Getting together with a research request

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.

So you think there would be no point in researching how things like how aging effects autists?

Are older poeple more likely to be pushed towards dementia diagnosis and pathways rather than anyone wondering if they're autistic?

How should care and social services approach autistic adults, there's a total lack of preparedness in elder care services for autistic people, a cohort thats growing larger as well as older. Should cognitive tests such as Addenbrooks one be revised for autistic people? 

Everyone has baggage, some people have more baggage by the time they're 16 than others do at 60, that differential has always been there and always will be.

If autistic people are already struggling getting things like reasonable adjustments in the workplace, how will we be able to enforce oue rights without the research

One of the things we see over and over again on this site is the total lack of any understanding of or provision for understanding of how late diagnosis can feel like a wrecking ball through life? It's not therapy that people often need, it's practicle support for themselves and their families, especailly partners who may not want to accept a diagnosis and think their partner should be able to be "fixed"

How are autistic people effected by the double whammy of being older, unemployed, in need of retraining and autistic, sadly many employers if given the choice will employ an NT, ot if they employ an ND it will be for the wrong reasons, like diversity washing?

Theses are just the question off the top of my head, I'm sure I can come up with others, and others will come up with more.

TheCatWoman said:

How should care and social services approach autistic adults

I don't think they can provide a solution that will work for enough autists to be effective for them to learn to be honest. This is where I see the single biggest issue - to learn they need enough consistency to make their training viable and I just don't see this amongst the posters here.

The solution would probably have to be one tailored for each individual based on their needs and their ability to cope with their autistic traits, as well as the host of other age related conditions that we share with neurotypicals.

It probably won't be cost effective so we will continue to fall between the cracks as we have done in life.

TheCatWoman said:

If autistic people are already struggling getting things like reasonable adjustments in the workplace, how will we be able to enforce oue rights without the research

What exactly do you propose this research include? I think that once you get down to the nitty gritty you will find there is a huge discrepancy between individuals needs and the research will show nothing conclusive.

There is probably more scope for success if we can focus on individual specific issues but you seem against that idea in previous posts where you call for a more holistoc approach to care.

TheCatWoman said:

One of the things we see over and over again on this site is the total lack of any understanding of or provision for understanding of how late diagnosis can feel like a wrecking ball through life?

This probably stems from the fact so many autists have built up a series of walls and defences to allow them to function in society to a greater or lesser extent and the diagnosis points these artifical constructs out for us, and when we start to look over the top we get scared with what we see.

Everybody will have different types of walls / defences and different coping techniques plus different levels of self awareness so each will have their own journey to follow to get to wherever their personal choice of destination is.

All will be different and I cannot see a conventional training course that will work for health care workers for this - it takes the skills and training of a psychotherapist to understand all that is involved in the mind of the individual to offer the level of help needed.

I agree a solution would be great but I think the approach you propose here is too simplistic to work effectively. It would be like giving a half day training course on brain surgery and expecting good results - the skills will not match the magnitude of the task.

This seems reflected in the numbers of people who get a late diagnosis without therapy and continue to struggle even years later.

TheCatWoman said:

Another bug bear for many of us is bright lights, we would need to have dimable lighting or lamps instead of an overhead strip light

That’s a big issue for me. The newer hospitals here have less harsh lighting but it’s still far too bright. it’s not so much the personal light that causes me bother, it’s the over bed light that will get switched on when somebody does the observations or a doctor does the rounds. Even though it’s a ceiling light, there must be some way of directing the light in a more controlled fashion as they can do it in operating theatres. 

The noise level in hospitals is dreadfully high in many wards, and it can go on all night. We need to be prioritised to have a bed in a quieter area away from ward stations, doors and TVs. 

The thing I am most worried about is becoming incapacitated and needing to be in a care home or hospital. People where I live aren’t getting care packages fit for their needs. Ideally I would like to stay in my own home, but currently there isn’t enough social care support for that to happen. I live on my own and I have no family apart from an extended family member who I don’t see often. 

I am trying to keep fit by eating well, walking miles every day/pilates/physiotherapy exercises, but life is a lottery.

So what would you suggest then Iain? You seem very good at shooting down the ideas lf others, but not so good at coming up with ideas of your own

***************************

Homebird I think thats an excellent idea, it wouldn't be a panacea but it would be a good start. I had a conversation with a friend who's a retired nurse who specialised in dementia assessment and care, we had a very different takes on the need for personal space, as a nurse it was a red flag if someone wanted time alone, they call it "self isolating", to us it's a normal way of being and we really need that time and not to be hassled into activities that we don't want to do. For instance, if the tv in the day room had soaps and/sport on, I would choose to go elsewhere, as I intensely dislike both, I wouldn't expect others to change thier veiwing habits to accomodate me and it would seem the fairest way to deal with things.

Another bug bear for many of us is bright lights, we would need to have dimable lighting or lamps instead of an overhead strip light. To me this would be a reasonable adjustment.

It is said that being ND means you're more likely to suffer from various types of dementia, why is this? Could it be because some of the diagnostic criteria? For instance, I'd have problems counting backwards in 7's from 100, it's nothing to do with possible dementia, but everything to do with never having been good with numbers. I took this example from The Addenbrooks test which is the standard test administerd to those with suspected dementia. I've also never been good with tessalation tests.

How would people with ADHD, who struggle to concentrate on tasks cope with this test?

Research isn't about answering one question, as with many other things you answer one question and a dozen more pop up. Research can be wide or narrow, as wide as what's the general experience of older ND people? Or as narrow as what brain changes are there in ND people with dementia?

Thank you to those who are adding to this conversation instead of trying to shut it down, there are some really good ideas here.

So what would you suggest then Iain? You seem very good at shooting down the ideas lf others, but not so good at coming up with ideas of your own

***************************

Homebird I think thats an excellent idea, it wouldn't be a panacea but it would be a good start. I had a conversation with a friend who's a retired nurse who specialised in dementia assessment and care, we had a very different takes on the need for personal space, as a nurse it was a red flag if someone wanted time alone, they call it "self isolating", to us it's a normal way of being and we really need that time and not to be hassled into activities that we don't want to do. For instance, if the tv in the day room had soaps and/sport on, I would choose to go elsewhere, as I intensely dislike both, I wouldn't expect others to change thier veiwing habits to accomodate me and it would seem the fairest way to deal with things.

Another bug bear for many of us is bright lights, we would need to have dimable lighting or lamps instead of an overhead strip light. To me this would be a reasonable adjustment.

It is said that being ND means you're more likely to suffer from various types of dementia, why is this? Could it be because some of the diagnostic criteria? For instance, I'd have problems counting backwards in 7's from 100, it's nothing to do with possible dementia, but everything to do with never having been good with numbers. I took this example from The Addenbrooks test which is the standard test administerd to those with suspected dementia. I've also never been good with tessalation tests.

How would people with ADHD, who struggle to concentrate on tasks cope with this test?

Research isn't about answering one question, as with many other things you answer one question and a dozen more pop up. Research can be wide or narrow, as wide as what's the general experience of older ND people? Or as narrow as what brain changes are there in ND people with dementia?

Thank you to those who are adding to this conversation instead of trying to shut it down, there are some really good ideas here.

TheCatWoman said:

Another bug bear for many of us is bright lights, we would need to have dimable lighting or lamps instead of an overhead strip light

That’s a big issue for me. The newer hospitals here have less harsh lighting but it’s still far too bright. it’s not so much the personal light that causes me bother, it’s the over bed light that will get switched on when somebody does the observations or a doctor does the rounds. Even though it’s a ceiling light, there must be some way of directing the light in a more controlled fashion as they can do it in operating theatres. 

The noise level in hospitals is dreadfully high in many wards, and it can go on all night. We need to be prioritised to have a bed in a quieter area away from ward stations, doors and TVs. 

The thing I am most worried about is becoming incapacitated and needing to be in a care home or hospital. People where I live aren’t getting care packages fit for their needs. Ideally I would like to stay in my own home, but currently there isn’t enough social care support for that to happen. I live on my own and I have no family apart from an extended family member who I don’t see often. 

I am trying to keep fit by eating well, walking miles every day/pilates/physiotherapy exercises, but life is a lottery.