‘Interesting’ article on overdiagnosing in Times.

[Soontobe60]

Just putting this here for discussion.
https://www.thetimes.com/article/9f82545c-57f5-4db2-8a47-9a8cc2304243?shareToken=c0f809004b0c59cf1b96f6b6eb6129c3

I think many people don't realise just how patchy the science around Neurodiversity is. They treat a diagnosis as if it's the same as being diagnosed with some physical conditions where definitive testing can be conducted. Assessments for ADHD and to some extend ASD are incredibly subjective. They rely on observing behaviour, self reporting and 'evidence' provided by other often bias sources. The parameters of these tests change as our understanding increases but it is almost certain that we are nowhere near an end state for any of this.

So we now have anyone that is struggling looking for a diagnosis that they can often internalise and make a fundamental part of their identity. It is so dangerous when we know so little about the brain, genetics and how they impact our behaviour.

Dangers of diagnosis are real. I heard a young man with ASD complaining that once he was diagnosed with ASD, any negative behaviour was dismissed by his parents as due to ASD. He talked about one situation as an example where he was angry at what was happening, but his anger was just dismissed as a symptom of ASD.

The likelihood of teachers lying on forms is lower than that of parents lying on forms. I have always completed any screening tools honestly, reflecting how a child presents in school. I don’t comment on behaviours that parents tell me they witness at home on a daily basis, but that doesn’t mean I don’t believe them. I do the same for DLA application forms, and with one exception from the numerous forms I’ve completed, every child has rightly been awarded it. When a parent approaches me about concerns of ND, I may ask if there’s anyone else in the family who has a diagnosis, because we now know that familial connections are high.
I know many SENCOs, all of whom spend massive amounts of time pushing for assessments for children who are so obviously ND. It’s a shit show mainly due to funding, or lack thereof.

I think (or hope) that the assumption that ACE is the main trigger for ADHD is pretty much debunked. But I do think for some children, it’s a significant cause.

Why would a patient or private clinic send you a no-diagnosis report if they weren't diagnosed? It would be like me phoning my GP to tell him that I didn't have cystitis.

You’d think that’s the case, but you’d be wrong. A colleague of mine is SENCo in a private secondary school. The number of students that rock up in Year 8 with a private diagnosis, before the school has even had chance to commission any investigations, is eye watering. These are children that haven’t been on a CAMHS waiting list for months and months. They’ve not even had a referral. There really is a private system out there that is being exploited. In my State primary, our kids are lucky if they get seen within 2 years of referral. Their parents absolutely cannot afford a private assessment.

She makes many excellent points, but, a big but I truly believe there is something in our lifestyle today that is increasing the symptoms of neurodiversity- there are many reasons you may have symptoms that meet the criteria eg many genetic disorders do, and I think we are doing things that cause it too, in myself I think it's my mobile phone, constant entertainment, instant gratification, I've become noticeably more fidgety, I bore easier, I need constant input ... that's me, I'm 50, what are we doing to young brains! I have no "proof" this is observation combined with the thoughts of my friend who works in public health. And this is not dismissing the symptoms btw, they are real.

Yep!

But there is something that causes ASD that must have a scientific basis. My diagnosed autistic son can function fairly well but he tiptoes everywhere, flaps his hands constantly, squeaks and stims and makes high-pitched noises all the time, has various sensory needs and aversion as well as learning difficulties. He is clearly very different from his typical peers and there must be a reason. I didn’t drink, smoke, took my prenatal vitamins, he’s been brought up in a loving and stable home. I wish I knew what and why- whether it simply is in genetic makeup and/or some kind of environmental factor.

I think clearer understanding of the cause of autism and a more easier/accurate diagnosis test would be extremely beneficial to individuals with autism and it is so frustrating to see pushback against it.

I dont understand what you're saying, you say you hope that the theory that ACEs are a trigger for ADHD has been debunked but then say you think for some, its a significant cause? You're saying the same thing

However I think what worries professionals is that the traits and behaviours that are seen from trauma and attachment difficulties are sometimes (and I dont know how much) are confused with ND traits

The current theory is that ND is something you have or dont have. However the behaviours are very very much affected by ACEs, by the wrong type of parenting for that child so the children who are largely highlighted at school are children whose needs havent been well supported by their parents. There are always outliers of course and excpetions to the rule.

It may well be that 1:16 claim DLA, but I’m pretty certain that of those who claim, very few receive it. Out of my school of 400+ children and 15% SEN, only 10 of our children receive it. That’s not for want of trying. They all have EHCPs and 5 are waiting for special school place.

My own theory is that its simply genetic for children like your son, its his make up, its his brain creation

One of my parents was interviewed by the assessor and meeting notes exist from when I was at primary school, when the head teacher referred me to EdPsych who didn't detect me because no one was looking for autism in girls in the late 80s. There are two diagnostic interviewers and they look at how you behave in the interview as well as what you say.

So try again with "100% self-reported symptoms". You're basically calling late-diagnosed adults liars.

Have you read what ACEs are? I have read nothing that says ADHD or ASD mean someone is more likely to abuse a child, be an alcoholic or habitual drug user.

It was very different in the eighties to now. Nowdays children are diagnosed even though their symptoms are only seen at home and so self reported by the parent. This is at odds with the DSM diagnostic criteria.

If you type into Google, what is my problem, I have a fear of vomit, I am always late, I worry about what people think of me, I can't look after money etc, etc, etc, there is a name for my illness.
It degrades the people with real illnesses. Or maybe not?

For some reason I find a big section of the ASD community push back massively at any kind of research to identity or explain what autism actually is. I don’t understand it.

If a genetic cause was found, the prenatal testing and subsequent abortions would result in autistic people being wiped out. Some autistic people aren't particularly comfortable with that prospect.

A genetic cause is very unlikely

Strangely, when you keep getting social interactions wrong no matter how hard you try, that tends to cause anxiety and depression.

It's very common for autistic kids to cope in primary school and then fall apart in secondary when social interactions get more complex and sexuality starts to manifest, adding a layer of extra possible motives to have to navigate when interacting with other kids.

@whatsthatBout do the families of severely affected autistic people want to find out the cause, in your experience?

Your family are exceptions, not the rule. https://www.autism.org.uk/what-we-do/news/new-data-on-the-autism-employment-gap

That isnt a very good argument for preventing scientific discovery.

Remember people with undiagnosed/unmedicated ADHD have a much shorter lifespan than a NT person and their brains aren’t the same shape as a NT brain

I’d be really interested to see the peer reviewed evidence for this is.

I am not autistic but struggled socially at secondary school. The learning curve is massive.

You've not met my family then. You can see the same signature behaviours in my late DGF, my DF, and me, despite me being female and having undergone female social conditioning.