The Policy Gap - Older adults on the spectrum

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http://www.autismiliitto.fi/files/1237/ ... port-2.pdf

Only the UK, so far as I am aware, has given serious and comprehensive thought to this gap in policy.
The recent Vatican conference treated older adults with autism as if they were non-existent. Many organisations carry on this prejudice and omission.

The lack of attention can be seen as a form of ageism, and for seniors with ASD, they can experience a triple whammy of ageism - 1) just being older and experiencing the prejudice inherent in youth-centred culture 2) being on the spectrum and being older and not being included in policy at all 3) having their life experiences of ASD marginalised, ignored, or discounted by younger people who are themselves on the spectrum, and have no informed concept of growing up in a world ignorant of ASD and its effects.

One of my New Year's Resolutions for 2015 is to address this policy gap with stakeholders in New Zealand,
using the policy discussion at the top of this as a starting point for further discussion.

AMEN.

I've sort of noticed that if you're not a cute-and-cuddly little kid or a quirky offbeat teenager, AS organizations don't really want to know. After all, adults don't garner donations like kids do.

I just read this today... http://www.rescuepost.com/files/diagnos ... e-2010.pdf

Sometimes people and organizations forget that everyone was once a little kid. Children are not little adults. Adults are big kids.

Thank you heaps for posting this. It will be another valuable resource for my 2015 project and has a lot of useful references at the end.

One of the issues that is, as yet, completely unaddressed - no work anywhere has been done so far as I know - is that none of the screening instruments have ever been standardised on an older population sample.

To illustrate what I mean by that, for those who are not sure what it's about, I'll use an example of medical research to show why using research findings standardised on one population cannot be directly translated as valid for a different population. Most of the research we have on cholesterol, statins and heart disease has been standardized on middle aged men. The findings were - and are - applied by most of the medical profession to men and women of all ages, as if all the variables are constant for completely different populations. They aren't constant, as more recent researchers have been and are establishing. For example, one very well designed study found that for women aged 65 or older, the best predictor of risk of heart attack was a raised white blood cell count, and cholesterol levels were of little value, though they were relevant to men.

So - none of the Autism/Aspergers screening instruments have yet been shown to be scientifically valid nor reliable for older populations. Diagnosticians who apply them to older clients should be aware of this, though I suspect they are not, or if aware, are not mindful of the issue, as they lack any direction or training in regard to the needs of seniors on the spectrum.

I don't have time to read these links now (too close to bedtime, too tired), but I will check them out tomorrow. They look interesting. I think it's important to consider autism across the lifespan, since it is a lifelong condition after all.

[quote="B19"][quote="tall-p"]I just read this today... http://www.rescuepost.com/files/diagnos ... e-2010.pdf[/quote]

Thank you heaps for posting this. It will be another valuable resource for my 2015 project and has a lot of useful references at the end.

One of the issues that is, as yet, completely unaddressed - no work anywhere has been done so far as I know - is that none of the screening instruments have ever been standardised on an older population sample.

To illustrate what I mean by that, for those who are not sure what it's about, I'll use an example of medical research to show why using research findings standardised on one population cannot be directly translated as valid for a different population. Most of the research we have on cholesterol, statins and heart disease has been standardized on middle aged men. The findings were - and are - applied by most of the medical profession to men and women of all ages, as if all the variables are constant for completely different populations. They aren't constant, as more recent researchers have been and are establishing. For example, one very well designed study found that for women aged 65 or older, the best predictor of risk of heart attack was a raised white blood cell count, and cholesterol levels were of little value, though they were relevant to men.

So - none of the Autism/Aspergers screening instruments have yet been shown to be scientifically valid nor reliable for older populations. Diagnosticians who apply them to older clients should be aware of this, though I suspect they are not, or if aware, are not mindful of the issue, as they lack any direction or training in regard to the needs of seniors on the spectrum.[/quote]
IMHO care needs to be taken to include older women in the studies, too.

Yeah .

Thank you for posting this. More attention to the issues of older adults on the spectrum is really important, especially for the reasons you mentioned. I can also serve as an important resource for younger people on the spectrum to learn from about how to deal with our condition as we age, which there is frighteningly little information or support available for currently.

This is the only study I know of:

https://archive.org/stream/LATEDIAGNOSI ... 7_djvu.txt

Please post links to others if they exist.

I am delighted to have found this thread - thanks to B19 for signposting me!

I am looking at the same issue, it is a genuine problem. We have a number of people we support - indeed we still support the son of our founder some 40 years on from when she set up the organisation - but their needs are changing. I had seen the NAS report and agree with their findings that a great deal more money needs to be spent; however we are living in austere times and the first thing to get cut is the social welfare budget.

I am lucky to be an Aspie who works in the sector, so at least my specific requirements were met when I started here, but I know I am very very lucky. An ageing population and rising life expectancy coupled with higher rates of diagnosis in western and northern hemisphere countries means we have to be looking forward. As we are all acutely aware, and echoing NiceCupOfTea (great username by the way), it is a lifelong condition we have so we need to be pushing for support from 'cradle to grave' as it were.

From my other post:

I am looking for experiences, thoughts, ideas, suggestions or observations about the types of life and lifestyle changes that can occur in diagnosed ‘spectrumites’ – all of our service users are diagnosed as in the UK this is pretty much mandatory to access funding for support from local social services, unless you are wealthy and can self-fund.

I would also welcome observations/advice from people who support older people with autism and their issues and service or support requirements as they grow older.

I will then feed this into our organisational planning process, explaining where it came from, but anonymised. We are a person centred organisation so take our lead from the amazing individuals we support, so it would be good to be able to have responses from across the global membership here.

When I was looking around for any kind of support locally I found quite a lot aimed at children and/or parents; a fair amount of residential care but virtually nothing for "high functioning" adults in any way similar to myself.

Thank you!

In one psychological sense, many of us are still children.
There is a part of me that stopped "developing" when I was around 10.

That childlike presence inside is such a valuable presence

Yes it can be.

On the other hand this blindness towards the old is something that bothers me more and more.

I see this happen often in regards to pets and adoptions, where the older animals are most often not considered by the public, and worse, often not considered adoptable by shelters.

Of my 5 rescue cats, my oldest Mary Belle is the sweetest soul to have ever graced this planet.
Also, many blind or otherwise handicapped animals are similar in nature, but are systematically avoided by the public. It is obvious to me that things need to be done to change certain perceptions so that we as a species are not so superficial. At present, people systematically overlook, or "dispose" of all types of life to include both pets and people.