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Women (and men) diagnosed with ASD in later life - advice please!

Deleted User

Hi. I am new to the forum. I am 33 years old and think that I might have Aspergers. I have been researching for almost two years through books, youtube, online reports, blogs, vlogs, forums, radio, TV. I feel it fits. It describes who I am. I am not here to go into why I think I have it but to see if there are any women who have had similar experiences to me but have been diagnosed with ASD.

I have always felt different or out of step as a child, growing up, as an adult. I have looked into various things over the years - bipolar, schizophrenia, introversion, only-child(ness), defective parenting on my mum & dad's part, autism, aspergers. I rejected all of these. A friend said in passing (not directing anything at me) that "aspergers in women is presented differently than in men. Women mask their symptoms". When I had read about autism and aspergers on the internet,  this was all male-orientated and I couldn't relate to it. So I started to read about aspergers in women.

I approached my partner about it after a few months of reading. He said there's a possibility but is of the mind-set that "well you are who you are so it doesn't matter". It matters to me. I feel I have been searching all my life to find out who I am. This is like a piece of a puzzle which I never even knew existed. Now I've found it, it's like a whole different picture.

I have approached a few good friends about it (after a few drinks; it was the only time I felt brave enough to) who have dismissed it straightaway. I was quite offended by this. When I have spoken to my partner and these friends about why I think I have it, I have been met with "oh well I do that too".  I have given up talking to friends about it. I said to my partner "Why would I go researching about it for myself if I didn't think there was anything wrong with me? You only start looking into something if you think it applies to you otherwise what's the point?" (By the way I don't think there's anything "wrong" with me now but all through my life I have felt that...). From reading the material that I have,  I wonder if any neurotypicals have read it and can identify with it too? I would be interested to know.

The thing is, if friends don't believe my and my partner to all intents, is 50/50, then a doctor isn't going to believe me. I have read many stories of women who have been laughed out of their GP surgery. I find that on reflection, I sometimes only talk about things if they are explicitly asked of me so unless I am asked something outright, I might not even think to talk about it.  If that makes sense.  I feel that there are no special circumstances to me. I read that a lot of people with ASD struggle with jobs/college/friends/mental health.   I have a full-time job teaching English to foreign people (a job, I would argue, fits very well. I am in charge of  and control my own workload, I can put on a "show" for my students, if there are any communication difficulties this could be put down to the language barrier, I can get along with the people for the length of the classes so get enough "people time" without having to invest any further as you would in for example with colleagues in an office). I have a degree from uni and some friends (who are gay men or not "typical" females). I value my friends (mostly) very dearly, but friendship is still difficult. I won't go into that here. I don't have any special skills that I can identify myself and have always been able to hold down a job (I would argue at a cost to my mental health which I have only been to the doctors about twice. Again I think this is because sometimes I cannot identify when I have problems or don't bother asking for help, thinking that I can sort it out myself).

When things are going bad, I am convinced I have ASD. I keep coming back to it. More and more. That must tell me something surely. This is something Sarah Hendrickx mentions in one of her youtube videos.  The mask falls off and ASD is uncovered during times of stress.  At the moment I feel that my mental health is well, things are going OK in life and am thinking "well perhaps I don't have it". I know from experience that this won't last long. I just feel it's given me a window into my life which explains a heck of a lot.

I feel like I am being ridiculous. While I can't relate to the NT world, I feel that people with ASD would not be able to relate to my experiences either so I am in no-man's land. My plan of action is to first, put this out on a forum and second, speak to my parents about what I was like growing up. I am scared to do this. I feel my mum would say "don't be so daft". 

Is thete anyone with similar experiences to me who have been diagnosed with ASD? i.e. thinking you have it then you don't then got diagnosed? Are there any women (or men!) diagnosed who  seem to live a regularly "NT" lifestyle (ie job, qualifications, friends), and how has this impacted on your mental health? (Before or after diagnosis).

I appreciate all comments however  big or small but please believe me when I say that this is a big step for me in posting this.

Thanks for your time

Parents

  • Hi when I read your post it sounded so like me almost a year ago.  I am also a full time teacher and have held down a full time job and been  single parent to 2 children so I managed to mask pretty well and live a seemingly regular NT lifestyle but at a huge cost to my mental health.  I got to 50 before realising I had to find out if I was autistic or not because I was finding it more and more difficult to cope with changes and stress at work.  I was terrified before going to doctor who was surprised and not really sure what to do but i just asked for a referral and then found my own clinic to get an assessment,  I used the links on the NAS site to find it. 

    It was the scariest thing I have ever done but also probably the best.  I didn't discuss my thoughts with anyone before going so I don't have the experience of people not quite believing but since my diagnosis I have only told a few people and your comment about - it doesn't matter you are who you are - is one I have heard.  But it does matter.  Maybe they mean it doesn't matter because they won't think any differently of you but it also means they don't want to talk about it and something so big that changes the whole way you think about yourself and everything you have ever done does matter.  If you have read and watched Youtube videos and feel like they are just like you, it doesn't matter if your partner or friends don't believe it, you should find out for you.  I don't know about your parents but if they don't have much experience of autism they might not realise that it matters either but if you go forward with a diagnosis they might ask them to fill in a questionnaire about you growing up.  There are ways to get them to answer the questions without explaining why but that it is too complicated to go into here!

    I think I must have read every book about women being diagnosed with autism as adults and I saw bits of myself in all of them.  I would say the best book I found was Cynthia Kim Nerdy Shy and Socially Inappropriate and if you can read French La Difference Invisible.  As to your question about whether being diagnosed impacts on your mental health consider how you feel now.  I can honestly say it has been hard finding out about myself and things I didn't know I didn't and I have had more panic attacks and shutdowns in the last year while I tried to process the information and carry on as if nothing changed.  You will need one good friend to listen to you and tell you you are not going crazy but it gets better.  I am actually creating a zine about the emotional rollercoaster I went through after being diagnosed,and things that I would have liked to have known at the beginning so I didn't constantly think, now I've got it figured out, only to be hit by another emotion. 

    But the alternative would have been worse because there wouldn't have been an end to worrying about it and it's so much better to understand why you do things and why things are hard.  Knowing is so much better and even if it's hard to learn, learning about yourself is a good step and makes it easier for you to take care of yourself. 

    I know this is a big comment but this is a big step and if you are thinking this much about it, go to your GP and start the process of being diagnosed.  The NAS has guidelines for GP's which I had ready for show to my GP but she just wrote me a referral after I gave her the long long list of why I thought I was on the autistic spectrum.

    Good luck :)

  • in reply to Komaneko

    Komenko. Well done on getting your diagnosis. In fact well done to everyone who has posted so far! It sounds like you were fortunate to have a GP who took you seriously and got the ball rolling. That must have been difficult not discussing your thoughts with anyone. I know it took me a good few months to approach the person closest to me to talk about it.

    Yes, it's changing the way I see myself. It's changing the way I deal with difficult situations because I can see now why the situation might be a difficult one. My parents have got no idea about autism which is why I am afraid to talk to them about it!! However, I need to say that in reading everyones experiences who have posted - this is giving me courage to speak to them now I know I am not alone. THANK YOU.

    I think creating a zine is a great idea (an actual 'zine...?! or am i showing my age :-P) I found that when I moved house almost a year ago and kept a diary it helped because I could see how my emotions had evolved (from feeling my insides had been ripped in two to "actually I am getting through this and learning to cope).

    I think you're right when you say the alternative would have been worse. The advice I woud give to myself if posting on here would be "well you have got nothing to lose". To be honest it's probably going to continue eating away at me until I do something about it....

Reply
  • in reply to Komaneko

    Komenko. Well done on getting your diagnosis. In fact well done to everyone who has posted so far! It sounds like you were fortunate to have a GP who took you seriously and got the ball rolling. That must have been difficult not discussing your thoughts with anyone. I know it took me a good few months to approach the person closest to me to talk about it.

    Yes, it's changing the way I see myself. It's changing the way I deal with difficult situations because I can see now why the situation might be a difficult one. My parents have got no idea about autism which is why I am afraid to talk to them about it!! However, I need to say that in reading everyones experiences who have posted - this is giving me courage to speak to them now I know I am not alone. THANK YOU.

    I think creating a zine is a great idea (an actual 'zine...?! or am i showing my age :-P) I found that when I moved house almost a year ago and kept a diary it helped because I could see how my emotions had evolved (from feeling my insides had been ripped in two to "actually I am getting through this and learning to cope).

    I think you're right when you say the alternative would have been worse. The advice I woud give to myself if posting on here would be "well you have got nothing to lose". To be honest it's probably going to continue eating away at me until I do something about it....

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