Published on 12, July, 2020
Hi, I’m 37 and in the last few years have concluded I’m almost certainly autistic. I prefer the phrase “over the rainbow” to “on the spectrum “ - OK I probably made my phrase up but I think spectrum is an ugly word. My mum and boss are also both convinced I’m autistic.
My question is - should I try to pursue a diagnosis? I spoke to my doctor a couple of years ago and the advice was “there’s not really much of a service to diagnose adults and a label wouldn’t help you” but actually it would. The moment a person who knows me well said they had no doubt that I was autistic a huge weight was lifted. I’d spent my whole life feeling like I wasn’t a proper person - because I didn’t understand people.
But is it enough for me to believe that? Can I explain myself to people by saying I have autism if I haven’t been formally diagnosed? Am I allowed to say that?
Sorry this has rambled on longer than I meant it to. Thanks for reading this far!
As I have posted on similar threads, the first thing you should try is doing the AQ and EQ online tests.
AQ https://psychology-tools.com/test/autism-spectrum-quo
And
EQ https://psychology-tools.com/test/empathy-quotient
If you go for a diagnosis then you'll have to do these anyway, plus the ADOS assessment, in addition to a couple of 1:1 sessions with a Psychologist.
Most people find getting a diagnosis very much helps, as you have the answer to why you are different and you can then get therapy (if you need it), medication for anxiety (again if you need it) and/or adjustments in your workplace.
You can convince yourself you are Autistic (self diagnosed i suppose) but doesn't prove anything, at least with a formal diagnosis you have an explanation of your condition to friends and family. Your workplace would require a formal letter of diagnosis, to provide additional support and workplace changes.
In my case, I am to avoid large meetings, require my work requirements to be clearly defined and written and people communicate via company online chat or email (as opposed to standing next to my desk or ringing me).
Without a diagnosis, people and companies just won't take you seriously. People and Family (who know you well) will think you are normal, as being Social masking comes into force.
If you want to pursue a diagnosis (Private or NHS) it really helps to perform the AQ and EQ tests and also write down all the things that makes you think you are Autistic. For example what makes you stressed, do you overthink, get obsessed with anything. Did you have problems when you were younger, not fitting in, few friends, bullying etc, etc
Armed with this information will really help you and your GP plan out the next step.
A private diagnosis cost me £300 for a 1:45hr session with a Psychiatrist, he diagnosed me with Aspergers and referred me for a formal diagnosis with two Psychologists (including a ADOS test). This cost £275 for the initial consultation to determine whether i merited a formal assessment ( i was a bit annoyed at this, as I had been referred and shouldn't have needed this consultation). Then the assessment which cost £1500.
You end up with a summary report and covering letter (needed by employers etc) and also the full report including all the test scores, ADOS report and all the findings of the Psychologists.
In my case I saw my GP in November 2018, but by February 2019, he hadn't been able to find anyone to look at my notes. So I requested the private route.
I should have mentioned that I had no idea, I had Aspergers ( my son was diagnosed with it) and I just thought I had some sort of anxiety disorder. I was quite a shock when, the Psychiatrist said that after reading my notes, speaking to me (and observing me) he was 95% certain I had Aspergers.
I got referred to the private Psychiatrist in May 2019 and the Psychologists in July ( there was a 6 week delay, as the referral was mislaid).
Final diagnosis was early September 2019.
Anyway, do the tests, write and present your case to your GP and take it from there :) I hope I works out for you!
NAS68832 may I ask why this is?
No - I wouldnt bother if I were you. I did and wish I didn't... Self diagnosed is all you need.
One benefit of diagnosis is that if you ever find yourself in a bad situation and needing to claim social security, it is easier to claim ESA and PIP. Probably not something the everyone wants to think about, but it is a benefit of diagnosis.
Hi, and welcome! Although it's different for everyone and a very personal journey, for me a diagnosis helped very much (I was diagnosed at 30), and helped to pinpoint more accurately what's happening. What I found is that there is something going on with the way my brain processes language, especially verbal language, and it takes longer for me to understand than the pace that regular conversation moves at. When people speak to me more slowly than they normally would, it helps very much. Not everyone seeks a diagnosis but if you were to decide to, there is a service to diagnose adults, although the NHS waiting list is quite long and may take over a year. There are also private places and although they cost, they can see people much more quickly (this was the route I went down and the NAS website has a good directory). This forum is also great for discussing things and hearing about people's experiences, and helps a lot too.