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

I’ve only got a small comment lol. Since diagnosis last week I’ve told a few NT’s and have been met with the same response “well I do/am like that too” to where I’ve had to explain(which is hard to as it’s new to me) that’s just one similarity, it doesn’t make us the same. What I can gather with my limited knowledge is autism is a collection of symptoms and a different perspective on the world compared to NT’s. 

Hope this helps and go to see your GP as that’s the first step in getting diagnosed also it may help if you list your symptoms/challenges to show them. 

All the best

Hello,

I am a Healthcare Professional and have only this year discovered that I have Autistic Spectrum Condition. I have worked in my Profession  for over 40 years, so to discover that I have  somehow managed to work with this condition and survive (until recently) seems to be an achievement.

It seems very reasonable to me to want a diagnosis because as you say it answers some of those questions that have been 'nagging' at you for so long. I would suggest that you persist until a GP listens to you and refers you to an appropriate department, even though the waiting time is likely to be long. Do not be 'put off' because you will only regret NOT knowing.

Good Luck!

NAS38825

Many of us with ASD will be able to relate to what you've written!

I have had the same job for 25 years.  I've been married for a little longer (my wife also exhibits many ASD traits but does not see the need for a diagnosis for herself). 

My job is IT support and telephone selling - I do almost come across rude to customers at times and dislike the idle chit-chat of some, but I'm very fast and accurate and can be helpful. 

Friends. Most are people I'm in morris teams with.  One team is almost entirely made up of non-neuro-typicals - we're all odd - but that helps the creativity of our shows.  The other is an all-female group apart from me (the musician) - all younger artistic people.  They're very understanding of me wanting to travel to gigs on my own, not going dor drinks after rehearsals, but I do provide them with great music to dance to.  Other than that, we have no friends.

" i.e. thinking you have it then you don't then got diagnosed". I went for NHS diagnosis, but was told that as I held down a job and relationship, I couldn't be autistic -  I wasn't disabled enough (I'd even told them that I felt of it more as an Ability rather than Disability).  I then went for private diagnosis using Baron Cohens's Adult Autistic Assessment and was told after 5 or so hours that I was definately, clinically Autistic.  But she did seem to listen and question more than the NHS people.

Youre not too late replying at all. I think your advice is really good and a different way of looking at things. Instead of going with AS in mind, go with a more open mind and just generally seeking help for my problems. Its been stressing me out a bit cos ive just got so confused with who i am especially since i have been on this forum. I have examples written down from my real life. Im just in two minds about taking it further. 

I just find it difficult cos as things are at the moment im generally in a good place and its difficult for me to relate to the AS stuff i have read when things are going well. Altho there have been some niggles which i have noticed and wondered about them. There does seem to be something at least every day. Thete alwats has been but now i can identify things more. When things are going bad tho its difficult to cope and feels like itll never get better. 

Thank you for your words and advice it means a lot.

Probably too late in replying, but I'd suggest an open and frank conversation with your GP about the things you find difficult, the situations that cause you distress, and how he (and the NHS) can help you understand the underlying issues and whether there are options for improving your situation.

You can mention Aspergers/Autism but my own experience is that I went with an expectation of one diagnosis and (three years later) left with the Aspergers one. It seems there are a number of things that have overlapping symptoms and I had to almost let go and allow the professionals to do their job before they could help me.

One thing that would likely help is evidence of 'real world' impacts you're suffering. I had examples from my private and professional life that demonstrated clear issues living a 'normal' life, and I think that helped my GP argue my case with the NHS budget holders - the diagnosis needed special funding allocating. You may not need that, but do think through the things you'd like help with anyway, as that will help with the diagnosis and any follow up support.

Thats good news. Yes its a start. Best of luck and i hope you get the outcome you are hoping for

HI, out-of-step, just to let you know that after a return visit to my GP he has agreed to refer me for assessment. It will be a long wait for an appointment, but it's a start.

Hi SIlverdale. Yes it helps. It's interesting to hear of people with similar background to mine being diagnosed and what they have gone through such as yourself. Well done on getting your diagnosis!

I think it's really interesting how you say your child is very similiar to you when you were her age. When you say "you struggle in some way or another to get through each and every day" I think I can see this in myself although I'm not sure if how I am some days is down to the stress of work or how I interpret the world and deal with the stress. (eg back in work teaching this week after 4 weeks off. I've felt awful this week. First off, in a different classroom to usual so things are in different places. The room is in a different place in the building. The computer and projector are not working. I've got a different member of staff supporting. My students are new. I've got a change in my routine from the past 4 weeks. Not been sleeping. Not been able to switch off. People coming asking me questions at break time so unable to have 5 minutes to myself. I know this is a regular thing in teaching but I have found this week really difficult and am wondering if ASC is coming into play or if it's just general work stresses).

Yes! People can't see what goes on inside. That's a very good way of putting it. Do you think you will seek a diagnosis?  How do you find having children while being/self identifying as on the spectrum? I don't have children and the thought of having one, one day has been causing my great anxiety lately for many reasons. One of which is that I don't know how I will cope with the sensory aspect (eg crying, noise, being pregnant, etc) and also the fact that I cherish and enjoy and need time spent on my own. Having a child means someone depends on you 24/7 and you cannot just switch off!

Hi Daisy thanks for your post. Do you think you will go forward with seeking a diagnosis? I looked in the mirror today and thought  if I do get diagnosed with ASC "I don't know if I want to label myself for the rest of my life".  Not that there is anything wrong with the label of ASC at all. But in a personal sense in defining myself that way, I don't know if I want that. I've also been thinking that I have got where I have in life so far and am not sure if I were to be labelled by myself that way I might then start limiting myself in life. (I didn't go for a recent promotion at work which I was more than capable of. One of the many reasons being that the higher up you go, the more meetings you have to attend, the more social skills you need in order to deal with colleagues asking for advice or complaining, and are expected to go to the social events. Being in the role that I currently am I'm more on the "periphery" and so can pick and choose which events to attend. I feel that in self-identifying, it's empowered me to say to myself that I don't have to do something I don't want to (ie apply for the promotion) if the social side makes me nervous. On the other hand, if this promotion had happened a few years ago I might have gone for it (ie not let self-diagnosis hold me back) but I know  my mental health would have suffered even if I hadn't realised it as the social expectations would have increased. Not sure if all that makes any sense to anyone!

The only reason I would be seeking a diagnosis is so other people would believe me. I was thinking last night that perhaps in doing the research that I have, I have so far been able to identify and put things in place a bit more to help me manage life (eg anxiety, conflicts, triggers etc) so could continue with this "self help" instead. Although it's still a case of thinking about it after the event has happened to try and understand why I behaved or felt like I did. But yes this will take time.

Well done for combatting your depression and finding ways through it. I think I'm with you on spotting things earlier and taking corrective action and also still navigating the sensory aspect. I have recently taken up boxercise. Apart from the co-ordination of remembering my left and right as well as the combination of moves which is challenging, it's a great way to help with mental health issues as the exercise just re-sets my brain. 

I could have written your post myself. The only difference being that I didn't really discuss it with my husband and definitely not with friends. I just read up about it myself and became more and more convinced that I should seek a definitive yes or no answer. I decided to get a private assessment because, like you say I thought I'd be laughed out of the GP's office. But also because once I'd made the decision I didn't want to be on a waiting list for months or even years. I am 40 years old, I have been married for 8 years and I have 2 children. I am a teacher and worked in the same school for 12 years and then moved to a different school for the last 4 years. So to anyone looking at me they would see a successful person living a pretty ordinary life.  I am a school Senco and had worked with many autistic children but not girls. A few years ago I came across information about how autism presents in girls as a girl at school was going through a diagnosis. Since then I have swung from "Wow that explains so much of my life" to "how can I possibly have autism when I do ....."  I have suffered from anxiety since my teenage years and have just always felt there is something different/wrong with me.

Anyway, yesterday I got my official diagnosis of Aspergers. I have had a multidisciplinary assessment with 5 different assessments/interviews with 4 different people who then met to decide the results. It is the same process that I would have had on the NHS but without the wait and without having to convince my GP to refer me. Apparently they were in no doubt that I met the diagnosis. 

Hope that helps. 

Hi Random

You're experiencing exactly the same problems I had. Do you work in a decent sized company with proper HR department? If so, you should go and chat to them and explain your problems - they should support you in the workplace.

I made it to 42 before being diagnosed (52 now) - I just thought all the people around me were incompetent assholes before diagnosis - I then realised that I was actually fundamentally different to them. This has been used against me numerous times. I, like you, was the only one able to solve any problem so it got to the point where no-one else would even try - they just dumped it all onto me. My deep-seated compulsion for 'doing the right thing' meant that I wasn't able to walk away from the responsibilities.

I've found that it takes about 5 years working somewhere before my colleagues realise my over-blown work ethic and I end up being used like this.

My only solution has been to change job for something better when it gets too stressful.

Hi,

I was diagnosed at 49, now 52, and until recently have held a job majority of my life. I had a few friends among the years. but have been unable to build a close relationship. I would say right through my 30s and 40s I would be considered "normal" and successful. Looking back on things I think my success at work has been an anchor other people would judge me by. If I was same person without a job people would consider me different.

Just before my diagnosis, I felt I was on the spectrum, but my score was border line in the on line tests. Going through diagnosis, it was clear that I was firmly on the spectrum.I have been off work for several weeks now, stress related. Situation is really bad at work, and looking back on things I don't work has been healthy for me in some respects. I have minimal relationships, very isolated, and have heard many of my employers saying they care as the company is like a family. I have found out that is clearly not the case now, and feel angry those comments were made to re-assure me, when in reality the purpose is to have some control over you.

Work has caused a lot of stress, and my employers seem to just keep piling the work on, any problems that crop up, I am the one on the ground having to fix things up and get everything running again. It also has consumed a large part of my life, and should have been a much better balance enabling me to enjoy life more.

I feel there is some discrimination against me at work, so my diagnosis has steered me on to this course. I should not have been open with work about my diagnosis. It has only given my immediate manager more ammunition to fire back at me. I'm sure he and manager above do not believe I have a disability, despite giving a copy of my diagnosis report to my employer. 

Hello, I just wanted to say that your post resonates with me and well done for having the courage to post on here.  I am not diagnosed, so I apologise for responding even though you wanted to hear from other women who are, I am too afraid to go through the process and I am 50.  I have a daughter (12) who has just recently been diagnosed with ASD, which came as a shock to me as I knew there was something but thought it might be ADHD.  However some of the way she presents is very similar to how I was as a child.  I have many many reasons to believe I am on the spectrum. What resonates with me from your post is that I too keep coming back to the belief that I am on the autistic spectrum on bad days and I also struggle in some way to get through each and every day.  I have a twin sister who I confided in about my feelings on the matter and she would not entertain the idea.  The trouble is that people can't see what goes on inside us.  When I was about 30 I promised myself that one day I would get to the bottom of why I am the way I am and I believe I have found the answer.  Although  I am undiagnosed and can respond a little to your question regarding the impact on my mental health, jobs and relationships etc.  When I was in my late teens I developed an eating disorder, which I got over fortunately, though I still think my relationship with food could be better.  I have had many jobs, some I held down for five plus years but struggled through them, feeling I didn't fit in, didn't understand a lot of what was asked of me (having to keep asking etc etc) and in every FT job I've had invariably I've had to take days off due to stress and not being able to face it!  I now work from home, which is much easier.  I've had a lot of relationships, some I felt I was treated very badly in and I didn't settle down and get married until I was 35.  My husband knows I think I'm on the spectrum and he agrees with me.  As I'm getting older, sensory issues are getting worse, especially sounds and touch, which makes me feel very grumpy and I know he must feel it, which makes me also feel bad.  I hope you don't mind me responding and I wish you all the best x

Hello out-of-step,

Bravo on having the courage to post. You're in good company, and whilst some comments may seem 'to the point' in this community they are by and large well intended.

I'm 46 and self-diagnosed as having Asperger Syndrome last year.  I've just come out from another meltdown and now, finally, I'm coming to terms with the fact that I have ASD, I've always had ASD and it's not going to go away.  It feels like a positive step towards making some more life adjustments that will make it easier for me to continue to work successfully as a self-employed corporate trainer (interesting that so many who have replied are in the teaching professions!). 

I haven't had a formal diagnosis yet as I wouldn't be eligible for any support anyway and there is disappointingly little available for high functioning people as far as I've seen so far (this community being an invaluable exception to that rule!).  I'm not sure that there would be any advantages in making it "official". My friends and family know and have either ignored the inconvenient information or made some adjustments to help me feel heard and understood and accepted for who I am - the usual mixed bag.

As for mental health pre-ASD-self-diagnosis, I've had time off work with stress & anxiety previously following a bereavement and have had a merry dance with depression on and off for years before finally combatting it once and for all in 2007 - learning to release anger in a positive way made all the difference (I used to turn it inward but instead took up yelling at the wind during a storm - works a treat and no one gets offended ;-)   I learned a good number of tools for managing my anxiety during that time and find that it's less and less of an issue these days (post-ASD-self-diagnosis), or at least I spot it earlier and take corrective action.  That said I still have sensory overload issues periodically and I'm still figuring out how to navigate that one.

ASD shows up differently for everyone, taking time to know what works, and doesn't work, for you will be time well spent.

Hope that helps, if only to know you're not alone

Welcome to the community and stay in touch

Daisy.

Thanks for the link Hathor. I have read this list before. I went through it with my partner (in chunks, I don't think we have ever got to the end of it - it's a long list!) I think going in "cold" didn't help as I had had chance to read and digest it and think of examples in my mind but when we read it together he hadn't had to same amount of time. I got frustrated because I could see traits in myself but he couldn't. I found it hard to explain some things from my point of view even though I knew them in my head. Some of the traits were contradictory so that was a problem for him. Sometimes he said "well i do that too". In reading other lists I've had "well you can't pick and choose what suits you." I do think it's quality of traits not quantity. Some things might manifest much stronger than others. I've only realised this recently when people have talked about it being a "Spectrum" (TedEx).

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5040731/ I have given him this to read and highlighted areas of importance.

I have to be quite frank and blunt on this forum about what we have discussed as I need to be honest with myself and everyone on here.

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....

Andrew, I know I have had anxiety for most of my life. It's easier to see when you are older and now I have been reading about ASC I am finding different ways of coping with it and understanding myself more.

I am wondering if issues I had when I was a child are to do with anxiety. I remember heaving before school an awful lot but not being sick. I was often unable to eat breakfast. At that age I didnt know why I felt like this and didn't realise it would have been anxiety. I am not sure what my mum thinks as I have not asked her about it yet. I know now it was anxiety as I get like that even now. It was worse when I first started teaching a few years ago but I just gritted my teeth and got on with my day. I think it stemmed from lack of sleep as being unable to switch off and uncertainty over if I was doing my job well and what the day would entail.

I think you have posted elsewhere about anxiety so I shall reply on that thread too.

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 :)

A late reply as I don't get on the site often, but I hope it might help. I relate with so much of what you've said. I'm a late diagnosis seeker myself (much later than you). Your friend is right that there can be differences in how women and men present with autism. I found an Australian study really helpful. I'll link to it below. Not only was I ticking almost every box on the list (all but about two and it's a very long list) but it helped me to relate the symptoms to my past and present. What I did was to put together a document on how my autism presents (and has since childhood) in different areas of my life (school, work, relationships, etc). I emailed it to my GP and he read it before we spoke. He agreed immediately to put me forward for diagnosis. I found that the preparation helped me as well as him, and has since enabled me to explain things more easily to other people. Here's the link to the item on the Australian study which I found so useful: I hope it might clarify things for you, too.

taniaannmarshall.wordpress.com/.../