Anyone been through diagnosis process as adult female? Help!

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Hi all, hope this is allowed. I've never done anything like this before but feeling desperate at the moment. I'm 29 years old and have struggled socially, had weird sensory needs and difficulties, high anxiety, and a general difficulty fitting in with the world for my whole life. I also tested into gifted program as a child, am female and have had a variety of life experiences--so I've learned to hide my "strangeness" to a degree, though others still do notice and routinely let me know that they feel I am "different."
Over the past few years, both mental and physical struggles have gotten worse. Lately, I've just been so tired that I can hardly function and melting down frequently. I finally stumbled across a video of a woman diagnosed with autism at 33 and it was seriously like my life flashed before my eyes as she was talking. I've never related to anything so much. I started digging down the autism/ Asperger's wormhole and found so many testimonials and new research on autism in females, and it was like suddenly I had an answer for everything. For the first time in my life, I wasn't just "weird"--it all made sense. I was so excited that I immediately contacted the psychiatry department at my university, and they started assessment with me. We did the ADOS and some other interview-like stuff. Today they told me that I am not socially-impaired enough to receive an autism diagnosis. They cited having a few long-term friends, being able to make eye contact (can, but hate it!! !), and lack of childhood symptoms (???? I've been like this my whole life. Plus spent a significant portion of my childhood lining up ponies. . .). I will receive the full report in the next week or two, but they are looking at diagnosing me with an anxiety disorder. I am so frustrated and disappointed, because I feel like the anxiety disorder diagnosis explains a little of what I'm going through, but not all--it doesn't have the "now everything makes sense" feeling that autism/ Asperger's does. I'm hoping to find someone who specializes in diagnosing adult females who will see me, but I'm not sure how to go about that. I'm located in Pennsylvania, not too far from Pittsburgh. Anyone else been through this? Anyone have any advice? I know I can't force a diagnosis, and I could be wrong, but I just feel like there's so much of my experience that they haven't even considered. If anyone has any advice at all, I would appreciate it so much. Thank you for reading.

You could try this directory. There seem to be a couple of Dr.s in PA: AANE Directory

You could also just look for a practice online in your area--I stumbled on my DR that way.

It sounds like the experts who diagnosed you don’t know much about how autism is expressed in females. By all means look for a second opinion.

You will want to look for someone who is knowledgeable about autism in adult women. Perhaps someone here can point you in the right direction.

Welcome to Wrong Planet.

Thank you for the directory!! I have found another clinic in my area by googling, but having just learned the hard way that just because they say they can diagnose adult/female autism doesn't mean they are actually experts, I'm hesitant. . . any advice on what to look for and how to know if they actually have significant experience diagnosing females? Thank you!!

Thank you. I hope so!!

Thank you!!

If you didn't, have someone who knows you (especially someone who knew you when you were a child) give information about you at your next evaluation. Try to find medical or educational records and home movies, etc. from childhood that hint at autistic traits.

Doctors didn't seem to take me seriously until I got diagnosed with an auditory processing disorder. I think it also helped that I have medical issues that are supposedly relatively common for autistic people (IBS, chronic insomnia). The hyperacusis diagnosis also probably helped me. So if you have any common autistic comorbids like that, you might try getting evaluated for those first. Medical evaluations are much more objective.

The ADOS is a joke for adults who are not cognitively impaired. If you can, I suggest that you avoid places that use it.

On the other hand, before you spend more money, time, and energy, research the social traits of autism and consider whether they are right about you not being socially impaired enough. Something like Sensory Processing Disorder may fit you better. Look into both the clinical definition/description of autism (such as in the DSM and research papers) and what a variety of autistic people say (do not bother with self-diagnosed people). You might also want to see a medical doctor to make sure your fatigue and meltdowns don't have some cause other than autism.

Since you mentioned relating to someone who has Asperger's, know that the DSM no longer lists Asperger's as a diagnosis (although doctors don't necessarily follow the DSM), and it's therefore conceivable that the woman you saw (and you, if you are a lot like her) may no longer qualify for an autism spectrum diagnosis. Asperger's is considered a mild form of autism, and if you are really too mild...well, significant impairment is a requirement for a diagnosis. The meltdowns and fatigue are definitely significant, make sure you mention that.

Also make sure to be your most authentic self at any future evaluations you have. Since you are fatigued, you might want to try that in the rest of your life as well, if you can. Dropping the act in day-to-day life can make it easier to drop the act in the psychologist's office.

Another option is to go into therapy (which might also help with the anxiety). A competent psychologist may notice that you have autistic traits and help you get diagnosed with a referral and observations, especially since she'll be seeing you on a regular basis. But also know that, anecdotally, therapy (except some CBT) has proven useless for autistic people. There is some autism-specific CBT, but finding someone who practices it may be difficult.

It is hard to know what the ability of the diagnostician is.

This on misdiagnosis might interest you.



This is long, but good:



I always enjoyed this talk:

Thanks so much for such a thoughtful response. I do think it could be possible that I am "too mild" for a diagnosis (by my reading of the DSM I should qualify, but I'm not an expert of course) but I don't think that I can accept that conclusion when so much of my experience has not even been considered, and when I feel like I'm getting closer and closer to total breakdown. I am hoping to find a specialist who will at least let me tell the whole story, rather than basing everything off of a few questionnaires and the ADOS. I will make sure I mention comorbidities, too, as I do have a couple. You gave me a good bit to think about, so thanks again!