2020-3 Autism/ASD Diagnosis at 53!!
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Published 2020-04-07
It's very hard to get a diagnosis in the United States as an adult female. Right after I made this video, I went to my diagnosis appointment with the neuropsychologist. He had claimed to be up to date with "adult female autism", but he had forms from 2001 labeled with the old term "Aspergers." He only interviewed me for a minute or two(!), mostly just gave me a series of standard neuropsychology tests for hours (I told him how I would score in each one before taking it.. no surprises there–terrible with verbal, excellent with visual). He had never heard of "masking" which is the main reason many females go undiagnosed (if we made it this far into adulthood without anyone noticing we're autistic is because we've masking)! And he was not interested at all in seeing my list of autistic symptoms and tests I had previously taken. I practically had to force that stack of papers into his hands as I was leaving. My diagnosis, not surprisingly, was "inconclusive."
Another office that was supposed to call me back "in 3 months" seemed to have gone under with the Covid shutdown. I never heard from them.. drove by and their office was gone.
Covid 2020 dragged on... 2021... By then I'd watched 1000 videos of other people with "high functioning" adult autism/ASD talking, and I fully related to almost all of it. I was 100 percent sure that I had autism.
I finally managed to make an appointment with a local Psychologist who had diagnosed a pre-teen girl I know. And at the same time, I made an even earlier zoom appointment with a psychologist in England who had just diagnosed a long-time friend. I went through all the paperwork and online testing for England, but then they realized USA regulations would not allow it.
Finally, at the end of January 2022, the local psychologist came to the house, interviewed my mom and my husband, then spent 2 hours with me talking and doing some well-known tests with objects on the table, making up stories, and talking. His last words of the interview were, "You most definitely, without a doubt, have ASD."
I tried super hard to hold back my enthusiasm and refrained from jumping up to hug him like a crazy person. A month later I finally got the report in my hands. Even though there are things in the report that I don't agree with (such as a depression/anxiety diagnosis. If I ever have any of that, it's situational. I am not generally depressed or anxious in life, and don't appreciate having that in my permanent record!), THANK YOU!!!!
The big irony is that the only time I ever had therapy was briefly as a teenager after I dropped out of high school. The female psychologist had no clue what to make of my situation then (after fairly normal elementary and junior high years, in HS I was severely bullied, got into some trouble, and dropped out). The man that has just diagnosed me is in the same office(!), just down the street. Although the therapist I had briefly as a teen just retired, I was able to make a funny sarcastic comment to that office that I was coming in for my "follow-up" (36 years later). They were entertained by that. I even talked to the retired therapist herself, and even though she also knows my mom and had come to my wedding, she had very little memory of being my therapist decades prior, so that was unsatisfying.
end of update.
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Since some time in 2021, I knew I wanted to become an autism advocate since I accomplished some great things in life, and instinctually found the right kind of employment that allowed alone time, etc. My teen years were surreal and disturbing, and I later had some epic-ly wonderful relationships fail with no real clue what happened. But autism explains all of these things clearly - the good and the bad. I knew I'd feel more comfortable being an autism advocate if I was diagnosed, so now I need to start thinking about it. I want to write a book someday, maybe "Living half a century with autism and not realizing it." But I surely need a more click-baity title than that. Hopefully, I will make some autism videos. I'm not usually in the mood to vocalize on a microphone (that's why my videos are super inconsistent). But I will try! I know I have a lot to say.
All Comments (21)
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I FINALLY GOT DIAGNOSED!! YAY!! It took 2 years to find someone local. Please read my new UPDATE, and subscribe if you want to be alerted when I finally manage to make some autism advocacy videos. Love you all!!!
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I am 46 and just started suspecting that I have autism after looking into it because I suspected that my eldest son has it. He was diagnosed at age 3 with ADHD but it always seemed like it was more than that. I started finding information about women with autism and everything started to make so much sense to me. I also recently therapy because everything going on with me was getting worse. I can’t stand being near people eating, certain words make my skin crawl, cracking joints bother me even more than they used to, I need so much alone time that it is alarming, I notice every single speck of dirt in the house, I can hear the lights, I am overwhelmed if the tv is on at the same time as the radio, which is how my elderly Mother lives so it is hard for me to go into her part of the house. There is a lot. Oh..now I am obsessed with researching Autism in Women. Hahahaha.
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YES can we stop calling it a disorder, please!! 👏🏻👏🏻👏🏻
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yes - it was like everything coming together for me, finally it made sense - you felt different all your life and then suddenly you get it. Such a gamechanger.
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Just got mine last week at the age of 37! Nice to hear from others who were diagnosed as adults.
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ty for sharing. important subject and it's great to have folks like you as role model + advocate!
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You had me at Billy Idol handkerchiefs :-)
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Hi elaine I was recently diagnosed with mild autism alongside my ADHD Funnily enough I'm really interested in outside the box styles of music and combination and ghost notes, and really like your performance of stick men that is floating around here somewhere on the youtube I find that I dont connect with people or have things in common, and often think of things in different ways, and have little patience for conversation. It often feels like I wasnt wired for talking, if that makes sense, like it's unnatural to me. I get irritable quite easily when someone rambles on or repeats themselves at all, or is inconcise with their communication. I'm quite blunt, cold, and am told I'm quite strange. Weird sense of humor. I tend to avoid people, preferring alone time and my instruments. I play for hours and hours, getting lost in repetitive loops. I dont know if you can relate to any of this at all, dont know exactly why I'm saying all this to you, but... getting diagnosed is great. If it helps with your self management or other aspects of your life you struggle with, it's positive. Sending love from the UK Luke
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Very interesting video. I am not diagnosed Aspergers and don't suspect that I would be, but I can very much relate to things you talk about here such as: needing a lot of alone time, being endlessly absorbed in certain topics, sensitivity to certain stimuli, avoiding small-talk, needing to manage my mental energy levels carefully, and feeling somehow isolated or different to others. I suspect in my case I'm just very introverted. Anyway good luck on your diagnosis - wouldn't it be a relief to have an explanation for all this stuff you describe? But whatever the result you'll still be Elaine!
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I love music tuning/temperament obsessions! Never change. 🙂😘
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Totally relate to the sound problem being a physical irritation rather than the actual sound! The sound of a power washer or metal scraping on stone makes me feel like I am disintegrating, rather than ear pain. Great video! currently waiting for my screening for ASD xx
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51?! NO WAY Your skin is so nice
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Hi, I am going to get assessed at the end of the month. I am 29 and I can relate a lot to this. I wish I had known when I was younger. School was so painful to me. I struggled so much socially. I still struggle at work now but I am more comfortable than when I first started 8 years ago. I have some sensory struggles too. Thanks for making this. I assume you got diagnosed?
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You're awesome - years I found your presenations on 'free-will' & determinism very helpful & interesting, appreciated your electronic music, hardware hacking & space exploration... You are a brilliant, cool person & seem like a super Mom. Labels are just generalized categorizations - they can be helpful but don't define us. Keep on Rawkin, bud - peace & best wishes, cheers...
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I enjoyed hearing your story. Haven't watched anything else by you so I don't know your outcome but I would say YES you're an Aspie 😘
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Love that your cat's name is macaroon
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The name came from Hans Asperger.
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I too have been diagnosed And I would say that I wouldn't have come across microtonality if I wasn't. I first learned about microtuning at the age of 7 when I started questioning why there only 12 notes in the chromatic scale (I had been learning piano at that age) and wondered if there could be more,I never got a clear answer because I live in a pretty underdeveloped town in the texas borderlands.when I was 10 I finally had internet and quickly started learning that there was in fact other tunings ,At first I was amazed at edo systems and then quickly got bored of dividing the octave into different parts.I then learned about just intonnation at 11 and its uses in european music all throughout the 1500s and 1600s and of course its other uses in more modern contexts.and then when I discovered Partch I became entranced at his work and even my middle school principle was nice enough to buy the book "Genesis of a music" for me as a summer gift 0.0 ,I was around 13 then.right now at 17 I'm very invested in tunings based for inharmonic timbres and inharmonics in general and limit tunings ,however I have also been contemplating the use of sounds and noise and music(as you'll see in my channel lol) after I studied some of the works of luigi russolo and the great noise artists like Halim el-dahb the Real inventor of electroacoustic music (NOT pierre shauffer -_- like everyone says) and john cage,juan amenbar,edgard varese,cornelius cardew,mauricio kagel,luciano berio,the gerogerigegege,hanatarash,gg alin,the caretaker,jack stauber,the beatles(the experimental era),gotye,jean jaques perry,steve reich,terry riley,philip glass,ivan treviño,gustav holst,shostakovich,irv wilson,charles ives,carl ruggles,guido de arrezo,carlos chavez,wendy carlos,easley blackwood,ivor darreg,miles davis,john coltrane,milford graves,ornette coleman,dizzy gilespie,al sayyd kabir,tom waits,and many more that I can't recall immidiately at the moment. It is however awesome that you made this discovery about yourself and I hope many things come into perspective for you and that you are able to continue your amazing work in the microtuning field :) Best of luck ,VRAI...
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wow now you're starting to get me wondering about myself
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ugh, "keep your eyes peeled" -
