. https://youtu.be/NyVfL8FZ_Vg
This is a really excellent video by Melissa Simmonds who is Black British and autistic and a parent. It's almost an hour long and talks about being Black and autistic and the intersection of race and disability and culture and white privilege. I really appreciated learning about her perspective and the effort it took to create this presentation. I hope that it might give you a resource to find more information that you will relate with or find helpful. https://youtu.be/LW-C_MVxNEU
Here is a YouTube channel by Bri Booth where she shares her experiences as a late diagnosed autistic Black woman that I've only seen a little bit of but I really liked the way she expresses herself and makes her videos. https://youtube.com/@BriBooth
And here is a video I really appreciated by Jessica McCabe on her YouTube channel How to ADHD where she interviewed 13 people from 4 countries about their experiences being Black with ADHD. I don't know if that will be as useful, although the comorbidity rate for those with autism to also have ADHD is up to like 80% so I'm hoping some of these folks might lead you to additional resources https://youtu.be/oh-3ULQJiEY
Unfortunately I couldn't find any YouTube channels that were specifically about the experience of late diagnosed autistic Black men but if you happen to find some and remember this comment, please do let me know because I would really like to learn more.
No worries!
This makes so much sense. I do find myself struggling at times to keep certain relationships going with people I meet or sometimes even with just my friends. For example, sometimes when I get a message from a friend I end up not reading it, and saying to myself, "I'll look at it later", then that later becomes later and later... until it just constantly starts eating away at me every day and maybe two weeks later I might finally respond... I'm glad my friends that I do have don't take it that I'm being rude 😅
I definitely feel this. Sometimes I have to process in my head how to respond a certain away when I'm around people in a social setting, and when I actually say it out loud, I just think to myself how stupid that must have sounded and the people around me probably think that I'm weird.
Thanks for the videos! I know what I'll be watching tonight, and if I do run into any videos regarding Black men diagnosed with autism I'll send them your way :)
There's some awesome black autistic creators on Tiktok. You can find them via the hashtag #Autizzy.