Majority of child autism referrals will be rejected under new criteria SW England

[noblegiraffe]

A story in the Guardian says that on 1st March, NHS South West England introduced, without warning, new criteria for accepting autism referrals.

These include risk of education breakdown, risk of family breakdown, or very low communication levels, which is an extremely high threshold.

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

As a teacher, this is horrifying. A child being diagnosed with autism means that the support can be put in place that may prevent an education breakdown or family breakdown in the future. This will mean that things have to reach crisis point before a referral is even accepted.

Schools are supposed to provide support per need, without a diagnosis, but resources are so scarce that those with a diagnosis are obviously prioritised.

The story also says the new approach brings the SW in line with services in the rest of the country. So autistic children are being denied a diagnosis across the country?

@Oblomov23 you are SO right

"They should have already!"

When I said to my boss "the light in this room is too bright", I was told to put up with it. When I was able to say "autism diagnosis", "sensory overload", and the all-important words "reasonable adjustment for recognised disability", blinds turned up within weeks. Bosses and people generally, do not recognise the difference between an "I don't like this" preference and a need without a diagnosis. Needs are interpreted as preferences until you hand over that diagnostic report. Even then, I was forwarded an email chain in which someone in Estates had written about the blinds "has anyone got evidence of this colleague's diagnosis? I am having difficulty justifying this spend". Multi-national employer, thousands of staff.

You're all arguing based on the world as it should be, not the world as it is. Even if the world was as it should be, I still needed someone qualified to tell me that I was autistic so that I could stop blaming myself. Until that day, the voice was always there saying "you only think you might be autistic, you could just be not trying enough".

Policies that restrict diagnosis access like this will make more people slip through the cracks. Cracks like the one I described at work, where a need without a diagnosis to "prove" it was treated as an ignorable preference.

It’s not the medical diagnosis that drives support, it’s need. That’s how it works in school and it’s important it does because we need to present the individual not the diagnosis. That’s not a budgeting decision that’s the only sensible response.

Rather than accepting and excusing unlawful behaviour people should be supported to challenge it.

What should have happened is an Occupational Therapist should have decided what was necessary regardless of your diagnosis?

1. I'm not sure that I should take too seriously opinions on how I should manage my autism at work from someone who doesn't know the difference between an Occupational Therapist and an Occupational Health Practitioner.
2. How do you get your line manager to summon OH when he doesn't believe that you have a need to be assessed because you have no diagnosis?
3. OH requested the diagnostic report too.

The people who would be doing the challenging are already struggling to just cope with life and fear for their jobs, so let's not add to their burden nor put them at risk of retaliatory dismissal.

But why are they basing their adjustments on a diagnosis? How will they know what helps? Surely there are things you might not realise could help or might do that might not be optimal?

Apologies. I assumed we were talking in general not about your specific experience. I have absolutely no idea what will help your individual experience in your country/office/job, how could I?

Which is exactly why I posted “should be supported to…” You might think it is acceptable to excuse unlawful behaviour and allow it to go unchallenged. I don’t. As I said earlier, it is pointless replying to you about it.

There is what I consider OK and then there is what I am prepared to burden people with. Challenging discriminatory behaviour is rather like reporting sexual assault in that there are risks to the victim in reporting and they alone are the only one who can and should decide whether to take that risk. Supporting a victim's right to take the path of least resistance is not condoning the crime.

Unlawful behaviour should never be accepted, excused and allowed to go unchallenged. You obviously disagree, your prerogative, it is pointless going over and over it, so, again, I won’t reply to you about this again.

The diagnostic report wasn't a one line "you are autistic". It analysed how autism presents in me and ran to several pages. It isn't a complete assessment as I continue to learn more, but it was a great first start.

So the report was one thing, along with an office visit and interviewing me, that went into the recommendation of blinds. The reason that OH know that I'm not just making up a need for lower lighting, as opposed to a preference for it, is the diagnostic report.

In simple words: we live in a world where autistic people are called liars and disbelieved and a diagnostic report proves we are telling the truth.

:: I look up the thread at the posters I've been replying to ::

We cannot even tell our own experiences of how a formal diagnosis helps us without being disbelieved and gaslit, told "oh you don't need a diagnosis really". No wonder we aren't believed in school, at work, and everywhere else, when we tell our needs.

I did no such thing. we aren’t discussing rape. My post wasn’t anything about rape it was about EHCPs/DLA/PIP/blue badges/DFGs/reasonable adjustments for disability...

No victim of a crime is obliged to report. It's not on them to stop the next offence, whether workplace discrimination or anything else.

I have not said any has to report any crime. I am going to ignore you now as accusing me of not supporting anyone who had been raped is beyond the pale.

And yet you refuse to hear anyone else’s lived experience or consider that there are any other paths. You chose to share your “report” and your diagnosis and found for you it expedited accommodations in what sounds like a fairly unhelpful office environment. There were other ways and they may or may not have resulted in the same better or worse adjustments.
@FloatingBean wasn’t suggesting what you said at all. I think she was saying the legal situation needs to be defended and people should be supported to do that if they want to.

i want to say something very very clearly because for those who it matters, it matters a great deal. YOU DO NOT NEED TO HAVE A DIAGNOSIS TO RECEIVE SUPPORT. This is especially true in schools and I’m going to list some of the adjustments that we have received before diagnosis staggered finish/start, separate parking and entrance, pre learning, vocab lists, whole class communication support, full time end to end one to one TA, transport, music therapy, special school, extra time in exams, extra English/maths, writing slope, overlays, wobble cushions, special cutlery/pen grips, support for teaching staff from CIT, OT, and SALT…..and I should imagine lots I’ve forgotten. Please don’t wait for diagnosis to push for support.

You really aren’t getting it. Or choosing not to, You don’t know you need some of those things or how they would be useful until you get a diagnosis. My Dd had OT at the hospital and weekly physical therapy sessions in school after she got her dyspraxia diagnosis. We didn’t know such things would help her before, we’re not OTs or paediatricians. She also masks so a lot was hidden. Many parents would pounce on wanting some of those things when their children actually don’t need them and they wouldn’t be that useful. Kids with EHCPs often don’t get some of that. It’s incorrect to say you can march in and demand this that and the other without some proof from professionals and in many case a diagnosis.

And actually most of those things wouldn’t help my daughter without a diagnosis. She would have refused to use them and be different .She fell to pieces because she felt different, didn’t like being different and don’t understand or know what was wrong with her. She just felt shit. Having her autism diagnosis earlier would have helped her to understand what was wrong and her needs.

This is an old thread, and the proposed changes to autism assessment criteria in South West England were reversed a few months ago after being challenged by parent carer campaign group:

https://www.localgovernmentlawyer.co.uk/healthcare-law/405-healthcare-news/53729-integrated-care-board-makes-u-turn-on-autism-assessment-criteria-changes-after-legal-threat

what a waste of anger @Bingus ! on this thread!

i wonder what they did instead?

People not getting support without diagnosis (and a lot of fighting) vastly outnumber those with it and tbh I’ve never known of anyone getting things like special school and long term 1 to 1 without. When someone has a diagnosed condition and falls clearly under disability legislation it becomes a little easier. Universities ask for a diagnosis before accessing disability support and funding- if you don’t have it they will assist in getting it. Employers want medical evidence that you have needs otherwise anyone could ask for accommodations

Kids with EHCPs often don’t get some of that. It’s incorrect to say you can march in and demand this that and the other without some proof from professionals and in many case a diagnosis.

This is a fundamental misunderstanding of EHCPs. DC with EHCPs can receive that. SEP in EHCPs are based on needs, not diagnosis. Any DC in need of OT (including SIOT) or physio (or any other therapy such as SALT or MH therapies e.g. animal assisted therapy, play therapy) can receive such provision - often in excess of what would otherwise typically be available on the NHS with a greater number of sessions, longer sessions, more frequently etc. You don’t need to know what SEP is required. That is what the EHCNA is for and SALT and physio assessments can be part of that. No, no-one can march in and demand provision, no one has said they can. However, where LAs don’t include all the required SEP in the finalised EHCP parents can, and should be encouraged to, appeal to SENDIST where the vast majority of appeals are upheld..

tbh I’ve never known of anyone getting things like special school and long term 1 to 1 without.

I do this day in, day out. I have supported thousands of families with EHCPs and I have met many, many DC with EHCPs including SS and 1:1 without a diagnosis. There are posters on MN with DC who have or had such SEP and placements without a diagnosis.

My Dd got her EHCP at 18 because of her late autism, dyspraxia and ADHD diagnosis’s.

She spent her entire school career with nothing, not knowing what was wrong with her and plummeting into poor mental health because of it.

Thank goodness this ridiculous proposal has been overturned and other kids won’t be left to crumble in order to get the diagnosis they deserve.

An EHCP doesn’t mean you’d automatically get a 121 and without one any kid would be highly unlikely to get a 121. Most schools struggle to afford TAs for group interventions let alone 121 without additional funding.

As EHCPs are based on needs, not diagnosis, people can request an EHCNA without having a diagnosis. It is myth, perpetuated by some LAs and schools, that a diagnosis is required.