Thanks aidie, it wasn’t the best 10 years of my life, but as you say I’ve re-qualified recently, and had a fairly successful, 25 year catering career before that. I understand now that she had a lot of mental health issues herself. I would have just preferred she didn’t take it out on me!

onwards and upwards.

sorry your step mum was so nasty that couldnt have been nice. But you, yourself appear to be fine.

You did all right to become an electrician. Electricians are highly sought where I live. 

It's hard to know for sure. I struggled at school for many reasons, but partly because I felt I just didn't get it! I didn't understand the rules, I don't think I learn in the same way that you're expected to, I found friendships difficult and hard to come by. It didn't help that I was quite an angry kid because of the abuse at home. Therefore if someone wouldn't play with me or do what I wanted, I just beat them up, broke their stuff. Probably a cry for help in a lot of ways, but it was the 80's. Nobody gave a ***!

When I got to secondary though I decided to calm down and try and get on. Partly because I was alarmed to discover that I had some sort of reputation so all the tough kids from other primaries were waiting to seek me out. I found it odd. I knew I didn't hit other kids because I enjoyed it, but I couldn't quite explain why.

Now I think I'm relatively clever. Not extensively educated, but I can hold my own and adapt quite easily. In secondary years my Dad had remarried the stereotypical Disney Evil Stepmother. Her way to help me with reading and maths, for example, was to stand over my shoulder and smack me around the head every time I made a mistake. It doesn't exactly endear you to learning, being hit and told your stupid.

To get back to the point though, I can't help think that if someone had taken the time to ask why I wasn't getting it, why I only had one friend and never really went out, a lot of those things that could be seen as early signs, things could have been different. Like I say, I'm clever in my own way and have learnt to adapt and manipulate the world so I can survive and thrive in my own portion of the world. I just have this niggling feeling I could have gone a little bit further or things could have been a little bit easier, if I'd known earlier.

At the same time though, I realise it hasn't been a straight forward diagnosis. I have self referred and largely self funded, almost 20 years of therapy to get the this point. No one can deny there was a lot of childhood stuff to address and sort out. Again though, is it chicken or the egg! Did childhood stuff happen because I was undiagnosed, which then clouded the path to diagnosis, or was that stuff always going to happen regardless and therefore the journey is what the journey was (sounding a bit like Forest Gump)

Ponder on me thinks, but I'm happy now and feel privileged to be part of this community.

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. 

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.  :(      

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.

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.

Thank you Stephen!

thats the way it is kinda done

np u'll go far

You replied to everyone individually. That's sweet. 

Hi JennyButterfly,

Thanks for your reply.  I can relate to what you say about going through several rounds of therapy and never feeling like it got to the bottom of things.  I also have a whole range of self-help books on different subjects (e.g. eating disorders, anxiety, social anxiety, low self-esteem, OCD, etc) and there were days when I thought I would never be able to improve my mental health because I didn't know where to start - I had so many different things I needed to work on.  It makes complete sense if I have a 'spectrum condition' which involves different aspects or traits.  I really hope it is this, because in a way that would make sense of all my problems at once.

I'm glad to hear that you've felt increasingly stable as time goes on.  Maybe the whole process of coming to terms with diagnosis is like adjusting to a new identity: over time, autism gets integrated into our knowledge of who we are.

You're absolutely right that probably the thing that worries me most is the uncertainty.  I've read that it's an autistic trait to find uncertainty difficult; this is certainly the case for me.  Yes, I am definitely going to get a diagnosis, because I doubt myself a lot and I think a diagnosis would help me to feel more settled and to accept things.  Also, I don't feel comfortable telling people I know about my autism until I get professional confirmation.  I'm not intending to tell many people: only those closest to me.  But I suspect that some people may not believe that I'm autistic, which would have the potential to unsettle me if I didn't have the diagnosis.

Thanks for the kind words and for understanding my point of view so well.

Hi Aidie, thanks for your reply - it's reassuring to know I'm not the only one.
It sounds like the journey of coming to terms with the diagnosis continues for a long time.  If I am diagnosed as autistic then I imagine that, like you, I might also have days when I think they got it wrong and they made a mistake when diagnosing me.  Hopefully it all gets easier in time.

Hi Sport, I'm sorry to hear that.  But good to hear that the diagnosis helped you to understand the reasons for certain things from childhood.

Hi Caelus, I agree with you that the label itself is not that important.  I don't think I mind the idea of being diagnosed as autistic in itself, I think what makes me worried at the moment is the uncertainty in the long period until my assessment, so I can't really adjust to my diagnosis or know what it is for sure until then.  

Yes, I think that giving as much information as possible beforehand is a useful strategy. My daughter saw a female psychologist for her assessment, I think she found it more congenial. 

That's good, it sounds like it went fairly smoothly.  I guess I am nervous mainly because I have read that women often get misdiagnosed, but hopefully that won't happen.  I've sent in my forms now, plus a load of extra stuff I'd written about my traits and memories from childhood.  I think probably they will know from reading that.

In the end my assessment was very straightforward, the psychiatrist put me at my ease, as much as was possible, and was aware of how stressful being assessed could be. I rather suspect that he was reasonably convinced that I was autistic just from reading the questionnaire. Within 15 minutes he told me that he was going to give me an ASC diagnosis and the rest of the time we talked through my anxiety, depressive and OCD problems.