Late diagnosed

I was given a preliminary diagnosis 3 years ago and put on the waiting list for a formal diagnosis. To be honest it was a relief to finally put a name to my lifetime issues.

As time drags on and the official diagnosis doesn't seem to be getting any closer I feel like I'm stuck in a holding pattern. I know there's no magic wand or actual "treatment" but it would be nice to have it officially confirmed to give whatever limited help or entitlement it gives.

I have had a feeling of loss or grief for the longest time, even before it was suggested I had ASD. Whether it's been the dysthymia or alexithymia and constant fog that clouds my thoughts. What would life have been?

I know I shouldn't think like this, I've been told not to discount my achievements but it doesn't really help.

So I can honestly say I know how you feel. At least you are on the right road.

Take care 

It seems to be really common that lots of people only get diagnosed or self suspect when their child is being assessed. That's good you will now hopefully be able to understand yourself and your son better.

I also suspect I have some kind of dyscalculia, certainly numbers anxiety. I was an entire year behind everyone in my class in primary school in maths levels,and had to have one to one support for it. I had trouble learning to tell the time, tying my shoelaces, and lists, etc. I also tend to panic when I have to do something involving numbers, particularly if being observed or under stress.

I meant to say psychiatrist not peaditricuan 

I went to the gp in 2023 to begin a official diagnosis as I’ve been self diagnosed over 1year and 6 months as my son was getting assessed and it was a lightbulb moment as I realised that they were in fact describing me 

I had to fill out loads of questionnaires and the developmental history etc and then placed on a waiting list, so that’s what the face to face assessment was about, it was 1 hour long,  

Wednesday I see a psychiatrist as she wants to see if I have comobordities, dyscalculia was mentioned in the assessment as I explained that I can’t tell the time on a clock and I’m very bad at maths numbers are like a foreign language to me 

It is weird how all the assessments are so different. I feel for the people who were fobbed off after a single meeting, or by their GP. Mine was similar to yours. A separate person did the ADOS test. It was very thorough. I don't think everyone gets that. I was even allowed to make corrections to the report. I was so lucky.

You've not lost anything, you've gained a new understanding and context for your life.

Why are you seeing a paedatrician?

I cried my eyes out. Probably the 4th time in my life. Welcome!

Hi Noodle, I am 37, also late diagnosed. I just got told I was autistic last week, after about three years of self suspecting and researching. I find it interesting that you say you 'finally'got your in-person assessment. Can I ask, how many hours this was? I only ask because it seems the diagnostic process varies so much between councils and services. For example, I had six in-person assessments, lasting over an hour each. That could be because the assessor was struggling to assess me and needed more time to unpick things.

(Ok, reading that back over, it seems as though I could be insinuating that your diagnosis is not as valid as mine. THAT IS ABSOLUTELY NOT THE CASE. I am simply really interested in different approaches to diagnosis and how it works for different people in different areas of the country.

Anyway, I hope you find this forum helps you in some way. I also felt, not necessarily 'happy' to be diagnosed, but certainly glad that I had some answers as to why life has always seemed harder for me than most other people. It would have been really awful to have gone through months of stress only to be told I was simply weird and incapable of coping with life. Now I feel at least I have a solid ground to begin understanding how my brain and emotions work.

Hi Noodle, it’s hard to hear that you are going through the process of late stage diagnosis. Im 29 and was diagnosed December 2023, I can definitely empathise with your situation. I hope you find the support we are all seeking to help you through this. I wish I had some tips but I’m still trying to figure this out myself, I read various books on autism and I feel I understand myself more now and therefore have greater acceptance. I think the biggest struggle for me is realising now this is the way I am, pre diagnosis I told myself that if I went to enough therapy and worked on myself enough someday I would be “better” or “fixed”, and now I know this isn’t a possibility. Please give yourself kindness

Congratulations Noodle!

Hi Noodle - congratulations on your diagnosis and welcome to the community!

It's great that you're already feeling some benefit from your diagnosis - I cried with relief when I received my diagnosis, too!

However, during the period following a diagnosis it also can be common for us - especially as late-diagnosed adults - to experience emotional dysregulation. So please don't worry, this is normal! This can include working through a phase where we experience (backward-focused) anger, frustration, grieving and more. And I, for one, have also cried about that, too :(

The NAS has a great set of articles focused around diagnosis, including one covering how you might feel during the subsequent days / weeks / months - you might find them of interest and/or helpful:

NAS - How you might feel after a diagnosis

NAS - Other advice covering post-diagnosis

In terms of what to do next, my advice at this point (ie so soon after your diagnosis two days ago) would be to try and give yourself some time and breathing space to process and absorb everything that you've been through, and let your feelings settle down.

For me, as for many others here, my diagnosis turned out to be much more of the start of a new journey, rather than a solution-rich conclusion.  

Therapy is often also recommended after a diagnosis. You might find it helpful to borrow or buy this book, which includes discussion of various types of therapy and counselling, together with advice on choosing the right therapist or counsellor - all from an autistic person's viewpoint. Several of us here have found it very helpful, myself included:

The Autistic Survival Guide to Therapy