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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

  • I can relate to a lot of what you are saying. I am a 45 year old man and was diagnosed a few months ago. I have worked since I finished university at the age of 21. What I realise now though is that I have struggled through with severe anxiety for most of that time with only minimal assistance. Now that I have been diagnosed with autism, it is helping me to find better strategies to deal with my difficulties. 

    I think it is quite hard for friends to accept that I have autism. I have told a few so far and their reaction has been mostly to accept it but not really think it is a major issue. On the one hand that is nice as they just accept me as they are. But, what they don't realise is that I feel completely different from them and it does cause a lot of problems in my life. I am just very good at covering up all of those problems.

    I work really hard every day to interact with people and so they generally would never think that I have autism. If you can relate to ASD then you are not being ridiculous - it may well help you to understand yourself and find new ways of dealing with challenges. Good luck!

  • in reply to Deleted User

    yeah, forgot that one you had to pay - it was only about £2 though I think

  • in reply to SciFiGreg

    That must be infuriating! Especially when theyre quite clearly making words up! Do you think ppl need to know at work? I work in the publuc sector and everyones dead lovely but i think id still only tell my manager.

    I like your advice about asking others for advice. The thing is, i wasnt even asking my friends for advice...i was making a statement. One friend thinks she is dyslexic and i didnt laugh in her face when she told me like she did with me! Its like another way of coming out so until im sure im not going to say anything!

  • As someone that's also recently been diagnosed (37 year old male) I can offer the following advice.

    Don't ever ask someone who's uneducated in ASC for advice on the subject as they simply don't understand and their response will possibly offend you.

    It's bad enough telling people at work and having them respond with "you don't look like it" or implying that your diagnosis is the result of "societal overpathologisation" and that you're suffering from behavioural issues that are easily fixed.

  • in reply to Misheard Lyrics

    I think having children makes you see the world differently especially if your son has ASD and you can now see it in yourself. Thats great you have support from the online community but it must be frustrating to be dismissed by the GP. Especially after building up the courage. I think a lot of GPs are only familiar with the typical "male" peesentation of ASD. You know your own mind better than anyone. If you didnt feel there was anything wrong you wouldnt have persued it. I wish you the best of luck and would like to hear how you get on.

  • in reply to Andy

    thanks for the male perspective too! Yes i have seen the video but watched it again. A lot of it does describe me too and i get what you mean about the seemingly ordinary person. It also got me thinking (again) that one day in the future theres an awakening and people are not seen as different but theres a general neurodiverse spectrum which ecompasses everyone.

    I will show the video to my partner. I have asked him to read something but I think a video is a good way to "see" it as you can see the actual person. Food for thought!

  • in reply to NAS24859

    I agree with the social interaction! Yes I was thinking of making a list. its hard to know where to start but this is something i will do after i have spoken to my parents.

    Can i ask what made you seek a diagnosis?

  • in reply to Bagpuss7

    Thanks for the links. I looked into the dealwithautism link to the test but you have to pay for it. I have done another online test which came back borderline but i have issues with the black and whiteness of the questions and still ferl the Qs are targeted toward males.. The dealwithautism one explained them more but i dont want to be paying. I have done the aspietests one before but cant find my scores so will do again. I will look into Cynthia Kim as havent come across her before. Dont get me started on Rudy Simone!

  •  I am a 52 year old woman, married with children, and I have a job. Admittedly it's a fairly menial one. in a laundry in a care home, but works quite well for me, because I'm on my own most of the day. I haven't told many people yet that I think I might have Asperger's syndrome, except on this forum, where I have been able to "come out" about it without criticism, in fact receiving a lot of support. This means a lot to me, as my family have been mostly dismissive about it, as has my GP on my first attempt to get a referral. I will be trying again.

    My son has ASD, and over the years I've had to read a lot about autism on his account. It was that which gradually got me thinking about my own life. More recently, I've done several AQ tests online, all of which put me well in the range for Asperger's syndrome. But it still took me several months to get up the courage to see the GP. I don't normally ask for help, and rarely see my doctor except for routine check ups, and I wonder if that's now counting against me  because this must seem "out of the blue".

    I do want to know for certain, because it would explain so much about my life, and the difficulties I'm still having. Even if no one else believes it. I think it would help to repair some of the negative attitudes I developed towards myself while growing up in ignorance. And if it turns out I don't have it, I won't be any worse off than I am now.

  • Hi there

    Have you come across this video?

    I came across it earlier this year and it was one of the key triggers in seeking a referral/diagnosis for Autism.  The shock to me was that there was somebody with Autism that completely went against my image of the word.  So wonderfully "NT" that it was the first step on the path.

    Yes I'm a bloke and you've asked for the female perspective.  But if you were to show this to your friends and family, to show them about the seemingly ordinary person in front of them, to show how they think and experience things differently, they'll be better able to understand and provide the support you're seeking.

    Only a suggestion but I hope it helps.

  • I was diagnosed at 33 and teach too. I like my job as it provides me with social interaction but I'm in the leader role, rather than one of the crowd.

    I had to ask four times to be referred as I passed a NT too well. If I was approaching the NHS again I'd look at the criteria for autism then write down examples of how you fit this criteria and show this to your GP. Completing the tests would be useful too.

  • I've just been diagnosed in my 40s, am a teacher and have successfully held down a job for over 20 years, so I guess I "passed as an NT" pretty well. But like you, I kinda knew something about was different so made the decision to seek diagnosis.

    I found doing some online AS tests first helped confirm in my head I was thinking along the right lines.

    Also I would recommend some reading - I found Cynthia Kim's book "Nerdy Shy and Socially Inappropriate" excellent - pages of it could have been written about me. Rudy Simone's "Aspergirls" is another good one.