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Hello (Mid 30s female supposedly on the spectrum)

Noetic

Hi,

I am in my mid Thirties and was diagnosed as being on the autistic spectrum about 10 years ago. I have thought of myself as semi autistic since my mid teens, and I guess there is something true about my diagnosis. I certainly had problems socialising, spent hours by myself sorting and arranging things and had strong obsessive interests in things like nuclear bombs, Woody Allen and the holocaust in my teens. I also had sensory issues and was terrified of a lot of things due to sudden noise etc.

But then I am an only child and my parents were fairly poor, so I can't tell what I might have been like had I been in contact with other children from an early age.

As I was not "properly" diagnosed (a few sessions with a neurologist specialising in adult ADD, then a two hour chat with a retired psychiatrist who worked with autistic individuals all her career) and can't afford a full assessment, I remain sceptical of the diagnosis.

I am in a stable (albeit unconventional I guess) relationship and hold a steady job where I am appreciated for my reliability, sense of order and attention to detail. I take great pains to ensure information is communicated well, as I am only now getting the hang of this whole theory of mind thing and am becoming aware of how badly people in organisations generally communicate information between departments.

I do still struggle to communicate personal stuff (and as a child never reported illness to my parents, the first they knew of my many ear infections was blood and pus running out of my ears) and still have some auditory processing issues so written communication works best, but have become used to telephone calls enough to be able to make them now. This is a relatively recent development and I feel has been aided by listening to podcasts and audio plays related to my interests, which seems to have given my ears and brain training in listening that it was obviously lacking before.

I have also over the past five or so years managed to channel some of my interests and need for routine into daily walks (to keep my weight down and give me time to decompress and "stim" out in nature where it doesn't bother anyone) and keeping my household in order, so I am coping a lot better with daily living skills than I was ten years ago.

I have several letters from various specialists I was seeing privately attesting my diagnosis but as it was never done on the NHS I do not think it is even mentioned on my NHS records. I am considering leaving it that way. I am unable to talk to my parents about things like that as they get very emotional and upset when I mention feelings of confusion and inadequacy I had in childhood, or difficulties I experienced. In their minds I was smarter than I ought to have been, and therefore I had nothing to complain about. 

My interests have revolved heavily around autism in the years after initial "diagnosis", and I signed up here hoping to meet a few people and maybe help me decide whether I should just leave this "chapter" of my life behind or whether there is any way for me to know for definite one way or the other (preferably without upsetting my parents by digging into my childhood too much - they don't seem to remember a great deal anyway).

  • Interestingly I've disclosed my diagnosis with my line manager this week, and instead of the "it's all in your head, you're just imagining things" type reaction I actually got a response of "That explains a lot". Didn't expect that at all. 

  • Noetic said:

    [quote][/quote]

    For what reason do you think that?

    I felt that way after I was diagnosed too.

    I'm not sure why, or quite what I was expecting, but I did have a "is that it?" feeling about it all.

    I never had what I consider a "proper" assessment, eg talk to parents, full scale IQ and other tests, full ADOS or similar test. Just sat down with first a neurologist specialising in ADD (as I had trouble focusing on work and was sick of not being as organised as my personality, and my family, wanted me to be) who quickly decided it had to be AS, then a written.

    Then later spoken exchange with a retired psychiatrist specialising in ASD all her career, who was to do a write up for my records. 

    She also seemed to think it was clear I'm on the Spectrum but by that point I'd already started reading up on autism so I don't know if I can rely on my recollection not being tainted by that. 

    I did have an earlier fascination with autism, knew my "emotional intelligence" was below what it should be - I don't recall if this is because of what others told me about myself - there were many incidents in childhood where apparently I upset people without realising, sometimes badly to the point where parents had to come into school - and secretly considered myself semi autistic since my late teens. 

    That all pre dates my knowing about HFA or Aspergers or having access to the Internet (so I know those sentiments and experiences were not tainted by reading about AS), but it's still just me recounting my experiences and confusion and does not seem to constitute a professional, proper ASD assessment. 

    This was all done privately as well, hence my thinking it isn't even on my records even though all correspondence went to my GP as well. When I asked my GP for a referral I was told the consultant psych locally 'does not believe this exists in adults' (Unsure if he meant ASD or ADD, I never had an ADD diagnosis but was prescribed ADD meds for some time my that GP. I feel like I've caught up neurologically as far as the organising myself part is concerned)

    Anyway, that "is that it" feeling, I know that very well. 

    This sounds very similar to the assessment I had.

    However, having read around things since my diagnosis, I've come to realise that a more detailed diagnostic analysis (full scale IQ tests, etc, etc) is probably not neccessary in adults.

    The traits of AS seem to be more clearly defined in adults, and we are more able to articulate what it is like to be us and how we differ from everyone else, then in, and for, children.

  • autismtwo said:

    maybe you just need a letter from your doctor to clarify, it will be on your records

    I'm not convinced anything is on my records. All diagnostic letters went to my GP but when I tried to get a referral for a "proper" assessment (which I would have had to pay for myself) some years ago, I was told something along the lines of not to bother because the local consultant psych doesn't believe in ASD or ADD in adults. 

    I will try to get access to my records to perhaps find some clarity. 

  • Scorpion0x17 said:

    For what reason do you think that?

    I felt that way after I was diagnosed too.

    I'm not sure why, or quite what I was expecting, but I did have a "is that it?" feeling about it all.

    I never had what I consider a "proper" assessment, eg talk to parents, full scale IQ and other tests, full ADOS or similar test. Just sat down with first a neurologist specialising in ADD (as I had trouble focusing on work and was sick of not being as organised as my personality, and my family, wanted me to be) who quickly decided it had to be AS, then a written.

    Then later spoken exchange with a retired psychiatrist specialising in ASD all her career, who was to do a write up for my records. 

    She also seemed to think it was clear I'm on the Spectrum but by that point I'd already started reading up on autism so I don't know if I can rely on my recollection not being tainted by that. 

    I did have an earlier fascination with autism, knew my "emotional intelligence" was below what it should be - I don't recall if this is because of what others told me about myself - there were many incidents in childhood where apparently I upset people without realising, sometimes badly to the point where parents had to come into school - and secretly considered myself semi autistic since my late teens. 

    That all pre dates my knowing about HFA or Aspergers or having access to the Internet (so I know those sentiments and experiences were not tainted by reading about AS), but it's still just me recounting my experiences and confusion and does not seem to constitute a professional, proper ASD assessment. 

    This was all done privately as well, hence my thinking it isn't even on my records even though all correspondence went to my GP as well. When I asked my GP for a referral I was told the consultant psych locally 'does not believe this exists in adults' (Unsure if he meant ASD or ADD, I never had an ADD diagnosis but was prescribed ADD meds for some time my that GP. I feel like I've caught up neurologically as far as the organising myself part is concerned)

    Anyway, that "is that it" feeling, I know that very well. 

  • Noetic said:
    Just wanted to make my position sort of clear. I was diagnosed but don't consider it a thorough or definite diagnosis. Don't want to give false impressions by claiming I definitely am autistic or am definitely not or self diagnosed etc.

    For what reason do you think that?

    I felt that way after I was diagnosed too.

    I'm not sure why, or quite what I was expecting, but I did have a "is that it?" feeling about it all.

  • maybe you just need a letter from your doctor to clarify, it will be on your records

  • First and foremost I just thought I ought to introduce myself since I'd been posting occasionally and realised today I'd never done so. (There I go again with the I-s!)

    Just wanted to make my position sort of clear. I was diagnosed but don't consider it a thorough or definite diagnosis. Don't want to give false impressions by claiming I definitely am autistic or am definitely not or self diagnosed etc. 

    You are of course correct, autism doesn't go away.

  • Noetic your post is very egocentric with "I's" and "my" beginnings on most of the paragraphs. Autistic speaking in the first person, personal.

    Are you are looking for a formal clarification of an autism condition, at 30ish,, no digging is necessary as you can supply the information without parental check up. There will be a pattern within your information, from childhood bullying/abuse, social isolation and struggling outwith routine comfort zones, sensory overwhelmed, social ackwardness.. communication issues etc,, a lot of what you talk about on your post.

    So at the end of the day, it depends what your reason is,,, FOR YOU,  I.e clarity, support, understanding and maybe many other reasons relative to you. You decide,, just remember autism does not go away, it is a life condition (as you probably know). So what ever the reason is,, the reason is here to stay, so you might as well.., address it now.