LATE DIAGNOSIS

A

Abwehr1944

New member
Hi all.
At age 74 I have been positively triaged and put on a waiting list for formal diagnosis of Level 1 high functioning autism.
I would be interested to know, for those already diagnosed, how long you had to wait.
All the best.
 
Hiya!

I think I had to wait a couple of years, maybe 2.5 - this was around 2020.

Look into Right to Choose if you haven't already as it can shorten waiting times (I can only imagine how long it would have been if I hadn't done this). The NDSA website also has a lot of useful reading in relation to diagnoses.
 
BTW you are having an Autism assessment - there's just one assessment : many in the UK dont get a diagnosis with a level (mainly America uses them). Also "High Functioning" is not preferred language , better to say high or low support needs, and your assessment won't diagnose you as "high functioning" either.

Most Autistics need support which can vary, over time and in different situations, - but if you wish to declare yourself as "high-functioning" then why bother with an assessment?
 
Chill-E said:
BTW you are having an Autism assessment - there's just one assessment : many in the UK dont get a diagnosis with a level (mainly America uses them). Also "High Functioning" is not preferred language , better to say high or low support needs, and your assessment won't diagnose you as "high functioning" either.

Most Autistics need support which can vary, over time and in different situations, - but if you wish to declare yourself as "high-functioning" then why bother with an assessment?
Click to expand...
I'm in the UK and my diagnosis was (and this is a direct quote) : Autism Spectrum Disorder (ASD) DSM-5 without a learning disability and without language delay/disorder [formerly Asperger's Syndrome] which is pretty much what most would consider 'level 1' and 'high functioning' - I agree with you about that use of language but Rome wasn't built in a day and I think pedantry over language is not helpful especially when people are new to the community - it comes across as hostile even if that wasn't intended.

Prior to understanding that high functioning wasn't great language I would probably have used it about myself albeit in a somewhat self-deprecatory manner.

Respectfully, I think if someone wants an autism assessment then they should have one. I didn't get diagnosed until I was 62. I still found it validating and helpful and my mental health has improved as a result of understanding that I'm not faulty, just differently wired.

To answer the OP - absolutely ask about Right to Choose - my wait was 5 years from initiating the request to assessment and diagnosis, I wasn't aware of Right to Choose at the time.
 
MandyH said:
I'm in the UK and my diagnosis was (and this is a direct quote) : Autism Spectrum Disorder (ASD) DSM-5 without a learning disability and without language delay/disorder [formerly Asperger's Syndrome] which is pretty much what most would consider 'level 1' and 'high functioning' - I agree with you about that use of language but Rome wasn't built in a day and I think pedantry over language is not helpful especially when people are new to the community - it comes across as hostile even if that wasn't intended.

Prior to understanding that high functioning wasn't great language I would probably have used it about myself albeit in a somewhat self-deprecatory manner.

Respectfully, I think if someone wants an autism assessment then they should have one. I didn't get diagnosed until I was 62. I still found it validating and helpful and my mental health has improved as a result of understanding that I'm not faulty, just differently wired.

To answer the OP - absolutely ask about Right to Choose - my wait was 5 years from initiating the request to assessment and diagnosis, I wasn't aware of Right to Choose at the time.
Click to expand...
I agree to disagree - about the language/level thing

But you are 100% right about the RTC - it's badly sign-posted by NHS or GP services - and getting an assessment/diagnosis is the key to improving your life whatever age, and yet it seems harder and harder to get via the NHS.

I was very fortunate to have mine covered by insurance but am going for another ND diagnosis now and having to pay for that one, as the NHS has no adult pathway. But I'm aware many in the community don't have funds to cover costs of assessments and/or therapy - so know I'm lucky in that way.

Even dyslexia assessments are not covered in some NHS areas and I understand some schools not far from me don't even acknowledge it, in their primary schools. Sadly schools are still not good for NDs, regardless of what the say they are doing.