Active discussions

Meet the Other Phone. Protection built in.

Meet the Other Phone.
Protection built in.

Buy now

Please or to access all these features

Talk
AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

War on the disabled ramped up again.

54 replies

Shamefuldodger · 27/05/2017 07:45

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

What the fucking fuck is this?!

Yeah, I know, you all know someone's aunts brothers nephew who just popped to the gp and got their child diagnosed (like fuck they did)

But how can this even be a consideration?

That'll work.

I have high functioning autism as does my daughter.

Am I not autistic enough to count now?

OP posts:
user1491401693 · 27/05/2017 07:46

This reply has been deleted

Message deleted by MNHQ. Here's a link to our Talk Guidelines.

Original poster
Shamefuldodger · 27/05/2017 07:51

Not directly.

Forgetting to eat, turn the gas off, injuring yourself, forgetting to look when crossing roads, taking the wrong amount of medicine, not seeking the doctor if ill and having a ridiculously high pain threshold can though.

OP posts:
Original poster
Shamefuldodger · 27/05/2017 07:52

Do you think higher functioning autistic people should just be left undiagnosed to meet targets?

When they can have difficulties functioning in society without support?

OP posts:
SmilingButClueless · 27/05/2017 07:53

Not keen on the comparison with cancer, but I agree with the overall point.

If it's a matter of prioritising so children with other conditions as well as autism (e.g. depression - and user that combination can and does kill) get seen first, that's a different matter.

Firef1y72 · 27/05/2017 07:58

Ffs it's hard enough now to get a dx, and the assessment itself is gruelling. I had my assessment a couple of weeks back at the age of 45 and it was horrible. I may have survived the last 45 years without my aspergers being diagnosed but I want my son (who's also being assessed) to thrive rather than just survive.

Original poster
Shamefuldodger · 27/05/2017 08:01

SmilingButClueless point taken. I was just so furious I didn't really think that comparison through. I apologise.

It's not like they hand diagnosis out like candy.

Yes the numbers have gone up. Probably to do with:

A) They didn't diagnose girls with it until recently.

B) No one really used to look for signs of it. You were just callled 'weird' or 'stupid' (like I was in school - by the teachers)

OP posts:
TigerBreadAddict · 27/05/2017 08:02

I am outraged. Undiagnosed and unsupported autism will mean poorer mental health, poorer educational outcomes, greater strain on families. These things all cost the state! Short sighted and appallingly cruel 😡

UserThenLotsOfNumbers · 27/05/2017 08:06

Less diagnoses = less support (and possibly benefits) the government has to provide. Cynical AF.

hazeyjane · 27/05/2017 08:07

A clicky link www.bbc.co.uk/news/health-40058482

Ignoring User...693.

I think this is unfortunately the way things seem to be going in many areas - SALT referrals reduced, children with a 'lower level of need' being discharged, a change in the criteria for assessing in lots of areas (community paediatrics, physio, OT, SALT etc)......in our area I believe these things have happened with a change over to Virgincare (who now run 400 NHS services nationally) but from this article it seems as though this sort of thing may start happening in other areas too.

It is dangerous because there will be knock on effects in education (where children will struggle to access support without a diagnosis or an assessment of their needs, and their needs will be deemed to low for help from outside professionals), mental health (as needs are not met) and long term outcomes for these children who will be left to flounder. There is also a risk associated with the fact that many people with autism have a higher risk of seizures and other health complications.

Sirzy · 27/05/2017 08:10

It's very worrying.

In many cases now it will be they only get the diagnosis when it reaches crisis point - therefore hardly an "economical" argument anyway.

Early diagnosis and suitable support and intervention can make a massive difference long term.

user1491401693 · 27/05/2017 08:11

Excuse me but I too was objecting to the comparison with cancer. Give me autism anyday over cancer.

hazeyjane · 27/05/2017 08:21

OK, sorry for ignoring it. The comparison with cancer is a clumsy one, and it is a shame that the op used it, because now the thread will focus on that rather than the shameful chipping away of services to disabled children that is happening in the NHS. It is happening now, and it is flying under the radar. Cuts to services are happening now, people are being affected by this now.

StressExpress · 27/05/2017 08:22

Give me autism anyday over cancer - I'd rather get run over than have some types of cancer but if I did get run over I wouldn't appreciate going without care/response/benefits just because cancer is worse. The OP is pointing out how they're making conditions into Top Trumps, if you have cancer you're allowed to be diagnosed with it regardless, if you have autism then possibly not! Which is awful, regardless of how bad cancer is!

hazeyjane · 27/05/2017 08:24

But maybe we could just step away from the clumsy comparison and focus on this heinous thing that is happening under our fucking noses!

Sirzy · 27/05/2017 08:26

Exactly Hazey. Perhaps HQ could edit the post to remove that bit?

Original poster
Shamefuldodger · 27/05/2017 08:27

I do apologise about the comparison to cancer.

In my anger I just plucked a disease out that it would also be disastrous to ignore. It was not well thought out.

I just feel angry and very scared.

It's almost like they are affirming the stereotype of 'oh you didn't need that diagnosis anyway'.

That diagnosis changed my life, improved my mental and physical health and meant I finally understood why I couldn't do the things I was 'supposed' to be able to.

My daughter is only four. She was diagnosed at three but it all started when she was nearly two.

I've seen the massive difference that the home visits, speech and language and extra support in nursery have made. It made me so happy that she wouldn't have to struggle along on her own.

The thought of any children who haven't made an arbitrary cut off point being shut out from that horrifies me.

It won't even save them money. A diagnosis doesn't automatically equal benefits pay out. You have to be assessed for need like everyone else.

The money they save on support and interventionat an early age will soon disappear as those children grow and hit crisis point again and again.

OP posts:
Original poster
Shamefuldodger · 27/05/2017 08:28

Good point. I will report and ask hq to remove.

OP posts:
Teabagtits · 27/05/2017 08:30

I spent many years misdiagnosed and heavily medicated for the wrong condition this is how it will be again for many people who can't get an autism diagnosis. The trauma of being treated for the wrong illness and its impact has been immense and it will only stretch the mental health budget further if they stop diagnosing autistic people who function slightly better in society.

As it is to get a diagnosis there has to be an impediment to life in some way be it social (no relationships) or economic (workplaces etc) a you don't just say I'm a bit sheldon, and get a diagnosis. It takes weeks and multiple people involved to get a whole picture. The problem isn't that too many are diagnosed, it's that too few are aupported in life adequately. The burden comes from lack of support not extensive diagnosis.

youarenotkiddingme · 27/05/2017 08:31

It's discusting.

And they are missing the most important point - in many cases undiagnosed and therefore unsupported autism often leads to MH problems.
So they spend more undoing the damage and give the dx anyway.

The rise in diagnosis is that many older people - especially women - are finally being recognised as having autism after years of struggling MH difficulties.

I've also often maintained half the prisons are full of people with undiagnosed asd/ADHD etc who may have had better outcomes with a diagnosis, support and some feeling of self esteem that they can achieve or the ability to control anger.

youarenotkiddingme · 27/05/2017 08:34

I actually wasn't upset with the comparison to cancer.

My mum has stage 4 cancer and the last few years of her life will be difficult but before that she's managed well, had a good life, a great career and been happy.

I know full well she wouldn't think she deserves the diagnosis (in respect of assessment etc) rather than DS just because of the type of medical diagnosis she has. She recognised EVERYDAY is a struggle for ds and is likely to be for him lifelong.

StressExpress · 27/05/2017 08:40

It's so true about any savings now on support will only have to be paid over and over on support when older. Not going to say my job and out myself but often work with clients who were undiagnosed or without correct support for autism/ASD/LDs and the amount spent on social services, housing, support workers, educational support, benefits etc is literally jaw dropping.

These are not people who have severe conditions so would always need support anyway, just the people who fell through the cracks and were left until they were adults so no longer have care from parents bridging the gap and mental health issues became more obvious. If they'd been supported earlier it would have absolutely made at least the majority of their lives better now AND been cheaper in the long run, win-win surely?

marthastew · 27/05/2017 08:45

In the US, the only country which records such things, the average life expectancy of someone diagnosed with autism is 36. The main causes of death are accidents/risky behaviour - things like drowning - and suicide.

marthastew · 27/05/2017 08:47

My DS has ASD. We are in the trust next door to this one. I am terrified about the precedent this could set.

Original poster
Shamefuldodger · 27/05/2017 08:59

I can fully believe that marthastew.

Through my support group I know a couple of people who probably wouldn't have made it that far without support.

They appeared to be coping on the surface barely but really, really weren't.

OP posts:
HollyJollyDillydolly · 27/05/2017 09:07

It's terrible. We were 'lucky that dd(4) has been diagnosed asd this week. She's non-verbal and will need intensive salt to be able to communicate using pecs, however, she's only entitled to 3 appts before she's discharged and we have to go through the referral process again Sad
We're looking at private salt which isn't cheap but we can't have her not being able to communicate with the world around her.