Just turned 40. Don't want to spend rest of life undiagnosed

I have just turned 40 and I am seeking a diagnosis. I have been in a relationship for a long time, do well at work and have a family. On the outside I am a success. But I feel like I am being false all the time - like I am acting. I know how to get along with people on a superficial level, but it almost always feels forced and is all learned behaviour. It never feels natural. A lot of the time I feel emotionally empty and I wonder if I obsess over things to fill that void. For example I know I love my wife, but I cannot describe how or why in any emotional sense - but I can describe why on a logical level. I fall out with people often because I either upset them or misinterpret what they mean. I haven't made a new, substantial friend in over 20 years, but would love to build new relationships - but then I think it would be too hard work and it would stress me out. I have hidden 'tics' (controlled breathing, small thumb and finger movements, neck stretches, etc.) and feel like everything has to be balanced or divided by an even number, except if it involves my favourite number, which for some reason is five. Routine is vital, order is paramount and controlling situations is especially important. In the heat of an argument - usually as a result of an action I took because of my behaviour - I have been called "nasty" amongst many other negative labels, yet inside I know I am not a bad person. I hope I am not looking for a new label (aspergers/autistic) as an excuse, but knowing that I am would provide the biggest relief imaginable. Sorry for the long post.

Parents
  • Congratulations, Bennsky! It sounds like both yourself and others feel that some sort of action is necessary. Be encouraged by the thought that if the diagnosis doesn't happen quite as envisaged, that there is obviously still a significant issue that remains to be addressed. This feeling like an imposter is something which I believe many posters here can relate too. And when your diagnosis happens, it will be a relief; but perhaps not quite as dramatic as with other people, as you are probably quite well mentally prepared already.

  • Thank you. You mention about the diagnosis potentially not happening as envisaged. Is this from personal experience?

Reply Children
  • Perhaps birth difficulties, infantile illness (near fatal). traumatic childhood experiences and even a bit later on some accidents. Even some later life experiences, working with clearly disturbed colleagues. My childhood was in some ways idyllic, with a stable and affectionate home background. My education and employment were a real mess. There is no obvious intellectual impairment, but I would say some learning difficulties, with some ADD and dyspraxia. But I can also see how it might be partly genetic. I even wonder if the childhood illness was related to my living near a known pollution hotspot. (I predate the vaccine that a few people believe might be to blame. That's NOT a notion I subscribe too.)

    Your difficult childhood is probably highly significant.

  • Thank you for the detailed response. You mentioned PTSD. Are you suggesting your autism may be in part due to environmental experiences, probably at a very young age? I had a difficult childhood.

  • Partly! I was diagnosed at 61, having self-identified a couple of years earlier.

    To be honest, I went so well-prepared for the assessment that the diagnosis was over quite quickly and decisively.  But the diagnostician just labelled it as Asperger's/ ASD, saying that it might be counterproductive to list too many co-morbidities Well, I already had a very good idea what those comorbidities might be. Let's just say though that despite almost constant daily doubts on my side, in the last three years, I still always feel at the end of each day that the diagnosis got it about right. And I keep discovering new aspects of those comorbidities. For instance, I can see now Attention Deficit is almost certainly is a factor; although not usually in conjunction with hyperactivity. And recently, some researchers have begun to think that ADD (and ADHD) could possibly soon be considered an integral part of the spectrum with some people. Now that is something i was aware might happen when i first self-identified.. And I was told at the assessment that it was quite a distinct possibility. I also thought there might be some elements of PTSD. Again, the diagnostician thought that possible, and even lightly explored the events that might have led up to it.. ( I think you will generally find these days that diagnosticians will  avoid the revisiting of any details in depth that might be distressing. I found the whole experience to be constructive, and even enjoyable at times.) I still feel a light degree of PTSD could be an integral part of the mix, and this week I have seen some confirming research.

    Well let's just say that with such a complex mix, it is hardly surprising that most diagnosis doesn't go entirely to plan; particularly when one's own doubts are daily. But it also sounds like your concerns are very appropriate. Regardless of what the diagnosis eventually says, I imagine you will almost certainly find it worthwhile to pursue diagnosis, It almost always turns out to be a positive and constructive experience; even if the doubts are sometimes slow to go away.. The diagnostician will almost certainly explain that there is a cycle of acceptance and rejection that tends to go with the condition. With some that might last only about a year. In my case, I still get it on an almost daily basis. But it is manageable, as the acceptance side is always quite deep. Life does look brighter!. :-)

    Perhaps it might be better for me if i took the diagnostician's cue and desisted from exploring comorbidities. I can only say that I believe that when I am in my daily wave of doubt, (about being on the spectrum at all) that it is further exploration of the complexities of those comorbidities that enable my inevitable swing back to acceptance. Something for me is significantly adrift, for sure. But I'm definitely now able to draw some comfort from my experience..