older and elderly autistic adults

It's an old thread from last year, I'm afraid.  (Fair point, though.)

It's an old thread from last year, I'm afraid.

I imagine that few people of my father’s age have a diagnosis - there wasn’t any understanding of ASD when they were young and my father had no self-awareness - despite his grandchildren being diagnosed. Most of his family agree that he is probably high functioning but affected much more than we thought. This only became clear after the death of my mother who micro-managed most aspects of his life for all of his adult life until now. 

I have a father in his late 70s who has undiagnosed ASD. Not just an uninformed guess - lots of other family on the spectrum, some with a diagnosis. Happy to speak about our experience. 

Why 'relatives'?  do you assume older autistic people are not capable of giving you that information themselves?? 

If so you maybe better approaching a care home or day centre where the people within are more likely to have severe learning disabilities on top of their autism and maybe more your 'target audience'.

I think pets help. I always have a dog, keeps me grounded in reality enough to not lose contact completely (tend to dissociate and get lost in fantasy - possibly DID or PDA autism). and gives you 'someone else' to keep going for who accepts and loves you unconditionally as well as routine and security. 

I deliberately choose larger black or mostly black breeds/crossbreeds that people tend to give you a wide berth when they see you coming with the dog! or adopt a 'reactive' dog who needs a quiet home with no kids or other dogs and would spend its life in kennels or euthanised otherwise

Even within the 'general population' it has been found people who have pets recover from heart attack etc quicker, those who have to go into hospital tend to leave quicker to get back to a pet and be more motivated to recover enough to be able to walk them again etc (even if they need to use mobility aids such as scooter to achieve this) and get their independence back.

Obviously then also less likely to attempt suicide as it would mean their pet been left alone and possibly rehomed if they had to stay in hospital.

My parents passed years ago. I live alone have no outside support (by choice never contacted anyone after last social worker retired).

All communication is email only and shop online get everything delivered. If I didn't have a dog to walk I wouldn't leave the house at all. Also have other issues mobility/immune system/sensory etc

The sentence about being a researcher is irrelevant to me, take that out and it is still asking for experiences without any information or validation for the request. 

As a researcher doing a post-grad degree, shouldn't your ethics be better than asking annonymously without going through the correct channels and not even stating the university or what field the post grad course is etc? 

yes a very autistic and legalistic exact reply.

At least all avenues get considered on a blog like this!

Martian Tom said:

I think this post would probably fall under Rule 8 of our Community Rules

Martian Tom said:

Someone else may be able to clarify the Rule.

The post didn't start like that, though.  I saw the words 'researcher' and 'research', posted by someone anonymously and with no other information.  Maybe it was jumping the gun - my focusing on the details rather than the broader picture, if you like - but stuff like this has been posted before.  The other thing is, it was posted 4 months ago with no further input from the OP.  Maybe that was because there were no replies, of course.  Maybe, too, if the mods had considered it a violation of the rules then, they would have deleted it - in which case, perhaps it isn't a violation.  

NAS49652 said:

i’m sorry I ever posted here, it was never my intention cause any upset, it was merely a post to gage an interest nothing more.

As far as I'm concerned, you haven't caused any upset.  I was just pointing something out, that's all.  I say again - I think this is very worthwhile research, and I'd be interested in contributing, too.  Some of the other replies may already have given you an indication of general experiences.

I have two comments:

1). To who posted this thread. I think for research studies, it would be *necessary* to post the information of the principal investigator/lab, name of university, the research ethics code, and contact info of the researcher when asked. This is how we know that the research is genuine. Many university psychology studies have a system called SONA where people can sign up for posted studies, and all the information mentioned above will be on there. If you look at www.callforparticipants.com you will see that each experiment will say the university hosting it as well as it's ethics approval information. I can understand starting the thread as an unofficial way to see who is interested, but there is no reason not to give this information when asked, that just seems a bit dodgy. 

2). To people who have commented that this is a violation of the rules. If the question was posted as "I'm interested in hearing more about the experiences of autistic adults here, in particular what support do you receive once you reach retirement age, where are you living, if you have someone advocating for you, or anyone in your family taking care if you" - basically without the first two sentences saying that "I'm a researcher", then there will be no one saying that they are breaking the rules. How come that first sentence makes so much of a difference?

It is necessary research and probably has sizeable interest, particularly for adults who need support and for their families. It would be a good one to do officially. I hope it is going/has gone well. I've had previous experience elsewhere of someone pretending to do research. I apologise. Thank you for replying. Even if I still haven't a clue who you are!  I hope your study and family do well. 

This was just an invitation to get in touch, everything else would be done through my university. i’m sorry I ever posted here, it was never my intention cause any upset, it was merely a post to gage an interest nothing more.

But I think Alice's point is still right.  This kind of thing happens a lot, which is why research requests should first of all go to the email address mentioned in Rule 8.  I'm sure that both your research and your intentions are genuine, but when they are made by an anonymous person, how can we ever be sure?  The forums have had lots of issues with trolls.  We also get a lot of people who post anonymous questions and get answers from people wishing to help... but that's as far as it goes.  It's nice to at least know we're talking to a name, and someone with profile details, rather than a number with an empty profile.

I also agree that this is necessary research, and I'm glad it's something someone is prepared to take up.

I’m sorry you feel this way. My research is genuine and invites RELATIVES of older autistic adults to participate. My personal details and details of the study are available once interest has been expressed. 

You have come here anonymously. This appears to me similar to an anonymous phone caller who wants to do a survey then asks personal questions. I find that both devious and rude. Please go through the proper channels if you are genuine. If you ARE genuine I will join in.  If you are not prepared to do that, please don’t be taking advantage of us. 

The stats bother me quite a bit so I think I'll bump this into another thread.

I'm 163 years old and retired. I have the full support of the NHS and Social Services in all their glory what more could I need in my cardboard box under the railway cuttings at the side of the canal while my family are in their detached houses which are empty as they go skiiing or to the Maldives for winter.  Life is just amazing even though leprocy has left me with just one left thumb which I talk to as my trusted companion - I am never lonely.  

Please refer to the rules and gain proper verification. 

I wish you luck with your research and hope you take it forward afterwards as it is valid research. 

Martian Tom said:

I think this post would probably fall under Rule 8 of our Community Rules:

Requests for research study subjects and surveys need to be directed to research@nas.org.uk for data protection and research ethics reasons. Further information can be found on our research pages. Please be advised that any requests for research subjects or surveys posted on the Community will be deleted without warning.

Forum members only have the requesters word for it! 

It looks genuine but needs validation.