Diagnosis at 34

Some of my experiences have been similar and, particularly within an office/corporate environment, I've found it difficult to last, for one reason or another.  No doubt they thought it was all my fault but I didn't know that I was autistic at the time and so i couldn't be open about it or ask for accommodations.  I'm sure there'll still be plenty of people out there in this situation - the employer claims to be autism-friendly or at least "positive about disability", but, if you're not identified you have no protection and it can be put down to performance issues.  My appraisals were always a great source of anxiety and tension and I just didn't know why I felt different from others and was so exhausted all the time and not able to put inthe same hours as others.

The way through?  I now have experience of both myself and one of my sons going through the assessment process.  Mine was via the NHS and my son's was private.  Unfortunately the private service was MUCH quicker and better in terms of the follow up offered (basically lots of signposting towards anything we were prepared to pay for).  As I think I've related here before, the centre he went to did both private and NHS work and the wait for an NHS assessment was well over a year.  When I asked how soon he could be seen privately it was a case of, "How about next Tuesday!"

My NHS assessment was OK, once I got to that point, but I first had to see my GP, then a kind of gatekeeper mental health assessment guy to do a preliminary questionnare (or two!),then a sort of keyworker while I was on a waiting list (this bod seemed to have no knowledge at all about autism but was there merely to check I was safe while I waited), and then the 3 assessment appointements had a wait of a couple of months between each one.  Also, my son got a fairly detailed report with post-diagnostic recommendations whereas I only got a brief letter!

That said, the assessment process was very similar.  One personal interview about childhood, education, work, difficulties etc, one questionnaire-driven interview alongside my elderly mum which lasted about 2 1/2 hours (she was exhausted afterwards!) and one ADOS-based appointment, with lots of little activities like putting the words to a picture book or putting shapes together.  I then has to wait several weeks for the actual diagnosis.  My son got his immediately.  

I guess it depends upon factors such as the finances available, your attitude to private healthcare (I didn't feel good about going privately for my son but it felt as though it could potentially be lifesaving and I didn't want to leave him on the waiting list while his life was in such disarray), how you feel about waiting (it actually messed with my mind and I wouldn't want to go through it again) and the availability of local services.

I think that in your situation (which is not unlike mine a few years ago), I would want an assessment asap.  It may be that, with accommodations and greater self-knowledge, you'll be able to secure a greater income or feel safer within your current role.  To my mind this might mean a private assessment virtually pays for itself within the first year or two.        

Hi Jenny,

Thank you for your reply.

I did an "autism spectrum quotient" test online, last night (I did 2 to compare) and my result for both was "shows significant signs of autism". This was the same initial test my family members did through their GP.So I think I am defiantly going to go forward with a diagnosis / see my GP.

Very interesting to hear the difference between NHS and private. May I ask, if its not rude, how much private cost? Just a ballpark. Are we talking several hundred or several thousand pounds?

Also, you make a good point about earning potential post diagnosis / self-learning and the fact that this may pay for itself... If nothing else, I will earn more through not taking 3-6 months off work every time I burn out.

WR

Hello again and no problem.  My son's assessment took place at the Tuke Centre (now called the Retreat) in York at the beginning of 2019 and cost around £1500 in total, with options to buy one to one or group post diagnostic support.  I didn't think that was too bad as I know of other places that charge over £2 - 3k.  Plus the initial interview was, I think, around £200 and they told us that they'd advise us after this first appointment whether it looked as though it would be worth spending the rest and having the full assessment.  Obviously in our case we were well within the range for the full assessment to be worth it but it felt better to know we'd be given that option after initial feedback.  

Overall, and in spite of me having qualms about going private, I'd say it was money well spent as it allowed our son to challenge his university over a couple of things on medical grounds with strong written evidence.  Plus it gave him a head start in getting his head around the diagnosis and considering his needs.  

Around a year and a half after his diagnosis it turned out that the NHS had somehow kept him on the waiting list and he got a call informing him that his name was now at the top of the list and they could offer him an appointment for the first interview!  

Thank you Jenny :) 

Thank you Jenny :)