Hi I just want to ask a question about getting a diagnosis as an adult. I am considering applying to be assessed, but at the age of 50 I am not sure what value I will get from this. I can read all the A.S.D. self help books on how to be kind to myself and cope with the world better and gain a lot from that. But I wonder what the benefits of having a confirmed diagnosis would be. Can anyone enlighten me on their experience? 
While it is very much s personal decision (whether or not to seek assessment for a potential Autism diagnosis), there were two phrases from a 2023 research paper published in The Lancet which resonated with me when I considered my next steps:
Elizabeth O’Nions, lead researcher and postdoctoral researcher (UCL Psychology & Language Sciences), explains why this research is important:
“This matters because autistic people often experience discrimination and exploitation in society. They may have unmet support needs, even when they appear to be coping with life."
“Having a diagnosis means that someone can advocate for their right to reasonable adjustments and the support they need.”
Further Details:
Autism in England: assessing underdiagnosis in a population-based cohort study of prospectively collected primary care data
O'nions et al. (2023).
Overview:
Full Paper:
https://www.thelancet.com/journals/lanepe/article/PIIS2666-7762(23)00045-5/fulltext
However, the paper's Clinical implications last paragraph does provide a reality check / management of expectations:
"Whilst addressing underdiagnosis of autism is key to
reducing health inequalities, it is not sufficient without
other policy initiatives, including better post-diagnostic
support, upskilling of providers, and a national public
information campaign to “shift the attitude and behav-
iour of millions of people” towards better understanding
of autism and inclusion of autistic people.43 p.7 These
initiatives are of paramount importance to ensure that
having a diagnosis is of meaningful benefit for autistic
people."
This means self-education and self-advocacy are very important.
In my County, the adult Autism's assessment waiting list projection became so long that the service closed the waiting list to new adult applicants. Therefore, via GP referral, I joined the Right To Choose (RTC) process - where the NHS lets contracts to other providers elsewhere in the Country. Instead of a decades-long waiting list the RTC ones vary by provider with example waiting list estimates of about 7 months, sometimes less.
My RTC assessment was a fully online process - others are in person or a mixture of the two routes.
My personal considerations (as I approached assessment) revolved around 7 key onward journey possibilities:
1) learning about advocating for my improved navigation of healthcare settings,
2) finding out about the application of reasonable adjustments in the workplace (and other public places),
3) exploring how best to focus and direct my ongoing education about what strategies might better support my lived experience of being an Autistic adult,
4) to learn about being kind to myself if there might be an intersection with other physical health / mental health / neurodivergent presentations I potentially experience (and pragmatic supports around eating, drinking, bathroom, stress or anxiety and sleeping),
5) investigating what safeguarding boundaries might afford me in relationships with relatives (and others),
6) would I feel differently about using a Sunflower hidden disabilities lanyard / alert card etc. to let people be more aware that I might have support needs - without oversharing my full medical history, and
7) just what could assist me to experiment with masking less (where I felt safe to do so) and how might that help to begin to make me more aware of my energy / comfort levels, encourage me to try out things (e.g. noise cancelling headphones) and techniques (spoon theory and better controlling my calendar to realise that investing in showing up at a busy event requires recovery time too).
I admit that I am still very much a work in progress - and that pace of progress can vary in productivity now and then (as adults juggle other duties and priorities, plus your physical and mental health can sometimes need to dictate the pace too).
The level of support from other sources can be frustratingly "variable" at best. Which means your personal mantra benefits from including concepts such as: "pragmatism", "practice", "perseverance" and "prevail". That said, all people, that means Autistic adults too - are allowed to ask for help when they need support. If the community here can be of support - I am confident we try our best to do so.
Society, over many decades, has been taught a bit about Autistic so-called "deficits", not least of which, by the models used over the years for assessment / diagnosis, now our community is finding ways to share with our loved ones, work colleagues, clinicians and the wider World: examples of the types of positives we can contribute too.
Sometimes we might need reasonable adjustments to navigate the World at our most productive and in our more comfortable state - so what? Those adjustments are often no / low budget and more about a bit of understanding and patience with each other.
We are a really diverse Autistic community - so we are individual in our own discovery journeys (what challenges / assists me?) - however, there are also threads of common denominator in our lived experiences to share too.
By the way, our community outlook here is whether; self-realised / self-identified, on an assessment waiting list, or in receipt of a formal diagnosis: everyone is welcome.
While it is very much s personal decision (whether or not to seek assessment for a potential Autism diagnosis), there were two phrases from a 2023 research paper published in The Lancet which resonated with me when I considered my next steps:
Elizabeth O’Nions, lead researcher and postdoctoral researcher (UCL Psychology & Language Sciences), explains why this research is important:
“This matters because autistic people often experience discrimination and exploitation in society. They may have unmet support needs, even when they appear to be coping with life."
“Having a diagnosis means that someone can advocate for their right to reasonable adjustments and the support they need.”
Further Details:
Autism in England: assessing underdiagnosis in a population-based cohort study of prospectively collected primary care data
O'nions et al. (2023).
Overview:
Full Paper:
https://www.thelancet.com/journals/lanepe/article/PIIS2666-7762(23)00045-5/fulltext
However, the paper's Clinical implications last paragraph does provide a reality check / management of expectations:
"Whilst addressing underdiagnosis of autism is key to
reducing health inequalities, it is not sufficient without
other policy initiatives, including better post-diagnostic
support, upskilling of providers, and a national public
information campaign to “shift the attitude and behav-
iour of millions of people” towards better understanding
of autism and inclusion of autistic people.43 p.7 These
initiatives are of paramount importance to ensure that
having a diagnosis is of meaningful benefit for autistic
people."
This means self-education and self-advocacy are very important.
In my County, the adult Autism's assessment waiting list projection became so long that the service closed the waiting list to new adult applicants. Therefore, via GP referral, I joined the Right To Choose (RTC) process - where the NHS lets contracts to other providers elsewhere in the Country. Instead of a decades-long waiting list the RTC ones vary by provider with example waiting list estimates of about 7 months, sometimes less.
My RTC assessment was a fully online process - others are in person or a mixture of the two routes.
My personal considerations (as I approached assessment) revolved around 7 key onward journey possibilities:
1) learning about advocating for my improved navigation of healthcare settings,
2) finding out about the application of reasonable adjustments in the workplace (and other public places),
3) exploring how best to focus and direct my ongoing education about what strategies might better support my lived experience of being an Autistic adult,
4) to learn about being kind to myself if there might be an intersection with other physical health / mental health / neurodivergent presentations I potentially experience (and pragmatic supports around eating, drinking, bathroom, stress or anxiety and sleeping),
5) investigating what safeguarding boundaries might afford me in relationships with relatives (and others),
6) would I feel differently about using a Sunflower hidden disabilities lanyard / alert card etc. to let people be more aware that I might have support needs - without oversharing my full medical history, and
7) just what could assist me to experiment with masking less (where I felt safe to do so) and how might that help to begin to make me more aware of my energy / comfort levels, encourage me to try out things (e.g. noise cancelling headphones) and techniques (spoon theory and better controlling my calendar to realise that investing in showing up at a busy event requires recovery time too).
I admit that I am still very much a work in progress - and that pace of progress can vary in productivity now and then (as adults juggle other duties and priorities, plus your physical and mental health can sometimes need to dictate the pace too).
The level of support from other sources can be frustratingly "variable" at best. Which means your personal mantra benefits from including concepts such as: "pragmatism", "practice", "perseverance" and "prevail". That said, all people, that means Autistic adults too - are allowed to ask for help when they need support. If the community here can be of support - I am confident we try our best to do so.
Society, over many decades, has been taught a bit about Autistic so-called "deficits", not least of which, by the models used over the years for assessment / diagnosis, now our community is finding ways to share with our loved ones, work colleagues, clinicians and the wider World: examples of the types of positives we can contribute too.
Sometimes we might need reasonable adjustments to navigate the World at our most productive and in our more comfortable state - so what? Those adjustments are often no / low budget and more about a bit of understanding and patience with each other.
We are a really diverse Autistic community - so we are individual in our own discovery journeys (what challenges / assists me?) - however, there are also threads of common denominator in our lived experiences to share too.
By the way, our community outlook here is whether; self-realised / self-identified, on an assessment waiting list, or in receipt of a formal diagnosis: everyone is welcome.
Oh wow such a great reply. I am going to write notes on all the replies I have received. It seems there are very few negatives to being assessed! Thank you for taking the time to write such a good answer.
