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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).

Parents

  • 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. 

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  • 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. 

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