Post-Diagnostic Autism Assessments later in life diagnosis

IrishManc

As someone who had an autism diagnosis later in life, I’ve never had a post-diagnostic assessment to diagnose my level of autism and to identify appropriate levels of support going forward - I feel that this should be a basic legal entitlement and a basic legal obligation on all providers in the sector and in related sectors, both public and private - not having this post-diagnostic assessment means that I have no idea what my support needs are going forward and effectively renders me vulnerable to all kinds of manipulation by those with other hidden agendas

AKR

I was diagnosed with autism 2 years ago and it specifically stated they don't grade "levels" of autism like in the USA (where they use levels 1,2 and 3). This is because challenges facing individuals diagnosed with autism are wide ranging and relative to their circumstances/environment.

Jimm_Scope

I understand the worry, but I do see @AKR's point. Autism is such a wide spectrum that to narrow it down to 3 separate "levels" doesn't seem very helpful? In the UK you have a right to an occupational health assessment at work, and you have the right to have one done for your home by your local authority. These, hopefully, should allow to more properly address needed adjustments because they are unique to each job/home and to the person who is getting the assessment.

I understand it is then frustrating, as an assessment then needs to be done everytime you have a new job or move house. But I feel like that means the support can be more properly tailored to your support needs?

WhatThe

I had no idea I could have a needs assessment because of my autism!

Amaya_Ringo

I also had no idea there was anything available post diagnosis for people on the spectrum. I was diagnosed in 2005, at the time I was told there was no additional support available. I did have connections with the local autism team in my area for a while, before govt cuts closed it down. I don't know if any such team exists now - support tends to be for those with intellectual disabilities or other conditions, which doesn't really apply to me. I had great support at university through the disability office and an NAS autism mentor (two, actually) but that was paid for by disabled student allowance. That's the only support I've ever been offered because of my diagnosis.

I would so much benefit from having a mentor like those I had at university in my day to day life to help me manage applications, forms, finances, and other stuff I struggle with because of my logistics and executive function. Not to mention my navigation. But I don't think those exist outside the university system. They certainly don't exist here.

I think some distinctions are helpful and some are not. I've been told a lot of times by a lot of people that because I don't have a co-ocurring intellectual impairment that I don't need help. In fact my MR in my PIP claim based his entire rejection on that despite all the evidence to the contrary and the proof of support I had at university.

Right now I have to rely on family a lot more than I did when at university, because I no longer have those mentors. But I really don't think there's much understanding of support needs in autism outside social/behavioural ones and I don't really see anything in manifestos to suggest that will change.

IrishManc

https://forum.scope.org.uk/discussion/comment/883512#Comment_883512

In one way, I get the point, yet in another way, it is still scandalously unacceptable and a thundering disgrace that this is not put in place, given the latest research from Australia where too much focus is on children’s autism - it’s just not good enough and needs to be robustly challenged at every level, especially with an ageing population with autism who will soon need enhanced social care in care homes much earlier than most other elderly people regardless of level of autism - as it is, I’m already dreading my old age

Jimm_Scope

When the election is over you could bring this to your new MP? Might give you a good idea of where they stand on this issue and if they do take it on it's a very good way to bring it up in the place that can actually make a difference.

DJS7P

Reminds me of when I was diagnosed. No real follow up because the centre who assessed me didn't have the financial resources, nor did they give me any real links to organizations or possible support

WhatThe

Same here. This is the only place I've 'met' people who understand.