What is the most under-served, under-developed area in support for autistic people?

[LORELEI_MOLINARI_67]

I don't want to beat a dead horse but there is no money and no incentive for young doctors to study autism and its cousins.And many "help" with little knowledge or experience with us at all. AND I AM MAD! I can't get good care unless I come in with a chart and tell them what is wrong and my pain from 1-10........I once had to tell an ER dr. what burnout is and why it occurred and that my child needed off work until her psychiatrist came back from vacation and her medical dr came back from his homeland. She still got fired from the big box store! Once she disclosed her diagnosis she was useless as an employee as far as they were concerned! That is why I started my talking peer support charity. I can't help everyone but my goal is to help 1000 voices be heard, maybe for most it will be the first time some of them. I know I did not feel like anyone "got" me until I talked to a peer who got me and i cried with joy!

 

[IrishInManchesterUK]

A fundamental and vital part of this is post-diagnostic assessments, especially for autistic adults, especially if diagnosed later in life, especially if diagnosed online, to properly, correctly and accurately assess level and type of autism in a systematic way, then to carefully and accurately assess appropriate levels and types of support required in every area of life going forward - without this, it is virtually impossible to move forward in life, especially as more people are being diagnosed later in life, where all the focus is too much on children’s autism and where this must become a basic legal entitlement and a basic legal requirement, where all latest research must be updated and adopted on a regular basis by all providers both public and private - I would seriously question if the NHS in the U.K. in its current form should be tasked with this, it should be by a separate mental health body in the U.K. as attitudes towards mental health and disability, hidden disability, needs to fundamentally and radically change, especially among healthcare professionals and among the general public, by means of education - in the next few years, we are going to have a serious problem with an ageing autistic population who will need enhanced care and we need urgent legislation being passed by Parliament to provide for this, as well as appropriate funding - those in power need to stop with the lame excuses re funding and attitudes that are wearing thin, we have no time for thier nonsense, it needs to stop now

 

[Rahere]

Starting from the lemma everyone on here is high-functioning, I'd just like to repeat my own experience, that the diagnosis for our kind is more full of holes than an instant whip. I was diagnosed by some very senior Harley Street psychiatrists indeed, and they got it wrong! No, I'm not Aspie, I'm Everyday Giver-Gifted Genius. Mary-Elaine Jacobsen described the traits in 1999, and they should have had that on their minds, but instead they used their own overload to justify utter balderdash, given I'd reported a decent share of a Nobel Peace Prize. The major heads of diagnosis are communications issues, obsessions, and meltdown. Now, the thesis they couldn't follow was comprehensible to the academic institution specialising in the subject, the Warburg Institute, which is the major part of London University's Advanced Studies School, and to the world experts in the major blocks of it, Till Holger Borchert, recently retired Head of the Bruges Museums, and a world expert on van Eyck, and Craig Wright, recently retired Professor of the History of Music at Yale and now Head of their new Genius School, who concurs I probably qualify. Of course researching something as big as the origins of the Renaissance (it exploded out of trying to understand a Senior Roman Catholic Religious Order which had collapsed around our ears in 2004, which was a straight descendant of the creation of Windsheim and the reform of semi-pagan mediaeval Christianity called the Devotio Moderna in the 15th Century) needs great attention to detail amounting to obsession, and risks meltdown from Pavlov's Transmarginal Inhibition, as well as standard PTSD IAS. So everything's explicable from another angle, which sent me looking at how they could make such a screw-up. You'll find it's the Cult of Dabrowsky, who was working in a different culture (communist Poland) and came up with "over-excitability", defined by teachers who were as thick as two bricks and needed to explain why bright kids were tying them up in knots. I certainly qualified as the latter, insofar as I was tested by The Tavistock Clinic when I was 8y6m and found to have the General Knowledge of a 14 year old. By the time I actually was 14, I was supplying Richard Attenborough with costumes for his first film, and making my first permanent mark on the world.
If bright kids are over-excitable, who defines normal excitability? Why are so many excluded from education as a result?
Why was the high-functioning group of Aspergers lumped in with the low-functioning on the basis of "nobody knows anything about them" - in fact, why didn't they set about discovering what they were talking about? Instead, DSM-5 continued the argument, Aspies are on the spectrum, so they're just ASD. Net result: I tested with a huge IQ which may have set the top bar 163 in kids (that's why the Tavistock was interested) yet am intellectually challenged? I'm Disordered, but hold about 40% of the 2012 Nobel Peace Prize? Get stuffed.
The extension to the above, which I've repeated ad nauseam, is that Dom Cummings explained to the Covid Enquiry 31.10.2023 why he went in search of weirdos and misfits, it's because nobody in the Civil Service or Parliament was up to the work. His actual call is on his blog 2.1.2020, and it says exactly what I'm asking for here: please can somebody start a study to explain what we, his weirdos and misfits, are. The shrinks don't have the faintest - official, from the Cabinet Office. They only ever worked with one individual, Temple Gradin, and for the rest of the time forced the evidence to fit their model, totally academically disreputable.

So if there's one thing I'd like, it's a complete rethink. Maybe you are Aspie/ADHD (the other Dabrowsky group), but maybe it only fits where it touches.

 

[Rahere]

A fundamental and vital part of this is post-diagnostic assessments, especially for autistic adults, especially if diagnosed later in life, especially if diagnosed online, to properly, correctly and accurately assess level and type of autism in a systematic way, then to carefully and accurately assess appropriate levels and types of support required in every area of life going forward - without this, it is virtually impossible to move forward in life, especially as more people are being diagnosed later in life, where all the focus is too much on children’s autism and where this must become a basic legal entitlement and a basic legal requirement, where all latest research must be updated and adopted on a regular basis by all providers both public and private - I would seriously question if the NHS in the U.K. in its current form should be tasked with this, it should be by a separate mental health body in the U.K. as attitudes towards mental health and disability, hidden disability, needs to fundamentally and radically change, especially among healthcare professionals and among the general public, by means of education - in the next few years, we are going to have a serious problem with an ageing autistic population who will need enhanced care and we need urgent legislation being passed by Parliament to provide for this, as well as appropriate funding - those in power need to stop with the lame excuses re funding and attitudes that are wearing thin, we have no time for thier nonsense, it needs to stop now

I'll refer you to Dom Cummings blog, which finishes

G. Super-talented weirdos

People in SW1 talk a lot about ‘diversity’ but they rarely mean ‘true cognitive diversity’. They are usually babbling about ‘gender identity diversity blah blah’. What SW1 needs is not more drivel about ‘identity’ and ‘diversity’ from Oxbridge humanities graduates but more genuine cognitive diversity.

We need some true wild cards, artists, people who never went to university and fought their way out of an appalling hell hole, weirdos from William Gibson novels like that girl hired by Bigend as a brand ‘diviner’ who feels sick at the sight of Tommy Hilfiger or that Chinese-Cuban free runner from a crime family hired by the KGB. If you want to figure out what characters around Putin might do, or how international criminal gangs might exploit holes in our border security, you don’t want more Oxbridge English graduates who chat about Lacan at dinner parties with TV producers and spread fake news about fake news.

By definition I don’t really know what I’m looking for but I want people around No10 to be on the lookout for such people.

We need to figure out how to use such people better without asking them to conform to the horrors of ‘Human Resources’ (which also obviously need a bonfire).

I'm tempted to contact him to ask who to talk to to get this off the ground, but it will require the community to lift.

 

[IrishInManchesterUK]

We need to get the legal advice centres, Solictors and barristers on this and we need to get some cases brought before the courts in legal challenges to the existing laws, meanwhile others can lobby for changes to legislation through Parliament, but we have got to get organised

 

[Rahere]

For legislation, the NAS is the starting point. To learn what the existing Law says, legislation gov uk. What it means is not yet here.
If we go this way, is NDSA incorporated as an Association? Without it, you may be exposed in your personal wealth, and there will be basic costs for bookkeeping and the rest.

 

[IrishInManchesterUK]

The only way that attitudes can change is by strong and strongly enforced legislation that is part of the criminal law, fuelled by an authoritarian mindset that can force through the changes that are much needed and long overdue, because this is an ethical and moral issue - compliance with law and the potential threat of arrest for failing to comply with the law is the only way that these changes can happen - the Act Up Campaign during the AIDS crisis was very successful

 

[Rahere]

The problem there is that there's no will in politics for that.