Treatment of autistics in the UK vs. the US.

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Hi everyone,

I've been wondering how you guys on the spectrum, located in the UK get treated, compared with us in the USA. Although, I could imagine that it would depend on the country and city in the United Kingdom, what made me wonder was studies done on autism and relationship satisfaction in the US and the UK. I forgot where in the UK the study was done, but the results showed much greater functioning in relationships compared with the US. A while ago, I thought I read a comment that someone said about there not being as much stigma to being on the spectrum in the UK. Is that true? If so, could confidence levels, be the major factor in relationship satisfaction?

Is ABA (Applied Behavior Analysis) also done in the UK, where there is pressure to blend in with the crowd? Does Autism Speaks rally in the UK, requesting a cure? I'm also wondering what kind of services are out there for help and support for employment and social functioning for the autism spectrum in countries outside of the US. I've read an article, that in the US, only around 20-30% of adults on the spectrum are employed full time.

ABA is not a mainstream practice in the UK (in fact the only countries where it is are the US and Canada). There are some schools popping up now that use it extensively but it's not a system that many adults will have been through.

Autism Speaks does not exist here. There are some similar charities but again they are fringe. The largest autism charity in the UK is the National Autistic Society. This used to be ran by Lorna Wing, who invented the term "autism spectrum" and did a lot of work in establishing the Aspergers diagnosis. We've been separated from the Kanner/Bettelheim/Lovaas way of thinking about autism by a giant ocean. Asperger has been much more influential here, along with people like Wing, Uta Frith, and Simon Baron-Cohen (a controversial fellow but absolute leagues above Bettelheim or Lovaas).

The full-time employment rate for autistic adults in the UK is terrible, much worse than 20-30% even amongst graduates. I thought it was around 9% but looking it up, seems like it's more like 16%.

There is very little support for autistic people in or out of work. I know many American autistics who are receiving welfare payments that are almost impossible to get in the UK if autism is your only disability. I guess one difference might be access to mental health care but even that can be very patchy here.

Only the UK has produced some studies of AS people in the senior age group (middle age and beyond) and seems to be the only country that has researchers who are interested in that group, AFAIK.

There are also some very interesting academic activists in England using their skills to raise consciousness of issues, like Damien Milton.

The AS "climates" in the UK and USA seem very very different to me as an onlooker of both.

They language used in the UK is generally less hostile is but there have been some disturbing developments in the last few years due to austerity. Some of them are exclusion from schools, triaging diagnosis, massively lengthy waits for assessment.

Besides ABA a big problem in the US is because of fear of lawsuits schools have turned over handling of meltdowns over to law enforcement. Scenes of pre pubescent kids being perp walked are not as rare as it should be.

Besides employment bullying and abuse at home, at schools, and in institutions are problems in both countries.

"Normalisation" is a major theme in the USA, coupled with the mistaken idea that ABA is the coercive tool of choice to force AS people to become pretend NTs.

That doesn't seem to be a mainstream mindset at all in the UK.

"Curing" AS doesn't seem to be a mainstream mindset in the UK as it is in the USA.

Part of the reason for the above is the way that Autism Speaks has used their megamillions to push both agendas at a government and public level. The UK has no equivalent organisation and thank goodness for that.

The UK though in the past decade has covertly tried to push AS people in CBT and I don't think the motives for this have all the much to do with the wellbeing of AS people. AS is not a cognitive condition, but a neurological one; CBT is not the magic cure for AS depression and so on, because the causes of AS depression partly stem from the way that AS people are marginalised and discriminated against. Changing the way AS people think about their marginalisation doesn't change the social and cultural fact of their marginalisation and discrimination by the dominant population.

Neither approach has gained much traction in New Zealand, though there are groups trying to push ABA as a distinct profession. They don't seem to have much take up, because no organisation is financing their PR with megamillions of donations.

Autism NZ seems to me very middle of the road, offering support and information to parents (mainly) but has no particular ideology. I would like to know exactly how they apportion their budget of government funding though, which would enlighten me more about their actual priorities in practice.

Bullying of AS people is unfortunately common to all Western countries, as far as I can see. No AS person anywhere is immune from the danger of it.

I am in the UK I first saw a pdoc for mental health problems in autumn 1973 . The Asperger's dx came over 45 years later in May 2019 . I was with an older woman for 22 years. Married for 18 years . We had little interaction with other people , beyond our respective families . My wife died from physical problems in 2005, but from 2003 had been dxed with vascular dementia .

Post diagnostic help consisted of an appointment where there was a discussion , and I was given an information pack. I was also able to get 2 cards. Those being an ICE card(In case of emergency) , and a card for emergency services and the police stating I have an autism spectrum condition .

There are groups in a couple of nearby towns but they're hard to get to on my own , due to my poor navigational skill .

Im from the UK and ABA does not exist here, outside the odd few private practices of which theres not many.

In fact a simple way to measure autism outcomes after ABA would be to maybe to compare UK and US kids?

We have a national health service which is free which is great and i wouldnt change that, unlike the US.

The main downside of a national health serice however is there's no money for "exotic" or groundbreaking new treatments that US have.

Theres been cases of child cancer patents left to die because the nhs ran out of options, the parents try to raise money to send to the US as there is always some doctor ready to try some new life saving treatment for an big cost of course.

Theres not much for mental health many autistic people who cannot work are dumped and forgotten about after full time education.

Many such autistic people committ suicide or end up homeless living on the streets when they are assessed as "fit for work" at a stroke of a pen and have their benefits stopped.

This is part of the reason im against the ND movement, im suspicious of those that try to whitewash autism or pretend its not a disability. It plays into the hands of governments who want to worm out of their social financial obligations.

This can mean the difference of life and death for some.

I don't have experience of the UK system, but here is an overview from POST - Parliamentary Office of Science and Technology. A link to the full report published last month is on the page
Research briefings parliament

Unfortunately in the UK ability to describe need , either by yourself or via someone else , often trumps degree of need when it comes to claiming disability benefits .

That means a person with mild physical problems who has the ability to plan his/her claim like a military campaign will often do better out of the system than a person with sz who has cognitive issues, and can't get someone to fill the form in for him or her .

There must be times when a trained "navigator" through certain systems and processes as a support person would be of enormous help for people there FM. Does the National Org. for Autism there offer any service like that?

In UK we just call it 'eccentric'

I also think because we are more introverted, its easier to blend in. I would also say our NT's social skills are less good than US, Canada or Australia so maybe that makes us UK aspies stick out less (obviously massive generalisation)

Ive drank in many pubs that have had severely autistic regulars and have been largely tolerated. Usually someone will look out for them.