Getting together with a research request

I agree. If everyone just did 'easy research', the knowledge base would be very limited. And a lot of money is spent on care, so it should be done right. Guidelines won't change unless there is research to back up what people are saying day-to-day.

I get your reply is grounded in reality but that does not mean that the impact of aging on autists is any less so because of the reality of now.

We all share common traits to greater or lesser degree and we are just asking for research to inform the care providers with at least some knowledge.

And don’t forget Gavin Stewart at King’s College London where he co-leads the ReSpect Lab with Francesca Happé.

TheCatWoman said:

why is there never anything aimed at people my age?

I think the reason is that by this age (you are over 60 if I remember correctly) then you have a lifetime of accumulated issues, traumas, self-taught behaviours, therapies and a range of other health factors that make every individual hugely different and complex than any other autist of the same age.

Add this to the fact that no two autists are alike and there is nothing close to a service that can be designed to help us as a group other than just giving us an individual therapist who has been trained in autism, and this is unlikely to be cost effective.

This nebulous target for the service would mean it would inevitably fail in my view.

Sorry to be negative here but I think this is why we remain untouched as a group because other than the label of autism we share almost nothing uniformly in common.

Thanks Bunny, these are all places that we can write too, maybe one of the things we can ask for, is for the research results to be more widely available? It's all very well the research being out there, but if it's hard to access then it's only really going to help a small group of researchers and maybe the organisations they work for. I think many of us need something we can point to, print out and take to doctors, employers etc. Without the weight of an academic institution behind us it's to easy for us to be dismissed and maybe misdiagnosed.

it would be really good if NAS could help with this too.

Whilst more research is definitely needed, I don't think that middle-aged or older autistic people have necessarily been forgotten.

For example, in recommending future research priorities, this recent paper (August 2025) says that:

• "Aging in autistic populations is a historically neglected but now rapidly advancing area of research".
• the "intersection of aging and autism" is "an emerging and rapidly advancing area of research":

Annual Review of Developmental Psychology - Aging Across the Autism Spectrum

If you (or anyone else here) is interested in taking part in more research opportunities than are necessarily flagged in this forum (and any that you might miss here), here are some examples:

Emailing research@nas.org.uk to register interest in participating in future research (as explained here: NAS - Research work)

University of Cambridge - Autism Research Centre > Participate in research 

Autistica Network - Take part in autism research

University of Bath - Centre for Applied Autism Research

NHS Leicestershire Partnership Trust - Autism research register

I agree with the thoughts. Being a 'Lateling' myself with very little support post diagnosis apart for  an hour once a week for six weeks course trying to describe what autism is.

There is no support in Scotland unless you are in the big cities. The issue is what support do we need as it will differ between individuals. I believe you should be given some psychological therapy to support your diagnosis.

Employment is another avenue that needs exploring as there are so many stories of discrimination.

Yes, I’m up for it.

In Northern Ireland, older autistic people can’t get the support they need, although older non-autistic people can’t get the support they need either, so that would be one concern.

I don’t have much free time today so I’ll come back to you with some more thoughts about this.

I agree! 

Wenn Lawson has written an interesting book on autism and older populations. It draws on some of the research that is out there and highlights the need for further research. I think Wenn is also talking at the NAS professionals conference this year on the subject of aging and autism. 

I will certainly be happy to input and sign the letter.

A good start would be research to collect the concerns and views of the older autistic population. What are the barriers to wellbeing and what enhances wellbeing.  I have a lot of concerns about a lack of awareness of autism in palliative care. 

What the effect of getting diagnosed and then offered limited or no support afterwards. It's such a familiar tale of people asking what help is there to find the answer is none. I feel a study would show the effects of being well supported vs no support would be stark, and be something to base lobbying for improvements on goverment policies.

It would also be interesting to find out how the availability of diagnosis effects people. It's a postcode lottery of whether you can get NHS referal or not (mainly england), and how this effects people? There can be a lot of desperation for those who can't access and want one. 

I've noticed that too, it's not Scotland or Wales lack universities and hospitals were this sort of research can take place either, I don't know the position in Northern Ireland?

What issues would you like to see raised, apart from research falling off a cliff at 25?

Yeah, the research is so narrow, and they only focus on young people -those young people have to grow up too, and the research falls off a cliff after 25. No wonder no one knows much about autism, as they don't bother to find out. Most of it is England only too.