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

[CuriousFrog]

For me it's relationships. I never came accross anything in real life. I would be curious to learn what is available.

 

[Rosapurple]

That's true. I never came across anything helping autistic people and their families with relationships.

 

[catwrangler]

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.

 

[Margot]

@catwrangler Thank you very much for your point about co-morbid health conditions. I added it to the poll.

Could you please expand. What are the barriers for accessing medical care?

 

[CuriousFrog]

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.

 

[Pattern-chaser]

My understanding is that Psychotherapy doesn't work properly on autistic people.

Interesting. Do you have any more information than that? Links, perhaps?

 

[CuriousFrog]

I was told that by my MH team everytime I asked for therapy. But in terms of links, there was this thread of a scientific review which concluded that CBT is ineffective.
Twitter.com/Sophie88403973/status/1225903413717655552

 

[Pattern-chaser]

Thanks. That article is hidden behind a paywall, but thanks anyway, I get the point.

 

[Margot]

looked at the article on the link from CuriousFrog. It is not open to the public in full, just the abstract. The person who made the Twitter thread has read it.The abstract says
"Psychosocial interventions in children can improve specific behaviours, such as joint attention, language and social engagement, that may affect further development and could reduce symptom severity. However, further research is necessary to identify the long-term needs of people with autism, and treatments and the mechanisms behind them that could result in improved independence and quality of life over time. "

So i works for children but for adults requires further research.

 

[Margot]

By the way could people please vote on the poll?

 

[Rosapurple]

I answered 'Attitudes to autism'. If the discourse could move from the deficit model to neurodiversity perspective, Employment could be helped. Generally I think there should be more investment in the research and interventions that help the needs of autistic people, like transitions, mental health interventions, relationships. It needs more money.

 

[Desertphile]

What is the biggest gap for the much needed services

Where I live (USA) and specifically the region (North New Mexico), the greatest barrier autistic people face is the lack of *ANY* medical care, let alone the care that autistic people need. There are not enough physicians, let alone ones that are experienced with autism patients. If there were enough doctors, we still could not afford their services--- tens of thousands of us die every year because we cannot afford health care, and millions of us skip necessary medical care because it is a major expense.

 

[Thunderchild]

Well we are UK based but yes I gather the USA has a bit of a problem. Only this morning i heard an american official interviewed saying that Covid-19 tests could be offered free but people would still have to pay "other" costs.

The is a lack of support in all areas I think. Attitudes need to change and then the other things will start to follow.

 

[Rhiarti]

I really couldn't pick one from that list. Joint first for me would be: employment, mental health, physical health, with relationships weaving quite some influence through all three.

 

[Sata1991]

For me it's difficult. I haven't really struggled to make friends or keep friends but I have a lot of trouble forming romantic relationships in the past.

I'd say a mixture of mental health issues, finding work and people's attitudes towards autistic people. Rejection sensitive dysphoria really isn't spoken about by anyone around here, but it can be very disruptive to a lot of different social things.

 

[EdgySpirit]

I'm getting on a bit. I suspect nothing is being done about ageing. Adult services and provision are pretty bad, but one you get to retirement*?????

* If you can hope to retire because with no job or a patchwork work history you probably won't be able to.

 

[MandyH]

I chose mental health. If I had fifty quid for each time I've heard mental health services have turned autistic people away saying that their anxiety is because of their autism and cannot be helped, I could retire quite comfortably.

There simply aren't sufficient resources to personalise support whether it's with relationships or with mental health or anything else for that matter - I've done my best as a trainer to offer practitioners training on how best to support autistic people over the years. Mental health and relationships are both very complex fields and support has to be individualised - otherwise it simply won't be appropriate or effective. Of course there are some things that can be useful to many, but when I hear that CBT can only be offered over the phone or in group therapy I do feel as though I'm banging my head on a brick wall at times.

 

[Fluffymainecoons]

I chose mental health. If I had fifty quid for each time I've heard mental health services have turned autistic people away saying that their anxiety is because of their autism and cannot be helped, I could retire quite comfortably.

There simply aren't sufficient resources to personalise support whether it's with relationships or with mental health or anything else for that matter - I've done my best as a trainer to offer practitioners training on how best to support autistic people over the years. Mental health and relationships are both very complex fields and support has to be individualised - otherwise it simply won't be appropriate or effective. Of course there are some things that can be useful to many, but when I hear that CBT can only be offered over the phone or in group therapy I do feel as though I'm banging my head on a brick wall at times.

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.

 

[Wendy Butler]

For me it's relationships. I never came accross anything in real life. I would be curious to learn what is available.

I have started by thinking it is relationships - without support in this dimension people can become isolated and so depressed, harbouring suicidal thoughts, at risk of becoming a missing person. I have experienced this happening in my own family.