Should i try to get diagnosed?

[Emerald]

Hi,

This is my first post. I am in my 60's and have just requested an Autism and Adhd assessment from my gp.
I feel i would like the validation of an explanation for my lifelong difficulties.
But, I am also concerned that being diagnosed might be used against me , especially as i get older, and that people might make decisions on my behalf with regard to care or health or housing as I age, on the grounds that i am autistic.

I would like to know if anyone else has any experience regarding this.

Cheers!

 

[monkeyclogs]

Hi Emerald

welcome to the forum.

what country are you in as that might make a difference to your rights.

In the UK capacity os defined as having the ability to understand and weigh up information and communicate your decision. I can't see how they could argue you have capacity given you're 60 and have got this far in one piece

it might also help to have the diagnosis given you don't know the future and in a few decades you could require elderly care which may be more challenging for them deliver appropriately if the neurodiversity is unknown.

(i'm 46 a very complicated recently diagnosed but now medical professionals have established the neurodiversity element it's made a big difference to how they treat me!)

late diagnosis is a rollercoastser hang around because i've found this community invaluable in unravelling my confusion!

 

[Outdated]

I would like to know if anyone else has any experience regarding this.

Whether or not to get a diagnosis really depends on what you're going to get back out of it, and that largely depends on what country you live in.

I didn't start finding out about autism until I was in my early 50s, and that was a revelation and a half! Finding out about autistic burnout explained to me how I ended up running away from society and living a semi feral lifestyle in a remote region near Darwin.

Getting a formal diagnosis - ASD2 - plus my previous history of struggles got me on the disability pension. Fully retired at age 55.

 

[Emerald]

Whether or not to get a diagnosis really depends on what you're going to get back out of it, and that largely depends on what country you live in.

I didn't start finding out about autism until I was in my early 50s, and that was a revelation and a half! Finding out about autistic burnout explained to me how I ended up running away from society and living a semi feral lifestyle in a remote region near Darwin.

Getting a formal diagnosis - ASD2 - plus my previous history of struggles got me on the disability pension. Fully retired at age 55.

I'm in the uk. This is the first forum I've ever tried. Im struggling with the phone screen being covered in adverts...but i wanted to say im very glad for you to have a pension and freedom to live how you like.

 

[Emerald]

Whether or not to get a diagnosis really depends on what you're going to get back out of it, and that largely depends on what country you live in.

I didn't start finding out about autism until I was in my early 50s, and that was a revelation and a half! Finding out about autistic burnout explained to me how I ended up running away from society and living a semi feral lifestyle in a remote region near Darwin.

Getting a formal diagnosis - ASD2 - plus my previous history of struggles got me on the disability pension. Fully retired at age 55.

Hi Emerald

welcome to the forum.

what country are you in as that might make a difference to your rights.

In the UK capacity os defined as having the ability to understand and weigh up information and communicate your decision. I can't see how they could argue you have capacity given you're 60 and have got this far in one piece

it might also help to have the diagnosis given you don't know the future and in a few decades you could require elderly care which may be more challenging for them deliver appropriately if the neurodiversity is unknown.

(i'm 46 a very complicated recently diagnosed but now medical professionals have established the neurodiversity element it's made a big difference to how they treat me!)

late diagnosis is a rollercoastser hang around because i've found this community invaluable in unravelling my confusion!

 

[Cloudy Stuart]

Hi,

This is my first post. I am in my 60's and have just requested an Autism and Adhd assessment from my gp.
I feel i would like the validation of an explanation for my lifelong difficulties.
But, I am also concerned that being diagnosed might be used against me , especially as i get older, and that people might make decisions on my behalf with regard to care or health or housing as I age, on the grounds that i am autistic.

I would like to know if anyone else has any experience regarding this.

Cheers!

As Outdated says, this may be different from country to country. Although I was diagnosed quite late at age thirty seven I am now in my 60s. There is no indication that I am being treated differently except in one respect. I live in the U.K. and since I entered my sixties I have noticed that bureaucracies of many kinds are relating to me as someone who will soon retire. I have noticed that being older and greyer often prompts more consideration from other people. I feel as if I am entering my Gandalf years (!).

When I was diagnosed back in 1999 it brought with it a new perspective on my undiagnosed life just as if I had been one person before and another person after. This odd feeling of being divided became less noticeable once I understood that a great deal of anxiety and tension had been taken away. I no longer had to hide, or 'mask.' My difficulty with understanding the social landscape and the social strategies that people use was no longer in any way shameful or embarrassing. These days many families are discovering they have family members who are on the spectrum. I was, and still am, very confused around strangers, but being diagnosed means I can explain this. I also wear an autism badge, but that is my own choice and is not perhaps something for everyone who is diagnosed.

When I was diagnosed a photographer who is severely dyslexic explained that taking photographs helped him show others how he felt about the world. He said he felt he could represent himself in local exhibitions or through handmade greetings-cards in gift shops without ever relying on words. Photography helped him specifically, even if it was photographing little plants or the tiny creatures scurrying about his backyard.

Finally I would say diagnosis is a step that works out very well if you are thinking about going back to education., even in a very small way. The support and understanding on all courses and at all levels is very encouraging these days, partly because so many successful people have opened up about being on the autistic spectrum.

 

[Emerald]

Hi Emerald

welcome to the forum.

what country are you in as that might make a difference to your rights.

In the UK capacity os defined as having the ability to understand and weigh up information and communicate your decision. I can't see how they could argue you have capacity given you're 60 and have got this far in one piece

it might also help to have the diagnosis given you don't know the future and in a few decades you could require elderly care which may be more challenging for them deliver appropriately if the neurodiversity is unknown.

(i'm 46 a very complicated recently diagnosed but now medical professionals have established the neurodiversity element it's made a big difference to how they treat me!)

late diagnosis is a rollercoastser hang around because i've found this community invaluable in unravelling my confusion!

Im struggling with the screen being covered in moving adverts. I don't do social media. But i do need support! I live in the UK. I just dont know if there might be adverse consequences to being diagnosed. I am already diagnosed with Complex PTSD but no one has ever heard of that, even my gp just put PTSD on my record though I was diagnosed by a psychiatrist !

 

[Emerald]

As Outdated says, this may be different from country to country. Although I was diagnosed quite late at age thirty seven I am now in my 60s. There is no indication that I am being treated differently except in one respect. I live in the U.K. and since I entered my sixties I have noticed that bureaucracies of many kinds are relating to me as someone who will soon retire. I have noticed that being older and greyer often prompts more consideration from other people. I feel as if I am entering my Gandalf years (!).

When I was diagnosed back in 1999 it brought with it a new perspective on my undiagnosed life just as if I had been one person before and another person after. This odd feeling of being divided became less noticeable once I understood that a great deal of anxiety and tension had been taken away. I no longer had to hide, or 'mask.' My difficulty with understanding the social landscape and the social strategies that people use was no longer in any way shameful or embarrassing. These days many families are discovering they have family members who are on the spectrum. I was, and still am, very confused around strangers, but being diagnosed means I can explain this. I also wear an autism badge, but that is my own choice and is not perhaps something for everyone who is diagnosed.

When I was diagnosed a photographer who is severely dyslexic explained that taking photographs helped him show others how he felt about the world. He said he felt he could represent himself in local exhibitions or through handmade greetings-cards in gift shops without ever relying on words. Photography helped him specifically, even if it was photographing little plants or the tiny creatures scurrying about his backyard.

Finally I would say diagnosis is a step that works out very well if you are thinking about going back to education., even in a very small way. The support and understanding on all courses and at all levels is very encouraging these days, partly because so many successful people have opened up about being on the autistic spectrum.

I am in the UK too. I guess im worried about social workery types, who seem to have power out of all proportion to their knowledge, being able to take charge of my life as I get older.

 

[Outdated]

Im struggling with the phone screen being covered in adverts...

Paying for a membership gets rid of all the adverts. That used to be quite affordable until recently. Or perhaps try some ad blocker plugins for your browser.

I am in the UK too. I guess im worried about social workery types, who seem to have power out of all proportion to their knowledge, being able to take charge of my life as I get older.

That was also one of my concerns too. During my diagnosis I was told that I was eligible to have specialised autism assistants to come and check up on me but that idea terrified me, my first thought was of my mother telling me how I live like a pig.

Australia and UK have very similar health and welfare systems but I think Australia is much more organised and cohesive with support services. If you want to try and push for the pension it's handy to know that all the rules change once you're over 55. Their attitude towards you changes as well, and it's a lot easier for you.

In my state of South Australia we have a specialised autistic diagnostic centre and their services are government subsidised, so total cost to me was Au$500 - about 250 quid. That wasn't the best part though, because I went through a government recognised institution social services recognised and accepted my diagnosis without question, where as if I'd gone through regular psychiatrists I would have been asked to get second and third opinions.

 

[Cloudy Stuart]

I am in the UK too. I guess im worried about social workery types, who seem to have power out of all proportion to their knowledge, being able to take charge of my life as I get older.

It is natural to worry. I worry about all kind of things. I used to worry that nobody thought about me. Then I worried that lots of people were thinking about me. I think ultimately there will one day be people who will feel they have a duty to look after us (my 88 year old mother is in that position). My guess is that this won't happen simply because of a diagnosis of an autistic condition. I think something physical and medical would have to be there to warrant any intervention of the kind you describe. This might include some forms of mental illness. With autistic conditions we were born like this. We know our way around autism well enough to cope, which exasperates researchers because they have barely understood autism at all. Oddly I think getting a diagnosis of an autistic condition will actually empower you in many situations.

When I was diagnosed I picked out ways that I lived each day and decided they were autistic and I decided other behaviours listed in books did not apply to me. I decided I was somehow 'just visiting' or that I had 'grown out of' some of the characteristics. This was sort of true because autism effects every individual differently. However later, and I mean years later, I understood that for all people with an autistic condition it is not about whether one characteristic is stronger in us than another. Instead I understood that autism is a way of life and also a part of life. It will be a part of our frustrations and our setbacks, but it will also be a part of our successes.

The last thing I would say is that for all autistic people there is a pronounced ability to concentrate - in fact to out concentrate just about everybody else. This is such a powerful tool in the autistic tool-kit. It took me quite some time after diagnosis to learn that this ability is something to be proud of. It helped me look back and realise that some achievements in my life could not have happened without the concentration that comes with the autistic spectrum. It does not make up for periods of loneliness, but it made me appreciate that I had my own path and my own way of doing anything.

 

[monkeyclogs]

Im struggling with the screen being covered in moving adverts. I don't do social media. But i do need support! I live in the UK. I just dont know if there might be adverse consequences to being diagnosed. I am already diagnosed with Complex PTSD but no one has ever heard of that, even my gp just put PTSD on my record though I was diagnosed by a psychiatrist !

i'm very familiar with this situation unfortunately. My diagnosis pre-autism assessment was incredibly complex and included cptsd. i never fully accepted that, it was really confusing in my case because some of the symptoms predated the trauma they cited. As i'm unravelling everything i think the cptsd was more ongoing trauma of trying to navigate the world with undiagnosed neurodiversity which mimicked cptsd. ie. I wasn't presenting that way because of past trauma but was experiencing repeated trauma, undiagnosed neurodiversity was confusing everyone.

since diagnosis a lot of my cptsd symptoms have simply disappeared. I'm still left with question marks over the rest of my diagnoses, but in the process of complex process of rationalising things with drs.

i'm absolutely not saying you will have the same path, because everyone is different. but I think given your current diagnosis it's important to get the autism assessment. (In reference to you original question of "should I try to get diagnosed" yes, i think that's probably going to help clear things up either way)

 

[monkeyclogs]

I am in the UK too. I guess im worried about social workery types, who seem to have power out of all proportion to their knowledge, being able to take charge of my life as I get older.

do you have a lasting power of attorney in place? I have a friend who is a social worker and that is the best protection against strangers making decisions you might not agree with on your behalf.

I'm also in the process of creating an advanced decision statement which whilst not legally binding is always taken into consideration by social workers in particular apparently

info on mind website

Advance decisions - legal information https://share.google/u0A2x7pCtuQn6L5Sz

 

[Emerald]

It is natural to worry. I worry about all kind of things. I used to worry that nobody thought about me. Then I worried that lots of people were thinking about me. I think ultimately there will one day be people who will feel they have a duty to look after us (my 88 year old mother is in that position). My guess is that this won't happen simply because of a diagnosis of an autistic condition. I think something physical and medical would have to be there to warrant any intervention of the kind you describe. This might include some forms of mental illness. With autistic conditions we were born like this. We know our way around autism well enough to cope, which exasperates researchers because they have barely understood autism at all. Oddly I think getting a diagnosis of an autistic condition will actually empower you in many situations.

When I was diagnosed I picked out ways that I lived each day and decided they were autistic and I decided other behaviours listed in books did not apply to me. I decided I was somehow 'just visiting' or that I had 'grown out of' some of the characteristics. This was sort of true because autism effects every individual differently. However later, and I mean years later, I understood that for all people with an autistic condition it is not about whether one characteristic is stronger in us than another. Instead I understood that autism is a way of life and also a part of life. It will be a part of our frustrations and our setbacks, but it will also be a part of our successes.

The last thing I would say is that for all autistic people there is a pronounced ability to concentrate - in fact to out concentrate just about everybody else. This is such a powerful tool in the autistic tool-kit. It took me quite some time after diagnosis to learn that this ability is something to be proud of. It helped me look back and realise that some achievements in my life could not have happened without the concentration that comes with the autistic spectrum. It does not make up for periods of loneliness, but it made me appreciate that I had my own path and my own way of doing anything.

This is really helpful, thank you!
I do feel that i have learned to live with my traits, and so long as i am unmolested by other's demands i can keep myself well. The lonliness is hard, though, i wonder about getting a dog.

 

[Emerald]

do you have a lasting power of attorney in place? I have a friend who is a social worker and that is the best protection against strangers making decisions you might not agree with on your behalf.

I'm also in the process of creating an advanced decision statement which whilst not legally binding is always taken into consideration by social workers in particular apparently

info on mind website

Advance decisions - legal information https://share.google/u0A2x7pCtuQn6L5Sz

Thats a useful link, thanks.
I just dont want it to be like my childhood, warm milk and nylon sheets etc!