Getting together with a research request

quick update - just tried to download the disability union's free activism guide - it's a "blind link" and it hasn't worked for me :-(  not sure if it's a tech issue or what but I've e-mailed then to let them know

I've realised I've commited the big error of pointing you at computer based resources TheCatWoman doh!!!  Sorry :-(

If what I've suggested is a bit too much for you to start with and if you are serious about tackling the computer literacy thing Abilitynet is a legitimate UK-based charity and recognised authoriy on digital accessibility and tech support for disabled and older people. It provides professional services, including workplace assessments and website accessibility audits, alongside free IT support to help people use technology.  Free training in IT skills  is available via Abiltynet for those over 65 and those with a disability over 55.  Their helpline is 0300 180 0028 during UK office hours.

Age UK do classes too.

I suspect a bit of digging and doing and that computer shame can be a thing of the past!

best wishes

It's not stealing it's sharing TheCatWoman and I'm pleased you're still thundering!

My background includes union activism - there are lots of free resources for campaigning and organising thro' organisations such as the TUC for such purposes and I use them.  Their free on'line course on organising covers a lot of the things you are talking about wanting to know how to do - in terms of sharing info etc... Esp important to be aware of data protection and security etc.  Also about mapping out who has the power to address the issue and how to get to them.

I think one thing to consider in this context here is that we are all anonymous - so the details of our conversations will be grist to the mill but getting signatures from this forum is not really an easy starter.  I suspect it might fall foul of the NAS terms of use. 

That said, I set up a "closed" facebook group for supporting autistic physios and advertised it thro' this group - if you can get your head around that or get help to do so?  Then maybe interested people could be less anonymous there.  The private messaging giving a generally secure way of sharing personal details (if all can be trusted who one uses it with!!) .

I have just made an internet search for such things directly related to a campaign you suggest.

Apparently there is an organisation called "the disability union" that costs money but puts on courses and supports activism too - can't vouch for them personally though I firmly support the principles and practice of unionism and hey - maybe they're on to a good idea.

No apology necessary pietro_21 

Autistic people seem to me to often value fairness, justice and honesty perhaps more than society as a whole serves up.

Maybe it's "black or white" thinking or naievity.

If the experience that you describe is based upon not having had much experience of how public bodies work I empathise - been there lived that myself.

When the smoke clears and if like me there is the temptation to challenge and attempt to "right the wrongs" by campaigning against them please consider this:  to save grief I suggest it is first worth considering does it pass the "widely felt, deeply felt and winnable" test.  I have banged my head against issues myself that don't pass that test and bear the psychological scars as hard earned lessons.

If you do want to campaign against what you are encountering then what to work on is creating circumstances where the test may be passed.  Seek support to do so and be prepared for a marathon.

All the best.

I recently took up a voluntary role on the board of a public body. I am really conflicted at the sudden realisation I had last week that many of these partners organisations some are CICs but most are simply new arms of companies aiming to milk it. I am considering my position because I cannot morally stand by that, if a charity or public service does not see that (who the service is fundamentally for). Beyond words how gutted I am at the moment. Sorry lots going on in my mind.

Hi pietro_21 

I think you sound realistic in your assessment and that can appear negative as the assessment is of a pretty poor situation (having to self censor for profanity there!).

The issue of whether one appears apathetic relates to how one engages with organising to do something about it.

I suspect that there is a neurodivergent tendency to see the bigger picture as you put it and "Jobs for the boys and girls" is part of this.  People have their own needs and they meet them how they can.

In respect of exploitation - the only difference between slavery and employment is that an employee can withdraw their labour.  Meantime those who are ethical enough and have the good fortune (or stupidity sometimes!) to work to values that promote fairness and equality do what they can in often challenging situations.

I am reasonably happy with equality legislation - the problem lies in enacting it.

hi Phased,  it is an understatement to say there is disability injustice that exists. I don’t mean to sound negative or apathetic. My experience recently is that these topics and investigations into autistic people are not deeply thought out some almost look down or ask facile questions. My question to researchers is why might x ASD person not feel the same way as you, or be in any way limited in their feeling about the world? That coupled to where this knowledge feeds back into is largely a job industry creation to for neurotypical people. So again we are being cut out of another industry which is being build around us and our needs, that is exploitation. Because I see people now turning a blind eye to this facile ‘care’ machine. I just don’t feel like equality laws really do go far enough. 

I agree with you that there is widespread societal apathy towards disability.  pietro_21 and that it is greater towards "invisible" disabilities and more evident towards mental health and learning disabilities. Personal experience and research evidence shows this.

This makes for a problem when people seeing the bigger picture - especially when public concern is focused on cost of living, global warming, increasing risk of global war - not to mention the appeal of the global marketing, entertainment industry, petty feudal bigotry etc. Or just dealing with their own stuff in a complex and challenging social madhouse.

It's for this reason that your concern about limited research by autistic people to accurate reflect autistic concerns is especially valid.

I suspect that many researchers on the topic are themselves autistic and it may be that they are not overt in this.

For the very reasons you state getting organised as autistic people to lobby and engage for what we want and need is especially important.

Other socially repressed groups have progressed their case, representation and place in society.

Maybe so can we.

All the best.

The whole thing is a bit of a farce if you believe that what people are doing or researching has no impact. By that who are they asking the questions for or about  (I have found very few insightful studies about autistic behaviour, that are not written or devised by some who is or is related to someone who has autism). Those questions only come from seeing the nd as equal humans The empathy to ask the right questions (about late/self/unyet diagnosed) doesn't exist at the moment. 

I have had two incidents recently - one was an app designed for autists which was like a computer game for a five year old, very repetative and misunderstood in design (called Molehill). Or I completely missed the target audience. Another time recently I was approached by a bot online who realised I was autistic then started repeteting everything I was saying and not answering any questions about itself. If you want to engage, engage, if you dont or feel vulnerable in your own experience dont. You are also training the machine everytime you type, so keep your views and your questions to yourself if you value them.

I am really stressed at them moment that I fall outside the net for most services, I have been diagnoses a serious life changing condition which I myself have to define as a disability then get penalised for socially if I do. It's actually hilariously funny how apathetic society is in general. Great if you like being by your self though!! It is funny but also deeply disturbing that all of this asking questions about us is also a huge business and job creation for nt people everywhere  The proof is in how much changes or whether it just another false economy and we all become a lost ASD generation. This is what brings me down the most more that the weather, that noone really looks at what the big problem is.

{greater societal apathy towards disability}

Thank you so much Phased, my thunder is intact! This is really helpful and I may steel it to use in any future letters etc to research bodies and politicians, health trusts etc if thats ok with you?

I seem to have touched a nerve here with many people, none of us like to think about the possibility of being in need of care, but many of us are getting to an age were these things need thinking about.

I was wondering about writing to Gina Rippon with some of this, especially about brain imaging in older autists with suspected dementia etc. I think she maybe semi retired now, but is still connected with Aston University where her previous neuro imaging work has been carried out. I feel she could also be a fantastic advocate for us.

Its a shame I'm not more computer literate, I'm unsure of how to share a proposed letter and gain signatures before ammendment and post, other that by typing it all out here and then asking for comment.

:-)

Thank you Phased for the useful summary.

I really think this post has raised an important issue regarding older adult autistic people TheCatWoman and other responders.

Hoping that it is OK and without compromising data security I have used AI to summarise to help the discussion progress and possibly help with the letter proposed.

Here is a concise summary of the discussion:

The conversation centres on concerns that older autistic adults—particularly those diagnosed later in life (“latelings”)—are overlooked in research, services, and policy. The original poster suggests writing a joint letter to research organisations to advocate for more focus on the experiences and needs of autistic people as they age, especially regarding healthcare, social care, and elder services.

Participants raise several key issues:

• Lack of age-appropriate research and services: While some research on ageing and autism exists, many feel it is not widely accessible or translated into practical support. Research and services often focus on children and young adults, with support “falling off a cliff” after early adulthood.

• Gaps in elder care preparedness: Concerns include sensory issues in hospitals and care homes (lighting, noise), lack of autism awareness among staff, misinterpretation of autistic traits (e.g., need for solitude seen as “self-isolating”), and dietary or environmental needs not being respected.

• Diagnosis challenges in older adults: Many older autistic people remain undiagnosed. Existing diagnostic and cognitive tests (e.g., dementia assessments) may not be suitable for autistic individuals and risk misdiagnosis. Late diagnosis can be emotionally disruptive and is often followed by little or no structured support.

• Mental health and inpatient care: There are worries that inappropriate mental health environments may worsen outcomes for autistic people, particularly those over 60.

• Employment and discrimination: Older autistic adults face compounded challenges such as unemployment, retraining needs, and workplace discrimination, with limited practical support.

• Access to research and policy impact: Academic research is often behind paywalls, limiting public access and advocacy use. Some suggest collaborating with autism charities (e.g., NAS, Autistica, university research centres) to strengthen influence and ensure findings are more widely shared.

• Debate on feasibility: One participant questions whether services can realistically be designed for such a diverse and complex group, arguing that individualised approaches may be more practical. Others counter that shared traits justify research to inform better guidelines and policy.

Overall, there is strong support for collective advocacy, collaboration with autism organisations, and research that identifies the needs, barriers, and wellbeing factors for older autistic adults—particularly to improve healthcare, social care, diagnosis processes, and post-diagnostic support

Not with any intention of "stealing thunder" but with a desire to keep the ball rolling I plant to make another post on this topic to keep the ball rolling for collaborative discussion and activism on this.

Best Wishes All and especial thanks to TheCatWoman for raising the IP

the points made are excellent!

this NAT are most interested in raising the needs of autistic people who are unable to voice them themselves - this I understand to be those with intellectual difficulties, those in institutions etc with high support needs.

this video is a great watch when Dr Yo Dunn gets going in her talk :-)

International Conference: Autism by Autistic Voices – National Autistic Taskforce

Indeed. :-)

TheCatWoman said:

How would I get onto google scholar?

If the links I have shared are in blue on how you are reading them then "clicking" on them should take you to google scholar for each of those search terms TheCatWoman 

then each of the search answers can be looked at via the usual google method - in reality you might find only the abstract for the paper comes up by clicking on the link however sometimes it is possible to see the whole paper e.g click on the button to "view as PDF".  Sadly a lot of them are behind pay walls tho' :-(

I want to support activism for wider understanding of and suitable societal interaction with autistic people of the sort you are describing as being missing.  

let me know how you get on and what you find maybe?

In follow up conversation with ArchaeC I have proposed that support of such organisations as the NAS might be a means to get the sort of issues raised that you not unreasonably identify - for all age groups and yes if appropriate to highlight the different impact that autism has on people of different ages.  This would perhaps be a keystone in consideration for how individuals are treated by the NHS etc. 

(although as for joined up care - this implies that people are prepared to engage with joined up thinking and that seems to be a bit of a problem for humanity given the complexity of our current existence...)

I came across this organisation in searching on the topic just now

National Autistic Taskforce – Bolder Voices, Better Practice

These people are a small organisation that have an appetite for addressing policy and practice in relationship to how autistic people are treated by society.  Perhaps worth contacting.  Anyway I'm happy to join with you on this to give some time an effort and if nothing more to add my name to the list of ir supporters....

Collaborating with organisations could have greater impact. The NAS has been quite active in N. Ireland in highlighting the needs of families of younger autistic people, so has Autism NI. Perhaps an approach to all UK autism charities about the needs of over 60s would be fruitful.

ArchaeC said:

Notwithstanding the need for a scientific background for much of the research, it would be a huge undertaking for anyone.

Yes, a huge undertaking for one person and these are the challenges one faces as an individual in situations such as the IP highlights.

If on the other hand autistic people collaborate to highlight the issue with the support of such organisations as that which is hosting our chat perhaps?

I think that such activism is still in it's infancy however the sort of request from TheCatWoman suggests there is some appetite for it :-)

How would I get onto google scholar?

I think how older autistics are treated is something that it would be good to get ahead of in public awareness. We have elections in Scotland and Wales for out devolved assemblies and parliaments, I intend to try and speak to my AM, who also happens to be leader of Plaid Cymru about what policies his party has towards older autistic people, maybe others could do this too with thier own politicians?

I get how frustrating it must be for researchers to spend so much time and effort as well as money, only to have thier research ignored outside of their own peer groups. Organisations such as Age, need to be aware of whats coming thier way in the near future and to engage with us.

I think part of the problem is that of a similar cliff edge to that faced by those freshly out of full time education, reaching your 60th birthday shouldn't be an excuse for nobody knowing what to do with you if you have a problem, one ends up to old for adult suport which seems to stop at 59 years 364 days and geriatric services which seem to step in post 60, only at 60 most of us couldn't be termed as geriatric. Services need to be joined up not seperated by artificial ages, you shouldn't need to go through the whole referal process again but be passed on fairly seemlessly and your care, if any ongoing.