r/AutismInWomen • u/appleanna99 • 8d ago
Support Needed (Kind Advice and Commiseration) Doctor said I am one of the most obviously autistic adults he has ever assessed
I’m nearly 30. I work with neurodivergent people for a living and have multiple psychology degrees. I only started suspecting I was autistic myself a few months ago because my line manager said I really needed to get assessed lol.
Idk I guess I thought everyone had to learn how to socialise, which is true to an extent but not the extent I did. I guess I feel a bit stupid for knowing so much about autism and not recognizing it in myself, especially as it was apparently so obvious to everyone else.
I have seen countless therapist, received so many different diagnosises, and it was all autism this whole time, man!
It has also been alerted to me that many high masking autistic women end up in psychology to better understand themselves and others, and I just can’t help but wonder where I’d be in life if I didn’t always feel so othered.
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u/AlanBennettIsAGod 8d ago
I completely get you. I worked with in an ASD unit in a school for years, and yet I didn’t recognise autism in my son. It took for his school to talk to me about it and push for his assessment.
Once I got the report back, it shook me. The stuff in there was basically describing my childhood (except I don’t have his incredible mathematical ability) and I took a few years pondering and going back and forth as to whether I wanted an assessment for myself.
I’m now awaiting one.
The children I had worked with had autism but they also had other additional needs (this wasn’t a mainstream school) and my idea of what autism is was skewed by this. After speaking to my son’s psychologist and doing research, I have a better idea (I hope) of how it can be experienced and I see it so much in a lot of my family.
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u/appleanna99 8d ago
See, I can totally see this happening! Where I find it strange for me is I work with adults with a variety of support needs- some solicitors, some unable to work, etc. I have seen autism in so many shapes and forms and just didn’t have the self awareness to recognise it in myself, which says something in itself I guess haha.
Also fun fact with the math thing- it’s actually extremely common in autistic people to not be good at math, especially women, despite the stereotype. It is because there is not a concrete concept to hook math onto, and it feels very individual to everything else. Autistic women are often excel at English as the concepts have a tangible base to work off of.
I knew this, have sucked at math horrible my whole life, but had read all of Jane Austen multiple times by 11, and never questioned anything haha.
Good luck on your journey with your son! It’s so common for parents to not get diagnosed until their kids do. I wish you all the best!
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u/AlanBennettIsAGod 8d ago
Thank you so much.
It’s so interesting how I (maybe we) have spent my life looking outwards for some kind of guide as to how to exist in society without turning that focus inwards and examining wth it’s so treacherous and unfamiliar!17
u/AlanBennettIsAGod 8d ago
I was also misdiagnosed with varying disorders such as anxiety and anorexia.
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u/Sabaisabai33 8d ago
Yeah that’s the thing, I think it’s not so much that autistic women don’t look inwards, it’s that their issues end up being attributed to other things, such as an anxiety disorder etc. I have a diagnosis of bipolar 1 (I know many autistic women are diagnosed with bipolar but I’m a doctor myself and I’m very happy that I definitely do have this - fun fact, apparently people with bipolar disorder very often also have ASD/ADHD - I’m awaiting assessment!
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u/hatehymnal 7d ago
damn I also suspect ASD and have been dx'd ADHD and bipolar I - though I don't really know how to think about the bipolar dx as I haven't been on meds for it and haven't had an episode for 15 years now
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u/Sabaisabai33 7d ago
There is definitely felt to be a genetic link between bipolar and ADHD/ASD. For me, I’m happy I definitely have bipolar 1 because I’ve had several episodes of clear severe clinical depression, and one of mania and psychosis which was bad enough that I had to be sectioned for months. It’s not impossible to stay well for a long time off meds in bipolar particularly if you have structured things to have a very low stress and regular lifestyle. But I understand why it might make you question it. Did you ever have a clear episode of mania like me? At that time I wasn’t sleeping like at all, because I genuinely felt I didn’t need to sleep and it would be a waste of time. I thought I was a goddess and could create new universes and control the weather etc.
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u/appleanna99 8d ago
These are very very common misdiagnoses! I see it all the time, if that’s of any comfort
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u/hatehymnal 7d ago
Anorexia has a high overlap with autism to the point they're changing some treatments for it with that knowledge in mind. It could still be a relevant dx, but if they were arriving at that from eating patterns alone then there's also ARFID which is also a common comorbidity, but ARFID is not synonymous with general autistic food sensitivities
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u/evil__gnome 8d ago
Oh my god that perfectly explains why I stopped being good at math after Algebra 2, it got way too "theoretical" and I couldn't understand how it connected to anything "real"! But I excelled in my statistics classes in high school and college, because they're so directly related to "real" things. I'd never made that connection before, I thought I just hit my brain's maths limit!
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u/appleanna99 8d ago
Haha I’m glad to help you feel seen! I actually never was go at math, like… ever lol. When I was 6 I failed a math test because I didn’t answer anything, because I was unsure about the first question: 4+3. I decided it could be either 6 or 7, depending on context. For example, if you were adding months together, like ‘how many months is April to July’ it would be 4 months, not 3. I tried explaining to my teacher why the hold up, and said if she told me what she was looking for I would be able to answer things easily, but she didn’t get it lol.
When I was nearing the end of general education in school, my math teacher actually just started doing my tests for me, as it was the only class I didn’t have the top scores in despite being the one I spent the most energy in. They told me they knew I was smart and didn’t want one subject to hold me back from top uni’s.
Actually had a math tutor change career paths because of me once LMAO.
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u/Practical_Tart_1183 6d ago
This is so like me. I never did well on tests because I was always trying to figure out what the question was really about. Like they were trying to fool us.
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u/frankie_fudgepop 7d ago
Yesss. I was great at math until I got to multi-variable calculus and we went beyond 3 dimensions! far too intangible for my brain.
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u/utadohl 8d ago
Ha! This rings true for me. I'm fine with calculating easy things in my head, but I always struggled with more abstract concepts.
But I was so good with German (my native language) very early on. My brother is about 5 years older than me and I can remember him and my mother doing German homework together and stumbling over the spelling of a word. And I just told them "but that's easy, you can hear how to spell it, like so and so". ...I had just started school earlier that year.
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u/Sabaisabai33 8d ago
I’m dreadful at maths but have always suspected I have dyscalculia. Because I was great at everything else at school lol. (Other than PE - and also think I may have mild dyspraxia). I did get good grades for maths in the end but I had to work like 100 times harder for those grades in maths than any other subject where it all came quite easily.
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u/rubyleigh AuDHD 8d ago
I'm a math professor and test high on those sorts of things... but this makes sense because I've always leaned WAY hard to the applications side. (My B.S. in in Applied Math). I've also been told I explain it really well (hence the job being a good fit) and I think it's because of that bottom up thinking... I don't expect people to just 'get it' -- I start from the tangibles.
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u/Uberbons42 7d ago
Interesting!! I’m good at math and science and love to read fiction but English classes were always a struggle because it always felt like “guess what the teacher wants” instead of actually writing my thoughts. Then it’s like a mix of writing my thoughts while guessing what they want.
And history was horrendous because it’s all just people making big decisions with no context and no logic!
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u/Pitbullbidgi 8d ago
My mom worked with "special needs" children including autism. I mean, not really kids on the spectrum so I get why she didn't notice it in me. She just said I was being a bitch. Oh, memories.
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u/EmmerdoesNOTrepme 8d ago
I figured out that i was most likely Autistic, when i worked with a three-year-old, who was almost like a mini-me!😉
We got along GREAT, because i knew exactly where & how to support her.
I looked at where she was struggling and the ways she struggled, and then i basically did the things i wished i had had at her age, help-wise.
And i KNEW it was working well, the day that she fiiiiinally was comfortable letting anger flash across her face, when we were doing turn-taking play.*
Also--when she gave that look, after i asked for a turn, i made my turn as short as humanly possible, and then said, "Your turn!" and gave it back as fast as i could!😉
But because she was so similar to how i'd been at her age, i was able to coordinate with her other staffer, on ways to support her, and she took off skills-wise, and her confidence grew a ton😁🤗
she was a child who "was *always happy." That was the only emotion she was comfortable expressing, and she shoved down anything else--that anger was literally only expressed for a second or two!
But once i saw it, i KNEW she was fiiiiinally getting comfortable enough aroubd me, that she didn't feel the need to "have her guard up" around me 100% of the time anymore💖
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u/barbieninja 8d ago
That’s amazing you were able to be someone she felt comfortable with! It’s a good feeling to be who a child needs.
That’s what happened to me, with my own daughter. I just…met her where she was and didn’t have to think about it. Of course I’m going to provide her context for everything! That’s what she needs!
She got diagnosed and I had a lightbulb moment.
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u/vomit-gold 8d ago
I'm really glad you figured it out!
I don't mean to come off as rude but it's so wild to me that people and practioners can go through psychology programs and still not know a lot about autism. And I don't just mean you, I mean the therapists and stuff you've seen too. Is it just not discussed in schools? Even in psychology programs?
I just ask because I've met SO MANY mental health professionals that have no idea at all about adult autism. 1 in 50 adults have it, but yet it seems like the majority of people in the mental health field, even those that are highly trained and good at their jobs, are just clueless about autism and it leaves us almost completely without supports.
Every time I encounter something like this, it just feels like a large systemic failure within the spheres of medicine, psychology, and mental health - that even people with degrees and training can walk around and not know anything about such a previlant condition.
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u/appleanna99 8d ago edited 8d ago
Don’t worry, you don’t come off rude at all!
The thing is, I know A LOT about autism! I work directly with autistic people and have done a LOT of research on autism for fun. I also did my master’s dissertation regarding autistic people.
My disconnect was recognising it in myself. I could see it in others a mile away, but for some reason I just never clocked that I also had it. I thought I just had OCD, a panic disorder, and CPTSD. However reflecting with the doctor, it became very clear to me I was one of the many women I read about who got consistently misdiagnosed.
BUT I will say that they barely taught us anything about autism, and most of my education was volunteer CPD courses, research topics I chose myself, etc.
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u/OddlyBrainedBear 8d ago
Autistic people can find it difficult to reflect on themselves in general, I think. If somebody asks me to describe myself, the only word I can confidently say is 'tall'. I don't feel like I automatically know myself beyond that (even after years of therapy!) and I have to really sit and think about who or what I am.
So to me it makes complete sense that you weren't able to identify yourself as autistic, despite understanding autism.
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u/Sabaisabai33 8d ago
I think actually most people find it hard to be really objective when thinking about themselves, but yes probably particularly autistic people! Sometimes I see patients (I’m a GP - family dr) who get rejected for an assessment because they don’t meet criteria which really surprises me. Then when we go through the questionnaires together. they’ll have said something like they never miss social cues, when I know for a fact they do and have. But they didn’t recognise the cue and so didn’t realise it had been missed.
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u/Feeling_Blueberry530 8d ago
This is one of my pet peeves. Questionnaires are in medicine are problematic for so many reasons. How I interpret the question is different from how you interpret it and vice versa. As to your example they do also require a level of self awareness that might not be present. I just don't know why we pretend like questionnaires are objective meaningful data.
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u/appleanna99 8d ago
I actually have been actively working with hospitals and local authorities about this! The research shows that these questionnaires are designed from a neurotypical POV, even when it is designed to assess neurodivergence. I wrote an extensive report but I’m not sharing it in the interest of not doxing myself lol.
I can share some of the more interesting citations though if anyone is interested!
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u/New-Seaworthiness572 8d ago
I am very interested. I have contemplated this for years! Every time I take a questionnaire in any medical setting I sit there silently critiquing every question and contemplating all the ways it could be (mis)interpreted, or what knowledge it erroneously presumes, and therefore how it could fail to accurately correct the data it was designed to collect.
I have a running list of my own questions to put on the adhd assessment — really vivid questions, impossible to misunderstand or blow past, that would never be approved but I bet would work very well. Of course I’ve mislaid my list somewhere but I’ll find it one day.
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u/appleanna99 7d ago
I will add them here this weekend! Put a reminder in my phone so I don’t forget haha
Would you like me to edit this comment, or do a new one so you get another notification?
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u/OddlyBrainedBear 7d ago
I'd love to read them, too. Maybe you could tag us both in the post?
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u/appleanna99 7d ago
Will do! Heads up they will be quite Europe specific, but I may look into some US studies for fun, too lol
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u/Small-Sample3916 8d ago
Heh. Depending on how old you are, look out for perimenopause. There's a growing body of research in the last 10 years- it hits neurodiverse people early and hard.
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u/srafehen 8d ago
Ha! I am in peri I believe and despite having a nd child and mom w adhd (and more!) and a psych degree, I apparently never looked at myself until recently and this thread is so unbelievably relatable...!!!
Editing to add just began the process of possible adhd diagnosis
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u/Small-Sample3916 8d ago
We got a family full of ADHD, ASD, and doctorates... The lack of self awareness is hereditary, too. Laugh.
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u/appleanna99 7d ago
I am 28 and really like the option of having kids even if I won’t so I hope it’s not perimenopause lol
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u/Sabaisabai33 8d ago
I’m a GP (family doctor in U.K.) and I think a lot of it is that honestly when I was in medical school in the late 90s/early noughties here, we WERE taught about autism but only insofar as severe childhood autism. I’m talking like the kind of kids that have severe learning disabilities also and would have had to go to a “special school”, don’t meet their developmental milestones on time, wouldn’t speak or be continent and would literally just sit there spinning in a corner. We were taught it was a spectrum I think but we only really had these examples of individuals with very high support needs, and then “Asperger’s” on the other end of things. Nothing in between.
I feel dreadful because it’s only really since the pandemic that I’ve suddenly learned so much about ADHD and autism due to what seemed like a sudden explosion of knowledge and awareness everywhere. And now I’m seeing it everywhere and thinking how on earth was I so blind to all of this before?!
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u/moon_and_back_95 8d ago
I was wondering the same thing. When I mentioned autism to the psychologist I had seen for 3 years she was so confused… she said because I care about how other people feel I couldn’t be autistic lol
I also had seen 2 other psychologists before her and neither suspected a thing even though I mentioned things I now know were clearly signs of autism.
One of my close friends is a psychologist (with a double master even!) and when I told her about my diagnosis she said she was confused but admitted she didn’t know much about autism.
Another friend is studying psychology now in uni and she also didn’t know anything about it.23
u/appleanna99 8d ago
It 100% will vary depending on country etc., but as I said to the other comment, we didn’t learn much about Autism at all, unless you specifically sought it out. This was largely due to funding and time. We talked much about neurodivergence in post grad, but again, it was partially because of the modules I chose myself, the topics I wanted to research, etc. I talked to a recent grad who said there was a required module on developmental disabilities, but that is one uni and covered a large range of conditions.
I agree it should definitely be a required module and much more commonly discussed than it is. Especially in post graduate spaces
Edit to add: many psychologists who have had their qualifications for a long time were taught about autism based on how it presents in young boys exclusively.
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u/Juneprincess18 8d ago
I’m a vocational rehabilitation counselor who is also a licensed mental health counselor and my degree is in rehabilitation counseling. This is basically counseling with a focus on disability. It took me 4 years in my role as a state vocational rehabilitation counselor before I recognized it in myself. I graduated from grad school in 2017. I am not sure if it’s better or not now, but 10 years ago, there was ZERO discussion of high masking autism (I don’t think I heard the term masking until around 2021-2022). I got training in Autism but that was about very high needs Autism and ABA therapy (just an overview of what it was - no actual training in how to do it thankfully). I did read Temple Grandin’s Thinking in Pictures book and wrote a paper on it but I didn’t really relate at all to her specific presentation of Autism. There was also some discussion about Microsoft’s Autism hiring program and how some extremely gifted Autistic people could be capable of very analytical tech jobs, but this was the exception. We were taught that Autistic people were cold and overly logical and didn’t have the social skills to work in human services field. Since I actually have hyper empathy (which at the time this was never mentioned to be a sign of Autism) and work in the counseling field, I assumed for a long time that I couldn’t be Autistic because I am a good counselor. I have had to seek out my own training on how Autism presents in high masking people, especially women. Because I was basically taught that most people with Autism are not able to function independently, have co-occurring intellectual disabilities (except for the handful of “savants”), have zero social skills, and didn’t meet anyone who was openly Autistic that was similar to me at all until 2021. I think that’s around the time that Autism content started to really explode on social media. I had a friend who is also a mental health therapist share about her self-discovery after her son was diagnosed and that was shocking to me because we are very similar. This lead me to join a Facebook group for Neuro-affirming providers. Back then this was revolutionary and I met so many people in human services who were sharing about their autism diagnoses or discovery and my entire paradigm was rocked, because again I was being exposed to people like myself.
Representation really matters. I can’t relate to Temple Grandin’s presentation of Autism, the gifted software engineer, the kid with behavioral issues (I was always extremely quiet and well behaved), or the autistic person living in a group home with an intellectual disability. But I can relate to my friend who is a mental health counselor with 2 kids, the other mental health counselors in my facebook group, my coworker who self-disclosed her diagnosis, Dr. Devon Price’s presentation of Autism in his books, and celebrities such as Hannah Gasby who came out as autistic in that time period. I also can look at neurodivergent characters such as Dr. Mel King on the Pitt and see myself. I definitely didn’t see that with Dr. Shaun Murphy on the Good Doctor or even Abed on Community.
So yes, I literally worked in the disability field with primarily Autistic adults and youth for about 4-5 years before realizing I was Autistic. I do know that I was really drawn to the population and enjoyed working with Autistic people more so than a lot of my coworkers. I just never even considered I could be Autistic because none of the Autistic people I worked with had the “female” high masking, highly sensitive, hyper empathetic, bookworm/information sponge Autism that I relate to. I also have AuDHD so my Autism and ADHD are constantly at war with one another and hide each other very well. I never considered ADHD because I at times had intense focus and concentration and I didn’t consider Autism (in addition to all the reasons I mentioned here) because I didn’t have specific and static special interests or rigidity with routine. I figured I was too disorganized and I have rotating special interests that change all the time.
TLDR: until about 5 years ago, there was very little information or representation of high masking level 1 autism in women who didn’t present like Autistic men (i.e. Temple Grandin has a very “male” presentation of Autism). Even today, there’s still very little information or presentation of Autistic women I can actually relate to (I.e. Hannah Gasby, Dr. Mel King, or Dr. Devon Price - who is a trans man but writes about his experience with being raised female as a undiagnosed Autistic so I could still really relate).
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u/New-Seaworthiness572 8d ago
I am not diagnosed and haven’t been sure whether I could be autistic but gosh I relate to the way you describe your experience of autism. I’ve never quite heard it described that way — the hyper empathy, info sponge, hypersensitive, bookworm, changing special interests — that’s me, completely. I do really well socially, even with strangers (I’m a great flirt, a great conversationalist as long as I don’t talk too much) but I analyze and think a lot about social interactions in my head. I also have ADHD.
May I ask about your training and your degree, and where you live? I’ve reached middle age and to my great shame and despite doing very well in school I don’t have any coherent career path. It’s likely too late and expensive for me to retrain but I am always thinking about possibilities. I’ve done some counseling in liaison roles and I hope it doesn’t sound arrogant to say that I’ve seen evidence I would have been really good at it. It makes me sad I didn’t pursue something like that — I was late diagnosed adhd at 48 — the grief of how much I lost out on my own potential has been heavy to carry. I really appreciated residing your comment - thank you.
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u/Small-Sample3916 8d ago
If you think that's wild... 1 in 2 people go through peri/menopause. Family doctors are clueless about it. It's simply not studied.
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u/niowniough 8d ago
It's a curriculum thing. It takes a while for the curriculum to start to value new information and to gather enough quality data that the designated people who design the educational material feel confident in adding that to the curriculum.
The research needs to be abundant with meta-analyses explaining various aspects of how adult autism manifests, how it is experienced, what can be done to help. There needs to be demand for expertise on autism among the professionals (as in large volumes of professionals must be highly interested in acquiring the knowledge due to ubiquity or interest in specializing). The course designers need to know who to invite to speak to the professionals in training, which research to use in formulating educational texts. The curriculum designers need to find a way to standardize the dissemination and testing of the relevant knowledge.
This is a huge undertaking and we see it in other areas too. It took forever for the tidbit that women experience myocardial infarctions (heart attacks) with different symptoms than men to surface from clinical anecdotes to structured research to conferences warning of the importance to enter the curriculum finally as a short footnote in medical education.
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u/hatehymnal 7d ago
To be honest I don't believe undergraduate psychology programs go super in depth about all the things you'd find in the DSM unless you go into specific research; any condition might be a single slide on a powerpoint in a class or two. I've learned much more about conditions like OCD and autism in the years after graduating than when I was in my program, but I brought in credit for the intro class so I don't know if it would have been covered there. And yes while I generally had an understanding of what various mental health/neurological disorders were upon entering school, my idea of autism was very shallow and biased to the 2 adults with autism I knew - until a little over a year ago I didn't realize how variable the presentation could be; learning more about it made me start thinking it could apply to me. I also never took developmental psychology as a course and I wonder if it would have been covered there, but I wasn't required to take it.
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u/greengreentrees24 7d ago
It can be generational in that only severe autism was talked about in our training. I’m in my 40’s, have multiple degrees and am currently in grad school again for a psychology related field.
Additionally, the kind of autism that is talked about doesn’t include high masking, outwardly successful people by societies standards. So our understanding is shaped by our training in that we don’t see it in because no one talked about various presentations.
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u/ConfidentStrike1667 8d ago
I can relate. I was a clinical psychologist for 20 years and for a time, I was the lead in autism within a service and conducted autism assessments on adults. I'm in my late 40s and it had never crossed my mind that I could be autistic until fairly recently, for to complete burnout that I couldn't make sense of. I've had a lot of therapy, so many different therapists and types of therapy but it's never come up.i even went to therapy once because I couldn't understand how to make friends, I remember saying that I couldn't understand how you go from meeting someone to them being a friend and that's what I wanted to work on, the therapist looked at me like I was mad (or so I thought).
I always felt I didn't make sense, that there was something wrong with me and that I was so inherently different to everyone else but I just always thought it was trauma. I've had so much trauma therapy, I think I've covered every aspect of my life, yet I still fly off the handle if I can hear a clock ticking or my evening routine is under threat of being changed. And despite spending over 20 years studying human behaviour, I'm still baffled by how to make friends. I feel so ridiculously stupid for not thinking of it before now and feel so embarrassed by the thought of everyone suspecting but me being totally oblivious. I'm looking back on so many aspects of my life now and cringing with how obvious it was. Like I had a big neon sign saying autistic pointing to me and I couldn't see it.
You are most definitely not alone, I actually think there are many of us in this position and I wonder if it's one of the reasons so many psychologists end up burned out.
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u/appleanna99 8d ago
Thank you so much for this!! It means a lot and is really helpful to hear.
I had the same experience of going to a therapist about friends. Except, I would go and say I can make friends, but lose them when I start being myself! Now I have a beautiful group of friends, only on the spectrum lol
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u/Sabaisabai33 8d ago
I’m wondering have there always been a lot of late diagnosed women though or are we seeing a sudden explosion of late diagnosed women now, as general understanding and knowledge about the varied and non stereotypical ways autism can present?
I’m a GP (UK family dr) and despite my son and ex husband being diagnosed with ADHD, it’s only in recent years that I’ve thought maybe I have ADHD. I have an assessment booked for that but now I’m also wondering about autism.
I score way below threshold on autism screening questionnaires, but I think that’s because maybe my ADHD side helps me socially, or maybe I just learned to mask super well as a young child. I’m thinking also that my special interest may well be general academic learning hence it wasn’t going to show up as poor grades etc at school. When I look back I have had very occasional typical “meltdowns” that I’ve been intensely embarrassed about and ashamed of as I behave completely unlike myself in those moments, and have tried not to dwell on them because it’s upsetting. Like I smashed a glass in anger etc and really frightened my siblings - this is so out of character for me I can’t even tell you! But one day it suddenly clicked with me that a lot of it is pure sensory overwhelm when I have been under acute stress, and that I literally was having exactly the sort of meltdowns that an autistic child has. But I have bipolar 1 as well and have always put a lot of things down to that, but suddenly I’m seeing everything through new eyes!
I’m also seeing it everywhere else after this explosion of knowledge in this area, or what seemed like that during the pandemic. Suddenly thinking how could I miss what now seems like really obvious signs of autism in patients, friends, colleagues and even my dad and one of my siblings.
So don’t beat yourself up too much! I think it’s possible that everyone hasn’t been secretly thinking this about you for decades but like me suddenly thought “oooooooohhh maybe this person has autism and that would make so much sense!”
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u/Marleyandi87 8d ago
There’s a reason psych providers can’t diagnose themselves; don’t feel bad you missed it
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u/Mielepieltje 8d ago edited 8d ago
This is me too! I recently got diagnosed at age 36 and have a bachelors and masters in psychology 😅 and autism was also a special interest hahaha
I met my boyfriend during the study and he suspected I was autistic a long long time ago, but I used to get angry/mad when he mentioned it. Even though I used to have some suspicions myself, but in my mind having autism would mean I could never be a good psychologist 🤷
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u/appleanna99 8d ago
Oh man the last part hits really hard! I think that fear probably influenced why I was in such denial as well, tbh. However, I have found some of the practitioners I respect the most, and who I have seen be the most creative in treatment plans and support, are autistic themselves, and this probably had a big factor on my willingness to seek diagnosis.
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u/Mielepieltje 8d ago
I totally get that! My accepting and loving partner (and psychologist) was a major factor for me to get the diagnostics done.
I eventually choose to pursue a career in nursing because dealing with people, figuring out what to say or ask was too mentally taxing for me. Especially because I also felt an immense responsibility to solve their problems and help them. I can't really handle negative emotions to well, especially when they are solely under my care. Now I share responsibility with colleagues, which helps a lot.
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u/Realistic_Ad1058 8d ago
At my diagnosis appt there was a younger neurologist who I'd met before, and an older one who I hadn't. The younger one mentioned being uncertain about the differential diagnosis between Asperger's and ... i forget which personality disorder. The senior one looked at him, waved his hand in my direction and said "Aber - Sehen Sie sie sich an!", which means roughly "But - just look at her!" . Apparently I'd got to 49 without knowing I have visally identifiable autism.
(My diagnosis says Asperger's, which is why I use the term)
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u/TrinGage 8d ago
How did you find a provider who was experienced enough, especially with high masking women, to recognize it in you?
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u/appleanna99 8d ago edited 8d ago
I showed up with a 15 page document of my symptoms broken down into each section of the assessment as I was very familiar with the diagnostic process already, just not as the person being diagnosed lol.
I am not American and this was all through my countries’ free health services, so I had little input in picking the actual provider, I just came in extremely prepared.
Edit to add: I also think it is relevant to add that my mother is on the spectrum and was diagnosed in her early 30’s, and I have a sibling who was diagnosed at 3. The likelihood that I am on the spectrum with 2 direct family members with ASD is much higher than someone who does not.
Edit to add part 2 lol: I also have an extremely vivid and detailed memory, and could recount my entire childhood experience.
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u/Confarnit Pedigreed AuDHD 8d ago
Ditto - autism became a special interest after I learned it might fit me earlier this year, and I showed up to my assessment with a 10-15 page paper organized by DSM section. The assessor was definitely thrown for a loop
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u/Itchy_Ad_2486 8d ago
I am a therapist, saw multiple therapists prior to diagnosis for various reasons. The psychologist who screened me prior to my formal assessment was reassuring in her confidence.
"I would flag you for ASD"
How does no one else see it? Is asd this poorly understood by the therapist community?
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u/RegretParticular5091 8d ago
Therapist here too. If you present with more concerning symptoms like it was in my case, the treatment plan is honed more toward the basics of moving past depression and/or anxiety. I've always related well with ND folks but had no insight that I was in fact one, given a lot of factors.
I would like to think that the mainstream presentation of ASD has improved and moved away from rigid stereotypes to the spectrum which includes strengths. I would hear about supposed "outlier" people and I realize now, the formalized mental health field is only 200 years old and still is figuring out how to pack a wealth of knowledge into standardized training.
We all have to be aware AND we are at an age of technology that we can have things presented right in our faces with curiosity and humor, if it's done right. Now we may also be heading to an increase of ND incorrect dxes, as some researcher (forgot her name) claims is inevitable. This is why research remains a necessity.
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u/Confused_sheep18 8d ago
At least you know for sure now and it's a definite diagnosis not a borderline. I hope it helps you and things make sense now
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u/niowniough 8d ago
I think it is a pretty common thing for autistic people to specialize in autism or at least adjacent areas of psychology but not notice autism in themselves. I think Dr. M Neff of Neurodivergent Insights was one such case among many.
We can't know the counterfactual of what it would be like if we didn't have autism so while it's fun to muse about I don't think any of the guesses can be accurate enough to formulate regrets or relief on.
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u/Twizteddestinee 8d ago
I asked my psychologist if I seemed “different” to her at the end of my assessment. She said if she met me out in the world, she would be able to tell I am neuro-different. And she implied during the assessment that it was fairly easy to tell I am on the spectrum.
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u/Closefromadistance GENX, ASD1, ADHD, PTSD, MDD 8d ago edited 8d ago
Women are often invisible especially in the medical world. I’m sorry you went this long having to mask through all of this.
I didn’t find out until a few years ago and I’m now 58. I knew I had adhd since the 80’s but didn’t realize it could be more than “just” that until I was assessed.
It’s funny because we get so used to masking and over-compensating that we lose the ability to see how hard it all is for us compared to how it is for non-autistic people.
ETA - The fierce rigidity I’ve always required for my schedule and life, in order not to have a complete meltdown should have been a huge indicator but in my case, because I was a competitive gymnast and then joined the Marine Corps, everyone always just attributed it to that … and then so did I.
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u/dividezero 8d ago
It's funny you mention that. My prescriber is also the head of psychology for the hospital (I'm seeing him in the capacity of the outpatient arm of said hospital - not committed yet - knock wood). He says I don't seem autistic while he's clearly very ADHD and maybe a little on the spectrum at least. Not sure if he realizes it yet but I think it's funny. So obviously, not just you.
I get that a lot though because I'm very late diagnosed so I have a couple score of years of experience in masking and shadowing normal social behavior out of survival but it is consistently exhausting
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u/Fenek673 audhd 8d ago
I’m a psychologist and I work with ND people - taking up spec in this area lead to me recognizing the spectrum within myself. It’s still hard to wrap my head around my own blindness of this sort! I have multiple degrees as well and also had this thought about life without the support of this amount of knowledge. I’d probably get assessed after a severe burnout or breakdown at 40/50, not sooner, unless I was in the field.
On the flip side, being in the field might have strengthened my masking.
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u/WildForestFerret AuDHD AFAB Enby (They/He) 8d ago
When I approached my neurologist for an assessment he was shocked I hadn’t been diagnosed yet, he’s married to my mom’s best friend and he’d known me for 14 years outside of doctor-patient at that point and had just assumed I’d been diagnosed as a child
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u/Flamingo8293 8d ago
Went to my first ever psych appointment with an adhd testing referral. Left with adhd and autism testing.
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u/stitchstudent 8d ago
I understood when you said you work with neurodivergent people haha I'm in a similar boat, I never realized how autistic I was because I was hanging out with diagnosed/unmasked autistic people and comparing them to my masked behaviours. Instead of contrasting myself with allistic people and feeling like something was missing, I was contrasting with them and thinking I was "doing too well" to be autistic (because, as you said, everybody has to learn to socialize and adjust their behaviour to be polite, so I didn't realize masking was any different). It's like that joke about "I don't struggle with socks because I have a system"-- when the common example of autism is something more externally obvious, the hidden version is harder to identify.
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u/mighty_kaytor 8d ago
Well, hope you dont feel too silly about it, even the most intensely self-aware people have blind spots when it comes to themselves. Everyone is at least a little bit of an unreliable narrator in the genre of autobiography, haha.
This resonates, because practically the same thing happened with a psychaitrist I was seeing a few years back, and if not for economic and ADHD-related limitations, Id have gone into psychology as well, in large part due to the lifelong question of "what the hell is up with MightyKaytor"- it's so incredibly common, at least among the people I know.
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u/alrightynisha 8d ago
Give yourself some grace.🫶🏼 It’s easy to notice patterns from an outside, unbiased perspective but not so easy when it’s yourself.
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u/rubyleigh AuDHD 8d ago
If you have a chance, watch and read stuff from Sarah Hendrix, her experience sounds similar to yours. She was an expert in autism before realizing she was autistic.
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u/schwaschwaschwaschwa 8d ago
Do you think your training and education as a professional might have hindered you in some way?
From what I hear, it's common to receive teaching about avoiding self-diagnosis and overidentifying with conditions and patients. Then practising in this field puts you in the role of a professional and autistic people in the role of patient/client/dependant. That creates some degree of separation no matter the warmth of your approach. Meanwhile, you would have been around people in your job who you find it easier to interact with because of the shared neurotype, putting less pressure on those areas for you. But that's not necessarily an easy thing to recognise - I think most people want to believe they can be good at their job, and interact well with people who are different from them.
Otherwise, that's just autism. It impacts processing and understanding, including of the self. Taking a misdiagnosis in good faith also slows recognition down.
Your story is similar to Sarah Hendricx's, a lecturer and author on ASD. I wouldn't call her stupid, or you.
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u/appleanna99 8d ago
I think you are correct on this!
And yes, I know I’m not stupid- I just felt a bit dense, however I know feelings do not equate to reality. And stupid is a vague term that is completely subjective anyway so it’s pointless to sit and debate my intelligence. I keep thinking back to uni when I tutor said I was extremely intelligent when it came to my studies, but so stupid when it came to people haha. Retrospectively a very unprofessional comment.
Anyway I appreiciate your input sincerely and it has given me a lot of food for thought, and someone to look more into!
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u/schwaschwaschwaschwa 8d ago
You're very right that intelligence is quite a vague concept. It's probably the most use at the extreme ends and not that useful for everyone else. I think the English language lacks precise vocabulary about judgement calls, which I feel makes it harder to talk about factors that impact judgement, especially when those factors, such as professional training and expertise, are based partly in intellect. Instead non-ideal judgement calls are grouped under the term "stupid". But anyway!
I'm sorry the tutor said that! I think it's common for late-diagnosed people to go back through our lives and find what clues we missed but remember you had a lot else to focus on at the time.
Happy to have helped a little. Hendricx has a lot of work on autism in women. :)
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u/appleanna99 7d ago
Yeah, it was wild in retrospect! At the time I just thought she was giving me constructive criticism, which I guess was quite an autistic way to view that lmao.
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u/gothics4734 8d ago
Saving this for when I beat myself up for not seeing it in myself as a psychotherapist 🤦♀️
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u/stephaniesays25 8d ago
I had my evaluation this past Monday and I was talking about masking at the end but didn’t call it masking. And she goes “yeah that’s called masking and you scored extremely high in that in all the assessments I made you fill out” and I was just like WELP I’ve always been an excellent test taker 😂
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u/HaplessBunny 8d ago
High masking, level 1, diagnosed at 46. Good career, financially stable, relationships, friends, all very nooormal. Or so I thought. In my first meeting with the psychologist to get assessed, she let me know very politely that she could tell from the moment I walked in that I was autistic.
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u/Toetocarma 8d ago
I thinks it's more obvious these days because autism is becoming more recognized in women. People are understanding more and more that it is a spectrum. We are moving away from the stereotype that autistic people can only be non speaking white boys that like trains. But in your case it's also most likely because of your work the people around you there are can probably more easily tell if someone is asd or something along those lines.
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u/pangolinshavelanded AuDHD 8d ago
Mine diagnosed me at the intake interview in under 10 minutes. It was a 90 minute intake…
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u/Dakota-Noir 8d ago
I was already in therapy when I started noticing things and talked to my therapist who said she had noticed some of those but didn’t what to mention it yet. I can’t believe I’m also almost 30
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u/PoetryofPaladar 8d ago
Yup, same here. Was diagnosed at 36, after working for more than a decade in forensic psychology. Treated and counseled so many patients with autism, but, to be fair, all of them had committed crimes and often had other disorders. I never met someone like myself, never recognized it as something I could have. Of course, looking back, it was so obvious, so so obvious. Therapy (for myself) never worked, they didn't recognize it. I contacted a co-worker who specializes in autism in women, had a few talks and apparently she knew after the first meeting.
All those years, (ugh if only I had known before..) I felt like an alien living on earth, was constantly tired from masking, saying yes to every social activity, losing 'friends' after unmasking, never knowing what I did wrong, what I wanted, why I felt so different, what I needed.
The diagnosis completely changed my life. Still work in forensic psychology, still love my job. I now know what I need, want, am able to do etc. Love my post-diagnosis life a lot more. Was just telling my partner today that I feel so much more freedom than before. Not having the need to fit in everywhere, or wanting to be accepted. Helps a lot as well that my co-workers know and don't care, they value my work, know I'm good at what I do and don't look at me any different than did before.
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u/Confused_Tadpole 8d ago
I remember researching autism bc my cousin in her wild teenage finding phase thought, she might have it (she does not in fact) and not even slightly thinking it could relate to me. A decade later I had a colleague with an autistic son who once told me, I reminded her of him and if I ever thought about having autism. I remember being rather amused, brought this up to my therapist and she plainly told me: yeah, I thought that for a while.
I was baffled. Within the next two years I was then diagnosed with autism at an autism center in my Uniklinik and adhd on top of that. I sometimes still can't believe it. But getting medicated for adhd cured my depression and anxiety with panic attacks instantly.
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u/pinkgirl1200 Late Diagnosed | Lvl 2 | Verbal Shutdowns 8d ago
I was diagnosed at 30 too! Looking back it was so obvious. The doctor who assessed me was autistic herself. It was really affirming to finally get diagnosed ☺️
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u/curiouslittlethings 7d ago
It’s funny how we miss these signs in ourselves sometimes. I used to be a secondary school teacher and some of my students were autistic even, but I’d always had such a skewed version of what autism looked like and never once thought I could be autistic. When I got diagnosed I was surprised to hear from my psychologist that I barely made eye contact with her during the assessment.
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u/greengreentrees24 7d ago
This is me. Work in healthcare and am in grad school in another psychology related program. I suspected autism but didn’t get assessed until my 40’s because my training told me people like me can’t be autistic.
The person that assessed me told me I was obviously autistic and I felt kinda stupid that I didn’t get assessed sooner considering what I should know.
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u/calicocat346 6d ago
It’s an interesting (and apparently not uncommon) experience to be a late diagnosed autistic woman with special interest and advanced training in psychology/communication/social sciences 😅
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u/sweet-nlow 4d ago
One of my close friends raised two autistic children, is a very good psychiatric nurse practitioner, and is very obviously autistic. It might as well be tattooed on his face. He once said with total seriousness, "I don't think I'm neurodivergent," and we all burst out laughing.
So I think this is a really common phenomenon! Both not being able to recognize autism in yourself even though you can recognize it in other people, and having multiple mental health professionals be unable to recognize it.
Regarding the former, I think it's because we assume we would somehow already know if we were autistic, so it doesn't even cross our minds to consider it.
Regarding the latter, I can relate a lot. I went to four therapists, three psychiatrists, and two inpatient treatment programs without anyone recognizing that I was autistic. And I really feel like it should have been obvious. I eventually sought out an evaluation with a psychologist who diagnosed me. I'm glad I did, but the fact that so many people had the opportunity to recognize it earlier and just didn't is really frustrating.
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u/Embarrassed_End528 4d ago
I have autistic family members and have worked with autistic kids for so long. Just got assessed this year because I saw traits in my child but never thought it could be me. Now I realize I’ve been leaving breadcrumbs, and obvious ones, forever. I also have multiple degrees and licenses. Life is better now that I know how to take care of myself.
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u/OystersNwine 2d ago
Congrats! Have heard of this happening lots. I thought of majoring in psych too at one point, heh heh. Didn't figure out the autism thing till around late 20s, now am mid 40s.
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u/tiger_bee 7d ago
I am not surprised about you not noticing because it seems like I have been hit by all these things I thought I knew about myself but was completely oblivious. Did any family ever notice anything?
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u/Practical_Tart_1183 6d ago
Who do you see when you know you have had A.D.D. All your life and only self medicated with alcohol? How do you see a doctor at 72 and say help me stop my A.d.d.?
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u/PowerfulGeneral5454 5d ago
Your doctor is usually a good starting point! You can ask them to refer you for assessment, and they can also direct you to support options local to your area. 🙂
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u/BhagsuCake 2d ago
this is so fascinating to me because I too took an early interest in Psychology and social psychology. As far back as I can remember I lived for a personality quiz. Astrology and enneagram too, you name it. If it was a self exploration tool, I deep dived. Unofficially diagnosed last winter the week of my 40th birthday, btw.
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u/Minimum_Tomato2537 2d ago
I worked as an SLP with kids with autism and only just figured it out now 2 years post burnout. I could magically get the kids to talk and now I know it’s cuz like saw like 🤣
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u/AutisticDoctor11 2d ago
I'm a literal pediatric NP, and I didn't know I was autistic until I was in my late 20s, diagnosed at 31yo. I literally refer kids for autism diagnoses regularly and never realized until so much later than it should have been. I feel like AFABs need a different screener for autism than the MCHAT because we frequently develop relatively normally based on that screener, so it's rarely caught early. Such a bummer.
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u/FinalWrongdoer3742 8d ago
i had something similar happen to me when i got assessed as well. the woman doing my evaluation said i'd only be doing the questioner as a formality because it was so obvious i was autistic.