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.

We made this point exactly in a meeting earlier with dd's school. I asked if she's on the school SEN register and they said no, they prefer a diagnosis. I said that was unlikely to happen in the time she has remaining at infants. Thankfully our case worker from the LA pushed back on that too and they've agreed to add her.

I live within this area and it's been a fucking shambles.
My DC (twins, 5) were just about to be referred and I was waiting for the school to complete their part of the referral.
The school's SENDco had no prior knowledge of the change in rhe referral criteria (which was March 1st). The service provider, Sirona, demonstrated an outrageously badly inadequate roll out of information (and predominantly after the event).
I found out by chance from Community Paeds and it was me who informed our school's SENDco, who then spread the word amongst her SENDco network.
As we missed the cut off for referral through the old system, neither my twin DC meet the new referral criteria. Nor do I have the financial privilege of being able to go private.
I feel defeated, but still tirelessly advocating on behalf of my DC, including transferring Twin 2 to another school in area from next term.
It doesn't feel hopeless as such, as I will keep fighting for my daughters, but as a long term physically unwell AuDHDer, I only have so much fight in me as a financially disadvantaged and somewhat socially isolated solo parent.

Why wait for kids to be in crisis? Every area of kids mental health they just wait until the very worst possible crisis for the kid before they actually do anything. The trauma for the child is massive, and then it also affects the rest of the family. ‘A stitch in time’ applies so much here

It's not only North Somerset/Bristol/South Glos; I believe similar has happened in an area of Yorkshire.

We are going through NHS Child Development Centre for suspected autism for two of my children. There is NOTHING thorough about it. Each of them have had two (30 minute) meetings with one paediatrician, BOSA (playing games for 40 mins with a Speech Therapist looking for patterns of speech) and filling in the forms twice... all this has taken place over 3/4 years that apparently counts as a thorough examination of whether they are autistic or not. Currently as it stands by Summer (one last 30 min meeting to say if they are or aren't) i think one will get diagnosed and one won't. The one that won't i can fully imagine having a breakdown in a few years! I wish i had gone private.

My DS was assessed privately a couple of years ago (we couldn’t wait on the NHS list any longer, he was refusing school, self-harming etc). I had 1.5 hours talking to them about him, then 2 people spent 2-3 hours each (on separate occasions) talking to and playing with him, and another visited him at school to see him there and talk to his teachers. I felt that it was a very thorough assessment, and their report was very detailed.

I know there are some very dodgy-looking “assessments” available privately (although I’ve mainly seen them for adults - an hour zoom meeting, for example), but there are some private assessments which really are thorough.

This sounds similar to the private assessment my DS is in the middle of.

90 minute initial appointment with a Paediatrician (also works at our NHS CDC)

90 minute HL SALT assessment

90 minute clinical psychologist assessment

Further 90 minute appointment with Paediatrician

Outcome 60 minute appointment.

£2550 which is painful. Our NHS equivalent is all squeezed into a few brief appointments.

"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"

Communication difficulties are among the criteria for diagnoses, but autism is varied, and these difficulties aren't always present to a degree that meets the threshold. So there is nothing sensible about making them a criterion for even getting assessment.

When my son was assessed (by the NHS), the finding was that his very good language skills had masked the extent of his autism. That made life very much harder for him because other people could not very easily see the awful difficulties he faced.
That article only specifies three of the assessment criteria, but since it mentions that he risk of death by suicide is greater for autistic people without intellectual disability, I'm gathering that the effect of the criteria combined is to make it harder for higher functioning people to access help.
This was my son's situation. I believe he was much more profoundly disabled than his presentation suggested. And that contributed an extra level of suffering and need. And he did in fact kill himself.

Random, I am so, so sorry for your loss. What a devastating thing to happen.

We only have enough to help the most disabled by their autism and those that have reached crisis point. We have to do that then, because the alternative is NOT diagnosing the most disabled and vulnerable and using the resource elsewhere.

But TomeTome, we don't know who the most disabled are until they are assessed (and, if appropriate, diagnosed). The bureaucratic process of deciding who goes where on a waiting list isn't the same as an assessmnet of need.
(Hercules, many thanks x)

We only have enough to help the most disabled by their autism and those that have reached crisis point.

But if they have to reach crisis point to even be eligible for assessment and then wait excessively long period for that assessment much less any kind of support and intervention that’s a lot of families living in crisis for long periods of time. Which raises the risk of longer term harm, poor mental health and ultimately potential suicide.

We can’t look down the road and predict those who will reach crisis point, so surely early assessment and intervention makes much more sense even from a resource issue instead of constantly fire fighting.

This goes against NICE guidelines, and they are ripe for a Judicial Review.

https://www.nice.org.uk/guidance/cg128

I’m sorry, you can’t have chemo because you haven’t got dependant children. Is thus something you’d expect to hear? No. The diagnosis of autism is basic vital healthcare, not a ‘nice to have’ add on. It’s just outrageous.

It really is shocking. We have waited nearly 10 years and just got a diagnosis. My child was 1 when we started getting help and pushing for answers and now to be nearly 11 and heading to secondary school; he needed his dual diagnosis of autism and adhd to get the help he has needed for years. The system is broken. Parents are told it’s down to parenting in the early years and often left to just cope in between then after diagnosis there isn’t much support either. They are really letting families down, I don’t think my child would fit the criteria and it’s sad

By the time they've reached crisis point they'll probably need mental health support on top which will cost the NHS more

I think people need to really open their eyes to health rationing! What is happening in SW is just a tip off the iceberg !
Soon it will cover all health conditions if we don’t keep our eye on the ball.
An example from me personally is that husband has now been refused referral to memory clinic (despite being told in 2018 that he had mild cognitive impairment ) because GP doesn’t in the 5 mins she spent with him feel his memory is bad enough!
Let’s wait now until he has full on dementia is how I have interpreted her decision!

I don’t know enough about chemo to make a good analogy but obviously not having access to health care is very worrying. However we are where we are and not in a world of plenty and limitless resources. We need to think hard about what we do with what we have. I think they are right to prioritise those in crisis right now, because anything else is unthinkable.