Wes Streeting's move against autism - NAS - time to step up

Mr T said:

surely the diagnostic criteria are based on the DSM international standards.

Yes, and they have changed a lot over the decades and I was referring to the most recent updates.

There is a good article here for anyone interested:

https://www.thetransmitter.org/spectrum/evolution-autism-diagnosis-explained/

surely the diagnostic criteria are based on the DSM international standards.

We can just say that more people are being diagnosed due to increasing awareness. There are more and more females being diagnosed who would probably be missed due to the higher propensity to effectively mask.

I have fears over the direction of travel for this review and what the ultimate aims are.

Thanks for the link ArchaeC 

Here is a copy of the purpose of the review:

"Purpose  

The purpose of the review is to provide advice and recommendations to the government on:  

• evidence on trends in mental health conditions, ADHD and autism in the population over the last decade, including:
  • factors that have contributed to drivers in prevalence for children, young people and adults
  • how these changes have affected demand for NHS mental health, ADHD and autism services (including assessment)
• evidence on inequalities in accessing support for children, young people and adults across the spectrum of need
• evidence on the role of diagnosis for children, young people and adults, including:
  • changes in diagnostic pathways, criteria and process over the past 10 years
  • the value of diagnosis to individuals
  • barriers to receiving a diagnosis and its impact on receiving support
  • the role of the independent sector in diagnosing individuals with mental health conditions, ADHD and autism
• evidence on the role of medicalisation in mental health conditions, ADHD and autism, including the appropriateness, potential harms and the difference between non-clinical need and disorder
• evidence on the role of medication in treating mental health conditions and ADHD, including the long-term outcomes of pharmacological treatment for young people and adults
• the role of preventative care and early intervention across the life course, including support for those waiting for services and ways to reduce demand and waiting times, working with relevant government departments to explore cross-sector opportunities to support this approach and create the conditions for good mental wellbeing

This work will include international comparisons covering prevalence, diagnostic systems and cultural factors influencing diagnosis."

There is a lot to unpack in the above and the mixing together of conditions doesn't help.

My feeling is that a review could be a good thing, but of course it depends on the outcome, + action taken upon conclusions reached, which might be beneficial in some areas, but detrimental in others.

Something has clearly gone very wrong since the criteria for an ASD assessment were changed and my personal fear is that diagnosis will be made more stringent again, which could mean that myself and others like me would once again be working in darkness where a diagnosis gave light. (see below)

evidence on the role of diagnosis for children, young people and adults, including:

• changes in diagnostic pathways, criteria and process over the past 10 years

Mr T said:

could this be an ADHD assessment?

True.  I was thinking ASD but Stuart333 could be referring to ADHD.

could this be an ADHD assessment?

Thank you for this thread Mrs S.

Having just spent several hours (including 3 hours on the road) at a hospital, I'm a bit weary.

I can see it's become quite fractured already, as these things will do, and I don't have the spoons to read it all.

Stuart333 said:

I do not believe, neither did my consultant, that some of the online diagnosis places that charge little and do it in one phone call can be doing a thorough or reliable job. You would have to be naive to think no-one is gaming the system. This helps nobody. I have sone other suspicions, but I can't substantiate them so will not say anything.

I'm not arguing with this but a bit taken aback at the 'one phone call' thing.

I had an online (ASD) assessment with a private company via the NHS.

For starters I had a lot of forms to fill in in advance which formed a part of the assessment, so it's not just (or even) a phone call.

In particular though, I was told that the assessment had to be in 2 parts so I had 2 Zoom calls, not 1.

So, it wasn't just a phone call.

This begs 2 questions for me.

Is it correct when you say that a phone call can be all there is?

Also, do you mean Zoom call which isn't a phone call as you see one another, and they were around an hour each.

I am aware though, that from what I've read of the (ASD) assessments of others, that they can be more thorough than mine, especially when in person.

I believe the application form format and criteria are flawed, and the assessment process is flawed, so some in genuine need miss out. 

Robert124 said:

And the number of homeless people begging on my city streets is shocking.  If they were getting full benefits they would be housed.  Instead I see people with missing limbs and wheelchairs sleeping rough in shop doorways.

I can’t speak for the homeless people you see, but I know that in my area there aren’t enough affordable homes for everyone. Many people have mental health conditions and some have escaped complicated domestic situations and can’t return home. Others have addictions and many just need a helping hand to get them into suitable accommodation. Quite a few have been in in the care of social services since early childhood and their support ended in early adulthood, leaving them vulnerable to abuse and ill equipped to navigate complicated social support systems.

It was recognised more than 7-10 years ago as needing reform.

The Tories said they would do something, increased NI to provide more money then the NHS grabbed it all. So it never went to social care. Then the cut NI before the election.

The cab just gets kicked down the road so people bed block because there is nowhere to put them.

In 1970 there were 423,000 beds. By 1980 356,000, by 1990 270,000, by 2000 240,000, by 2010 144,000, by 2025 147,000 following a blip in COVID times.

So 1/3 the beds and the population has grown 27% on that time. 

According to a hospital manager on ITV News at Ten last night, lack of appropriate social care is causing the most problems for hospitals. Patients waiting on trolleys in EDs, lack of bed availability on wards, theatres not operating on full capacity etc.  

Why is social care not adequate? Lack of money?

I don't know where it goes .

This year the disability benefits bill is £75.3bn which includes PIP, out of total welfare budget of 316bn (forecast to go over 400bn in 4 years).

Pip is probably about 23bn of the 75bn, but no separate number is available. Up from 15bn in 2020.

Thank you

As you have said it is cherry picked. The inclusion of non-means tested PIP is a significant leap in the dark. Working people claim PIP as well.

It is not a lifestyle benefit but is there to enable disabled people to live and afford the higher costs of being disabled.

I agree about the motability scheme being used as a cash cow for the providers and needs reform. For many it is a lifeline.

Thanks Katrina.

Iain said:

Sounds like they are laying the groundwork to find ways to stop us using neurodiversity as a way to justify claiming benefits.

From what I’ve seen, a big reason benefits are refused is because people are unable to provide evidence of how their condition/illness/disability affects them, e.g., anxiety, overwhelm, exhaustion.  Maybe it won’t make any difference because people will still be affected by these things, even if they don’t mention ASD.

Iain said:

If they strip the ability to use neurodiversity as a disability then they can save loads in benefits and probably reduce the waiting lists too. What they save in benefits will be worth far more than the small number of voters who will feel disenfranchised by it.

Under the current system of claiming benefits, it mightn’t  make any difference. If people are unable to work because they are anxious, depressed, overwhelmed etc., they can claim. It might put some people off claiming as the government have made their benefits system so difficult that many people are refused when they first claim.

Good info.

I checked all the other figures but assumed the claim for the largest single cause was correct. 

However, I misread what the article said:

"The health secretary is concerned about the sharp rise in diagnoses of mental illness, autism and attention deficit disorder (ADHD) which have become the most common cause for a sickness benefit claim."

Hi everyone, 

We just wanted to share the National Autistic Society's response to the Health Secretary's announcement. 

https://www.autism.org.uk/what-we-do/news/independent-review-into-services

Kind regards, 

Katrina Mod 

Sounds like they are laying the groundwork to find ways to stop us using neurodiversity as a way to justify claiming benefits.

We are a rapidly growing group with huge waiting lists for diagnoses and an issue with the hidden diasbility looking too "convenient" in the eyes of many in power.

If they strip the ability to use neurodiversity as a disability then they can save loads in benefits and probably reduce the waiting lists too. What they save in benefits will be worth far more than the small number of voters who will feel disenfranchised by it.

I doubt we will see large groups of protesters outside parliment as the people affected often don't do groups, don't communicate well and don't like loud environments or confrontations.  From that point of view we will be a pushover.

This sounds like another step on the ladder to us being cancelled:

 RE: could our "protected characteristic" of autism be cancelled? 

Yes, that’s my impression too. 

The papers have manipulated facts to make up a story.

Having said that, I am concerned that people who are unable to work or who need extra support will lose out. Perhaps now is a good time for people to make their voices heard loud and clear? 

My first impression of the remit for the independent review is that it does not sound like the money saving exercise that the newspapers have suggested. It reads to me more like precisely the kind of review that is urgently needed. Apparently they want input from concerned charities, so presumably that will include the NAS.

Here is a link to the government’s paper and a screenshot of the NAS’s response from this website. 

www.gov.uk/.../independent-review-into-mental-health-conditions-adhd-and-autism-terms-of-reference