ASD diagnosis for women

Did you get offered any help or advice on how to manage your symptoms after your diagnosis?

Hi, thanks for sharing your experience with me.

It sounds like you had a terrible time on your journey to diagnosis. That does seem shocking that the health care professionals you dealt with missed all those signs of ASD as it sounds worse than what I have experienced. 

I too have issues with OCD. Mostly to do with tidying and organising my flat and knowing where everything is, as opposed to the cleanliness sometimes. Also my daily routine is very rigid with meal times and I am terrible with spontaneous plans. The worst symptoms really appear when I am under stress though, I get really bad physical symptoms, brain fog and sensory overload and it all really came apparent there was a problem when I started having burn outs and break downs when I started working after graduating from university.

I did the AQ test in 2013 and got 36, and did it again today and got 32. It recommends you get a proper assessment if you are 32 or above. So like I say, I think I am very much on the lower end of the scale, but I feel like I should still pursue a diagnosis anyway as I hope there might be ways to learn how to cope better once I know if I have it.

Did you get offered any help or advice on how to manage your symptoms after your diagnosis?

Thank you for sharing your experience with me.

My Dad said the psychiatrist asked specifically about my development years which are 0-3 years I believe. I don't remember those years at all, but I know I only spent time with my parents during those years as I wasn't in nursery or around other children so a lot of the issues i have now simply didn't appear then.

I know from my primary school years I managed to make a handful of friends, and i would then stick to them like glue and not bother to socialise with anyone else. I had the added extra problem of moving schools every 2 years, and I went to 6 in total, so I was constantly in new social situations and was bullied a lot for being odd.

I will use your suggestion of writing a list in those four categories. I'm sure I have always struggled with the symptoms I have since I was very young, I remember being unhappy constantly from my earliest memories.

I did the AQ test in 2013 and got 36, and did it again today and got 32. It recommends you get a proper assessment if you are 32 or above. So like I say, I think I am very much on the lower end of the scale. I am considering going the private route as I think it will save me a lot of stress and time and it sounds like you had an assessor who was very clued up on the differences between male and female symptoms. Like yourself, a lot of my symptoms only appear when I am in a stressful situation.

I'm sorry you are having a hard time. I'm not sure I have much wisdom but I am female and diagnosed aged 30.

In brief:

Aged 4 - there were concerns I wasn't mixing with the other children at nursery except 1 friend. No one explicitly suggested ASD.

Aged 5/6 - I didn't meet some educational milestones and still wasn't mixing with the other children again except 1 friend. I was also perfectionistic and very interested in details. No one explicitly suggested ASD.

Teenage years - again not mixing with others except 1 friend. Teachers had many concerns but no one explicitly suggested ASD.

University - issues with special interest being all consuming at expense of degree. Poor physical and mental health. Lots of physical testing, no real conclusions.

1st job: Reached a point of complete burnout. Misdiagnosed with mental health issues. Reached a point of even worse than first burnout and admitted to hospital with poor health. I was apparently "the most severely anxious patient" they'd ever seen... Was assessed for OCD (not sure how qualified or how good the assessor was) but they decided I didn't have OCD. Needed an entire year out of work.

2nd job: Issues were raised about me not mixing. Didn't stay long after that. At that time I was seeing various mental health professionals, no suggestion of ASD. Moved location and all mental health support was stopped.

3rd job: Burnout after just a few months. New mental health professionals involved. They didn't "get" me but kept "working" with me. One couldn't work with me due to a lack of patience with my "OCD" and slowness. Another said "I didn't seem anxious" to them and didn't see why I was getting support. Eventually I was assessed again by a psychiatrist who without doing any paperwork concluded I displayed severe anxiety, OCD traits and autistic traits but didn't formally assess me. Eventually I was abruptly discharged as they felt there was nothing they could do for me.

Haven't worked since 3rd job (almost 6 years now). I've had various bad meltdowns and was referred to see a psychologist (was "assessed" February 2018) and was told I was NOT autistic. She decided this after 45mins with me and no formal assessment. Another bad meltdown led to a psychiatrist referral as psychology still haven't seen me, this psychiatrist, ignoring all the old stuff in my file and started with me a fresh and agreed the ASD was possible. It then took lots of paperwork, many assessment appointments, them meeting my parents for an interview and a group of professionals agreeing I had ASD to receive a diagnosis. This process took months but the conclusion was that there was no doubt I am autistic and actually they were saddened that I had had to wait so many years to be diagnosed.

Sorry if that's a bit long but I get the impression that the experience of getting a diagnosis is hugely variable. That's my experience... Not at all straight forward... I'm not sure if that's helpful but I guess what I'm saying is that even when someone has said no, it is still possible to be diagnosed.

Did they do the AQ or similar with you as part of their screening? I think the psychiatrist finally doing an AQ was when it became really apparently that I should be formally assessed. I scored 44 out of 50 which is apparently very high...

I can't offer any advice about how to get a diagnosis or how to move forward as I ended up getting one by "chance"/"luck". I currently find myself still quite struggling and stuck... And still waiting to see a psychologist almost 18 months since I was first referred. I've tried to seek support for a charity working with autistic people but have yet to have any success in seeing them. My diagnosis therefore hasn't really changed my circumstances or helped me move forward but it has helped me have a better understanding of myself which is helpful.

I hope others will perhaps offer better experience or suggestions, I'm still very new to being diagnosed and only have my own experience to go on as to how thing work.

I don't think it's that uncommon for women to struggle to get a referall/diagnosis. I personally decided to go down the private route and was lucky that the assessor was very aware of differences in women and the ability to mask. He saw a lot of very subtle things in my behaviour. On the outside I don't think I appear that autistic until you see me under stress. However when I write down the difficulties I have it becomes a very long list.

Something I found useful was to write down the traits I thought made me autistic in the four different categories needed for a diagnosis - communication, sensory, social and rigidity of thought. Difficulties in all these 4 areas would suggest you definitely should be assessed. The aq test can also be useful for an indication. 

As your referall was refused due to what your dad said about your youth, it would also be worth looking at how many things on your list have always been there and if any are just as an adult. They have to have been there from childhood to get a diagnosis. 

If your list looks like you should get a diagnosis then I would go back to your gp with your list and aq score and ask to be referred again. If you get to the same point this time when they need to talk to your dad, it may be worth discussing your list with him and seeing if he agrees those issues existed from childhood. If not you would need to really push the women mask line.

Your other option is to consider the private route but it is costly.