Living independently-thoughts welcomed

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There is a presumption that living independently, outside of hospital, is an all or nothing thing. Some people need supported housing. Others need support to live in standard accommodation. There is a lot of emphasis on symptoms but little on how people are coping practically ie cleaning.cooking,bills,hygiene, DIY,household repairs etc etc .
I'm one of those that needs such support but do I get it -NO! This is despite it being said that I have 'Limited ability to live independently in the community'

Basically if you are not a danger to yourself or others it's 'Be compliant and take the pills/have your injections' and if your head is just above water, ie you're functioning but at a rather low level, then don't expect any help or support.

I would struggle to live independently, to keep on top of cleaning, groceries, cooking etc (paying bills isn't as hard with setting the bills to come out automatically from my bank account). I doubt that any healthcare professional or government agency would understand this though because I have above average IQ.

Even with an ASD level 2 official diagnosis, I don't think there would be any supports in the community for me. They are probably reserved for level 3 only, if they even exist at all. Publicly funded autism support for adults is very difficult to get here. Parents have even been known to drop their autistic adult children off at hospitals and leave them there or make them homeless just so that they can get access to publicly funded programs, that's how desperate they are.

I get you about the above average IQ thing. The trouble with me is it doesn't stretch to applying it to practical situations.

I think the UK is not very good about help for those who are not deemed to be in the severe range of autism. So-called higher functioning or even those deemed to need "some" support don't seem to actually get much or any at all!

It's not a great situation. With all the government funding cuts and stretched budgets, I really believe that the "powers that be" are trying in every way to quietly ignore or turn away anyone who needs help of anything but the most urgent and pressing kind.

I believe this is happening even in terms of physical illness; it strikes me that unless you are bleeding-out on the doctor's office floor, they will try to send you away with advice to just take painkillers bought at Boots chemist. . .

Back in the old days, anything the GP couldn't figure out, you were referred right away to a specialist. That's not happening anymore unless, like I say, you are visibly, practically dying in front of the GP.

I employed a bit of hyperbole there, but you get the gist of what I'm saying.

It's not a good situation.

In Connecticut, they are laying off caretakers to balance the budget.
Roses for Autism gets money for their programs because they can get people off the dole and lower taxes.

In the USA everyone seems to want lower taxes, even the poor people who get more out of the system than they pay in.

What does this have to do with the situation in the UK. I don't know, but hopefully the OP will feel better.

SaveFerris, indeed, the NHS/government are cutting back on everything, and two years waiting lists is becoming normal. I had to pay privately just to get seen quickly and avoid an NHS wait time, but I could only do that because I had some decent savings at that time; the only problem being I now no longer have any savings! And also, my private assessment will not be accepted if I need to apply for government help of any kind. . . which there is none for ASD level 1 anyway. . .which is why I just said "f-ck it" and got the private one in the first place. Because knowing there is so little out there for people who are not deemed desperate cases, I genuinely didn't believe that even an NHS diagnosis would get me any official help anyway, the way things are in this country, and the way things are going.

Yep, I think things are just bad everywhere.

It seems that the lack of funding for ASD,NVLD etc and mental health problems is universal.

If you did win the lottery and become rich, who could you hire to teach you independent living?

Most NTs don't understand Aspies. But no two aspies are alike, so the chances of an Aspie knowing all about your particular issues becomes rather small. Plus the fact that Aspies aren't likely to get into social services type jobs to begin with.

If you were rich it would make sense to just hire a man servant like "Batman" or Tom Brady. Tom is a US football player for the New England Patriots. He is unusual in that he has played for too many years at an elite level of play. Normal people get old and retire.

I know what you mean firemonkey. I have physical disabilities in addition to my AS & other mental 1s that really limit me with living independently. I was stuck living with my parents till I moved in with my girlfriend at 29 because there weren't any other options available to me in my area. My mom really resented me living with them because she felt that her job as a parent should be done by the time I was that age. She threatened to kick me out a lot or call the cops on me when I had meltdowns. She tried to get me qualified for different services/programs but was told I didn't have the rite diagnoses or that I wasn't sever enough in whatever category they were. She tried to get me on some kind of housing assistance & was told I'd have to be living on my own before I could get it but income wasn't enough for me to afford to move out so it was a catch22. I fell into a bad psychotic depression when I was 20 & tried to get help at the parish(Louisiana word for county) hospital because I didn't have my own money to pay to see a psych & was told they couldn't help me because I wasn't an immediate threat to myself or others even thou I had gone to the ER for slashing my arm 9x. My parents had to pay till I got on SSI.

Things are a lot better for me now thou. I don't need to see a psych, I'm on Social Security Disability, Medicare & Medicaid. My girlfriend has disabilities herself & also cant live alone so we sort of help each other out. She does qualify for some services here like Section 8 housing voucher, fuel assistance, food-stamps, & Medicaid that docs in Vermont accept. Louisiana Medicaid doesn't pay docs & psychs enough & they aren't required to accept it so I had to pay for my own insurance & pay deductibles & copays even thou I had Medicaid.