Non-existent support for (high functioning) Autistic adults?

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cyberdad
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23 Aug 2022, 2:05 am

My daughter has the opposite problem. I know high functioning teens who are getting fully funded through the Australian National disability Insurance Scheme but for reasons unknown to us my daughter (who is moderately functional) has been deemed not eligible to classified as disabled? This might be an issue with putting her in a mainstream school but it seems awfully unfair.

On the matter of support, everyone should be adequately supported no matter their needs.



Eliza_Day
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23 Aug 2022, 4:05 am

I don’t think there are any support groups where I live as its a small town.

When I was diagnosed several years ago in my 30s, it was suggested that I attend an Autism group in a neighbouring city, but as I don’t drive and cannot use public transport, I couldn’t go. I was then told to “get a lift off someone”. People always assume you know someone who has a car but I don’t as I’m socially isolated.

One of the problems is that it’s Neurotypical people who are working at these support groups or organisations, and although some of them may be exceptionally knowledgeable about Autism or have Autistic friends/family members, it’s not the same as lived experience. Autistic people need to run at least some of these groups. It could provide excellent employment opportunities for some of us who are able to help others.

We desperately need Autistic counsellors and Therapists, especially on the NHS. The mental health professionals I have seen have done a lot more harm than good and I can’t afford to go private. Providing specialised therapy for Autistic people would mean that there would be fewer of us developing co-morbid issues like depression and social anxiety. These mental health problems can prevent us from working and living a full life, leaving us on the scrap heap.

Apart from social support, we also often need help finding [and keeping] jobs. Supposedly, 85% of Autistic people are either unemployed or underemployed. If true, that is shocking.

I have noticed an increase of women being diagnosed recently, and although it’s great that Autistic women are finally being noticed, the ones who are thriving the most are young, white and middle class. If they aren’t young, they are well educated and established in their careers, and therefore could afford a private diagnosis. Social media platforms are saturated with these women and again, I am happy for them and wish them well, and I appreciate it when they acknowledge their privilege, but were does that leave everyone else? Working class, middle aged, elderly and marginalised Autistic people may as well be invisible, and that’s wrong. Everyone should have a platform and the chance to thrive.



PhosphorusDecree
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23 Aug 2022, 4:39 am

There is finally a service in my town which looks like it may have some stuff for high-functioning adults. Trouble is, I don't currently have the time or energy to get there. I work nearly full time, and there is just no way can I drag myself over to the far side of the city on a weekday every week. I'd run out of holiday time very quickly, and the journey would wreck my nerves for the rest of the week.


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firemonkey
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23 Aug 2022, 7:45 am

I'd classify myself as 'middle functioning'. I live independently with a fair amount of help mainly from my (s)daughter and to a lesser extent my granddaughters. I was given a booklet at the post dx appointment , and later was sent a list of what was discussed at that appointment.

My needs have tended to be overlooked because my interactions with (mental) health professionals are predominately verbally based. That's an area of strength for me. They've very rarely seen me in predominately non-verbal/practical situations where I can really struggle. Luckily my (s) daughter, who has over 25 years experience in the caring profession, is aware of my difficulties. She explained things to the MH team before I moved here. Hence I don't get the pig ignorant negativity and criticism for doing well at x and not at y that I've had so many times before.



cyberdad
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23 Aug 2022, 5:05 pm

firemonkey wrote:
I'd classify myself as 'middle functioning'. I live independently with a fair amount of help mainly from my (s)daughter and to a lesser extent my granddaughters. I was given a booklet at the post dx appointment , and later was sent a list of what was discussed at that appointment.

My needs have tended to be overlooked because my interactions with (mental) health professionals are predominately verbally based. That's an area of strength for me. They've very rarely seen me in predominately non-verbal/practical situations where I can really struggle. Luckily my (s) daughter, who has over 25 years experience in the caring profession, is aware of my difficulties. She explained things to the MH team before I moved here. Hence I don't get the pig ignorant negativity and criticism for doing well at x and not at y that I've had so many times before.


Yeah this sounds like my daughter. After a speech delay she did well in primary and was fine except for her noise phobias which mean't at a critical juncture in her development during middle primary she shutdown socially. There was no support available for her and I paid therapists out of my own pocket who could not help.

She manages ok now but struggles socially and goes through friends almost on a weekly basis.



Joe90
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23 Aug 2022, 5:10 pm

My issues seem to be caused by emotions like anxiety, not so much intellectual or social challenges. All my problems are more or less emotional. And society doesn't understand emotional health problems because we're just expected to "man up" and "get over it". But mental health problems can be very disabling, especially when the world seems so frightening and judgemental.


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firemonkey
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23 Aug 2022, 7:18 pm

cyberdad wrote:
firemonkey wrote:
I'd classify myself as 'middle functioning'. I live independently with a fair amount of help mainly from my (s)daughter and to a lesser extent my granddaughters. I was given a booklet at the post dx appointment , and later was sent a list of what was discussed at that appointment.

My needs have tended to be overlooked because my interactions with (mental) health professionals are predominately verbally based. That's an area of strength for me. They've very rarely seen me in predominately non-verbal/practical situations where I can really struggle. Luckily my (s) daughter, who has over 25 years experience in the caring profession, is aware of my difficulties. She explained things to the MH team before I moved here. Hence I don't get the pig ignorant negativity and criticism for doing well at x and not at y that I've had so many times before.


Yeah this sounds like my daughter. After a speech delay she did well in primary and was fine except for her noise phobias which mean't at a critical juncture in her development during middle primary she shutdown socially. There was no support available for her and I paid therapists out of my own pocket who could not help.

She manages ok now but struggles socially and goes through friends almost on a weekly basis.


I was regarded as 'bright but with significant difficulties'(paraphrasing) at my first school. Was assessed for what we now call cerebral palsy c1962. The result was negative. Other possibilities weren't explored. Did reasonably well during my 1st 16 months at prep school and then my academic performance nosedived. A lot of that I now know to be due to EF deficits. Was regarded as not particularly intelligent by the teachers at public school, and the weird boy who should be bullied by the other boys.

In recent years I've found out that I'm actually quite intelligent , and that a child nowadays similar to how I was from 1961-1975 would be regarded as 2e.

Socialising wise I've always been quite asocial, but not exclusively so. Unfortunately attempts to socialise more have been failure after failure. I've had very few friends. One I naively thought of as a friend at prep school blocked me when I found him on Twitter decades later.

Thankfully I have a very caring and supportive (step)family living nearby.They see me as often as possible. The last time I saw one of my birth family was my father in late 2018. I've not seen my brother and sister since moving here in September 2017. I do exchange frequent emails with my brother.



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23 Aug 2022, 8:32 pm

The support you get is the support you find / make/ insist on yourself. I'm freelance, but I work with an agency that is very understanding of my differences, after I carefully explained them, but this isn't a matter of formal policy. Likewise, my partner is very understanding. At other times, I've had to exist on conditions I required, and had to walk away if they were not met. None of these things were just handed to me.


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23 Aug 2022, 10:13 pm

Actually, most of the points I would usually like to bring up on this topic have been made, except for the one about the delicacy required with terms like high and low functioning, and how much that complicates treatment and support as the two poles may as well have completely different disorders. The kind of support that would be useful to me as a high functioning person would be inadequate for a lower functioning person, and theirs would be useless and likely counterproductive for me, and most programs are going to be focused on those with the greatest needs.


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23 Aug 2022, 10:43 pm

None that I know of except self experimentation, self advocacy and with a lot of trials and errors with methods or self care and varying professionals from what I read about.

I don't have any formal support. It doesn't exists here unless being lucky or being privileged.

I don't have a support specifically for autism.
Closest I get was my Sped teacher, but even she has limits.

In fact autism is the least of my problems.
And the problem is that my problems are dismissed as a part of autism.

It's not. So if not autism, then some character flaw.
Not considering an alternative that I might've something untreated and undiagnosed.

I have personal supports as a person.
But half of that is just familial obligation over me.
I don't want it because it doesn't particularly solved my problems so far, and I don't want to use them and I certainly refuse to put a burden on anyone in my family and more so in areas outside their capacity so I'd keep it to myself.

At worst, I'm actually mid-functioning.
Except, I fluctuate so much. My best days and worst days is basically night and day, inside and outside, that I'm sure there's something wrong with it.

Again, it's either dismissed as a part of autism, my character and attitude... :roll:
Or even so far to say it's "normal" for women/working adults/aging to deal with it, I just happened to be autistic with a crappy attitude about it.


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Eliza_Day
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24 Aug 2022, 1:00 am

firemonkey wrote:
My needs have tended to be overlooked because my interactions with (mental) health professionals are predominately verbally based. That's an area of strength for me. They've very rarely seen me in predominately non-verbal/practical situations where I can really struggle.


Same. I’m articulate and well spoken which has always counted against me. I don’t stim when I’m around people I don’t know either, and I’m able to sit still and remain calm and polite in assessments. They don’t see me before the assessment when I’m having a panic attack or afterwards when I have a melt/shut down.

I don’t have any kind of support, never have had. My Mum has always done what she can for me.



cyberdad
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24 Aug 2022, 3:08 am

Dox47 wrote:
Actually, most of the points I would usually like to bring up on this topic have been made, except for the one about the delicacy required with terms like high and low functioning, and how much that complicates treatment and support as the two poles may as well have completely different disorders. The kind of support that would be useful to me as a high functioning person would be inadequate for a lower functioning person, and theirs would be useless and likely counterproductive for me, and most programs are going to be focused on those with the greatest needs.


^^^ Agreed



cyberdad
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24 Aug 2022, 3:12 am

firemonkey wrote:
I was regarded as 'bright but with significant difficulties'(paraphrasing) at my first school. Was assessed for what we now call cerebral palsy c1962. The result was negative. Other possibilities weren't explored. Did reasonably well during my 1st 16 months at prep school and then my academic performance nosedived. A lot of that I now know to be due to EF deficits. Was regarded as not particularly intelligent by the teachers at public school, and the weird boy who should be bullied by the other boys.

In recent years I've found out that I'm actually quite intelligent , and that a child nowadays similar to how I was from 1961-1975 would be regarded as 2e.

Socialising wise I've always been quite asocial, but not exclusively so. Unfortunately attempts to socialise more have been failure after failure. I've had very few friends. One I naively thought of as a friend at prep school blocked me when I found him on Twitter decades later.

Thankfully I have a very caring and supportive (step)family living nearby.They see me as often as possible. The last time I saw one of my birth family was my father in late 2018. I've not seen my brother and sister since moving here in September 2017. I do exchange frequent emails with my brother.


I'm sorry your siblings don't do more to keep in touch.

Yes I can see a lot of similarities with my daughter, she has high intelligence for math/music but due to being asocial during her early years she has been playing catchup now with making friends. A lot of the NTs in her school don't have the patience to tolerate her idiosyncrasies. She seems to have different phone friends every week so not sure what's happening on that front?.

The future is really really unclear on what she wants to do.



firemonkey
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24 Aug 2022, 3:59 am

I had piano lessons as an extra curricular activity at prep school. I was so bad that in the 5 years I did it I was never good enough to pass grade 1.

When it came to Maths I was terrible at geometry. I do reasonably well on high range numerical IQ tests,but I'm very far from being a mathematical genius.



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24 Aug 2022, 4:36 am

Not much you can do outside of providing job placements, pensions or psychiatric for symptoms that do respond to treatment when it comes to high-functioning individuals. Housing too, I suppose. Universities will often have allowances now.

The core deficits of autism are of those, they can't be fixed deals. As someone that's quite stubborn at fixing or adapting to medical thingies, there's no amount of will, medication, talking and/or acronym therapy that can fix say, the social deficits one may have to any appreciable amount. It's transcribed into your genome. Those that do better in that social domain, are almost always just better off in that specific area and can be considered higher-functioning in such. The innate ability to cope helps when it comes to the emotional domain that the symptoms cause.

Most of us aren't blessed with the opportunities many of those with autism have either (wealthy parents, or even just two helpful parents, for example), the faces you see that "succeed" tend to have such. Which tends to be even more important in the end than government aid.

Got no help outside of a roof and one parent doing her best, but I was the least of her worries. Until the disability pension came along that is when I started accumulating labels as an adult. I've been offered jobs by the government through psychiatric, one of which I would have liked to take. I would have been in a better place now even if I would have had to eventually quit due to some life things.



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25 Aug 2022, 10:49 am

Benjamin the Donkey wrote:
The support you get is the support you find / make/ insist on yourself. I'm freelance, but I work with an agency that is very understanding of my differences, after I carefully explained them, but this isn't a matter of formal policy. Likewise, my partner is very understanding. At other times, I've had to exist on conditions I required, and had to walk away if they were not met. None of these things were just handed to me.
That can be hard though because sometimes we need supports to help us stay alive and they are constantly refused to us no matter what we do.


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