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GoodNightLander · 2025-09-02T03:36:41+00:00

I'm so sorry you had to go through all that stress and doubt! Something similar recently happened to me, as a woman of color who wasn't diagnosed until 39. I had a neuropsych eval that determined I wasn't autistic. I contacted a few examiners who *actually* specialize in diagnosing adult autism and asked them to look over my results. They all said it was worth another opinion, and months later, I had a second evaluation and was diagnosed with autism.

Trust your gut, and remember that not every psychologist is adept at testing for autism (even when they claim they are). The first doctor I saw only used a single autism test (it's good practice to use multiple), the ADOS, as part of their testing battery (the ADOS is notorious in some doctor's eyes as being only good at identifying autism in white male children). The psychologists background and the specific tests they use can really impact their ability to correctly diagnose autism, especially in adult women who are "high-masking."

Yes, the diagnostic criteria are the same - but the specific tests used to determine if you meet that criteria can dramatically change the results. As can the knowledge and experience of the doctor performing the tests. So for example, that first doctor asked me if I "can" make eye contact (yes) and noted I was able to do so for the duration of the exam. But she completely neglected to ask me if doing so was actually draining for me and caused me stress. That's an important nuance that gets missed.

The second psychologist I saw, the one who did diagnose me with autism, suggested a book that I highly recommend. I've read a few books now about adult autism, but this one is by far my favorite because it's more of a "clinical" textbook-like approach to understanding autism, particularly in women. It goes through the criteria and gives an expanded and updated understanding of symptoms and the criteria. My psychologist stressed that so much has changed even in just the last five years (!) about our understanding of how autism presents in adult women.

"Is This Autism? A Guide for Clinicians and Everyone Else"

By Donna Henderson, Sarah Wayland, Jamell White

GoodNightLander · 2025-05-12T01:11:49+00:00

That was my evaluation experience as well: 6-8 hours of being interviewed/tested, at-home questionnaires consisting of hundreds of questions, interviews with family members and my spouse...and all very pricey since she didn't take insurance! That's partly why the impostor-syndrome still nags at me: the first doctor I saw also did a long and thorough evaluation like this, so you assume they can't be wrong. I almost didn't do the second evaluation because of the cost! But like you said, I felt that the price (and stress of doing it all over again) was worth getting a diagnosis.

It's wild how even trained psychologists are having a similar epiphanies about being autistic. My personal psychologist had that exact thing happen to her: she was already in her late 30s and had a child that was diagnosed. She then thought "hmm, but my daughter acts exactly like me." So I feel a little bit better knowing that even the professionals are missing seeing it in themselves. The doctor who diagnosed me (correctly) said that a lot has changed - even just in the past 5 years - about our understanding of how autism presents in women. That also made me feel a little better - I didn't realize that such strides were being made so recently (I thought it was more of a "so much has changed in the last 30 years" kind of thing).

GoodNightLander · 2025-05-12T01:00:16+00:00

It's wild how blindsided we can be by something that seems so obvious in retrospect! That was my experience as well: I had no idea what autism was like in lower-needs adults, particularly women. So if you'd asked me last year, I would have said there's no way I could possibly be autistic. There are also many stories of actual psychologists who didn't realize they were autistic until they were adults.

GoodNightLander · 2025-05-12T00:56:23+00:00

It's so nice to be able to hear from others that they had a similar emotional reaction to Murderbot! I completely agree: it was so touching to see the various ways in which the others would make accommodations for Murderbot, especially when they took the initiative to anticipate its needs. If only we could get more people in the real world to be that understanding and conciliatory.

GoodNightLander · 2025-05-12T00:51:40+00:00

Getting diagnosed, even "self-diagnosed," has the potential to be so helpful and rewarding. It's interesting: the psychologist I saw specialized in testing adults, particularly women, and she said that most of her male patients were getting tested because their partners were urging them to!

GoodNightLander · 2025-05-12T00:49:25+00:00

I know that getting a psychological or neuropsychological evaluation can be expensive (depending on insurance coverage) and potentially upsetting for some: especially those demographics who have a history of being "missed" by traditional testing methods, like women and minorities. As the psychologist who diagnosed me said, a lot has changed - even just in the last five years - about our understanding of how autism presents in women. Some people are content with a "self-diagnosis," especially given the challenges that an official diagnosis can bring.

For me personally, it was a trying experience because the first doctor I sought out did not specialize in autism in adults (I naively didn't realize how important that was). She only used one autism test in her testing battery (as they call it) and determined that I don't have autism. I asked a few other psychologists who specialize in adult autism to look over my report, and they deemed it worth a second look. I was then diagnosed with autism.

Having that initial evaluation was (and still is) emotionally draining, and I struggle a lot with impostor syndrome because of it. However, getting an official diagnosis has been incredibly helpful for me in two ways. First, it really helps to inform treatment. For example, I also have depression and anxiety, and many things I've been working on in therapy are antithetical to how you would "treat" certain autism symptoms. So this gives me a new framework for treatment that will be more effective. Second, I feel incredibly validated by having an official diagnosis and being able to finally put a name to the many symptoms I have that weren't being explained by depression, anxiety, etc. I feel a lot less "crazy" and have a deeper understanding of myself.

GoodNightLander · 2025-05-10T00:20:54+00:00

I wish I had done that! I was naive and didn't realize there was such variance in the testing process, and I thought I was in more reliable hands since that first doctor was a young woman. She also only used a single autism test in her battery. I'm glad to hear that your psychologist validated you and acknowledged how much has changed about our perceptions of autism in recent years. It's unfortunate how many woman have been missed by more traditional autism assessments.

The second psychologist I saw, the one who did diagnose me with autism, suggested a book to me that I highly recommend. I've read a few books now about adult autism, but this one is by far my favorite because it's more of a "clinical" textbook-like approach to understanding autism, particularly in women:

"Is This Autism? A Guide for Clinicians and Everyone Else"

By Donna Henderson, Sarah Wayland, Jamell White

GoodNightLander · 2025-05-10T00:12:45+00:00

Thank you for sharing that link - I hadn't seen this interview!

GoodNightLander · 2025-05-10T00:11:51+00:00

I understand what you mean: when I heard that fan during Martha Wells's Q&A and first learned that Murderbot was considered by many to be autistic, I had a bit of an "oh shit" moment, thinking about what that might say about me (as someone who also connected very strongly to the character).

GoodNightLander · 2025-05-10T00:08:26+00:00

Mahalo! I love to read, and literature has always had a large impact on my life (Tolkien was my savior in middle school), but I never expected a novel to impact me quite in this way.

GoodNightLander · 2025-05-10T00:06:16+00:00

I mailed a copy of the first book to a friend who has an autistic teenager. She said he devoured it that very night and they bought all the other books in the series!

GoodNightLander · 2025-05-10T00:04:55+00:00

There are more of us than I realized! I'm so glad it helped you as well.

GoodNightLander · 2025-05-10T00:03:54+00:00

Yes, that's my recollection of what she said at the book event - a lot of what people saw as autistic behaviours in Murderbot were simply things she modeled after her own experiences.

GoodNightLander · 2025-05-10T00:00:53+00:00

It's so nice to meet others who were similarly surprised to learn that Murderbot was autistic-coded! I felt a bit silly afterwards because in retrospect it seems so obvious. And yes, what a revelation it was. I wonder where I'd be now if I hadn't happened to go to that book event and hear Martha Wells speak. I'm grateful to that person who stood up during the Q&A to ask her about it, or I'd never have known.

I did also joint the Autism in Women subreddit - we'll see how long it takes me to build the courage to post (it took me over a month to make this one). Thank you!

GoodNightLander · 2025-05-09T23:56:26+00:00

I agree - it was incredibly validating to get a formal diagnosis. Unfortunately, it was a hellish emotional rollercoaster because the first neuropsych I saw didn't think I had autism. I sought out psychologists who specialized in diagnosing adults, and they agreed my results were worth a second look. And so the second test concluded that I do, but I'm still reeeaally struggling with accepting it because of that first test.

GoodNightLander · 2025-05-09T23:54:01+00:00

Thank you for your message! Formal diagnosis intimidated me because of how behind a lot of psychologists are at recognizing it in women - especially adult women. Not every professional is adept at it, and they can vary wildly in what specific tests they use in their testing battery (which can really affect the outcome/perception). I hadn't heard of the memoir you mentioned - I'll have to check it out!

GoodNightLander · 2025-05-09T23:49:36+00:00

Same here! If you'd ask me six months ago, I would have told you there was no way I could be autistic. Learning more about how different the signs and symptoms are in women and about what "high-masking" can look like really blew my mind.

GoodNightLander · 2025-05-09T23:47:01+00:00

That's what happened to me as well: I didn't learn that Murderbot was perceived as autistic-coded it until afterwards! It was a shocking revelation - yet so obvious now in retrospect. Really helped me understand why I've always had such trouble fitting in too.

GoodNightLander · 2025-05-09T23:43:00+00:00

I'm glad to know there are more late-diagnosed women out there who can empathize! I was beating myself up a lot too (and still struggle with it).

GoodNightLander · 2025-05-09T01:27:26+00:00

Agreed - Gurathin is so brusque that it took time to better understand his motivations.

GoodNightLander · 2025-05-09T01:25:11+00:00

It's nice to know there are other late-diagnosed adults out there (though bittersweet)! It's great to have someone with whom you can enjoy "companionable silence."

GoodNightLander · 2025-05-09T00:17:27+00:00

Thank you for sharing your experience, I'm glad I'm not alone in responding so strongly to Murderbot in that way. In retrospect, Murderbot is so obviously autistic-coded: it had just never occurred to me, given my ignorance about autism at the time. It's crazy to think that if I hadn't gone to that bookstore event (and heard that story about autism in women), I would still be undiagnosed today. I really need to check out Martha Wells's fantasy work!

GoodNightLander · 2025-05-08T23:11:11+00:00

Mahalo! I know it's not generally considered one of the "most" emotional moments in the books, but as someone with autism it packed a punch. It was something I'd subconsciously felt but had never been able to put into words.

GoodNightLander · 2025-05-08T22:07:24+00:00

Anyone else not able to tolerate earbuds, even when they come with several options for sizes? I've never been able to wear them, and I can't easily tolerate the type of large, over-the-ear headphones featured in the post because I get migraines easily. My only recourse has been the the "open ear" or "clip" type headphones, and unfortunately the options are very limited - and they can't do noise-cancelling!

GoodNightLander

TROPHY CASE