Capping the number of children diagnosed with autism

[roundtable]

Did I just hear that correctly on the news? The couple of sentences that they gave about it before moving on.

I'm hoping I've misunderstood but wtf?

That is not reasonable.

So once we've limited the amount of people with autism, what group of people do they move onto next?

Did I hear it correctly and are they being completely unreasonable? Without a doubt

I heard this too. I was gobsmacked.

In no other area of medicine would they consider putting a cap on how many people are diagnosed.

Cancer? Sorry, our quota is full and therefore you can't have a diagnosis or treatment.

Going blind? Sorry, our blindness quota is full. Off you go. Sorry we can't help you.

Parkinsons? Sorry, we already have a full quota of people with Parkinsons. However, we will put you on the waiting list in case someone dies.

FFS. It's absolute bollocks. You either have autism or you don't. You don't get to choose how many people have something wrong with them.

More NHS cutbacks affecting the public.

it is (sort of) happening with other conditions - DD has PoTS (an autonomic dysfunction) which in most of Scotland (and I think Wales too) simultaneously doesn't exist (despite people having seen top specialists in England privately) AND has specialists in Scotland to treat it, but sorry, you can't get a referral to these specialists because it doesn't exist, you actually have fatigue and depression and should just do some exercise. .

How does refusing to give something a name make it not exist?

This is an awful story, but it's worth pointing out this is not a nationwide or political party policy. It's one NHS group in South London.

Link: www.bbc.co.uk/news/health-40058482

Hopefully it will be rejected for the absurd proposal that it is.

How bizarre!!

Years ago, I read something by Roy Grinker, about the situation in his part of the US. He said something I found very interesting, about how the same symptoms and presentation will be diagnosed differently in the US and the UK (and in different states of the US), just because the people diagnosing know where the money is, and need to get it for their patients. So you get a spurious profusion of overlapping diagnoses as a result of economic pressures rather than scientific or medical best practice. Stupid, and awful. So I bet if you put a cap on, compassionate people who know the child needs support now will twist out another diagnosis. Which may help short term, but will add to the confusion over what autism is, long term.

Oh no!waiting for a diagnosis for ds 6! Will they diagnose for real?fucking gutted.so sure he has aspergers!don't want them to mis-diagnose him for numbers sakes!!!!

I imagine the main reason for this is because of money. As soon as someone is diagnosed with a disability, they claim DLA. The government like to cut costs in the most important places

Bloody hell, that's appalling. Our LA has already has blanket policies in place to cap the number of EHCPs issued to children with SEN. So, children who would definitely have got a Statement 10 yrs ago no longer meet the 'threshold'. They would love this.

I wonder if this is whats happened in my area. DS1 has an Autism diagnosis, before we lived in this area, DD has a social comunication difficulties/ disorder 'diagnosis'. Her consultant reffered to it as a diagnosis.

Whilst I completely agree that a cap is a total nonsence I can also see a need for some form of differentiation in support and funding level. DS1 has needed full time 1-1 since tiny. He needs to have an escourt as well as the driver on his school transport.

DD struggles with break, PE, noise, textures but copes well with simple instruction and with a bit of extra input in class leassons. Her TA has been on several specific courses and we and the school story board and timetable for her. With quite significant intervention she copes mainstream, DS1 ceased coping even with 1-1.

It is due to the numbers going through. All CAMHS are under huge pressure. This one has twice as many referrals as it has time to see.

It needs more money -but doesnt get it due to the financial limits from government ie the Conservative party. So there is a party political element . Austerity bites everywhere

i also read this,
not surprised, bloody government.
the amount of children on the spectrum is huge, the waiting lists enormous but how can you limit? how do you chose who to put on the waiting list for assessment? just how?

You can claim dla without any diagnosis

My ds got a asd diagnosis 2 years ago. Since then, nothing has happened, no support, no follow up with paediatrician so not being diagnosed would make no difference to us.

Sounds like what the DWP and local council have been doing for a while, across many conditions:
"If you were disabled we'd have a duty to fund and care for you. So we're just going to define you as not disabled."

This is resources led not needs led.

That's horrible. It took years to get a diagnosis for DS and it's already such a long and stressful process because of the lack of resources.

I'm sure this is happening in other areas too. My DM has been told she's on the 'borderline' of a thyroid disorder, but when she looked at her test numbers she would actually meet the criteria for treatment in other countries. She should be on medication but is being left to get on with it. The NHS is just so overstretched that they can only treat the most severe cases.

that's it, you take away the support, therefore no point in even seeking a diagnosis.
and that is what they are doing, whittling away.

Take my FIL as a case study

Was only diagnosed as Aspergers at the age of 58. In fact when he went for testing they said he was a very clear case and they didn't need to finish the test.

He did rubbish at school despite being quite intelligent.
Cost to government - loss in taxes for the well paid job he should have been able to get if he'd had the right support and not been labelled as naughty and cheeky

Unable to get along with bosses, lost a lot of jobs due to being 'difficult'
Cost to government - benefits when out of work, loss of tax revenue.

He got into lots of fights as a young person due to saying stuff that most of us would find rude.
Cost to government - various arrests, small stint in jail, and medical treatment

Became an alcoholic as he found social situations much easier when he was drunk, this then became all situations were easier when drunk (not say everyone with ASD will be alcoholics but just that if he had known he had ASD he would have understood himself better and not felt the need to fit in)
Cost to the government - several stints in rehab

Also because of his alcoholism he left MIL with 2 kids
Cost to the government - benefits of various amounts over the years. MIL always worked but still needed top ups as a single parent

He's also had counselling since his diagnosis to help him come to terms with it all.

Also BIL had a terrible relationship with FIL, he killed himself and I am sure part of the reason was that relationship. Unfortunately he killed himself before FIL was diagnosed and I always wonder had he known it would have helped put that into perspective and may have helped his mental health.

Now compare that to DS1 who has had a lot of help at school plus he will be going into a world which hopefully is more understanding and also protects those with additional needs. He will hopefully become a productive member of society giving back probably more than he has received.

I think it is hard. Who decides where the ends of the spectrum are. If it is ever broadening where do we stop. When is it a "condition" to be treated and when is it simply part of life to be lived?

It is taking over 10 months to get to a referral - how is that helpful to those at the top end? to those who need that help most desperately.

(From experience, it is not as if there is a shed load of help there for those nearer the NT end of the spectrum anyhow.)

Maybe they mean who can diagnose? E.g. Capping who can make the diagnosis?
Otherwise it makes no sens

This started a couple of years ago in the LEAs when they re did the SEND registers, all pupils were reassessed and many lost their support as they suddenly no longer needed it as they didn't meet the new requirements.

But because it was in schools it was seen as schools not doing enough and teachers whinging.

Somebody mentioned about asthma, I had similar with my child's epipen from one gp.
We get repeat prescription of epi pen regularly(every 1-2 years depend on expiry date.)
Once we didn't get it and questioned GP. He said something in line with it's a waste because we never seem to use it. We don't need it because we are very careful with dc's allergy , and time we need it is a life or death situation.
Of course other GP prescribed for us straight away. But some people are bonkers.

Its bloody ridiculous. I can't see it being to do with dla. Dc2 has ASD and LD but we have been refused dla for him and refused after mandtory reassesment and being told i now need to go to tribunal.
Its silly. In the end its just going to cost more when children grow up without help and ending up with other issues. Although having 2 dcs woth autism i have learnt once diagnosis is done theres not really any help out there.

Well at least this lays bear the situation which we all new existed but clinicians would never admit, which is that their approach to diagnosis is driven by budget management and not clinical factors.
I so deeply despise paediatricians because if this. It has been obvious for years that they serve the state not their patients but they do not have the honesty to admit it, probably even to themselves. These people, with a few honourable exceptions, disgust me.

No decision has been made yet, it's just under consideration. With limited funds, priorities have to change regularly.

They are in a tough place with some awful decisions to be made and I don't envy them.

We only have the facts in the article which is brief. Who knows how many cases they had where parents pushed for a diagnosis when there was nothing medically wrong with the child etc.