ASD diagnosis rationing

[Blinkingstars]

https://amp.theguardian.com/society/2023/mar/26/children-put-at-risk-as-nhs-autism-assessments-are-cut-back

A health board is so overwhelmed with requests for ASD assessments that they have decided to ration them only to vulnerable kids. AIBU to be utterly outraged? My child would not meet the criteria but to be undiagnosed still would have been devastating for her. The primary teacher would still be giving her a telling off for running distraught out of classes like music when the volume got too much. She’d still be not understanding why she feels she’d odd compared to others (her words).

we waited 3 years for diagnosis as it was, after being told by the school that they would not heed a private diagnosis just an nhs one. It’s appalling how underfunded CAMHS but this is the absolute final straw.

It's awful and it worries me hugely this will give the green light for other trusts to follow.

My DD would have met the criteria as her placement broke down and we were on a CIN due to risk of family breakdown. We had already been in the system a year by this point awaiting assessment. She went from clearly autistic but a very happy child to in significant crisis in less than 6 months. Luckily already being on the list meant she got her diagnosis quite quickly once crisis point happened. Only having a referral accepted at the point of crisis and then starting the wait would have been unimaginable.

My younger child wouldn't meet the criteria, he's 6. Has expressive language on a par with 3-4 year olds and doubly incontinent. The fact he wouldn't be eligible to me is mind-blowing.

Diagnosis does matter. It is used to gate keep services. It is important for kids who need lots of extra help to know why they need extra help or you will end up with undiagnosed kids with huge amounts of support and clearly different with no understanding of the why on earth they have the help. The harm on a child's self esteem in that position is high.

Awful policy. Absolutely defies the entire principle of early intervention and support.

Long thread about it here https://www.mumsnet.com/talk/_chat/4771857-majority-of-child-autism-referrals-will-be-rejected-under-new-criteria-sw-england

yanbu this is a huge issue

I was eventually successful getting an assessment for DC at about age 12 after more than 2 years on the waiting list, at the time there was no crisis but I recognised the warning signs and a I had a friend at school who had gone undiagnosed until a mental health crisis and suicide attempt at 16, I knew how important it was to provide early help. fast forward a couple of years and even with the diagnosis in place we don't have plain sailing and there are lots of things that are overwhelmingly stressful but at least with a diagnosis we have a good idea of why and what mitigations to try, and without a diagnosis we would be in real trouble. this policy is so wrong, and is going to cause a massive spike in the kinds of crisis situations that are now being defined as the minimum threshold. the budgets need to be urgently increased because early diagnosis is vital to give parents the tools and information they need to prevent such failures happening in the first place.

' after being told by the school that they would not heed a private diagnosis just an nhs one'

If the assessment is NICE guideline compliant, they cannot do that so I would probably argue with this one. I'd keep looking for a reputable private practice that has multi disciplinary team completing assessments and raise this question with them. It may also help if some of the clinicians still work for the NHS.

DD’s diagnosis only came after she reached crisis point. And only because we arranged and paid for it. Even in crisis we were still facing a 3 year waiting list. The state of CAMHS is utterly utterly scandalous and this policy is only tinkering with the edges. More money is desperately needed and less compartmentalised thinking.

This is appalling.

My DD was diagnosed 8 years ago and the wait times were months, rather than years. It's devastating families are going through this and then to add further gatekeeping is immoral.

I work in the field if autism and have recently started working for a private company that does (NICE compliant) autism assessments. This company shouldn't exist. It should have no place in our society. Unfortunately it's inundated with referrals 😞

It is disgusting. We had to go private with our 2 children for an ADHD and ASD diagnosis. Best decision we ever made, but I know some people can't afford that.

Just read the criteria, when my dd was diagnosed, communication difficulties was a criteria for diagnosis, it's a key feature of autism so makes sense that kids being assessed have key traits. When did that change?

I live in that area, theres people talking about it, though as the head of my local school said, it's amazing how many kids of wealthier families have a diagnosis currently compared to the ones she's really concerned about! She's convinced that the pushy parents get a diagnosis because they think it's going to get extra time in exams ... I'm not convinced it is that simple but something is afoot.

My DD's diagnosis was very thorough, took multiple visits and reports from various professionals, whereas now it seems you can pay privately and it takes a couple of hours, makes me suspicious that autism is being diagnosed when it's actually more complicated

This is my local area. We paid privately to get my daughter assessed in September due to the waiting list being so long. It's sad to think that now she wouldn't even make it onto the waiting list. She is coping relatively well at the moment but I know that going to secondary school this September will be a massive trigger for her. She possibly would meet their criteria at this point as she is likely to be at a crisis point but , if we had followed the nhs route, would then still have a long wait to get diagnosed. There is absolutely no preventative planning here and it will affect the mental health of hundreds of young people and their families. I don't blame Sirona (who provide the assessments on behalf of the LA) but the funding has been shaved away consistently over a number of years meaning they now have to make these awful decisions. We are so lucky we were able to scrape together to pay to go privately but what about those who can't? Just another example of wealth disparity ☹️

Diagnosis does matter. It is used to gate keep services.
This.

If a child doesn’t have a diagnosis they don’t have access to opportunities and benefits claims. But autistic children become autistic adults who also don’t have access to reasonable adjustments at work, legal protection from discrimination, can’t apply for opportunities with “diversity criteria”, can’t claim PIP to support their needs, can’t access support services.

We are so lucky we were able to scrape together to pay to go privately but what about those who can't? Just another example of wealth disparity
If poor people can’t get autism diagnosis, publicly funded services which support autistic people will only be available to the rich who could afford to pay for diagnosis.

Just about to make the same point. If Autism or ADHD diagnosis meets the ICD10 / DSM 5 criteria it is a valid diagnosis. Ignoring this would be disability discrimination.

It's always been rationed and parents have always been fobbed off and turned away from accessing diagnostic services. I have a ds who is 24 with ADHD and PDA who ended up with a severe anxiety disorder and eating disorder due to no help and we had to go private with ds2 who has Asperger's autism and who has needed medication for severe anxiety from age nine, he also couldn't attend secondary school and we had to pay for provision online. If we hadn't have had the money he wouldn't be here now.

This was under both Labour and Tory governments. Neither take ND seriously or take into consideration the serious impact of unidentified/untreated ND. Both my adult dcs are medicated and stable and have legal protections that come into play with having a formal diagnosis. They're also both achieving in their lives despite the terrible setbacks, but this is thanks to me and dh.

Sadly, this is so true. Of course children & adults with a diagnosis don't just claim benefits. With the right support, some (many) will go on to employment and become net contributors.

Or we can leave our heads in the sand and leave undiagnosed children to a lifetime of mental health challenges and a chequered employment history.

You wouldn't do this for other conditions. So why is it somehow ok to do it with Autism?

Mine don't claim benefits and probably won't need to. One is working already and paying back his student loan and the other his hoping to get into a university near home so he can continue to live with us. His diagnosis will form part of his application and will help him obtain a place due to that university's particular arrangements to help people like my ds.

Just proves the point though. Access to opportunities for autistic people helps them become independent and work. Without a diagnosis they wouldn’t be eligible for those opportunities. Only those from rich families (who could afford private diagnosis) would be able to access such opportunities.

This is true. We're not rich, but we have made big sacrifices to afford the assessments, medication and online learning. It's been a struggle. I feel very bad for poorer people who will receive no help whatsoever. It's an utter disgrace. ND people can and do contribute to society, but we need certain things in order to do so.

This concerns me massively as I am in neighbouring county. As schools are so overstretched they push back on offering any support as the child has no diagnosis (I know they shouldn’t but that had been the experience of my friends). EHCPs are meant to be needs based not diagnosis based but if you don’t have a diagnosis then the local authority will push back.

I can see that primary aged children will get suspended or expelled or refuse to go to school before a referral goes in. If this happens then one parent will have to give up work to support their child pushing the family into poverty.

MH serviTeh ces for children are appalling imo.

A friend's son has been under CAMHS for almost 6 years. He's been out of school for approx 5 of those years, save for a couple of sessions at a "teaching and learning unit" that was woefully inappropriate for him. She has tried and tried to get help for him, but whenever she spoke to CAMHS, their response was that "He's not Tier 3, so there's a long wait".

He shows many signs of ASD, along with a whole raft of other MH issues, eg PTSD, social anxiety disorder, general anxiety disorder. He will only leave the house on very rare occasions, because he can't bear people "looking at" him. He has had no meaningful input from CAMHS in all that time, just 2 online therapy sessions, which he really struggled with because he is hearing impaired.

Friend was at the GP the other day for a physical health issue and the doctor asked about her MH. She completely lost it, broke down, and told the GP everything that had been going on. GP said she was going to speak to CAMHS, and within days friend had had a call from a psychiatrist and he now has an appointment and has been referred for autism assessment.

The whole system is totally fucked up. And it's a false economy, because the lack of appropriate input for children means more of them end up having lifelong struggles with their MH.

As a parent of a so-called "high functioning, fine at school" 6yo trying desperately to get support for our dd who has been school refusing since Feb half term, this makes me so angry, sad and frustrated.

We had our EHCP needs assessment turned down on Thursday last week. Despite clear evidence of masking, in girls in particular, the LA insist on insinuating it's the parents' fault by pointing out inconsistencies between home and school behaviours and using that as the reasoning behind turning down our application.

We'd been warned that the default position for most LAs is to reject an EHCPNA, saying that 98% of SEN children's needs can be met within existing SEN funding envelopes. It's clear to every parent living through this, that without an EHCP many schools cannot adequately meet children's needs.

We've jumped through hoops, done all the parent led behavioural modification stuff, have a 12yo son who is thriving and liked by everyone. Dd has high levels of school based anxiety and sensory processing issues. Her whole day at school is spent keeping in all her worries, to the point where she simply breaks down and avoids clothing altogether. But she's 'meeting expectations', or at least was before she started refusing to go to school.

We've spent 3 months trying to get the final piece of evidence we need for a neurodevelopmental assessment via CAMHS. And then there's a two year wait. No assessment, no EHCP in the meantime, one of us facing the prospect of having to give up work. It's the shittiest of shit situations - and many people have it even worse than us. At least our dd sleeps well, so we get a break then. Loads of parents don't have the time, the remaining energy, the knowledge or the skills to navigate such a complex myriad of pathways, professional services, regulations and rights. The system is desperately broken, fundamentally flawed. We have a last resort of paying to go private. Most don't even have that option. It's an absolute shambles and a disgrace.

If they could sort out the behavioural chaos in schools, ND students might be better able to cope. Schools are just bear pits now driven by cruelty - bullying by other students - noise and social confusion.

My first secondary school - back in the 80s - was well run, quite old fashioned and the other students were normal young people as opposed to the bullying psychopaths we have now. Yes there was the odd bully, but nothing they did was extreme or unmanageable. I then had to leave that school due to moving and the next school was a complete contrast. It was poorly run by some trendy liberal, bullying was rife to the point of an English teacher ending up in tears once and I fell apart. Ended up with school phobia/refusal.

ND students cope better in a well controlled, calm atmosphere where the other students aren't permitted to step out of line. There are other elements which help, but which people pour scorn on now, so they aren't coming back unfortunately and I'm not referring to corporal punishment before anyone wonders.

I dont think it’s a new thing more that this is the first time the truth has been told.

My ds had 4 referrals put in over 6 months (2x HV, 1xSALT , 1xGP) all rejected. He is severely autistic and we had to go private . We aren’t in the SW, the reasons given for rejecting the referrals were not acceptable either .

It's disgraceful, and will only increase bigotry.

There was an awful thread just yesterday on "commonplace things you wish weren't socially acceptable" that devolved into several posters ranting that people who seek diagnoses for conditions like this are just attention-seeking naval gazers who are stealing NHS resources from people with real conditions.

There's some disgraceful attitudes in the world towards neurodivergence.

It’s also hard at schools. Support is meant to be based on need but it’s often not the case- they take a diagnosis much more seriously but getting that diagnosis is so hard
we did get told through we had paid for them to write what we asked for !!! I pointed out that the diagnosis was based on the same criteria and assessments the nhs do and by a consultant who also works in the nhs …

100% this. My child would be fine in mainstream schooling if there was a basic control of low level poor behaviour - she’d love it - but hates school because she gets bullied all day every day for being different. The school does nothing.