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’ll get piled on for saying this but FASD is two to four times more common than autism in the UK. It’s being misdiagnosed as autism because no one will admit they consumed alcohol during pregnancy, and as a society we are conditioned to be polite about it rather than calling it out. I see it in here all the time, people saying not to worry about having gotten shitfaced before finding out you’re pregnant, or having a small glass of wine once a week throughout. We must not shame them 🙄

@PrincessPeache

Do you work in the area of FASD/ autism or are you just speculating?

I’m undertaking my Masters research in it and work with multiple FASD charities, and also work in SEN policy, thanks for asking.

Point 14 here provides the statistics.

This case study shows that around 85% of those with FASD are undiagnosed or misdiagnosed - and the most obvious misdiagnosis is autism because it presents very similarly.

Doing a Masters doesn’t make you an expert and the link you gave was American. In this country diagnosis teams do a though probe into developmental history and there are differing indicators for both.

I never said it makes me an expert? You gave a very binary “are you speculating or are you an expert?”. I’m neither. I’m researching it.

If a mother does not admit to drinking during pregnancy, what do you think a “thorough probe into developmental history” will pick up on to determine FASD rather than autism?

I know of several parents who are trying to get FASD diagnosed for their children with FASD and despite having all the indicators, they are unable to get the diagnosis without a birth mother saying she drank during pregnancy.

Yes the link was to an American research paper but doesn’t make it irrelevant. FASD remains underdiagnosed in the UK (as highlighted in the parliamentary paper you chose to ignore) and the American article shares a lot of relevant information about why this is happening around the world.

Sorry just seen you weren’t the poster who asked me if I was speculating or an expert but the point still stands!

Tonight’s reading @Poznan65 - by experts in the field.

Bore off with your pet theories. It's offensive and stigmatising to suggest autistic children really have FASD

Again alcohol consumption in pregnancy is a key question asked in a decent autism assessment. As is early exposure to DV, separated attachments etc. of course if people lie about it there's not a huge amount we can do. It is true that a lot of the FASD children we diagnose have a care history, probably because the admission is more readily made where a child has been removed or had heavy social care involvement.

Autism Prof- I wasn’t asked about any of that in my dc’s ASD assessment. Not suggesting you’re wrong, btw!

I taught a student with FAS - I know not all will present the same - but in this child's case there were obvious physical facial attributes and disruptive behaviour/impulsivity as well as general learning difficulties.
Whilst there is a comorbidity with ASC and ADHD, many of the students I teach who have an ASC diagnosis, don't show the same kind of disruptive behaviour I saw in my FAS student. Their behaviour was like that most of the time rather than triggered by changes in routine or sensory overload.

I’m not suggesting autistic children really have FASD - I’m sharing valid arguments that FASD is misdiagnosed, presents very similarly to autism, and is up to four times more common than autism. The majority of us will know several children with autism but few will know a child with a FASD diagnosis. Why is that?

Of course it is asked in many assessments but it isn’t a key feature at all and very easy to dismiss because of the shame and stigma around it. Again, the numbers aren’t quite adding up when the evidence suggests that FASD is up to four times more common than autism.

FAS is not the same as FASD and that’s part of the problem. FAS is just one of the FASDs. The “obvious” one because of the facial features, the one that is easiest to diagnose because the facial features make it hard to deny. But the others have no physical evidence, which is why it only takes a mother to say that she never touched a drop of alcohol during her pregnancy for FASD to be dismissed. And yet, four times more common than autism.

If someone is offended by the argument that some children with autism have been misdiagnosed and actually have FASD then they need to think why they find it offensive. Because if their child has an autism diagnosis but they absolutely never drank any alcohol during their pregnancy, then it’s clear their child is not misdiagnosed. If they did consume alcohol, it’s ignorant to dismiss it as a possibility though that their child may have FASD as there is no known safe amount of alcohol to consume during pregnancy.

I wasn’t asked it in my son’s autism assessment either despite them knowing he’s adopted - they never asked if we knew anything about birth mum’s alcohol consumption during pregnancy. Turns out that despite receiving an autism diagnosis, my son has FASD. We won’t ever know if it’s a comorbidity or if in fact his autism and ARND are one and the same, but there are very subtle differences in his behaviours and those typical with autism.

What a load of nonsense.
Where do I start?

My friend got her dd privately diagnosed last week, at a cost of nearly £4K. Took nearly 2 years. She says that to even be seen on nhs for a diagnosis is now 8 years.

@cremebrulait

"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. "

How old are you dc op? You've been living abroad and come back to the uk, only been in 1 school, for 2 years?

This doesn't give you enough experience to thus make such a broad claim in your op, imo.

Have you seen the ASD DSM-5 criteria? For diagnosis. The DISCO and the ADOS? To fulfill the criteria and get a diagnosis is not easy. Try it. Let us know how you get on !

And, afterwards there is little support. Little suggestions of what to do to make life easier.

But this is 85% of a population of fostered and adopted children, the incidence among fostered and adopted children is likely to be far higher than amongst the general population as it includes children that have been forcibly removed from parents due to alcohol/substance abuse

You really should have been :)

Exactly, in a population in which FASD is almost to be expected, 85% of it is going undiagnosed or misdiagnosed. In the general population, FASD still exists and is being undiagnosed and misdiagnosed too.

I have two friends who were fostering young women throughout their pregnancies and are fully aware that the young women were drinking. Both of my friends have gone on to adopt the babies but have been unable to get FASD diangoses for their children despite having witnessed prenatal alcohol consumption, because unless the birth mother admits it to the diagnostic team (and in one of these cases the birth mother is dead so that will never happen), they are extremely unlikely to diagnose. So it’s virtually impossible to diagnose in the general community either because no one wants to think that their few glasses of wine during their pregnancy has actually harmed their child, so won’t admit it.