It all came too late for me

I was diagnosed with ASC at 59. I had what I now recognise was a panic attack in my first A-level exam. It lasted about 10 minutes or so, then I started writing at top speed. I did go to university, there is a streak of stoicism in my family that stood me in good stead, if you say you are going to do something, then you just do it. I had problems, in the first couple of weeks I could hardly eat in the hall refectory due to nervousness, and anxiety in the build up to exams was a recurring problem. However, I coped, I functioned sub-optimally, but I functioned. For the first and only time in my life I had a group of friends numbering around half a dozen - all through my school days I tended to have only a couple of friends at any one time. I got a degree, not quite as good as I deserved, I was an undiagnosed autistic after all, and had recurring headache problems, due to sinus issues, that affected my ability to study. Ironically, I now recognise that my autism inhibited my ability to report my physical health problems to the university and thereby receive some leniency in assessment and marking.

I eventually got a job in a university in scientific research and went on to get further degrees - incidentally, research degrees, masters and doctorates, are much easier for autistics than undergraduate degrees. All the time I coped, largely because I expected myself to cope and did not see not coping as an option. It did come at a cost, I could not understand why things seemed to be so much easier for other people than they were for me, why I was limited in some ways, and why I was often exhausted. The first time I ever had any interaction with a medical professional for anything other than a physical problem was in my autism assessment.

You write : 

’ It did come at a cost, I could not understand why things seemed to be so much easier for other people than they were for me, why I was limited in some ways, and why I was often exhausted.’

That’s it in a nutshell really. Undiagnosed, feeling like everything is a struggle, feeling confused and so very tired most of the time. That’s been my life basically. 

Absolutely!  And until very lately it's felt like a hidden cost.  I didn't have the key to understanding it and, worse still, the lack of understanding from others easily reinforced any negative ideas around self worth.  I didn't even have the words to articulate much of it. 

I thought I'd be alright when I went for my diagnosis appointment (they wouldn't just tell me over the phone, which would have been easier because I'd have been in my own environment).  Had a list of question either way and went in with an almost detached, business-like attitude.  I'd become rather good at maintaining that in senior finance team meetings.  But, silly me, the magnitude of it all had been building up amongst all the "hidden" stuff, the things I'd swallowed down, repressed or denied over the years, plus the lies I'd told myself (and others!) in order to get by.  Masking to a ridiculous degree.  So, when these two professionals simply sat back in their chairs and said, "So.  Today we'll be making a diagnosis of ASD.  Do you have any questions?" I simply started to cry.  I did ask a couple of my questions.  After all, I needed to feel absolutely sure of their findings, both for my sake and for my family.  But my "accountant's mask" visibly and unexpectedly just dissolved.  They, of course, kept their more distant and professional stance, while I could feel myself - or rather a whole edifice of what I'd thought of as myself, my identity or personality - just falling away.  

The struggle and the costs over the years.  A cumulative load.  Too much!      

Absolutely!  And until very lately it's felt like a hidden cost.  I didn't have the key to understanding it and, worse still, the lack of understanding from others easily reinforced any negative ideas around self worth.  I didn't even have the words to articulate much of it. 

I thought I'd be alright when I went for my diagnosis appointment (they wouldn't just tell me over the phone, which would have been easier because I'd have been in my own environment).  Had a list of question either way and went in with an almost detached, business-like attitude.  I'd become rather good at maintaining that in senior finance team meetings.  But, silly me, the magnitude of it all had been building up amongst all the "hidden" stuff, the things I'd swallowed down, repressed or denied over the years, plus the lies I'd told myself (and others!) in order to get by.  Masking to a ridiculous degree.  So, when these two professionals simply sat back in their chairs and said, "So.  Today we'll be making a diagnosis of ASD.  Do you have any questions?" I simply started to cry.  I did ask a couple of my questions.  After all, I needed to feel absolutely sure of their findings, both for my sake and for my family.  But my "accountant's mask" visibly and unexpectedly just dissolved.  They, of course, kept their more distant and professional stance, while I could feel myself - or rather a whole edifice of what I'd thought of as myself, my identity or personality - just falling away.  

The struggle and the costs over the years.  A cumulative load.  Too much!