I think the prof is right to say that it’s a difficult place to be. I know I’m different but nobody will believe me. I seem far too capable and too aware of other people’s behaviours and motivations.

I recently had to engage in a series of one to one interviews talking about my life. I couldn’t do it because my life is more like a series of moments than a narrative. Every time I try to present a narrative it rings false. I had to admit that I thought I was on the spectrum and I asked for some adjustments to be made. I was made to feel like dirt. Nothing bad was said. But I was pitied and my requests for changes were just ignored.

It sounds like you are having a hard time of things right now. I know how that feels, so please accept my genuine sympathy, and I hope that things improve for you sooner rather than later.

I don’t have any words to offer that might give you a quick fix, but I do notice a huge amount of understanding of your own situation in the words you’ve written, and I think that is a very positive thing.

Your situation sounds far from hopeless to me, but then again, I’m not the one experiencing it, and having stared at the world through a veil of hopelessness in the past, I really do empathise with how you are feeling right now.

What I would say is that in my own experience, serious depressions tend to be somewhat cyclical. What seemed hopeless can often turn around in a few weeks or months. Human brain chemistry often does us no favours, and can make a depressing outlook seem far worse than it actually is.

As I said above, you seem to have a good understanding of why you are where you are, and that may well provide you with the momentum to turn the corner. I suspect you’d feel worse if you didn’t know why you are feeling the way you do.

As regards my assessment, yes, I saw DT privately in Sheffield, and I thought he was very good, on the whole. He knows his subject area very well. I do, however, suspect that any professional with expertise in this area would provide an equally valid diagnosis.

In some ways I wish I’d not gone private, as my post-diagnosis experience will now be rather more disjoint than if I’d gone via the health service route.

Take care of yourself. If you need to chat more off-blog, use the contact form via the top bar, and I’ll write back.

James

Your whole reply was full of wonderfully familiar little gems of information.

I thought I’d pick this bit out though:

How much of a balm to us is the secrecy, the struggle to fit in, to relate, to get through each day? Now that the problem is actually acknowledged and the hiding (which seems to be the exciting, dangerous part–as if you are struggling to keep your balance in a precarious place and you know that you must not look down into the chasm) is unhelpful, I feel more afraid than I did before. I feel more isolated from my neurotypical husband than ever before

I feel this sort of thing too. I feel every bit as precarious as I did before I went for the assessment. I feel afraid too. What happens now?

I think I understand what you mean about the secrecy now feeling unhelpful. I want to tell people. I want to explain in that full on way that Aspies often have. But that isn’t likely to help my cause – indeed it may damage it. I need to get this next bit right, and I think that to do that, I need a great deal more advice. What if there aren’t right answers though?

In some ways my assessment has made me feel rather distant from my wife. Something about being told I really am different from the norm has made me feel distant from those around me. Perhaps I have to work through feeling different once more before I can feel properly close to others again. Maybe it’s just depression.

Who knows. I don’t right now.

I hope your daughter’s assessment goes well, and that it helps bring some order and peace into your lives.

All the best,

James

I think that the hardest thing about having an invisible disability is that we look so typical when we’re not typical at all. People just don’t get why sometimes, I can speak and sometimes I can’t, and sometimes I can listen and sometimes, it’s impossible, and sometimes I can can carry on a conversation, and sometimes, it’s unthinkable. And the hardest part right now, for me, is that I have to live with this inconsistency day in and day out in a world that keeps wanting this condition to be consistent.

Absolutely. This is still one of the really big problems I have with my wife. I think that perhaps part of the problem is that if you are having a bad time in general in life – perhaps suffering from depression, then you are well aware of having good days and bad days. Some days you feel more capable of getting things done than others. I rather feel like my wife sees the problems you’ve described above as just being this sort of good day/bad day problem. I don;t think it is, although I’m sure the good/bad day thing does have some bearing on it too.
It comes down to a problem of trying to see a difference through eyes that don’t experience that difference. It must be hard to do.

James

I think my doc had a slight theory of mind problem himself. Perhaps if he lived with my neurological system for a day or two, words like “high functioning” and “mild” would magically disappear from his vocabulary. One can dream. In any case, except when reporting on the ill-conceived notions of others, these words have disappeared entirely from *my* vocabulary.

I think that the hardest thing about having an invisible disability is that we look so typical when we’re not typical at all. People just don’t get why sometimes, I can speak and sometimes I can’t, and sometimes I can listen and sometimes, it’s impossible, and sometimes I can can carry on a conversation, and sometimes, it’s unthinkable. And the hardest part right now, for me, is that I have to live with this inconsistency day in and day out in a world that keeps wanting this condition to be consistent.

The world needs a lot of education about autism, and hopefully all of our autism/disability blogs will move the process along. You’re doing great work toward that end!

Haven’t been here in a while. But today, I felt I needed to see if you’d had your diagnosis yet… I have no problem over whether to congratulate you or not. I just think about how I’d feel and whether I’d see it as a reason to celebrate. So, congratulations.

I just wanted to say a few things.

Did you take the private route? And, given your location, I wondered whether the Professor you referred to was Prof DT? I would have preferred to see him, if money wasn’t a problem. And I may still consider it if things don’t work out for me. So if you did see him, I’d be interested to hear your opinion. You mentioned your wife being involved – did they not want a parent, as the best source of childhood development?

My GP referred me to a local consultant psychiatrist some months ago and I spent an hour or so talking and answering questions, at the end of which she said she was satisfied that a referral to the local specialist Asperger’s Team for a full diagnostic assessment was appropriate. (In fact she said she would arrange it “as a priority”, whatever that means).

However, I wasted months trying to get a referral elsewhere as I didn’t want to go local. (I have reasons to suspect their capability). But that has so far proven to be so difficult and time-consuming that I’ve had to give up that idea and I have now accepted the original referral and am awaiting a date from the local team (probably “end of July”).

But time is of the essence now. I’m in a bad place and things are getting worse. I seem to have lost the little ability I had to communicate at all. I deleted my blog a few months ago and have withdrawn from all online contact. My depression is increasingly bad, I’m withdrawing more and I’m regularly thinking about suicide.

I’m suffering all kinds of problems at work. My employers are becoming increasingly hostile with attempts to find fault in every area – timekeeping, sickness, accuracy, deadlines, even blocking of my flexitime working request (as a carer). The next few months hold the prospect of grievances and tribunals ahead.

I need my own diagnosis to try and get some understanding from my employer and family. I doubt that I’ll actually get that but at least I’ll have some recourse through the DDA which might help. (Technically I think I might already do as I suffer from Sleep Apnoea, which is getting worse).

Yes, I still suffer the “what if I am wrong?” worries almost every day. And the “maybe’s”… For me, maybe I will be able to exit this job in a beneficial way, maybe my family will take this seriously and start helping me rather than hindering me, maybe my marriage will finally be over (I think it would be too much to hope it will recover).

I’m not surprised that your AS was described as “mild”. I expect mine to be described the same way. But I agree that this can lead to a *more* complicated and difficult life. More obvious difficulties will normally lead to earlier detection and management. I’ve struggled through most of my life, only just managing to get by, and thinking that my inadequacies in certain areas were just the result of not having the necessary life skills to be successful. My longstanding depression and anxiety, my shutdowns and head banging (yes I still do this), which for a long time I thought were just the expression of a family history of mental illness, may be shown to be a consequence of trying to live with this unrecognised condition and to fit myself into a role for which I am totally unsuited.

If I’d had this awareness 20 years ago, I would probably be in a much better place now. Even 10 years ago would have meant that something could have been salvaged and that maybe my life wouldn’t have spiralled out of control so fast and so far. I’m at least 12 years older than you (chronologically at least!) so if I’d made this discovery when I was your age, I might have been able to save my marriage and maybe even have the family which I’ve come to want and now realise I may never have. I’m starting to accept the possibility that it is now too late for me and increasingly, suicide seems more and more inviting, and the only real solution. Whether that changes after my diagnosis (assuming I get it) I will have to wait and see.

Good luck James. I hope things work out for you and your family. I envy you.

I’ll take your congratulations, thanks!

I don’t know if congratulations is the right word, I would take it as such. I wish you good luck in the future.