Diagnosed: Part 2

Where do I start?

Two weeks ago I was diagnosed with Asperger’s Syndrome. That didn’t come as a surprise – I have after all been talking on this website for nearly eighteen months now in a matter-of-fact way as though it was already a done deal. The diagnosis left me feeling both shocked and relieved. Yes, shock. It’s all very well researching and then convincing yourself that the balance of evidence says you have Asperger’s, but its a very different thing to be told it by someone who is qualified to do so. There is now no room for doubt. I was right, and I no longer need to worry that terrible what if: What if I am wrong?

Wednesday 12th May 2010 wasn’t a life changing day for me – the life changing day was the now forgotten date back in autumn 2008 when my wife sowed the seed in my mind that I might have Asperger’s. May the 12th was however perhaps the start of a new chapter in my life. Diagnosis may mean I can move forward with confidence in my life. Diagnosis may mean that I can negotiate a better way of working. Diagnosis may mean that I can get some help in making my marriage and other relationships work a little more smoothly. Diagnosis may bring me some peace of mind. Maybe.

But all that is for the future. Right now, I still feel a little in limbo. Whilst I was told at the end of the assessment that I have Asperger’s, the report has yet to land on my door mat. And without that a little part of me still hasn’t accepted things, and I haven’t felt able to ask myself what next.

But I can’t put off writing any longer. My pressure cooker of internalised thoughts and feelings is likely to explode soon if I dont let some of it out. My anxiety is back too, and is not giving me an easy ride.

So. What happened on D day?

For a start, I took the day off work, despite my assessment not starting until 17:30. My thinking here was that if I went to work, then I’d either arrive at the assessment overly stimulated from work, or I’d just sit at my desk all day getting nothing done other than getting more and more anxious. My parents had been drafted in to collect the kids later in the day, and to put them to bed for us. Both knew about the appointment, but didn’t seem to want to mention it. I think the nearest we got was when discussing food for the evening. Might me and my wife want to go out for a meal when we get back? I doubted it, but suggested a takeaway. My mum commented that I might feel quite down when I got back, so perhaps takeway was the better option. Hmmmm. After a little reflection, this meant only one thing to me. That she though I was going to come back having been told I didn’t have AS. Oh well. I decided that I really needed to put that out of my mind.

So, instead of work, my wife and I went shopping for the day. There is of course a risk in this too – the large shopping centre we went to could easily sensorily overwhelm me just as much as work. We were lucky – with it being a week day, it was reasonably quiet, and we took our time, not rushing or feeling under any pressure to be anywhere.

As the afternoon progressed, I started to get more nervous, and less able to potter around the shops. The final half hour before we had to leave for the assessment went on forever. When we did leave, I drove. This again was a calculated move on my part – by driving, I had to concentrate on the roads and the other cars, leaving little brain capacity for nerves and anxiety. It worked, for the most part, but as we pulled up and parked in the church car park next door to the building where the assessment was taking place, the anxiety once more had room to express itself. I felt terrible.

The twenty minute wait for the assessment to start went on forever, and during this time, I found myself shaking and unable to focus on anything at all.

In complete contract, the next ninety minutes or so passed in a rushed blur. After an initial five minutes or so where I found it difficult to come up with the right words, I managed to relax, and Special Interest Number One of the last eighteen months or so was able to take the floor and ensure that I got my point of view across.

Ninety minutes. It’s not long to impart enough information to base a diagnosis on. Whilst various subjects were covered in enough detail, I ultimately left feeling that others weren’t covered, and in some ways that left me feeling cheated.

After the assessment, my wife was ushered in and asked a few questions, but the Prof had already made it clear that he’d reached a conclusion about my diagnosis.

And that diagnosis: Well, I have Asperger’s Syndrome. I sank into my chair when the Professor finally said it. Those words felt like they had weight. My feeling of relief was huge.

And then some more detail: I have particularly difficult issues with social interaction and theory of mind – I don’t read many nonverbal cues, and as I don’t have a good theory of mind about myself, I find it difficult to put myself in other people’s shoes. In addition, I clearly have many day-to-day problems caused by Dysexecutive Syndrome – or executive dysfunction as I’ve referred to it throughout this blog. The Professor likened my problems in this area to ADHD, although stressed that he didn’t think I had ADHD itself.
There are also some areas where I have less of a problem. I used a great deal of expression during the assessment, and was able to convey my point of view well. The professor also noted that I was very well aware of my own limitations, and had clearly made adjustments throughout my life to try and cope and work around them – long before I suspected I had AS.  These were all things, he said, that he didn’t see all that often in people with Asperger’s. The professor used an interesting phrase to describe this. He suggested that my Asperger’s was in some ways mild. He then went on to clarify this by saying that in many ways this made the life of the affected person more complicated and difficult, as they were far more aware that they were different, and they often saw the consequences of their differences and had to deal with that.

I understand where the Professor is coming from on this, but I was, and still am somewhat uncomfortable about his choice of language. I don’t like the use of the word mild, because I feel it conveys the wrong message. Not to me, as such, but to other people who don’t understand the condition well. I can understand and accept that I have difficult problems in some areas, and far less of a problem in other areas that encompass the AS definition. But try telling someone that you have Mild Asperger’s. It clouds the waters, and almost certainly makes the situation more confused – if its only mild then clearly it isn’t much of a problem, is it?

So there you go.

When we got home, my mother was keen to know the outcome. She eventually asked after haf an hour or so, and I told her very simply – I have Asperger’s. Clearly, the right response was difficult to find. She said that it had been obvious from my mood – I was elated, and that actually the important thing was that I made the most of things. Ummmm…. Thanks mum.

–

So, where next?

I’m not sure as yet. I’m hopeful that the arrival of the written report will act as a catalyst for moving things forward. Both my wife and I are likely to visit the Professor again for an hour of talking about what happens next. I think we both need to hear about the pros and cons of being more open to others about my diagnosis. My AS has clearly impacted on my work life in unexpected ways over the years, more often than not getting me into trouble or causing unnecessary friction. We also need to hear about what might help both of us going forward.

Would being open about my AS make things better or worse? Do you have any strategies that might make life more straight forward?

As always, I’d love to hear your thoughts.

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9 Responses to “Diagnosed: Part 2”

  1. TheSpecialKid  on May 26th, 2010  (Quote)

    You lucky bastard!… Well, in some ways…
    I’m still waiting for myself to become ready to tell someone about my thoughts, and maybe, and only maybe (though I have a burning wish for it) I will get a diagnosis later.

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

    Reply

  2. eaucoin  on May 30th, 2010  (Quote)

    We have finally reached help for our youngest daughter, and her assessment will take place in August. I came out only briefly elated, then devastated. The psychologist said she felt the need to apologize to my daughter for how much she has already been through (in seeking help). It was as if someone had given me permission to mourn. We had been so concerned about getting through the next day each day that we were kind of spared the big picture. 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 more as if my trying to accomodate my difficulties in secret is a penalty which I could pay by myself as long as it was hidden. Now I can’t stop thinking about what all my efforts to have a normal life have cost my husband and my children. I guess this is negative talk, but some days I think I would prefer to think autism is a secret I could have kept. I guess this is just the fear of change.

    Reply

  3. Wild Animal  on May 31st, 2010  (Quote)

    James

    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.

    Reply

  4. Rachel Cohen-Rottenberg  on May 31st, 2010  (Quote)

    James, I very much relate to your reaction to being told that you have “mild Asperger’s.” I got a similar line from the person who assessed me: “High-Functioning Asperger’s.” Say what? Just because I can string sentences together and have some insight into myself, that’s high-functioning? Did the guy notice what a wreck I was the ENTIRE TIME??? Did he hear me say what my life feels like?

    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!

    Reply

  5. I can't remember what my pseudonym was  on June 30th, 2010  (Quote)

    I think I certainly do have “mild” Aspergers. The sensory issues only come out in me when I’m calm and not thinking. So I would say I’m “higher” functioning than you.

    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.

    Reply


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