For me the final diagnosis was a relief. After years of being passed from pillar to post, treating the effects, but never looking at the cause. Although in fairness, there was some childhood stuff that complicated the situation. I have found post diagnosis a bit of a rollercoaster. Coming to terms with who I am now, but also who I’ve always actually been and who I could have been if I’d been diagnosed earlier. All a bit futile really, but part of my journey I suppose.

Hi Riddler,

Thanks for sharing your thoughts.  I hope that it gets easier for you in time.  From reading about other people's experiences, it sounds like many people go through the stage of wondering how life could have been different if they had known earlier.  I am thinking about this myself (but still waiting for diagnosis, so not fully processing it yet).  At the moment I feel ambivalent.  On the one hand, I think that a lot of emotional pain could have been avoided if I had known earlier.   Also, perhaps I would have found a way to be more successful in my life and relationships (I've never had a long-term relationship).  But on the other hand, perhaps it was good that I didn't have any reason to think that I couldn't do things that other people can do.  I wouldn't have wanted to feel that I was limited by a condition.  (If I am autistic, I still wouldn't want to feel limited by it, and I would still want to have the same hopes and dreams as before.  But perhaps you know what I mean.)

If you feel like sharing this, how do you think life would have been different if you had known earlier?  (If you don't feel like sharing this, no problem.)  I'd also be interested to hear other people's thoughts on this.

I think that greater self knowledge at an earlier age would have changed quite a few things for me. 

Of course, I cannot be sure as "Parallel Jenny", diagnosed in childhood, doesn't exist and so can't be used as a comparator!  But I think it would have steered me away from certain ill-advised options in terms of careers and relationships.  I might have cottoned on to the extent of my masking much sooner, which would have meant that "Pretend Jenny" didn't get to make so many crucial life decisions while the real autistic me didn't get much of a say.  I think that I perhaps wouldn't have spent so much time seeking remedies, therapies or treatments for extreme anxiety and becoming "Queen of the Self-Help Aisle" without ever really being able to help myself (cos I was looking at the wrong books, pointing in the wrong direction and didn't know about "autistic anxiety").  The answer, I thought, was always in the next book, the next strategy, if I only applied myself a little more.  Self acceptance never happened and others, seeing me as a lazy, failing neurotypical instead of an autistic person with some need for accommodations, didn't accept me either.  Knowing could have put paid to some of that.

But, more importantly in my eyes, I would have been given the key to what has clearly been going on within my family over generations and I might have been given it in time to prevent a lot of heartache and trauma for my (now adult) children.  I might also have been able to extend more understanding towards the older generations of my family - I certainly knew we were somehow different but, just as I thought I could make greater and greater efforts to change and forge ahead in life, I applied the same logic to them and thought they were just not trying.  I blamed them (the filth, the poverty, the inability to get along in the world or pass on many practical skills) and it didn't occur to me that they were disabled and needed support because, well, they were just so intelligent and accomplished in other ways.  How, I thought, can the same person who has so many academic qualifications, not be able to cook a simple meal or remember to have a wash each day?  Seriously, I just didn't get it and just reading a little about "spikey profiles" and autism in general might have saved me from being so judgmental and unsupportive.  I actually have major regrets in this area because some of the people I was most critical of are now dead and I cannot take back some of the harsh words that were spoken and probably deeply affected vulnerable, unidentified autistic family members who were actually doing their very best already. 

For me not knowing has cast a long shadow.  And I don't know whether I can now do enough to spare the next generation.  Or, being ill, whether I'll even be given enough time to try.  :(      

I think that greater self knowledge at an earlier age would have changed quite a few things for me. 

Of course, I cannot be sure as "Parallel Jenny", diagnosed in childhood, doesn't exist and so can't be used as a comparator!  But I think it would have steered me away from certain ill-advised options in terms of careers and relationships.  I might have cottoned on to the extent of my masking much sooner, which would have meant that "Pretend Jenny" didn't get to make so many crucial life decisions while the real autistic me didn't get much of a say.  I think that I perhaps wouldn't have spent so much time seeking remedies, therapies or treatments for extreme anxiety and becoming "Queen of the Self-Help Aisle" without ever really being able to help myself (cos I was looking at the wrong books, pointing in the wrong direction and didn't know about "autistic anxiety").  The answer, I thought, was always in the next book, the next strategy, if I only applied myself a little more.  Self acceptance never happened and others, seeing me as a lazy, failing neurotypical instead of an autistic person with some need for accommodations, didn't accept me either.  Knowing could have put paid to some of that.

But, more importantly in my eyes, I would have been given the key to what has clearly been going on within my family over generations and I might have been given it in time to prevent a lot of heartache and trauma for my (now adult) children.  I might also have been able to extend more understanding towards the older generations of my family - I certainly knew we were somehow different but, just as I thought I could make greater and greater efforts to change and forge ahead in life, I applied the same logic to them and thought they were just not trying.  I blamed them (the filth, the poverty, the inability to get along in the world or pass on many practical skills) and it didn't occur to me that they were disabled and needed support because, well, they were just so intelligent and accomplished in other ways.  How, I thought, can the same person who has so many academic qualifications, not be able to cook a simple meal or remember to have a wash each day?  Seriously, I just didn't get it and just reading a little about "spikey profiles" and autism in general might have saved me from being so judgmental and unsupportive.  I actually have major regrets in this area because some of the people I was most critical of are now dead and I cannot take back some of the harsh words that were spoken and probably deeply affected vulnerable, unidentified autistic family members who were actually doing their very best already. 

For me not knowing has cast a long shadow.  And I don't know whether I can now do enough to spare the next generation.  Or, being ill, whether I'll even be given enough time to try.  :(      

Good luck with the CBT. All I will say is approach it with an open mind and you may get some benefit from it. (My AS assessor wasn't a fan of it for people on the spectrum, and you may find people on here saying it didnt work for them....however, everyone is individual and I actually benefited a lot from it). I told my therapist at the start I thought I may be on the spectrum and I'm waiting for an assessment. They were mindful of this but I suppose it depends who you get.

Oh god I'm paranoid someone in real life can work out its me but then I don't know why they'd be on a forum for autistic people! 

All the best, don't feel you have to reply :-)

Hi Out_of_step,

Thanks for being willing to be so open about the things you've experienced.  Also thanks for your kind words supporting me in being open as well.  I would never be able to talk so honestly about my issues if this weren't an anonymous online forum.  In fact, even now it scares me a bit, and I just hope that nobody who knows me in real life is reading this and could work out who I am.  It's encouraging to read that you went through the same process of 'working yourself out' by talking to other autistic people online.

It sounds as though your difficulties aren't necessarily obvious to others.  I'm glad that you found the answer about yourself (that you're autistic) despite that it wasn't obvious to others or perhaps even yourself.  I can relate to some of the things you say, about needing time to recharge after being around people.  I could only ever teach part time, and even that was really exhausting.  Also, just being in the workplace, in a public place all day every day, I would find very difficult and tiring.  I work from home now and find it easier, even though it's isolating.

This morning I had an email from the NHS counselling service.  I've been on the waiting list for CBT since February, and now my appointment's come up.  When I first went on the waiting list, I didn't know the reason for a lot of my issues, but now I think that autism has been a big factor in a lot of things.  I wonder if my therapist will be experienced of working with autism.  I hope so - then I might be able to ask them for help in understanding it.  If not, hopefully I can still work on the difficulties themselves.

I hope that your experience of teaching native speakers goes well.  I sometimes found it helpful to think of teaching like a performance (i.e. people can't necessarily see what's going on beneath).  But I know what you mean about being worried about the social side of things, rather than the actual teaching.  Maybe it's the fact that the social side is less structured.  That's the case for me, anyway.

I just want to say I can relate to stuff you have said and I was diagnosed in my thirties earlier this year. Firstly, I think it's good you're coming on here and trying to work yourself out - it's what I did! I always wonder if "neurotypical people" are always trying to figure themselves out as much as ND people seem to appear to.  I think from the people I know,  the answer is probably not. Secondly, I want to address some points you made. You said making life decisions had been difficult and I feel it has been the same for me, especially when it's not 100% been my choice (like getting a house with my partner) and I've also learned a bit about how autistic people can find transitions difficult. This makes sense to me now. (Edit - I'd also add I feel other people are able to just "get on" with their lives for the most part...even the ones who have bad anxiety but no AS...whereas I feel it's difficult).

I too teach EFL! However I'm going to be teaching native speakers this year too and its actually the social side of things I'm worried about such as small talk over anything else.

You said about the internal experience of anxiety which I can completely relate to. I think it's part of my masking. Up until i got my diagnosis, i think i carried on regardless, trying to be the best i could. (Eg going to social events when i didnt want to because of the anxiety. Ive read about people who dont do things because of the anxiety but not me...I think ive always pushed and pushed myself. It's like I've never said no to anything and in the end it takes a toll one way or another). I think this is to do with people pleasing but also not knowing myself enough, or being able to identify I don't want to do something and having the confidence or realisation I can say no. I am very easily led by others, especially if I cannot make a decision. This anxiety to me seemed a natural part of life up until I started reading about AS.

 I've had a lot of anxiety from work but on the whole I present very well and most people wouldn't know. It's not as bad now but in the past I'd hold it in till I got home. I think it's the same with my parents to be honest. I dont think they have ever actuslly known as an adult how anxious i can be. Even my partner who knows me better than I do didn't sense my anxiety on my AS assessment day! I do think  some of it is also to do with alexithymia and alexithymia was also mentioned in my report. Now I understand better things which can give me anxiety which I would say maybe *wouldn't* give a non AS person anxiety. 

Edit - also the bit about needing down time and people not realising this. It's difficult to get this at work unless I go and sit in my car. Again, in the past I think this was another "carry on regardless / masking" thing and not actually knowing myself as I tried to keep up with others at work. But when I did realise I coukd have control over this, I still struggled and I don't know if it was my socisl skills or body language but people didn't seem to pick up on it. (I noticed other introverted non AS people at work didn't seem to have this problem). I've since realised, from comments at my assessment, I have to "work things out" in social situations (even in one to one) but my brain works very fast to compensate for this so no one actuslly notices. I feel this additional element of brain power, which I think non AS people maybe don't use as much, contributes to the need for down time and recharging.  

I'm awfully sorry it's turned into an essay, I hope it helps and its also my way of getting things out of my head because I don't actually talk to anyone about any of this.

Hi Jenny,

Thanks so much for sharing your thoughts and feelings.  It's particularly helpful to me to read about how you describe what a hidden disability is.  It sounds quite isolating, the fact that other people don't see or understand what you're going through and so aren't able to appreciate it.  I can relate to elements of what you say: for example, needing to rest on my own after stressful interactions.  On driving: I've actually never learnt to drive; mainly because I've always been worried about the environment, but also because I live in London where there are lots of alternatives e.g. public transport.  But I also don't like the idea of driving in itself.

Like you, I also feel that my internal experience of anxiety etc isn't necessarily visible or obvious to others.  I've also had a strong sense for years that I haven't managed to live up to my potential, but I haven't been able to put my finger on why that is, or how to fix it.  I've had therapy for low self-esteem several times, which has always focused on trying to believe that actually I have achieved a lot, and everything's OK.  But I've never really believed it; deep down I've known that something is wrong.  I hope that, when I have my assessment, I will be able to talk with the assessors about this, ask them if I do have a hidden disability and if so, in what ways has it affected my life and stopped me moving forwards.  For example, is it that my poor social skills have affected my confidence, which has limited what I have done?  I really want to try to understand all of this.

Ultramarine said:

at the time I imagined that it would enable me to overcome my shyness and become more confident than I am now. 

Oh, how this resonates with me!  I always, always thought I could overcome my anxiety and I started drifting towards the self help sections of the library from around age 13.  I remember at that time it began with books such as "How to win friends and influence people" by Dale Carnegie and "Self help for your Nerves" by Claire Weekes, but over the years I gathered whole book shelves of what I now call "unhelpful self help".  I couldn't ever say that they were completely unhelpful, mind, just that they never really hit the spot and I still found myself quaking in my shoes and avoiding situations at the last minute, often feigning illnesses that seemed more acceptable than my anxiety.  I learnt early on that, if I did mention my anxiety, it would be dismissed with comments like, "Oh, everyone gets a bit nervous but they just get on with it!"  And I just couldn't. 

I even attended various courses run by Anxiety UK and the Chamber of Commerce (esp. for presentation anxiety) but still, the anxiety remained.  I can clearly remember one presentation I'd worked long and hard preparing but which, at the last minute, I couldn't do and had to hide in the toilets with "stomach cramps".  Not good on the day and not good when it comes to performance reviews and the pattern is revealed.  Another job I have to leave.  

But, yes, the silver lining.  I do believe that many of us are super-empathic and that this relates to our huge sensitivity and ability to feel into situations.  In something like counselling and, I imagine, any sort of 1:1 work, this is a major strength.  Plus, when we do find ourselves coping better, we have gathered very useful information on what does and doesn't help and this can be shared.  Also, I think our heightened senses can make us more perceptive and creative.  So choosing work and activities that align with these strengths can, I believe, make for a much happier life.  

The disability thing has crept up on me.  I've always known, of course, that there were things that I found more difficult than others and, for example, when it came to driving this involved a lot of stress and effort and I still struggled so much that within our family we jokingly referred to my "driving disability".  I needed to deskill driving as much as possible so's I didn't feel that too much was coming at me at once and feeding into my stress levels.  And I can clearly remember things improving when I moved to an automatic.  Even here, though, when my husband went to choose a car and made it clear to the dealer we were only interested in automatics, the dealer actually asked, "Oh!  Is your wife disabled?"  And my husband said, "No" but inside his head was thinking, "Well, in a way..." 

It doesn't feel clear cut to me even now, but looking back there have certainly been things I just felt unable to do, without being able to fully explain why because, at that time, I didn't have the language to articulate it all.  Ordinary, everyday things, also seemed to take more out of me and I always needed a long recovery time.  Job interviews were particularly demanding and yes, I know that few people enjoy the process, but do they have to lie down in a darkened room for the rest of the day to recover?

So yes, there's always been a strong sense of feeling different and extremely anxious and I'd say that it has been disabling.  Just not in an obvious way.  And this, in itself, has made matters worse because it meant I never received any understanding or compassion from others - I was just a shirker, even though I knew I was trying much harder than most just to get by. 

I'd also say that becoming isolated can be an effect of hidden disability but I'm guessing this depends on the level of free choice about it.  If I always intended to become a hermit then nothing has prevented me from doing what I wanted to do.  But if it's due to high anxiety, lack of acceptance or accommodation, inability to cope or even function at all some days then that to me has crossed a boundary. 

Hi Jenny,

Please don't apologise; it is very interesting and helpful for me to read about your experiences.  Thanks so much for your thoughts and your advice about reevaluating the work that I do.  I actually only do a small amount of teaching now.  Most of the time I do unrelated work.  I know myself better now than I did in my twenties, and I now know that I can only ever do a small amount of teaching.

I started off working with small groups of adults, then worked 1:1, and now work 1:1 online.  It is strange because I really like the times when I feel that I'm helping someone else to learn and grow.  It is great to talk to someone who is really motivated to learn, and I feel I'm making a direct difference.  But on the other hand, teaching is very uncomfortable for me - I'm not sure how much it shows from the outside, but I do find it difficult.  I also feel that my competence at teaching is limited.  The way you phrased it - 'anxiety can rob us of our skills' - resonates with me.  

In retrospect, I don't think teaching was a good choice for me, but at the time I imagined that it would enable me to overcome my shyness and become more confident than I am now.  Also, I found making life decisions incredibly difficult when I was in my twenties.  I don't know if this is an autistic thing.  I was overwhelmed by all the possible options, and didn't make a good choice.  Thankfully, since then I have been able to switch to other types of work, and only do a bit of teaching.

Thanks a lot for the Aucademy video recommendations - I will definitely have a look.

Talking about disability - I haven't yet been diagnosed, so it's possible I'm not autistic, but if I am autistic, I think I would feel a bit uncomfortable saying that I'm disabled, because I've read about people who can't leave the house because of sensory issues, for example, yet I can go out.  I would feel that I don't really have the right to claim that I'm disabled.  Yet I do feel that I'm limited in terms of my social skills.  I haven't really managed to get anywhere in terms of my career, and I don't really know why.  I feel that I haven't really reached my potential.  I've never had a long-term relationship.  I feel isolated a lot of the time.  Is this a sign of hidden disability?  I don't know.  It's all quite difficult to think about and come to terms with.

I am sorry to hear about your struggles and other people's comments, and it must be frustrating to think about how things could have been different.  I guess that any struggles we go through help us to empathise with others - for me that is a kind of silver lining.

Many thanks Ultramarine.  It is truly a mixed bag and I'm not at all sure I would now change myself that much even if I could because there are many positives and also many parts of myself that, whilst perhaps unconventional, I cherish because they've added a richness to my life that wouldn't otherwise be there.  But I've also struggled long and hard to remain in jobs that didn't suit me and, given my autistic identity, were never going to, irrespective of how much I tried to "improve myself" - i.e. be a decisive, outgoing, sociable team member who could climb those greasy poles and achieve the sort of income my parents never could.  And I've tried in vain to overcome certain aspects of myself that it turns out are hardwired into me.  It was similar to trying to change the colour of my eyes! 

When it comes to autistic anxiety, I'd suggest looking at the work of Dr Chloe Farahar and Aucademy.  They have a lot of free material on Youtube and on their website and only a couple of days ago I was listening to the one on young people's mental health and burnout which I think gives a useful perspective on autistic anxiety, the magnitude of the issue, the usual antecedents and what does and doesn't help. 

Continually trying to power through, improve yourself and banging up against the same issues time and time again (as I did, believing that eventually I'd adjust and that what I was doing was some kind of health exposure therapy) might not be that helpful (although I must emphasise that this has been my individual experience and others' may well be very different).  Therapies (incl. CBT, cognitive analytic therapy, existential therapy, even person-centred therapy and many, many others) likewise weren't that helpful to me because firstly I was always masking and automatically playing the therapy game without really drilling down into my core, and secondly nobody knew I was autistic so no adaptations could be made, nor could my issues be viewed through the appropriate lens (which should always have been adjusted for my neurodivergence and not leant towards me straining to become the kind of neurotypical person I felt I'd been educated to be). 

I was finally diagnosed a couple of years ago at age 55.  This came AFTER significant mental breakdowns (autistic burnout?) in other family members which, in spite of our very best efforts in life, echoed breakdowns experienced by the older generation of my family which were always put down to some kind of weakness or ineptitude and thought to relate to their own choices (choices we thought we couldn't make because some of these wonderful characters were talked about as cautionary tales of what not to do and how not to be and we were going to avoid that!).  Even several years of contact with crisis and early intervention teams didn't put us on the right track, probably because they didn't have that much training about autism so they kept sticking unhelpful labels on us and treating us with varying and increasing doses of psychiatric meds that never worked.  Nor did much of my counselling training because there was, at that time, no module on neurodiversity and none of my tutors ever spotted that I was autistic, even in spite of difficulties that I was very honest about and watching me in skills practice.       

I'm now trying to make up for lost time but really, even knowing 10 years earlier might have made a significant difference and at least avoided lots of time wasting when we were desperate and in crisis.  I'm left with the feeling that yes, there is much to appreciate and even enjoy within my family.  But some of this needed unlocking and freeing up from the harsh judgments of others that have hemmed us in, fed into our high levels of anxiety and left us feeling very unsafe in the world.  And yes, some of our experience did relate to a kind of hidden disability that was dismissed by others, especially in the workplace.  A couple of times I was even made redundant and the phrases they used now seem to me to refer to me being autistic  - usually prefaced by, "You're very talented but... and followed by criticisms of me keeping myself to myself and behaving differently from others (yes, whilst still doing my job, but this made no difference).  If, at the time, I'd known I was autistic I could have at least fought back with various pieces of disability discrimination legislation and used their own "positive about disability" kitemark and what they were supposedly doing about this in the process.  Not knowing left me de-clawed. 

Sorry - I've started an essay!  I did at one time think about teaching myself but for me 1:many is very stressful and I never really overcame this (although I did do a bit of tutoring for people with chronic health conditions).  1:1 is much more comfortable and one of the reasons I reinvented myself as a counsellor.  I imagine 1:1 lessons would have a similar feel, particularly if you built up a rapport with your clients.  I do like to interact, but having more control over the kind of interaction is important.  Working online is also a good idea because, again, it increases your sense of control and certainty over the process.  It also eliminates the need to travel.  This reduces anxiety and that's really important because, let's face it, anxiety can rob us of our skills and prevent us performing as we otherwise would. 

So, overall, I'd suggest reflecting on the scenarios that make you feel more or less comfortable or anxious, which elements of this might be amenable to change and which need to be accommodated, then try to tailor your choice of work to fit if at all possible.        

Hi Jenny,
I'm so sorry to hear that you're ill, and I hope that you will have the chance to do and say the things that you want to.  Thanks for your open and honest reply to my post.

I can relate to many of the things you say - for example, being the queen of the self-help aisle, and thinking that you just needed to apply yourself a bit harder, or use a different technique.

Can I ask, what is 'autistic anxiety' and how is it different?  I am anxious most of the time, and I would be interested to understand more about this (even though I still haven't yet been diagnosed).

Also - a thorny question - would you say that autism is always a disability, or does it depend on how much it affects somebody's ability to do things?  For example, I read recently that Bill Gates might be autistic, yet if he is, it looks like he has been able to do everything he wanted to do in life (although obviously I can't know from the outside - and he hasn't been diagnosed).  And also Anthony Hopkins is autistic yet he is a very successful actor (although obviously I don't know how autism affects his personal life).

Thanks for sharing your thoughts about how you feel life would have been different, had you known about your autism earlier.  Do you mind me asking, at what age were you diagnosed?  I am 38 and will probably get my diagnosis at age 39 because of the wait for an assessment.  I too feel that I might have made different work decisions. I trained to teach English as a foreign language and I hoped it would help me overcome my social anxiety, but it never did, and it was extremely difficult at first (I felt sick with anxiety for the first few months).  I now teach one-to-one, online, which is a bit better but I still don't know whether to stick with it or not.  But it does force me to interact with others.  More importantly, the students seem to give me positive feedback, so at least I am helping them.  I only teach part time - I could never do it full time.  The rest of the time, I do other work.