Support needs, support experiences.

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Hi all,

I am new to WP. I am an NT student.

I'm conducting a qualitative piece of research for my PhD, the focus of which is older autistic adults (45+).
I am interested in exploring the individual experiences of support services. What has been useful, what has not been useful?
What are the gaps in support service provision?
What improvements need to be made to help people live independent, happy and healthy lives?

I just wanted to start this discussion to get an idea of what areas you feel are important and that I should explore further through online interviews.

There is not a lot of literature available and what is available tends to be from an NT perspective! So I would be really grateful if you would share your insights.

Thanks
J

Thing is as there is such a wide variety of "typical" people there are a wide variety of autistic people with a wide variety of needs.

As for me I have found WP and support groups helpful in that it is comforting to know others have the same core traits and issues as me. Places like this also really help me understand why I do things the way I do. While the last 2 sentences sound like cliches they could not be more important for those of us who grew up undiagnosed and unrecognized. We just did not know core things about ourselves.

I found vocational rehabilitation to be often a "one size fits all" service. While I found the personnel caring they tried to service people with a variety of disabilities the same way. Example they happily preach the value of networking. Autistics often do not have a massive network of people to call on that most 45+ year olds do. Just the whole idea of both parties pretending this is not about a job or a business deal but just about exchanging information is opposite to the way I think. By our age this is not the first time the glories of networking has been preached to us.

I didn't find out I have Asperger's until my mid 40s, and I am in my mid 50s now. Some of us may need help with housing, and many of us may need financial and medical assistance. Some of us may benefit from job training programs designed for those on the spectrum. Some may benefit from therapy. Some may benefit from life assistance, like help with house work, paperwork, help running errands, etc.

I receive govt assistance due to other health issues, and am no longer able to work because of those other health issues. Because of my Asperger's I never had a good work history, and had many jobs, but none for longer than two years, and was often unemployed when I was still able to work. This was mostly due to my then unknown Asperger's.

About ten years ago some relatives bought an old trailer in a trailer park for me to live in, and I pay them rent out of my govt assistance, as some of that money is meant for housing costs. The trailer is rather old and not in the best shape, but it's definitely better than some other places I've lived, and has the added benefit that I am able to live alone here. I don't do well living with others. I spent most of my life living with various relatives, and we all drove each other crazy when we had to live together. We all get along better now that we don't have to live together. I definitely like living alone, and living here.

I am not a candidate for therapy. I had tons of it as a child and teen, and I hated it. Some of it was just me and the docs and therapists, and some was family therapy. Either solo or as a family group, I couldn't stand it. I always resented being asked personal questions, and often made up answers or gave false answers to questions I didn't want to answer. I did go on my own for therapy for depression for a while as an adult, but that was so I could temporarily qualify for govt medical assistance long enough to get my more serious health issues treated, and have a paper trail of proof of those conditions. Once I had medical treatment records of my more serious health problems I was able to qualify for disability, and a few months later the therapist said I didn't need to see her any more. That suited me fine because I never warmed up to her.

In my case, the one major area where I still need some additional help is house keeping, primarily dishes, dusting, and vacuuming, and maybe some help with paper work. I have relatives who mow my trailer lot lawn for me, but it's hard for me to handle the inside work. One of my health issues is bad knees, another is sleep apnea, yet another is IBS. I have others, too, but these three are a real problem. Sleep apnea keeps me tired all the time, IBS keeps me in the bathroom too much of the time, and my bad knees make it hard to stand or walk around doing chores, so nothing much gets done. Everything is further complicated by the fact that I have Executive Function Disorder (EFT) as a co-morbid with my Asperger's. EFT fits very well with Asperger's as from my own experience, it appears to be a mental processing problem, and mental processing issues are a part of all Autism spectrum disorders.

I have thought of having someone in to help with chores at least once a week, but I can't stand having strangers around in my home. I manage to deal okay with people when I run occasional errands, but in my home, I need to not have other people around much, as I am very much a hermit type of person. I am not anti social, though,--just non social.

I hope I have been able to help some. You came to the right place to get Autism spectrum info. There are plenty of forums on a lot of different topics here at WP, and many of the members will be willing to help you out. I've been a member for years, and have found most of the other members to be a nice bunch of people.