AIBU to worry about the surge in school-suggested ASD diagnoses?

[cremebrulait]

Fellow mums, I'm worried about a trend I've noticed in our schools. It seems some are pushing parents to seek ASD diagnoses to secure funding for support. While I absolutely believe children with autism deserve all the help they can get, I'm concerned about the following:

1. The high rate of suggested ASD diagnoses in some classes (much higher than average)
2. Schools advising parents to get diagnoses to continue enrollment
3. Long NHS waiting times leading to private evaluations

I worry this might lead to:

• Misallocation of resources
• Inappropriate interventions for children
• Overlooking other potential issues
• Psychological impact on misdiagnosed children

Shouldn't there be equality in support for children with other learning or developmental issues too? Like ADHD, emotional and behavioural disorders, sensory impairments, physical disabilities, intellectual disabilities, developmental delays, health conditions, sensory processing disorder, specific learning differences, or twice-exceptional children?

AIBU to think this system is flawed? Has anyone else experienced this? Am I overreacting, or is this a genuine concern? What are your thoughts on how we can ensure all children get the right support without resorting to potentially inaccurate diagnoses?

(I'll post more thoughts on misdiagnosis in comments.)

I would suggest that things like “you don’t seem clued up in the facts” is unhelpful. There is nothing I’ve stated which is not based on MY experience, with fellow mums. If things are different where you are in the UK, I cannot possibly know that.

Well I’m glad you think there is something wrong with my post. Because everything I wrote is EXACTLY what is going on at our school. And people are waiting 12-18 months at most in my area. Not years. I’m sorry you have waited years. I’ve literally returned to the UK less than 2 years ago and I’ve only experienced primary school in my area at one school. My mum friends are all in the same are except for one who is in private.

But thanks for being so kind and polite.

Sounds to me like scaremongering

Completely agree with you OP.

DS has an NHS diagnosis of ASD. Referral from community paed then the assessment was based on 2x sessions with a SALT and 1x session with a psychiatrist who didn’t spend any time with DS, the sole one hour interview with a Dr was with us parents.

i think it is overdiagnosed and the behaviour presenting as autism can be a constellation of other issues converging eg sensory integration issues.

It’s been 8 years and it’s now quite clear to both us (from the start) and medical professionals (years later) that the ASD diagnosis was wrong.

"There is nothing I’ve stated which is not based on MY experience, with fellow mums."

So not your experience.

So are you saying all local authorities are identical? Why are you going off on an attack? I am appalled by MY experience and those around me. If your are is entirely different it’s ok to say that. Accusing a stranger of nonsense is ridiculous.

I'm not biting in writing a proper response.

You're talking absolute bollocks.

That is all.

As if any LA just hands out EHCPs.

We had an experience where the school felt my daughter was autistic when she isn't. They had an ARP for autistic children, and seemed to put almost every behaviour that didn't quite fit the mould, as the child potentially being ND, rather than them being young and needing time to mature.

My daughter was placed next to a child whose behaviour was very challenging for my daughter, she used to poke her, pull her hair, stamp on her foot under the desk. When I raised concerns to the school, they said 'but she looks fine', and I said she definitely isn't. Their conclusion with this was that she was 'sensitive to sensory stimuli' and 'masking' and suggested a referral for an ASD assessment. Not that she was perfectly reasonable to dislike being poked with a pencil and flicked with a ruler dozens of times a day, but was doing her best to not make a fuss as we have brought her up to be tolerant to those with additional needs. Although I did have to take a look at my parenting after this she had understood that she should put up with being hurt, which is never ok, and that sometimes she can put herself and her needs first.

I know of at least 5 in my daughters class who school referred for an assessment, only 1 of which came back confirming an ND diagnosis, and they wanted to refer mine too, but we declined. I'm a paediatric specialist so was able to say no, she doesn't need an assessment.

It would be interesting to know how many school referrals come back with a confirmed diagnosis.

If someone at your child’s school is suggesting that your child is autistic and you don’t think they are, just tell them you don’t want your child referred for assessment. Other people’s children are none of your concern. I’ve seen far too many teenagers waiting for a diagnosis until they are 16 because they weren’t referred by school until they were 13.

I think this can be true, symptoms are attributed to autism. A child may be ND, with dyspraxia, SPD etc, but it's not always autism.

This is what I thought. But what I have experienced is being told to get an ASD diagnosis as if it is like going to the shop. It’s a catch all. I am alarmed. But people seem to outraged to the point they think I’m lying. Why would anyone waste their time? I thought it was based on need - but you’ll see by replies to me others think it’s not. So are different LAs doing things differently?

Do you think your DS has something else? Have the Doctors acknowledged they were wrong?

"I keep hearing about 1 to 1 support - but the children they support don’t need 1 to 1 help all the time! Isn’t that a wasted resource other parents could benefit from? "

My son gets 2:1. I bet you really don't like that.

Thank you for your response. So many people are attacking me. Its bizarre.

This is untrue.

School are often slow to raise even when autism is an obvious avenue to investigate IME.

As an ASD parent (daughter now 18), there was no additional funding that came with the ASD Diagnosis.

You might get funding with an EHCP … and you might not, it depends what your the EHCP says.

It took 3 years to get the diagnosis, and she get it until she was 17 - I wish someone had mentioned it to me when she was younger, it would have save a lot of anxiety, ESBA, self-harm etc.

ASD and ND is not mentioned enough

I’m or sure why you think I’m opposed. I in no way stated kids should t have support. Not at all. I’ve only questioned how schools (or our school) are going about it.

Btw .. we get several “ASD bashing” threads a week - you could just join one of those next time

@ClickClack300 yes hospital and community paed agree that the diagnosis was wrong. It’s on his nhs record still though. Yes he has other issues and is definitely ND but it’s not autism. We have worked with myriad nhs and private medical professionals over the years and they all have agreed that the “diagnosis conveyor belt” is “one size fits most” and does not pick up nuanced complex diagnoses.

I have read about a study that found that learning disorders were being diagnosed in the youngest children in the class twice as often as in the oldest.

That does make it sound as if mistakes can be made in this area.

Sorry op, but none of this rings true in my experience.

First of all, a diagnosis does not bring extra funding. Funding is linked to need, with or without a diagnosis.

Secondly, schools can only suggest that a referral would be useful. The parents then have to jump through all of the hoops once they're at the top of the waiting list of course (years later).

Thirdly, schools are not in the game to upset parents, have difficult conversations or complete huge amounts of paperwork for fun. We do it when we think it will benefit the child.

Fourthly, IME, most referrals are prompted by concerned parents approaching schools. This is happening more as parents are becoming more informed about neurodiversity.

And, lastly, none of this matters one bit if the swathes of medical professionals disagree. If a diagnosis is given, it is because that child is nd.

In our area, pretty much every mainstream school buys in SLT, NHS provision is generally only for under 5's.

I would just add for the record that the diagnosis certainly did not bring extra funding to the school and we were told not to bother applying for an EHCP. I did claim DLA for four years, however, which I used to pay for sensory integration occupational therapy which was brilliant.

What makes you think kids are being misdiagnosed? That's not done by schools and teachers. It's done by professionals who know exactly how to diagnose (and often they will diagnose ADHD, attachment, FAS instead).