ASD diagnosis for women

My parents did the best they knew how to. My problems simply weren’t recognised. We were disciplined how they had been. It was only when I went to school that I felt alien. Even the over shy me became a bit of a chameleon. I’d quietly fit in with whoever would let me tag along. It is hard explaining the concept of a spectrum to people. I just say that the terms are in their infancy. Once upon a time everyone who needed psychiatric help was called mad. Now there’s a whole spectrum of terms for mental health problems. Autism is an umbrella term for developmental disorders of a specific type, no two people affected are the same. Maybe in the future there will be more specific terms. Or maybe I can just be myself and as long as I am not hurting anyone else people should just accept I am me. I do wonder sometimes just who really needs so called labels and why other people cannot just accept there are variations. I also wonder why I had to be categorised to access support. I also think it is sad that my mother is still of the opinion that doctors would blame parents for either mental health problems or autism. But I think historically they did. Having said that, I think you should look into the possibility of getting assessed just to settle your mind on the matter. I’m glad I did. And if you are struggling, as you are, you should be able to access appropriate support. I live in London, so was assessed locally, but had to wait several months. 

Thank you I will take a look

Thank you,

I live in the west midlands, this is where I went https://www.thefamilypsychologist.co.uk/content/our-services.
The initial appointment cost me £150,

I think somewhere on this site their is a list of all the assessment centres maybe you could find one closer to home, am jus bad with commuters so cant seem to locate it

Hi Alice, 

I'm sorry to hear your parents weren't supportive in your journey to discovering your autism. I can relate to your experience to an extent. My Dad has an understanding that autism is a chronic condition with extreme noticeable types of behaviour, which is of course the case for some people, but it has taken time for me to explain the idea of a spectrum to him. He does still think I was a normal child though. It's really hard for me to figure out if it's worth pursuing a diagnosis when he tells me I was only a bit shy as a child. Lots of things I've experienced from my own memory would suggest it was more severe than that, and I have learned ways of coping and masking it. My main coping mechanism is to avoid people entirely, but of course, that's not a practical solution!

I wish you all the best with your assessment. 

I have looked into private assessment services near me in Edinburgh and only found a place that will only offer a brief phone consultation before the assessment itself. As this is such a costly procedure, I would like to go somewhere that offers a initial appointment first before the assessment itself, so I would be interested to know which clinic you went to for yours? 

Hi. I’m over 60 and recently diagnosed. My parents never really considered my development as different in any way, or would never admit to it, but then they never thought anything was different about the whole  family and my mother is still proud to be unique. It’s obvious to me now we are a family with high autistic traits. What’s more, the school/social services etc would probably step in if we lived like that today. My mother was never a reliable source for information about our childhoods, still isn’t and she hates psychiatrists/ psychologists and seeing doctors to this day. Dad, had he lived past 45 would not be a good source either, since he went to work before the family woke up and the children were in bed by the time he came home. Why on earth do psychiatrists only help people with parents who recognise their child had problems, are prepared to admit to them if they do, and who trust the profession enough to help and not blame? That must leave a lot of people unable to access support. I cannot be the only Aspie from a largely autistic environment where rather different behaviours etc are normal. I do just wonder if your own father can be a reliable source of information up to age 3, since I myself only realised I was somehow different when I was expected to mix with other children of my own age at school. In the end, due to my age I was assessed without any input from my mother. She would have lied anyway, even if she could remember. 

This forum should help you decide and cope. Welcome. 

Hi, I am female just turned 30 now, I gave up work as a teaching late Oct, a few months earlier I suspected autism after going to a workshop for girls on the spectrum to help with teaching, I felt a lot of the stuff rang truth with me and then a mate suggested it aswell, who had personal experience of it, I dismissed it until I had to quite my job due to a total meltdown, burnout mode, I started searching into it, on this forum and other places, I became pretty much convinced I was on the spectrum, I got an appointment with my GP, whom I though had understood me, but late found out she referred  me for depression and anxiety, I didn't have the confidence or mental energy to go back to the GP so I took the private route, I have so far had my initial appointment, and have yet to make a decision to progress forward.which will involve three more appointments one with a family member to talk about development,

Thanks! I will check this out

Link is here for easier access: https://community.autism.org.uk/f/adults-on-the-autistic-spectrum/14825/seeking-help-for-general-social-behavioural-problems 

I do sympathise with your situation, as well as other people who have posted about their experience of having to be seen twice before getting a diagnosis. I am female to and feel a bit overlooked. When I tried asking for an assessment the first time I felt I wasn't taken seriously, and went to ask again almost a year later and got referred the second time. I know of other females who have been told they are not autistic but went to a different GP who said they met the criteria for referral. 

You could consider a private assessment or going to see a different person to see if they will have a different opinion. 

You may also be interested in looking at this: https://www.bbc.co.uk/news/resources/idt-sh/women_late_diagnosis_autism 

There’s a support group available, but apart from that not really. For me though I’ve found it incredibly useful to meet other autistic adults. Also I’ve done a lot of my own research which has been a revelation. Suddenly everything is starting to make sense and I accept myself as I am, which I never did before. The most important thing for me though has been that telling work has meant I’ve bedn able to access adjustments ( eg flexible working) which have made a huge difference to me.

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.

That's great! thanks for bringing this to my attention.

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?

The post is titled ‘seeking help for general social behavioural problems’

Hi, welcome to the forum. I’m also female, aged 38 and diagnosed with Aspergers at the end of last year. Sorry to hear that you’re struggling to get a referral for an ASD assessment. When I went to the GP and then the mental health team for screening prior to referral for assessment, I went on my own. I feel that your dad, due to being a man simply may not be as able to pick up on ASD traits in a woman as well as a woman could, that’s just my opinion though. Perhaps if you ask for referral again, go on your own. Also prior to going try doing the AQ and EQ screening tools online. I know Windscale wrote a really good list of things to do prior to asking for referral in response to a recent post, I’ll go see what the title was then post it here

Hi Zomted, Thanks for sharing your experience with me.

I wonder if you need to approach the GP more than once for them to take you seriously? It seems that way. That's great that you managed to get a diagnosis eventually though. 

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

For me, the unknown was too much to cope with and that's why I went forward with seeking a diagnosis when the assessment was offered. 

I would say it hasn't changed how I cope but it's changed my expectations. I hope with time, it might help me to cope better.

No, there has been no follow up. I got a single appointment to receive the diagnosis and reassured that my original psychology referral is still on the waiting list and that they have pushed for me to be seen asap. A specialist ASD psychologist is not available though... And my previous experience means I'm scared to have to meet another new person who might have no "true" understanding of ASD... or of me...

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?

I had a similar experience in that a lot of people (one GP and several mental health professionals) said variations on the theme of ‘don’t be silly, you’re a girl and you can make eye contact’ to me over the three years after I first raised the possibility. It took me having a complete breakdown, snapping and going private and seeing a clinical psychologist that actually knew what they were talking about to get a referral. 

In the end I went private for my ASD diagnosis due to not wanting to wait another two years, but strangely at that point everyone else (a new GP, another psychiatric nurse, aCBT counsellor) all independently also acknowledged that I was probably autistic . I dont know if that means that over time, knowledge of the differences in women and men with ASD are gradually becoming more known, or whether I was just more confident in approaching them by then. Either way my psychologists advice to me was to ‘whatever you do make sure that where you go for a diagnosis is used to diagnosing women’  I think that is probabl6 very good advice if you hav3 any choice over where to get a diagnosis.

I would also recommend clueing yourself up about ASD in women as much as possible. The NAS women and girls training module was very very useful to me. Not sure if it’s still free but worth it if it is. At some point I started realising that I knew more about it than many of the people who had initially said no way to me. If you think you do have ASD have confidence that it’s worth getting a proper diagnosis i’d Say

Good luck :o)