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?

No it was very much a clinical decision but a team who wanted to treat my daughter properly as the normal treatment for neurotypical children was not working. An awareness of her her autism was also needed to help her access therapy and understand why she is the way she is.

Again this sounds like systems and society failing more generally, though given that that is the situation we are currently in I can see why many people want the shorthand of an 'explanation' that a diagnosis gives. It just concerns me that I see so many parents who think a diagnosis is going to be silver bullet and open all sorts of doors when in reality it does no such thing and all the problems are exactly as they were. It is both heartening to see that a diagnosis has opened doors for some on this thread and at the same time depressing that a diagnosis was required to address needs which were clearly very evident prior to diagnosis

@SquirrelsAreStinky

How do you stop the perception that 'everyone is on the spectrum' getting lodged in the public concience? I agree with you but it can't be denied that the non expert member of the general public will be left with a distorted view of autism.

I was wondering in your opinion do celebrities revealing their diagnosis help or hinder the cause of autism advocacy? I am spot personally. On the one hand you bring a spotlight to bear in a profoundly limiting condition; on the other there may be members of the public who feel autism is trivialized and the celebs are successful so can it be that bad?

Soon Musk has Aspergers syndrome. Do you think elicits sympathy or muddies the water in terms of the harrowing impact on families of neurodivergent disorders?

Elon

Oh I agree but the children with attachment and FAS aren't being correctly diagnosed IME, they are just being given ASD diagnoses. A 40 minute appt with a paed is not a multi disciplinary assessment and in our area that is how ASD diagnoses are made. The idea of a MDT approach is just pie in the sky

This is in my local area and means my child will no longer be able to access an assessment ashe had not been referred prior to the change in criteria.

There is a group of parents crowdfunding to mount a legal challenge to this, I won't post the link here but searching "assess for autism" in crowd justice should bring it up.

No it’s not, and if that is what you have been advised you have received terrible advice.

1:1 support in school, AP, CBT, anger management, counselling - can all be secured via an EHCP for which a diagnosis isn’t required. The school and LA may not be supportive but you can appeal to SENDIST. If the school need more funding they can also apply for high needs top up funding. If CSA DC can’t attend school then the LA must provide alternative provision regardless of diagnosis or EHCP. If they don’t you can force them to via JR.

Financial help to cover additional costs such as specialist clothing and shoes, replacement of items damaged during meltdowns - you can apply for DLA (or PIP for adults) without diagnosis. It is based on needs, yes you need evidence, that evidence does not have to be a diagnosis. Ask for a mandatory reconsideration and appeal if necessary

Respite care - legally a diagnosis is not required.
medication to help with his "suspected" ADHD comorbidity - isn’t based on a ASD diagnosis.

you only find that out when you are living it.

I have 2 DC with ASD (1 also has other needs), 1 with other complex needs. 2 of whom have EHCPs. I have also helped hundreds of parents on MN and IRL to secure support. I live this day in day out. Sadly DC whose parents know the law and can advocate for them get better support. It shouldn’t be like that, but it is.

I do think you're partly right in the sense that there's a huge weight of expectation on getting a diagnosis....and the stress of collecting evidence, and of being taken seriously etc etc.

You get the diagnosis for your child. And then....nothing. There's no magic portal of support. There's often not much more than a discharge and shrug of the shoulders.

Yes, a diagnosis makes a difference because it can inform agencies of the right approach. Autistic children might need a different approach which may not be evident - particularly when so many professionals don't have sufficient training in autism/ADHD etc. Teachers, for example, are not equipped with sufficient knowledge of autism to adequately support children in their classes. So yes, a diagnosis helps with that. It can get a referral to SALT. It can support an assessment by an Educational Psychologist.

But there's no magical doorway behind which a full suite of autism support services are waiting.

Diagnosis is so important, not just for identity and understanding, but for getting others to take your child's needs seriously, and for accessing services that are restricted. But yes, it's all still sorely lacking.

It's very upsetting to think that we'd have to allow him to get to that level of distress and crisis before he would even be admitted to the waiting list.

I don't in principle object to risk stratifying the patients on the waiting list to prioritise who is seen first, assuming there were enough resources to move the waiting list along (ha!) but to flat out deny access to assessment is awful.

Perhaps we were lucky. But ours was and we came out of the rather lenghty process with so much better understanding of what was going on and why. Before then people could see his needs but didnt really have a clue what to do about them.

Its a real shame if people get 40 mins with one professional.

It sounds like you had a really positive experience, so it's reassuring that at least its happening somewhere. Couldn't agree more with your username BTW!

It seems that you are totally unwilling to listen to what people are telling you.
People who have lived through this process.
It's so very easy to sit and read articles about what help is available and how accessible it all is. It's very different in reality and the diagnosis does matter.

I think people need to stop repeating the "I heard a psychologist say that we're all on the spectrum" - as people remember this stuff, and no amount of trying to correct it later seems to stick!

Hopefully this isn't sounding aggressive as that's not my intention. It's just so thoroughly frustrating battling this all of the time. My DC have enough struggles, this whole mantra of "we're all a little bit autistic" stops others taking their needs seriously and adds to the whole "well, just try harder then!" school of thought.

I think professionals should consider the weight of their words, and have some sense of responsibility before issuing personal opinions that others might take as fact. Imagine if a psychologist said "I think people will epilepsy could stop having fits if they just tried a bit harder" - it would be equally ridiculous and really irresponsible. No one would take it seriously. And yet, psychologists - it's nearly always bloody psychologists! - trot out personal opinions that seem to contradict the latest research, and people listen and believe. Gah!

I think sometimes it can be helpful to have celebrities talk about autism/ADHD etc. It does help to dispel the myth that we're all like Rain Man!

I've not been the biggest fan of Christine McGuiness as I feel it's a bit of a pity party - even the way her and Paddy talked about their autistic children was all very much "woe is me, my life as a parent is hard because my children are autistic". I don't really appreciate that mindset, or the fact of their children's autism being used as public currency. And I do feel that's the case sometimes, like Katie Price and Harvey. She has done some great things - and I'm not a fan of hers generally - but in other ways she's traded on his autism to boost her own profile. I think that's the bit about celebrity autistics that bothers me the most - those that seem to use autism to enhance their career.

Chris Packham is one that I think is more authentic, and I think he's doing amazing work in increasing awareness, and acceptance.

I watched that multi-part series on Elon Musk and he's a fascinating character. I think it does underline the fact that being autistic doesn't mean you can't be a bit of an arse sometimes. And also, that sometimes being autistic means you're not always aware of how you come across. I think that a lot of the time he means well but does get some things very wrong. I'm a Brit so there's also a cultural difference, and influences how I perceive him.

I don't think the public in general understand how all-encompassing autism is. And that even if you're successful, you can still endure huge personal struggles. It's like millionaire footballers who suffer from depression or mental health issues - look at all the comments from people along the lines of "what have they got to be depressed about?!" The public in general aren't sympathetic if you're outwardly successful - nuance is hard to convey.

Going on about how you don't need a diagnosis to get support is just totally ignoring the reality of the situation in schools.

I've seen so many kids struggle to cope in secondary, then fall apart, then get a diagnosis. They are clearly not getting the support that they need before the diagnosis. Lots of students struggle in various different ways in schools and a diagnosis puts the pieces together in a way that a teacher who only sees them a couple of hours a week certainly won't be able to.

The diagnosis puts a flag on the system. It suggests approaches. It gives a heads up to teachers who (hopefully) make allowances, and understand that a student might need a time-out if the class is noisy or struggle if others are rule breaking or whatever.

I suggest you re read my posts as you have completely misrepresented them.

A school or teacher that needs a diagnosis before they make reasonable adjustments is a shit school or teacher.

That's utter bollocks.

An autism diagnosis suggests particular approaches that are suitable for a person with autism.

If you don't know that a kid has autism, how exactly are you supposed to know what sort of approach to take? Given that you teach hundreds of kids in a week?

@mids2019 and let us say I am parent to a child who has low academic potential or even a low IQ unrelated to any autism diagnosis. Why exactly should that be a cause of low self esteem? For me or my child?

Ds had full time 1:1 in school long before his diagnosis. He also had a lot of other support. This idea that you need a diagnosis to access support or benefits is wrong and lots of even fairly severely disabled children don’t have a diagnosis not because of crap nhs access to assessment (though I think that’s frequently a problem) but because sometimes it isn’t clear what is causing difficulties.

You make reasonable adjustments to meet the needs the child has. It’s not rocket science. The needs don’t change once they have a diagnosis. Many many children you teach will have additional needs but no diagnosis doesn’t mean you get to just ignore it until they get a label!

The problem is that with slow diagnosis parents are left in limbo with having to rely on self diagnosis nobody HAS to rely on claiming to be diagnosed with a condition they haven’t been diagnosed with. Personally I think self diagnosis is fraudulent.

Ds had full time 1:1 in school long before his diagnosis. He also had a lot of other support. This idea that you need a diagnosis to access support or benefits is wrong

If your child has a full time 1:1 then the fact that they have SEN needs is probably fairly apparent even without a diagnosis.

Others have needs that are not immediately apparent. A diagnosis can be a very useful tool in that scenario.

If needs aren’t apparent how would you think to refer them for a diagnosis? That makes no sense.

If you teach hundreds of kids in a week, it’s not unreasonable to think you might notice patterns of needs, behaviours and responses that might let you be fairly decent at trying out helpful approaches with particular children regardless of diagnosis.

Some children never get a diagnosis that is any use in clarifying their needs (E.g. blanket ‘learning disability’) but they still have needs to be met.

I have a lot of sympathy for teachers but schools refusing to support pre-diagnosis is just outrageous.

I just want to reiterate, as I posted previously, I do think diagnosis is important. However, (with the limited exceptions like some specialist ASD schools that I mentioned in a pp) support is based on needs, not diagnosis. For those that that isn’t happening for that isn’t a diagnosis problem but a problem with the wider system and how it is being implemented, and parents can enforce provision. No it’s not easy and the system shouldn’t be like it is, but it isn’t going to change any time soon so parents need to know the law and how to enforce it.