How are adults (especially women) diagnosed with autism?
October 14, 2021 7:24 AM   Subscribe

I sometimes consider getting a formal screening for autism. I am a 58-year-old woman. I am curious about the process (like who asked what kind of questions of whom, and how long it takes, and how you felt about the process and the result, especially if you are a woman, etc.).

Please, no speculation. I prefer first-hand experience. Second-hand knowledge is OK, if you tell me how you got the info.
posted by NotLost to Health & Fitness (10 answers total) 23 users marked this as a favorite
Best answer: Your location would be relevant to this question, if you don't mind sharing.

I know book recommendations aren't what you asked for, but if you're in the US, I'd strongly recommend picking up a copy of I Think I Might Be Autistic by Cynthia Kim, because it answers your question directly. It's a very slender book that goes into a lot of detail about the US diagnostic process (and the author's own experience of it).
posted by ManyLeggedCreature at 8:02 AM on October 14, 2021 [1 favorite]

Response by poster: Thanks. I am in the USA.
posted by NotLost at 8:21 AM on October 14, 2021

My friend (a woman and 35 in the US) just got officially diagnosed as part of looking for treatment for another mental health issue, in her case ADHD. In this case I believe the psychiatrist brought it up, but I have other friends who have brought it up directly in similar situations for symptoms like anxiety. I think it was around 2 months for the official diagnosis after that (maybe 2 dedicated sessions?) and she told me the diagnosis felt like a huge relief to her and was definitely worth pursuing
posted by JZig at 8:50 AM on October 14, 2021

Best answer: I'm maybe half-qualified to answer this question. I am transmasculine and for (science?) reasons, did a bunch of paper-and-pencil testing before I started testosterone, which included the autism quotient screener, which I "failed" spectacularly. When I met with the paper-and-pencil testing guy, he basically spent to whole time trying to persuade me to seek a diagnosis (he said something along the lines of "I'm pretty sure, but go talk to someone who does it for a living") and referred me to these people. I ended up not following through, but the first hurdle was figuring out if insurance would pay for testing. That organization would handle that part for you and I remember I got as far as giving them my insurance information but I don't remember the outcome (they either never got back to me or insurance would pay and I never set up the appointment--I know insurance/cost wasn't the issue). It has been a decade since then and I have occasionally thought about pursuing a "proper" diagnosis, but I haven't done so--as far as I've been able to determine, there isn't a lot of tangible benefit if you are a self-sufficient adult done with formal education, and the desire of "knowing" or however you want to describe the intangible benefit of diagnosis hasn't been strong enough for me to actually go and do the thing.

(One complication is that I did end up with an ADHD diagnosis out of the blue and since stimulants do seem to be working for me, there is some risk associated with rocking that boat. (Yes, yes, there's nothing preventing you from having both ADHD and austim--see JZig's friend--but do I have that much faith in doctors? Nope.) I have a friend in a similar situation for whom that is a dealbreaking concern, and it doesn't rise to that level for me, but it is one of those things lurking when I think about it.)
posted by hoyland at 9:14 AM on October 14, 2021

Best answer: I'm in the US, but I paid out of pocket for a non-clinical assessment with Sarah Hendrickx, an autistic woman in the UK. Since I sought self-knowledge not accommodations, I felt satisfied that Hendrickx's long experience doing diagnostic interviews would be sufficient to give me answers. And given the stigma of autism, the long history of underdiagnosis in adult women, and the likelihood of misdiagnosis by your average neurotypical clinician, it was important to me that I saw an expert who was themselves neurodivergent. Plus— I was freaked out! I was 95% certain already based on what I had read and heard from ND friends, and well. If it was true I wanted to hear it from my own people!

(I also recommend autistic therapist Dr. Natalie Engelbrecht. You can take some preliminary tests on her website and she runs a great blog about autism.)

It was actually a phenomenal experience. Hendrickx's team sent me a long questionnaire covering the full diagnostic criteria for autism: Language and Communication, Social Interaction, Flexibility of Thought, Sensory Differences, Additional Health, Intense Interests, Family History, and Early Development and Play. I wrote 20 pages of material and consulted family and friends about my childhood and teen years. It was emotionally fraught, I relived a lot of ugly memories. But I could feel a clarity emerging as I wrote. When I was ready, I sent her the survey and we booked a two and a half hour virtual appointment to discuss my answers in depth and tease out differential information. She watched me carefully over the screen to evaluate my mannerisms.

I felt safe with her, Hendrickx was warm and personable. At the end, when she told me I was autistic too, I felt a sense of relief. So much about my life made sense now. And if she was so amazing and skilled, worthy of admiration, certainly I could be? It's been eight months since my assessment and my new sense of self just keeps unfolding. I'm so grateful I got it done and so happy it was with her.
posted by lloquat at 9:17 AM on October 14, 2021 [15 favorites]

Best answer: Background on where this knowledge comes from: I used to be part of a research group that conducted diagnostics with adults, often women, for research purposes. A research autism diagnosis is often more in-depth than what you will see in clinical practice, mainly as a matter of time and expense. If you go for a clinical diagnosis you'd likely experience some subset of these things but not all. (My knowledge is a few years old now so it's also possible there is something new, I may not be up to speed on the full cutting edge here!)

I am also a woman and likely autistic according to my therapist, but I haven't been through this from the diagnostic side, so I can only tell you how I think I'd feel about it.

All of that said, here's what you would have experienced if you came through my research group:

- An initial fairly broad interview about your medical history, educational history and any problems you had in school, any diagnoses you might already have, any special concerns you have or reasons you're seeking diagnosis, that sort of thing. This could potentially be upsetting if it digs up unpleasant memories of e.g. bullying in school or difficulties with your family, problems you're having now, etc. Anyone doing this should be well trained in supporting you, giving you breaks or temporarily skipping over difficult topics, etc. This took about 20 minutes the way we did it, but it would really depend on the individual program.

- Some fairly brief, high-level screening type questionnaires. These aren't terribly difficult or invasive but you might find them kind of eyeroll-y. The Autism Spectrum Quotient wasn't one we did but it will give you the flavor of the thing and why you might find it annoying. They can lean pretty hard into stereotypes of an autistic person, and aren't necessarily great at capturing the kinds of masking that a woman who's made it to adulthood without a diagnosis may be very good at. This was maybe another half hour for us, but again, it would depend on what specific questionnaires your diagnostician uses.

- A 1-2 hour meeting/interview with a clinician or diagnostician that might be more or less structured. The structured version of this is called the ADOS (Autism Diagnostic Observation Schedule) and is a pretty rigidly structured series of interview questions, puzzles, etc. I'm more familar with the version for kids that leaned more heavily on games and puzzles, but I think for an adult it's more interview based. You'd be asked questions about things like your daily routines, what your friendships and relationships with your family or other close people in your life are like, any collections or special interests that you have, sensory things that are challenging for you. They might ask you to collaborate with them on something like solving a fairly simple puzzle. They'll be evaluating your answers but also how you interact with them as you give those answers, how you solve problems. Again, this shouldn't be particularly upsetting or invasive, but it can be boring or frustrating. You should be encouraged to ask for breaks as needed. In a clinical practice you might get a less structured version of an interview where the person might focus on asking you questions only directly related to the DSM criteria for autism, or might do a more free-form discussion with you than the specific questions/puzzles mandated by the ADOS.

- Ideally - and anyone doing diagnostics with adults with autism should know that this isn't always possible - a 1-2 hour interview with someone who knows you well now and someone who knew you well as a child. Ideally they would be the same person so that they can talk about your whole life, but in a pinch sometimes this can be two separate interviews, one about your childhood and one about your adulthood. I usually did these interviews with parents but I've done them with siblings, close friends, roommates, etc. The questions will cover a lot of the same ground but will be looking to get information about you from an outside perspective. What have people close to you observed about how your interact socially? How has that changed from when you were small? Are there things that were challenges for you as a child that you grew out of or learned to mask well, or things that have become challenges more recently? What was your early speech development like? Have they noticed any unusual level of clumsiness, problems that you might have with motor skills, etc.? Sensory issues? Special interests or collections? I've found that when doing these interviews about adults, they're usually a neutral-to-good experience; the interviewee often appreciates a chance to help their loved one and talk about this person they care about. Again, it was very common that there was no one around who had that kind of lifelong knowledge of the person we were diagnosing, and who the person being diagnosed felt comfortable asking to participate in that way. Don't worry if you don't have anyone you'd be comfortable involving in your diagnostic process. It's helpful but not necessary.

And that covers the diagnostic piece of it. If you've indicated specific issues that might be confounding your diagnosis (or if you're getting this diagnosis as part of a research program where they need additional information regardless) there could be additional sorts of neurocognitive testing - IQ tests or memory tests or language tests, etc., that might help give more information to clarify a particular issue or get a better full picture of your strengths and challenges. But that wouldn't be diagnostic, per se, so much as putting some additional context around the diagnostics.
posted by Stacey at 9:33 AM on October 14, 2021 [3 favorites]

Oh! Worth noting if you do an ADI ( the name of that long interview that I forgot to put in) or an ADOS: People who are qualified to do either of those tests go through intense training and part of that training is occasionally being observed to ensure they are still doing it the way you're supposed to and haven't drifted from the required methods over time. So it's possible someone could be observing that session, or that you could be asked to allow it to be audio- or video-recorded for later review by the trainer.

Not sure if that would bother you, but mentioning it for the sake of you not being surprised should that happen. It's possible that you could opt out of that or ask for the tapes to be destroyed afterwards; in our case we were recording for research purposes anyway so it was a requirement, I'm not sure what clinical practices do.
posted by Stacey at 9:45 AM on October 14, 2021

Just did my assessment this last couple weeks. PM me.
posted by matildaben at 5:33 PM on October 14, 2021

Response by poster: Thank you all the answers. They are all helpful. I appreciate the details and perspectives from all of you. It is good to hear about Hendrickx and Engelbrecht.
posted by NotLost at 4:28 PM on October 15, 2021

Best answer: Summary: I am a woman in the US. At the time I scheduled for an assessment, I thought it was possible I was autistic. The social worker who screened me concluded it was unlikely. I currently agree with the social worker's evaluation.

I went to the UCSF Center for ASD & NDDs in early 2020. At the time, they offered free clinical evaluations for young adults and children. I emailed them and asked to be put on the waitlist in 2019; the staff estimated it would take 6 months to get an appointment, but it ended up taking about a year.
Before my screening/intake appointment, I took an assessment, with both free-form and multiple choice sections. The questions were similar to that of other tests I had taken online -- e.g., it asked me about special interests, sensory issues, routine, etc.
They also asked if they could have a phone call with someone who knew me well from childhood.
Then for my actual intake, I had an in-person conversation with a MSW/LCSW for an hour. She went over some of my answers from the assessment and asked some questions to better understand my responses. There was an emphasis on childhood behavior. She also tried to engage with me socially to see if I would reciprocate.
After that, we had a follow-up appointment where she told me her evaluation and concluded it was unlikely I was autistic. Her reasoning was that, although I had certain traits, they were not present at a clinical level. Had she thought it was likely I was autistic, I would have gone in for further testing with a psychiatrist or psychologist.

How did I feel about the process and result? Well... I don't feel negatively about it or regret it (other than some guilt about taking up a free service that is in high demand and then not getting diagnosed with autism). The screening was a discussion, not some assessment where I had to score above some threshold on certain axes to be allowed to access further testing. And in the follow-up appointment, the social worker explicitly allowed me to challenge her evaluation if I really thought she was wrong. I did appreciate her acknowledging my own self-knowledge because in my experience it's common that people... don't.
1) I think I socially mask very well. 2) And I thought the bit about my traits being "not clinical enough" was... idk. I don't know how to express this clearly, but I thought it was addressing autism in this framework of pathology/illnesss/disorder where I don't believe it's any of those things. And "clinical," ime, is code for whether something affects your productivity, and doesn't take into consideration if being a "productive member of society" incurs some high personal cost. So I had some Feelings about that wording, although I was not surprised.
Though I didn't feel negatively/positively to receiving or not receiving an ASD diagnosis, because of 1&2 I was a little doubtful of the evaluation at first.
posted by typify at 11:10 AM on October 16, 2021 [1 favorite]

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