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 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.
Did you get offered any help or advice on how to manage your symptoms after your diagnosis?
That seems quite extreme that they only wanted to know about 0-3 years. Surely logic says that as you are now an adult, memories of that time for you or your parents probably wouldn't be strong and signs may not have been understood. I had delayed speech so that stood out for my very early years but I don't think many other signs were obvious at that age. For example I am hypersensitive to touch, but not with my parents, so at a young age this would probably not have been obvious at a very young age. Most of my childhood evidence was through my school years. I don't think they should be refusing an assessment on the basis of the first 3 years of your life.
The support offered was a support group but unfortunately due to my working hours, I was not able to attend. The assessor said I need to be more honest about my difficulties rather than pretend I can cope so as to reduce my anxiety levels. Although this is easier said than done. He really pushed that I need to be accepting of myself and not constantly be trying to adapt for other people as this is very stressful for me. I would really have liked to have a series of appointments with him as I found talking to him very helpful.
What kind of symptoms do you feel you need help/advice with?
It was advised that I took someone but not essential. I decided not to as my dad's memory of my childhood isn't good and my mum sees my behaviours as something I should have conquered rather than something I need help with so I didn't think taking them would be helpful. I had to fill in a questionnaire about childhood so I did ask them some questions to help me fill it in.
I don't find group sessions very helpful personally. I just feel awkward and find it hard to properly engage. Some people find them very helpful though. There are public support groups. I think it is very dependent on your area.
It sounds like you are struggling with becoming overloaded from sensory issues and/or too much information and interaction. The only real way to deal with that is to give yourself time out.