Published on 12, July, 2020
Hi everyone!
I'm new here as of today. I'd like to introduce myself and a bit about why I'm here and I'm interested in speaking to anyone who can offer me any advice or insight into the ASD condition and diagnosis process, especially from the perspective of a woman.
I'm now 28 years old, and a couple of years ago after researching a lot about ASD symptoms in women, I felt a lot of them rang true with me and experiences I have had in my life. By no means do I think I am a severe sufferer, but my life is definitely shaped by the difficulties experienced by members of the ASD community. I am certain of this.
I was so certain I took myself to a local autism group and met some members so I could speak to them about their experiences with autism. There was one guy there I could relate to. He worked as a graphic designer (same as me) and experienced similar difficulties as I had. However all the members of the group were male and were experiencing symptoms which were a lot more noticeable and severe than my own. I didn't feel like this was what I behaved like, and so I wasn't sure if this could be the condition I have.
After a long wait I eventually got to see a psychiatrist whose job it was to screen me for ASD symptoms before referring me to a specialist to take an official test. She was more interested in speaking to my Dad and asking him some questions about my developmental years. My Dad said I acted normal for a child, however I was very shy, which I still am today. From this account, she decided not to refer me to see an ASD specialist. I was so distraught when she told me this I couldn't actually move or say anything. I know I have this condition, but my behaviour is not as noticeable as a males, and I was not being allowed to even be tested for it because of this.I had just quit my job as I was having real problems working in an open plan office, and the psychiatrist said I was suffering with an anxiety disorder, and so referred me to see an occupational therapist to help me deal with working environments. I saw the occupational therapist for a while but she had nothing helpful to offer me as I am able to work, but not in an open plan office surrounded by people. And that's nothing she could change.
The occupational therapist then referred me to group counselling to help me with expressing my emotions with groups of people, and I am now in the middle of this treatment.
The one thing the group counselling has shown me, is it same difficulties I have with relating with groups of people which are all ASD symptoms. I am back where I started two years ago believing my problems are caused by an autism disorder and I don't know where to go from here. I have considered going back to the GP and asking to see the psychiatrist again, but the experience was so stressful and I had to do it all on my own, that I am not keen to have to state my case all over again.Have any women on this forum had an experience similar to this in their journey to diagnosis? I don't think I behave in an obviously autistic way at all. I think in fact I am very low down the spectrum if I do have ASD, but I have experienced break downs and had to quit jobs because of my symptoms, so I feel like I need to complete an official assessment in order to find out why I am like this. However I don't know how I can do that if I can't even get past the screening stage to see an ASD specialist.If anyone has any advice or insight into how I can move forward, I would be really really grateful. Thanks
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.
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?