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

  • • Transforming the attitudes to autism in society, autism acceptance

    Votes: 10 25.6%
  • • Helping to manage transitions

    Votes: 1 2.6%
  • • Employment

    Votes: 5 12.8%
  • • Relationships

    Votes: 5 12.8%
  • • Mental health and wellbeing

    Votes: 11 28.2%
  • Physical health comorbid conditions

    Votes: 7 17.9%

  • Total voters
    39

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

What is the biggest gap for the much needed services
 
Hi MandyH,
its Interesting as I’m under the community learning disability team which deals with mental health difficulties differently.
i have been to see the CLDT psychologist several times, he tried to use exposure therapy on me several times for my severe sensory issues which cause a lot of behaviors in busy supermarkets as he believed I was doing the behaviors on purpose to get taken out of the supermarket quickly in order to escape panic and anxiety,in fact he diagnosed panic disorder,he only gave me three things every time that needed working on,they were always manipulated to be around panic and what I had asked for every time I was referred back to him was counselling,which I had never had In my life at any point because of my lack of speech and interaction,it was modified CBT,which has never worked for me. I can’t just go to a standard MH counsellor because of my complex autism,Speech/communication difficulties and LD,they always forward me back to him.

in a different area and different CLDT,I had known the consultant psychologist from 18 to 30,and he had always known how to work and communicate with me,I would recommend him to any Autist if only he freelanced outside of his boroughs social Care-I’ve checked as I wanted to book him privately.
because I had known him for so long,on our last ever visit together he revealed he was Autistic himself,I knew there was a reason I felt able to connect to him.

when I was 28 I had my severe depression,severe paranoid pyschosis and extreme anxiety labelled as challenging behavior by a learning disability hospital,they had no understanding of LD with mental illness,as we are supposed to not have the capacity to think and process what’s in our heads.😞😒
mine was caused by several years worth of being severely bullied online.

I think what we need is staff who have worked in multiple areas, like for example, pyschologists to be trained and experienced in both ASD with dual mental health difficulties, Instead of each area not understanding Or accepting the other side.

there is a service in Manchester called Counselling for all, It’s for adults with LD and/or ASD just in case any of you live here,you can get it free if you can prove you have tried and failed with other therapists (I think that’s the criteria) ,you have to wait the usual length of time I think,I was told even if I pay privately I don’t get a quicker waiting time.i think it’s around £900 For a block of sessions,privately.
Expressive Arts Therapy and Art Therapy can be 100 per cent non verbal, working from sensory responses and activating playfulness with the aim of exploring emotions in a safe place with an empathising, non-judgemental professional. Was this ever an option for you?
 
Picked health/comorbid however probably mental health also ..

Intensity re: difference in relation to sensory processing appears misunderstood I think,
-facial expressions/body language are poor indicator [pain level] for instance in regard to an Autist IMO.

Mental health / wellbeing support tailored to autitic-adult individuals appears ''postcode" lottery", also

- understanding the [chronically ill] Autist probably experiences distress bcos physical problems/feedback/ and misunderstandings,
-not so much poor mental health IMO,

- in that to say Autist 'aware NHS: probably requires bolstering numbers of medical professionals w/ *in-depth* autism awareness training IMO.
 
I agree that mental health is insufficiently addressed while so many autistic people suffer from anxiety, depression and other conditions. My understanding is that Psychotherapy doesn't work properly on autistic people. New types of intervention are needed.
I would say everyone is different and psychotherapy is not for everyone, but where it does provide a person with a rebalanced outlook their resilience can be that much more robust, as it goes deep.
 
What is the biggest gap for the much needed services
i voted mental health. As a newly self identified with autism, i have presented to GPs and mental health services most of my adult life, for minor issues with mood, anxiety, stress, and occasionally depression. I am a woman. i feel that my autism has been completely missed by professionals and myself for years. Althought it has been hiding in plain sight. Better awareness of how to see autism, and the impact it has on MH would be very helpful.
 
Mental Health in general is poorly understood and still carries a stigma with it. Even less understood is how it effects NDs and how it is inflated in people who are NDs.

As for other under supported elements, there seem like no one is standing up for us, especially adults, and there is little threat for any companies who don't do anything above the bare minimum.
 
Employment. Statistics now show that only 22% of autistic adults are in any kind of paid employment. Most employers seem to want experience before you can even get an interview for entry level work but without experience you can’t get a job that will give you experience. Add long term unemployment into the mix and you either jump into another vicious circle whereby because of long term unemployment employers won’t look at you so you stay unemployed longer or create an even larger vicious circle whereby long term unemployment = no skills/experience = no job = longer unemployment = no employers looking at you = longer unemployment = no skills/experience = no job = longer unemployment ad infinitum.

Plenty of help seems to be given to 16-24/25 year olds so maybe autism must just magically disappear on our 26th birthdays?
 
Interesting. Do you have any more information than that? Links, perhaps?
Being born with autistic traits (nature) comes before the early family and social impacts that are the subject of psychotherapy (nurture). I have discovered that my autistic nature has made it difficult to untangle nature from nurture. I have found that early years violences in my family had become confused with the 'social communication' issues that autistic people find. I was looking at life through a window - all the time.I wanted thr truth.

Once I understood this I saw the reason why it was so difficult to just let go of my family issues. Autism for me is now my truth. It was a huge releife when I was diagnosed as being part of the autistic constellation.
 
Very difficult to know where to start and what to prioritise as adult services and support for autism and ADHD are pretty much non existent and not at all seen as a priority in my experience. Diagnosis of females is still hugely neglected. I recently discovered that girls and women weren’t included in any autistic specific medical studies until the 1990’s!
 
Mental Health in general is poorly understood and still carries a stigma with it. Even less understood is how it effects NDs and how it is inflated in people who are NDs.

As for other under supported elements, there seem like no one is standing up for us, especially adults, and there is little threat for any companies who don't do anything above the bare minimum.
This can be expanded into a basic understanding of high-functioning NDs. Low-functionality's had a hundred years work done on it, but high-functionality, next to nothing, probably on the basis we're close enough to neurotypical normality we can look after ourselves. The problem here is where we aren't. We may be far beyond that - this is often summarised in the thought we're everything Norman Normal is and so much more.
Nobody's asking us what we think, for starters, but are telling us things which are seriously unreliable to the point of being nonsense. As adults, we're a problem because we can answer back: that's why support goes elsewhere, and why this forum is focused on self-advocacy. We're big enough and ugly enough to speak for ourselves, given the leadership.
Given such ignorance, how can education be provided for us? Not as syllabus-support, but as syllabus-acceleration. I'm thinking of the very few who make it to uni pre-adolescence: this then expands into socialisation. We're all too hurt to want to socialise, even online, among ourselves!
 
This can be expanded into a basic understanding of high-functioning NDs. Low-functionality's had a hundred years work done on it, but high-functionality, next to nothing, probably on the basis we're close enough to neurotypical normality we can look after ourselves. The problem here is where we aren't. We may be far beyond that - this is often summarised in the thought we're everything Norman Normal is and so much more.
Nobody's asking us what we think, for starters, but are telling us things which are seriously unreliable to the point of being nonsense. As adults, we're a problem because we can answer back: that's why support goes elsewhere, and why this forum is focused on self-advocacy. We're big enough and ugly enough to speak for ourselves, given the leadership.
Given such ignorance, how can education be provided for us? Not as syllabus-support, but as syllabus-acceleration. I'm thinking of the very few who make it to uni pre-adolescence: this then expands into socialisation. We're all too hurt to want to socialise, even online, among ourselves!
“We're all too hurt to want to socialise, even online, among ourselves!”

I think that there may be a lot of truth in this - I find this incredibly sad 😔

Thank you for your input, Rahere. I enjoy reading it 🙂
 
As another of my posts shows, I found my consolation elsewhere. It isn't as if I never knew love, I have a daughter, but cancer took my wife early. Even in that there was divine grace, in that her path, although too late for her, cut the development time for the Cisplatin family of drugs: we were in on that from the start, although it did come as a surprise to find I'd signed off on the breakthrough test myself. The thinking supports a research project, translating Heisenberg's thinking into neurophysics.
 
As another of my posts shows, I found my consolation elsewhere. It isn't as if I never knew love, I have a daughter, but cancer took my wife early. Even in that there was divine grace, in that her path, although too late for her, cut the development time for the Cisplatin family of drugs: we were in on that from the start, although it did come as a surprise to find I'd signed off on the breakthrough test myself. The thinking supports a research project, translating Heisenberg's thinking into neurophysics.
I’m so sorry to hear that you lost your wife, Rahere. I’m glad that you have your daughter 🙏
 
We were quite a pair, even made the ITV 6 o'clock news the day the GLC closed, taking the evening classes with it. Frank Bough doing cupid's darts as a screen overlay.
 
What is the biggest gap for the much needed services
For me it’s definitely mental health & wellbeing, specialist accessible crisis support and care but also support with physical health and co-occurring conditions. There’s a huge lack of services adapted to be accessible for neurodivergent & autistic individuals - most services are not equipped, with staff not appropriately trained on Autism, learning disabilities, hidden disabilities, neurodivergence etc. many people falling through the cracks and reaching crisis point because they cannot access appropriate mental health support & support to cope with everyday life.
 
For me it’s definitely mental health & wellbeing, specialist accessible crisis support and care but also support with physical health and co-occurring conditions. There’s a huge lack of services adapted to be accessible for neurodivergent & autistic individuals - most services are not equipped, with staff not appropriately trained on Autism, learning disabilities, hidden disabilities, neurodivergence etc. many people falling through the cracks and reaching crisis point because they cannot access appropriate mental health support & support to cope with everyday life.
One thing that I did discover is how far behind the US the UK is, educationally. Dominic Cummings' 2020 "weirdos and misfits" blog call is explicit: they need us, but don't know how to build us. That isn't entirely true, in fact, because now know my own truth, certain things needed reinterpretation which say something.

What I need from this community is for more Gifted-Genius to come forwards with their own stories on how they were raised. I now know that certain inputs developed my perception, that a metamorphic experience added a relationship sought by the numinous to it, and that that developed by small steps of faith to become world-changing. The Security Services recognised it in me, and although I walked away from them for good reasons, I could not avoid that Intent, to the point where I was pre-positioned, somewhat against my freedom of choice, to achieve what was Intended. When I talk about the numinous, it's with the deliberate intent of breaking you away from Organised Religion and stereotypical ideas of Divinity, because my experience of it is amorphous, omniscient, ultimately powerful and undeniable. The key reference to our Western Judeo-Christian culture is the 6th Chapter of the Gospel of Matthew, which makes it very clear that Sunday Best Church Services are just plain wrong. This is very personal and private. There's a universe of knowledge out there, and we need help homing in on the necessary subjects to deliver on. When I did exactly that, in full view of half the Cabinet in 2015, what they saw was a question asked by a foreign potentate at 0200, which I answered at 0830, landing the deal and putting it firmly in their hands within a week, by signing up an old schoolfriend who'd become the country's lead technologist in the subject. It was so strategic he came with MI5 minders, who did their usual bit telling me to back off, only to be introduced to our own Security, the Head of the London team of the US Secret Service, much to the amusement of my interlocutor, who came with his own versions. That means I can't go further into it other than to say that this probably inspired that Cummings search for mages.

What gives is that what Mary-Elaine Jacobsen's thinking on everyday genius (Gifted Adult : A Revolutionary Guide for Liberating Everyday Genius) can be interpreted as another class of NeuroDiversity. For starters, what is Genius? It is NOT MENSA-140. I was serendipitously aware (and that's an indicator) of Professor Craig Wright's existence nearly twenty years ago: that he then shifted to head Yale's new Genius School a couple of years back made my claim on Genius a doddle, as I used one of his own theses as a baseplate to build on with a far larger vision than his. That work's been checked by some serious academics, so I was secure in my claim: his reply was to refer to his own thinking, published in The Hidden Habits of Genius, which I think considers the question adequately. Genius is the ability to view a subject more widely to discover fresh angles, often completely new datums, and deliver on it first. This is repeated in the criteria for Nobel Prizes. That in turn requires prodigious memory, and the ability to extract the needle of information from a sea of data, by searching out pattern in chaos.
 
I picked mental health from the poll, but I would actually say comorbid chronic health issues. I've been lucky to get good individualised support, but from my reading I don't think that's the norm, and there are a lot of barriers to accessing medical care or getting the most out of it.
I picked mental health also. I am neurodivergent with 3 grown neurodivergent grown kids and I started a free online support service to anyone that has internet and can speak english good enough for us to understand each other. And the cormid conditions we have are difficult to deal with but we have it better than most. I go to groups all over to try to bring back a better perspective on what is happening worldwide. I visit here when I have time between appointments. If I may say if you are getting good individualized care for medical be thankful! Because that is a rarity from what I have seen in 30+ years of raising the next generation.
 
I agree that mental health is insufficiently addressed while so many autistic people suffer from anxiety, depression and other conditions. My understanding is that Psychotherapy doesn't work properly on autistic people. New types of intervention are needed.
Yes they slap on autism as the complete word that describes our conditions. And unless you have raised one and homeschooled them and/or are diagnosed yourself, they just cannot understand firsthand what we go through daily in our normal day.That is why I talk to my peers and it helps them and I get the bonus of learning from my peers also. I have had good and bad care but I do not think they get me and it just leaves me angry and out of balance.