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.
Yes I thought it was a very early age too. My speech development was normal apparently, in fact I had very high intelligence and was reading by aged 4 books for much older children. My Dad unfortunately doesn't have a very good memory and I don't really want to have to rely on him to give an account of me as a child because he struggles to remember. I am hoping I can bring my boyfriend to an assessment instead to give an account of me as he has a more in depth knowledge of me because we spend a lot of time together.
My boyfriend has ADHD and a lot of noticeable autistic traits, although he hasn't received a diagnosis of ASD, he has a cousin with severe Aspergers, so it's likely he has it. I think we have a lot of similarities, although he is very extroverted whereas I am more introverted.
Did you have to bring someone with you to an assessment? if so, who?
That's great you went to a support group, was it specifically for ASD sufferers? I have received one to one counselling on and off over the past 10 years, to help me with emotional issues, but also to help me gain insight on my symptoms and how they affect me, which is how I arrived at finding out about ASD and relating so much to it.
I am currently in group counselling, which I don't feel I am getting as much out of. It is highlighting to me how I struggle with communicating with groups, not knowing when to speak, saying the wrong thing etc. But I feel like I would probably benefit more with a stress management group, which helped me with the specific issues I have, which in stressful situations are:
* meltdown from overload of information or noise or light or smell
* brain fog - not being able to think clearly, which leads onto
* not being able to speak or form sentences clearly - not being able to assert myself or stick up for myself
* if its really bad, my body shutting down, legs losing strength, stomach acid
I feel like talking about my emotions can only go so far. I just end up talking about horrible and sad things that have happened to me in the past and I just relive that pain. I also feel like I don't have a huge range of emotions to talk about anyway, just sadness from stuff that's happened in the past, which is probably good to talk about, but I would like to learn how to have more control over my reactions to stressful situations instead of just reliving past pain over and over, so I think a support group on coping with my reactions would really help.
Are there any public ones that you go to? or do you need a referral?