Women and Diagnosis

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I am thinking about someday writing a book about women and Asperger´s Syndrome- (I figure somebody should, there is far too little known about this subject). So I am in the process of compiling information.

As there seems to be a belief that AS affects more men than women, then I am curious: how hard is it, actually, for a woman to be diagnosed? How many of you women out there-

a) were diagnosed very easily, no problems
b) were finally diagnosed, after much searching and effort
c) know they probably have AS, but are still having trouble getting a diagnosis
d) haven´t even tried to get a diagnosis because they know it can be difficult for women; (or realize they present a little differently)

Please, tell me your diagnostic stories!

I publish a newsletter dedicated to women and Asperger's. Last month, I used three research studies that just came out. Two showed girls being underdiagnosed and the third showed more low functioning girls being diagnosed.

What appears to be happening is that clinicians have no idea what ASD in girls looks like and they also don't seem aware of where the literature is that explains to them how to diagnose. So, I've been working hard to get the word out and educate.

I had to be diagnosed several times over (3) to get a clinician to go from just NLD to AS. And several assessments later, I now come up easily as AS, moderate, rather than mild.

Please PM me if you get a chance. I'd love to add you to my newsletter mailing list and also I'd love to stay abreast of the research you're doing

I'm in the (c) category. Getting the diagnosis results next week.

Being AS is likened to having a more male brain, which makes some sense to me and partly explains how it gets missed in females. "Male brain" in a female can interpreted by by society as being smart/analytical. The attendant social issues get can get labelled attitude problems. It really misses the point.

Last edited by Ladarzak on 08 Mar 2010, 12:04 pm, edited 1 time in total.

I haven't gotten a diagnosis yet, but I have started the process. I made an appointment in February for the first available time which is not until June. Clearly, this doesn't have anything to do with my gender, but I thought I'd share. I also had to get approval from my insurance company for it and the time limit on it ends about a week after the appointment, so I'll have to renew immediately. There's a limit of 30 visits a year and each visit will cost me out of pocket at least $45. So, I'm saving my money in anticipation of many visits. That said, since there is pay discrepancy here, as a woman, I make less than men in my profession, so percentage-wise, it costs me more to pursue a diagnosis.

oh, I guess that would loosely put me in C. But I'm pursuing it and I'll just assume that it'll take a lot to get there.

I'm in the A category. I was diagnosed early, no problems. I had my obsessions and my rituals. I also didn't say very much, and my eye contact was off. I also had meltdowns and toilet issues. I was also convinced that my parents hated me, when I was little.

I'm in the D category. I've been diagnosed with ADHD/inattentive, but it wasn't until university when I went in and told them that they needed to diagnose me with dyscalculia because I was having trouble in a class that required me to remember numbers. They told me that people hardly ever have dyscalculia and that they could tell by talking to me that I had ADD because I wasn't "paying attention." Since I've worked hard to be moderately socially competent, I'm pretty sure at this point that I wouldn't meet diagnostic criteria. At this point, I'm just your average clumsy, intellectual introvert with encyclopedic knowledge in a few interests and an inability to recall her own phone number.

Tell me about it. It takes me forever to memorize sets of numbers and I'm constantly looking up my own phone number. I tend to remember their shapes rather than the values themselves. I'm in a mandatory stats class right now. It's like the instructor's speaking a foreign language.

As for getting a diagnosis, I'm pretty sure I would have met all of the criteria as a child or teenager, but I'm not sure I fit them now, despite the issues that still raise their heads from time to time.

My diagnostic history is complicated and goes broadly like this:

- In therapy for anxiety in UK
- Doctor and therapist refer me to more specialised mental health services, thinking more's going on
- After a very long wait, the place diagnoses me with neurosis and provides therapy under the trauma model; apparently every mental health condition and things like autism are due to childhood trauma
- I leave the abusive therapists after a few months and talk to my doc about ASDs
- Doc thinks my suspicions are correct but says there are no local ASD services
- After a few months, doc tries to refer me out of area but it takes years and several complaints procedures to acquire funds from local health authority
- While all that was going on, I saw a clinical psychologist my doc found outside the NHS, familiar with autistic children, who said I'm clearly on the spectrum
- In addition, I saw a psychiatrist who thought I had AS and wanted to refer me to a hospital out of area for help with my awful functioning and my anxiety
- After being granted funds by the local authority, I attended the hospital. They had to assess me before granting services. They said that without parents my diagnosis is inconclusive, so they wished to refer me back to those awful mental health therapists for treatment (who adhere to the trauma model) instead of providing me with their ASD services. The assessment they did conduct was incompetent--which they actually admitted could be unsuitable for women--even though they are the supposed experts (but are clueless about adult ASDs). Not only that, but I discovered some questionable practises at the hospital through my research, which I will only discuss via PM. Therefore, after all those referrals by local doctors and the effort to obtain funds, I am still without services

Without my doc's support, I would have no diagnosis at all. The NHS is clueless about ASDs in adults of the AS variety. Intellect, having comorbids, and being female also work against you. The comorbids are blamed for all your difficulties, and even then, they often get the treatment of them wrong.

Last edited by outlier on 04 Mar 2010, 2:19 pm, edited 2 times in total.

I had trouble getting a diagnosis. Once I saw a specialist I was diagnosed almost instaneously, but getting access to a specialist was a battle. In the meantime, my health was ruinined, I lost my place at university and the best and only chance I have ever had for a career, ended up housebound and experienced significant degredation in my health, lost my emotional well being, dignity and suffered significant deterioration in functioning. I have still not recovered from the so called health services I was subjected to.

I was 12 when diagnosed and it was real difficult because of my early history. I wasn't diagnosed after one session or after a few. It took a couple months. I can remember going to the place and my mom and my psychiatrist talk and I'd be in the room. We went there a lot.

Sometimes I wish it be sooner because the my life would have been a little easier at home but no one caught it in me and my doctor I had when I was 10 said I didn't have it. So my mom knew of AS then but I'm surprised she wouldn't recognize the symptoms in me. I'm sure she did and she thought it was something I'd get over just because I "didn't have AS." But my speech therapist caught it when I was 11 and my mom pushed it away. So she said I might have symptoms of it then but not enough for the diagnoses. Then my shrink caught it in me and my mom said she wanted a professional to look it over. So that's how we saw a psychiatrist.

D at present. Had a diagnosis existed for AS when I was a child/teen, I feel reasonably sure I would qualify. My coping skills aren't NT by a long shot but I would likely present as sub-clinical at this point. Most of my social skills have been acquired in an intellectual analytical manner; I was the star of my college elementary logic class. I'm not seeking a diagnosis; at this point, why would I? I have a job, a family, friends I rarely see but who continue to contact me from time to time, etc. I would be far less stressed if I could work from home dealing with art and literature but that just doesn't seem very practical. I'm still working on that, mind you, but I'm being realistic.

I would fit around b, however I went through one shrink and doctor after another. No one ever brought up aspergers or autism.

Wasn't until my therapist asked and sent me pamplet about it. My whole family supported my effort in getting a diagnosis. I was about 21 when I got my DX.

Last edited by MissConstrue on 05 Mar 2010, 10:20 pm, edited 1 time in total.

Interesting- it sounds like many of you who did get a diagnosis had to go through a lot to get there. Judging by the answers so far, it sounds like it´s easier to get a diagnosis when one is younger, which would make sense. Although, I´ve heard many stories about young girls having trouble being diagnosed.

There was the story about a woman who was sure that her daughter had autism. Upon bringing it up to the doctor, however, he said "don´t worry. Girls hardly ever get autism, so it´s very unlikely". Of course, a few years later she was diagnosed with autism (Kanner´s autism).

I also saw a documentary in America about a mother who was sure her daughter had AS. Both her sons had AS, and she recognized many of the same behaviors in her daughter. However, she was having a very hard time getting a diagnosis for her. I think finally, due to much perseverance, she was able to get one. In the documentary, they showed the daughter trying to interact with her peers. I thought it was pretty clear she had AS.

There seem to be many factors at play here: 1) there is a widespread belief that AS and autism are rare in girls, 2) people don´t really know what AS "looks like" in girls, and 3) even when the traits are the same or similar in a girl, people (doctors) interpret it differently. I notice constantly that there is a whole different dynamic in our society regarding how girls and boys are treated, as well as how their behaviors are interpreted. I have the feeling, though, that most NTs are almost oblivious to these things.

If anyone has any other thoughts, I´d be interested in hearing them.

I am getting tested again for AS for the second time.
My Therapist thinks i may have possibly been miss diagnosed with Avoidant Personality Disorder.
He thinks that my old therapist settled on APD too hastily and its not syncing up and wants to re-open the AS case.

a) were diagnosed very easily, no problems
Not a chance, i wasnt even considered to be tested until i was 20. Im 21 now and im turning 22 in june and theyre still trying to figure things out, ive been tested and now retested. I ither have it or i dont just pick one!

b) were finally diagnosed, after much searching and effort
I wish my Therapists would just settle on something but they keep reopening the case and AS comes back up, i almost just want them to pick that so we can talk about something else.

c) know they probably have AS, but are still having trouble getting a diagnosis
I probably do have it anyways, it keeps coming up everytime! that has to count for something.

d) haven´t even tried to get a diagnosis because they know it can be difficult for women; (or realize they present a little differently)
No this is my second dose of diagnosis testing.

B.

Before I became officially Aspie, I was almost all possible. ADHD, OCD, Schisophrenia, Depression, Antisocial-narcissisitic PD etc...
My Aunt suggested AS and it was sth odd, because only ret*d children have Autism (welcome to PL). But it was like bull's eye. Nobody cared I'm a girl, it's not America.

I'm jealous of children, they can be AS-diagnosed, have help in school and NT-world. I was born too early and I have only post-school trauma.

I was the one to first figure out I was autistic, but it was easily accepted by doctors and psychologists. I am a pretty obvious case, though, and flapped my hands and didn't respond to my name as a very young child, etc. Previously I'd been diagnosed psychotic numerous times because of my manner of communication (which I'm more careful of now). The repeated misdiagnoses were because the psychologists/doctors didn't really ask about my childhood and my father hated doctors so I rarely saw them in childhood.