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I went through an assessment and at the end of it got a very ambiguous “you’re probably autistic but maybe not! Maybe you just have hella trauma and also adhd and also anxiety and also bpd!” report (all things I had a diagnosis for going in and self reported…) It was through Medicaid so I felt lucky and the process was really not that much of a wait when looking at how long some of you have had to wait, but post my assessment I looked at reviews of the place and they were…not good to say the least, lol. It seems that they told me they could assess adults but autistic adults who have gone through them strongly disagree. I’m seeking out a second opinion because of the ambiguity, the amount of research and autistic peer validation concerning my experiences, and the way I very blatantly even to them marked high on the diagnostic tests. I marked especially high on the quotient for masking. What gave them reasonable doubt was that I made good eye contact (lol I was looking at my assessors nose…a trick I learned in grade school) ,was able to make good conversation / use of gestures (things I have practiced since grade school, again) and was able to be creative. (lol)
I have dyscalculia, synesthesia, all the marked social deficits, experience meltdown and shutdown, have intense but limited interests, (I talked about my interest in spiders and my dog for a little too long), and although I didn’t look at any information anecdotal or otherwise on the assessments until after mine was done because I really wanted to go in blind, it seems that the way I answered questions in relation to the test fall in line with people who have recieved a diagnosis (like the flying frog book, lol.) They also noted no repetitive behaviors after me explaining that I have trained myself to sit still over literal decades. I do have plenty of repetitive behaviors that are pretty obvious to anyone who knows me, or looks at me in my down time. (Cricketing, pacing, skin picking, finger tapping, teeth grinding, and I did when I was a child as well!)
They didn’t ask for a character witness at all despite my sister being neurodivergent (adhd) and presenting differently than me in ways that would likely be enlightening to them, and despite my anxious emailing during the process to check to see if the staff understood the intersectionalities of my life specifically it seems I slipped through the exact cracks I was worried about. I’m black, AFAB, non binary, and a lot of my masking was formed under the threat of childhood violence. I was also hyperlexic as a child, have face blindness and a very particular minds eye (a running joke in my family is that I couldn’t put together a police sketch for them if they went missing), experience alexithymia, consistently miss the markers for having to eat / pee until I am hypoglycemic/feel anxious af (literally just went to the ER because of this) and then realize I haven’t peed in awhile and need to.
This process has been disheartening at a time where everything else in my life is completely overwhelming, and I went into this hoping to get tools. When they were going through the like 6 or 7 power point slides they listed my reasoning as wanting to know because of social deficits and left out the main reasons I came despite that being a topic of conversation pretty much off the bat. (The main reasons being pretty dire and also related to burn out, meltdowns & shutdowns, and work.)
I’m getting a second opinion, and want to know if anyone has resources in the Philadelphia area? I’m willing to travel to NJ/NYC if necessary, and I hope this doesn’t come off as me wanting a particular diagnosis because it really is not that. I was really hoping to walk away from this assessment feeling secure / not in doubt of whatever result I got ultimately, but left feeling like I masked well when trying not to? They also made it sound like I was probably autistic but probably not because of a lot of negative and juvenile (and frankly insulting) stereotypes about autistic people that have me confused and also sad and also just, yeah. I’m doubting a lot right now despite everyone around me telling me that the assessors seemed like they didn’t have the necessary tool-kit. I’ve done a lot of research and don’t feel comfortable self-identifying without an official diagnosis (although I know it’s valid!) and again want to seek out another more qualified assessment as well as hear back from the community. Thanks for reading!
Thanks! After reading my full report I have a lot less doubt! They seemed to admit themselves that because of my trauma that can look like autism they were unsure. My autistic traits pre-date my trauma so I am way less unsure. Lol. I also again scored really high on all the testing and the chicken or egg thing is really the only place they had any doubts. It’s not helpful on their part and the language felt steeped in negative biases about autistic people, but reading how I scored makes me feel way more valid and I know if I shared it with people here many people would agree! The whole thing is kinda wild. Thanks for commenting! (-: I again really do think self diagnosis is valid af. I’m still going to seek out a second opinion with specialists as it seems that their lack of knowledge on the subject was why despite scoring high I received such an ambiguous result. I scored ridiculously high in masking and high on every other quotient, that being said.
If I have to pay out of pocket I would definitely be leaning towards not doing it as some of the most impressive / extensive testing for adults that I’ve seen not involving Medicaid are like, 5k lol
I’m so sorry that that’s been your experience. I hope that you get at least to eventually see a specialist that is competent. Clearly that’s not a very easy thing to find, lol. I was lucky enough, I guess, to receive my report back and actually find a lot of what they said really validating even though they themselves clearly do not have the appropriate skill set to parse through my trauma vs my autism, and didn’t really ask the people around me any questions at all. They themselves were not that competent again, but my actual scores on all of the quotients for Autism were undeniable / high and for them the problem seemed to be the “is it trauma that looks like autism or is it trauma and autism?” Chicken or egg type stuff. It’s really wild, because I feel like autistic people in general will collect traumas, especially when you have childhoods like mine. There have got to be specialists who have worked with both and can make proper assessments. (‘: Despite being bummed out by the ambiguity, I feel even more certain and will be looking for a specialist who can cover those intricacies and intersections, because yeah, it’s really wild to be like “you have all the traits for autism but will continue to receive no tools because you also had a tough upbringing.” My symptoms pre-date my trauma but for people who do not have that clear of a line what do we do? It’s absurd. You can have, and statistically likely will have, both autism and trauma. The extra random prejudices that their language was steeped in plus the constant misgendering of me was also wild. I’m gonna keep looking. I know it’s really easy to get burnt out on this stuff, so thanks for sharing and I hope you’re able to find accommodations regardless of the ways they are just not there yet in regards to the research and nuances of actual autistic lives.
This did help, thanks so much for taking the time! I’ve done so much research and have really found community here / have been able to see so much of my lived experience reflected in the stories of actually autistic people. This helped shake off some of that self doubt. Even to me this assessment process felt half-baked. I also wanted to leave room for the possibility that I am not autistic and just appear to be so, but at this point I’ve sat with it for a long time and done enough digging into my childhood and have a lot of evidence to support otherwise. It’s just difficult wanting to be validated medically even through the lens of it being for legitimate reasons / for tools and care and help understanding myself and my live as I’ve experienced / navigated it thus far. I was raised by a very “there’s nothing wrong with my kid” immigrant mother and am just now seeking help for my adhd and trauma as well because it was just not something I was able to have access to as a kid. It’s an upbringing that comes with a hell of a lot of self doubt. I recently went no contact with her because of the ways I’ve been able to recontextualize some of the abuse I experienced and shared that with my assessors and it feels so disorienting to be told that I score so high diagnostically but would not recieve a diagnosis because of things that I know a lot of people here (and specialists) would disagree with. Fuck the system indeed, lol. (‘:
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(‘: I had the same thought & was told the same thing by autistic friends. It sucks, but also is helping to remove some of that self doubt. Thanks for sharing!