Diagnosis at 34

Thanks for updating us, WR.  It's great to hear what a positive experience it's been for you so far, and I'm glad things went well with your GP.

Hi all,

A few people asked me to let them know how things wend with the GP.

I went last week and the GP was very receptive and understanding. I made a list of examples where I display ASD symptoms. The GP asked me to email him the list as it would be useful for the next stage of diagnosis and he gave me a AQ10 questionnaire which I completed and sent back.

We'll see where things go from here. I scored very highly on the questionnaire (indicating ASD) and the more research I do the more I think I am on the autistic spectrum. So far it has been a really positive experience, learning about myself with help from lovely people like all of you has made me very positive about finding a new job and direction in life that will work for me / with my way of working.

I've got a long way to go to learn about how I work but this is a good start.

Thank you all :)

WR

Will do :)

Thank you Jenny :) 

You're very welcome.  I've seen in your other replies that you're going to speak to your GP - that's great news.  Do let us know how you get on once you've spoken to them.

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!  

Hi Roy,

Good to get an idea of cost for private. I will need to see what waiting lists are like in my area but if they are 2 years then I might have to (reluctantly) go private.

I have "call GP" on my to do list for today. May as well get the ball rolling.

Thank you for your reply and likewise, I hope your journey goes well too.

WR

Hi WR,

I’m very much at the same stage as you, I am 54. I’ve always managed to do a job that allows me to work totally alone, all day, every day in the same surroundings. 
I have an appointment next week with my GP for a referral. 
It is a face to face appointment as telephones make me very anxious.

I’m not sure if there is asd in other family members but my mother has been sectioned five times after breakdowns.

Unfortunately the waiting list in my area for diagnosis is about two years. I am lucky enough to go private. The cost of the full package is £1500. 
I feel that waiting another two years just to start diagnosis would be not beneficial to my well-being.

Im using a clinic called Autism Oxford as they are local to me and specialise only in autism.

This is not a recommendation, it could just be good to have a look online.

I would recommend diagnosis as once you have a definite answer as to what you are,it finally answers the question of why do I always feel different to others and feel like I do.

Hope your journey goes well for you.

Hi NAS76713,
Yes, it seams to run in our family too (autism and dyslexia). Although it is only quite recently that my family members have been diagnosed. In our family both have been diagnosed through 3 generations.

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

Well I have autism and dyslexia and my nephews have both too my mum had it. I think my dad does. I saw my doctor today asked about my sister said she thinks she is to she went to a specialist school for learning dis we both had many test when we when we were children. My doctor said it runs in families so if your sisters children have it she more than likely will too.

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 Ducky,

My last job was technically a self employed / contractor role. However, I was treated like an employee in most regards until I mentioned reasonable accommodations for dyslexia and then the I was no longer an "employee" and I was on my own. I get the impression that even if I was a full employee they would only reluctantly commit to reasonable accommodations.

However, not to down talk self employment, my first job was also self employed and my boss then was brilliant. Very accommodating, flexible, as long as the work got done I could work how and when I liked... I only left because the work dried up. 

I know I have only had 2 reply to this post so far but its so nice to hear from people who have been though similar experiences. THANK YOU!

I will keep looking into symptoms, experiences... and then see about raising it with my GP.

And thanks for the tip about making notes of experiences. Very useful tip.

WR

Hi Dawn,
Thank you for your reply.

As I was reading your reply things were jumping out at me as relatable. Interruptions and task switching I struggled with in my last job.

It sounds like a bit of a journey to find a job and employer that works for you. I think this is why I'm asking these questions. I need to figure out my needs first and a diagnosis / help might help me with this.

I do use noise canceling headphones. Never heard of "energy accounting" before. I will look into that.

Thank you :)

Hi WR, and welcome to the forum!

What you've said here sounds quite similar to what led me to look into whether I might be autistic - particularly what you said about leaving jobs due to burnout/mental health.  (I'm recovering from another burnout at the moment, but now self-employed as staying in full time employment has been too much for me to handle.)

Once I did realise what was going on with me, which was back in August/September, I spoke to my GP to ask for a referral for assessment.  He was happy to do so, and sent me the AQ50 questionnaire to complete before referring me.  My score (49) has been more than enough for me to now identify as autistic while I wait for an appointment to get assessed.  It varies depending on which NHS trust is doing the assessment (unless you opt to go private, which is much quicker but obviously costly) - I've been warned it'll be a case of years rather than months.

So I'd recommend speaking to your GP if you want to get a formal diagnosis, and also do some research of your own (this is a great place to do that!) and start making some notes of experiences you've had that point to autism, as you'll need those if you do go for an assessment.

And keep asking questions here, as there'll always be someone who'll be happy to answer them for you!

Hi WR, well I've had jobs I enjoyed and was good at but seemed to burnout from - exhaustion of the sensory issues on the commute or the constant need to interpret social situations.  And I've had jobs where the processing demands of constant task switching haven't suited me.  It does quite quickly make you feel ill.  Generally, i;ve managed to maneouvre myself into a role better suited to me or located with better travel, but yes, I can relate.

And yes, indeed, these things could be ASD related, particularly if you have it in the wider family.  Only a proper diagnosis would tell you that for absolute sure and give you the legal protections for employment etc, but not everyone wants the 'label' that goes with it.  There's nothing stopping you self diagnosing though and using any tips, tricks or gadgets, such as noise cancelling headphones or the principle of 'energy accounting' to see if these improve things for you.