To find the growing narrative of over diagnosis (autism, adhd and mental health) upsetting and draining

[Frazzlesforever]

There seems to be a drip drip of press headlines and change in the conversation that too many people are getting diagnosed. And that some parents are being too pushy to get extra help or trying to get be benefits etc.

As the parent of a high masking autistic girl I had to push for diagnosis although the school just saw a highly compliant, quiet anxious child. My daughter is now extremely mentally unwell through not coping in school, has had to drop out of school missing her gcses, emergency CAMHs involvement - devastating for her and us.

She is exactly the type of child who would fall under the radar. Just an anxious child with over anxious parents. Apparently seeming to cope until she just couldn't. Surely if anything we need better understanding and support for these types of children not less. Otherwise we also risk kicking the problem down the road To severe problems in adulthood. - poor mental health/outcomes etc.

Two times shares for further reading.

Autism study is my life’s work. The spectrum has lost all meaning. Many won’t like what the read in them but she’s right.

Many don’t seem to be aware of the overlap between schizophrenia, bi polar and autism. All can be misdiagnosed for the other. Or might be concurrent.

The concern is that some aren’t getting the correct diagnosis they need to be well.

there’s also concern that in SOME cases, a diagnosis can lock a young person into a box that actually ends up limiting them rather than helping them themselves to fulfill their potential.

Ive recently been made aware that some MH pathways aren’t open to children and yp diagnosed with autism. Whilst conventional cbt may not be appropriate for autism, it’s possible that it could work for some. As everyone is an individual.

And with regards to adhd; meds don’t work for many and have awful side effects. So you’re left dealing with self care strategies- of which there are a great deal. The same self care strategies work for many people who are struggling with milder symptoms.

Theres also the psychological issue of self fulfilling diagnoses; it’s well documented that we tend to hone in on more symptoms after a diagnosis. I’ve experienced this a lot. I also appreciate that feels very gaslighty when you really ARE struggling- I’ve felt this! But it’s about getting the right support for the specific difficulties you’re experiencing rather than what is now a very broad diagnosis.

I’ve taught autistic children all my working life and there are clear differences between types. Aspergers was a helpful description of some of these children, not least as certain strategies and therapies really help them. (There’s discussion of bringing it back under a different name.) we also have children for whom none of the strategies work. And it’s quite possible that the diagnosis is not correct. They may go onto other diagnoses when they’re adults. (1 in 10 autistic adults develop schizophrenia. Some data shows higher. Early medical help is key for managing it)

https://www.thetimes.com/article/a83d207b-3a34-4364-b715-e479f4f68c19?shareToken=c52f033ae637b940b6efd56e79a28294

Children ‘incentivised’ to get ADHD and autism diagnoses, say experts

https://www.thetimes.com/article/9a1df249-559e-4ac7-8985-26697af9338a?shareToken=1e313d37be74b7652ffb1f0934e3730f

Kids couldn’t cope in the past either. Your entire premise that more kids can’t cope is false.

No it’s ignorance and threads like these and it’s beginning to be recognised.

NHS taskforce:-

Stigma: We noted people with lived experience report challenges and injustice around ADHD because of stigma, misinformation and misunderstanding, including among some professionals. There also are concerns about the accuracy of information on ADHD provided by some sectors of social media and traditional media. Children and adults highlighted the impacts of negative attitudes around ADHD on them. We noted additional stigmatisation for those from marginalised communities.

Yeah because what could possibly go wrong…

Do you not see the possibilities for abuse of that system?

This professor has been widely criticised and discredited- for good reason.

There are diagnostic tests and records reviews that show if a person is NT or ND. It’s quite a complex assessment that requires a specialist consultant psychologist to perform.

Please dont "throw in dyslexia" like its not a Nero divergent so many think thats just trouble with writing. However dyslexia has many markers in common with ADHD and Autism.

ADHD vs Autism vs Dyslexia: Complete Comparison Guide https://share.google/9HtcJiGdFN7tFn3AI. Is an interesting article around it

Diagnosis is only given if the symptoms cause significant functional deficit. It's part of the diagnostic criteria. So if someone is doing really well despite having ND traits, they won't receive a diagnosis. If they are having to deploy huge coping strategies to perform daily tasks, but managing, they will receive diagnosis because the risk of burn out is high. If they are trying to cope but failing, they will get a diagnosis.

I meant to add this image from the article

I think perhaps it is kids appeared to cope. I went to school in the 70s/80s. The most serious ones weren’t sent to school but the rest of us had to just get on with it. Nobody knew it was a possibility so boys would be seen as badly behaved and punished accordingly and girls usually flew under the radar by masking.

I mean it's fine to expect diagnosis and support but whether there's overdiagnosis or not I think we need to be honest about what we can and can't afford to sustain. My daughter is in a relatively affluent village primary in Y3. I could name about 20% of the kids who have a diagnosis of ND or are awaiting one in her class. I'm sure this will increase once again towards secondary school age. These are just the kids I know about and I don't really talk to the other parents much tbh.

I'm not here to debate whether these children have autism/adhd/depression/anxiety but I do think we need to start seriously asking why we are raising a generation of children in which such a huge proportion of children are unhappy and unable to cope with the basic requirements of life. This cannot possibly entirely genetic.

I'm reading 'The Anxious Generation' by Jonathon Haidt at the moment and it's a real eyeopener.

Agree. Not too long ago it was all the people self diagnosing with depression or long covid that was stirring up the same ableist narratives.
Politicians claiming that depression was “medicalising the normal ups and downs of life”
People saying long Covid/chronic fatigue were just lazy scroungers who had checked out of life to binge watch Netflix instead of going to work or school.

I hear you OP. My child goes to a specialist school that is what many would call a SEN school and leave of the D part.
Limited resources exist on every level for parents of children with any kind of educational need but education is only one facet of the issues that media targeting of “over diagnosed” conditions hits at.
There has also been the Motability scheme (which has calmed down since Labour has made Motability pay VAT), school transport and access to services such as speech and language therapy. I can’t even go there on EHCPs..
My child is one of the very few children who get discussed or targeted in the media because she is severely physically disabled.
Instead she gets the “well there’s limited resources so when the welfare system collapses ha ha” comments from some indescribably vile people.

And she gets refused treatment from the NHS because “resources”.

It’s a draining and horrible situation that every person has a view on without having much in the way of experience.

We need many more specialist schools with small classes, trained staff, safe spaces. Geographically accessible. But these cost too much money. Many children were coping well in small private schools. But this is very expensive.
Now there are going to be "hubs" and even more training for teachers who already can't cope. From what I hear from my family, the ones who are teachers and the ones who have children, schools seem to be wall to wall noise, chaos and stress.

Yes because I tick those boxes, not in my 60s yet though. I am outwardly very successful. I was high achieving at school, have an amazing career and a family. But internally I struggled so much throughout my life, even as a young child and I never knew why.

I thought everyone's brain was like mine and I must be a failure for not coping with it. I've been suicidal many times in my life, from the age of 9. Getting a diagnosis changed my life because I had a framework and was able to be more compassionate towards myself. I didn't know I'd been masking for decades.

I like it to a swan swimming on the water. If you saw me you'd think I was fine, but underneath I am paddling furiously, against the current.

I agree, it's the quiet people pleasing girls who are under supported. The loud disruptive children get support as they are the ones who are harder for teacher to manage. And that's no disrespect to teachers, it's an impossible job to balance every child's needs.

Or they are using strategies that requires a lot of effort so work a lot harder than anyone else with no recognistion for this.

As a dyslexic individual it takes me longer to process and read or write things than it does my non dyslexic partner. For many they express surprise when I share my dyslexia as they do not notice. I make use of AI and other tools to support me but its tireing and takes longer and I work hard to function on thr NT world. Who all sees me as "having learned strategies to cope that are not effortless so I am not masking"

They take effort and I like others get exhausted from it. Aka I am masking.

In my 50s and living a full life but please dont diminish the effort I put in to do this.

Neurotypical doesn’t exist. Neurodivergent was developed to broadly describe disabilities that were cognitive rather than physical impairments. As the needs are very different. It’s a social justice term. But being used as a diagnostic label.

We are all neurodiverse as human brains are unique. They’re also vulnerable to external stressors. (Trauma, physical annd emotional, abuse, physical and emotional- but also respond to positives, holistic care, being part of communities etc.) And very plastic - you can continue to learn your whole life and your brain will show those changes on brain scans. Eg, learning a new language. Particularly plastic in early years and again during puberty. Those with learning difficulties obviously find this harder. Anxiety, trauma, abuse all inhibit learning (ACEs.) But there are BCEs too - benevolent childhood experiences that do a lot to help a child flourish and over come the ACE.

Physical exercise has huge impacts on brain development and brain function through to old age. Particularly things that rely on visual motor skills and crossing the midline. (This can include the arts too.)

It is common for a child who has been abused and had a great deal of childhood trauma to be diagnosed with autism as the symptoms can be similar, but mainly because the provision is better for their needs. Thanks to the current system.

that’s what the phrase incentivised means.

This is a particularly important part of the review:

I agree, I think I have adhd and would function better with the medication, well idk that for sure but would like to try it. Even in school teachers thought there was something wrong with me but my parents didn’t want to take me to the doctors.

I’m put off of going by the thought people might think I just want PIP seeing as that’s all anyone talks about these days, I should probably get over myself and go anyway.

Yes exactly, the essence of a disability is that it disables. The bit that you are misunderstanding is that just because I (and most other intelligent neurodivergent girls and women) am good at hiding difficulties, it doesn’t mean they don’t exist. For example, I am ridiculously early for everything because I do not understand the passing of time (which is also why most people with ADHD are always late), I did a lot of impulsive shopping and chocolate eating, so have had many debt and weight problems. Nobody knows how burnt out I used to be because I was desperately trying to appear normal by constantly studying how others behaved. I have ME/CFS as well (it’s a
chronic illness). My ADHD consultant psychiatrist told me that she has a surprisingly large number of patients with ME/CFS (my GP has only me and one other), and she is convinced that the stress of living with undiagnosed and untreated ADHD is a
factor in people getting this illness, which incidentally has made me too ill to work.

You can only get a diagnosis of adult ADHD if if you had the difficulties as a young child and still have them as an adult. As you point out, some children do grow out of it.

No. Not by all. By those who aren’t listening and don’t like what they hear as it means their private company isn’t going to be sought after any more.

@Needspaceforlego
I just wanted to say that the 20% total sen figure has been pretty stable - little bit up and down but within that realm. Its an education term. Even the warnock report in the 70s suggested 1 in 5 children would need sen support.

Obviously as legislation changes things get measured differently. There used to be school action and school action plus that werent particularly tracked - the focus was more on statements and special school numbers.

The figure thats really shifted is statements and ehcps sat at around 2% to 3% for a very long time. There has been an increase in these to 5.7% and they are expecting this to rise a little more.

I think the obvious change here, from working in education, is mainstream funding has got worse. Things we used to be able to fund from the mainschool budget are not possible without an ehcp now. In addition some support services like salt and ot can only be accessed with an ehcp now, wheras before we could refer direct.

I agree with this. I was seen as lazy and less inteligent than my peers. Im neither I am dyslexic.

Most children with autism dont qualify for mobility cars its s huge spectrum
My son does qualify under SMI
Rules but he has severe and complex needs.

It’s all so watered down now it’s essentially meaningless.

Worked in a reception class last year on supply. One child, very obviously autistic. Five others with EHCPs. There were 8 other parents who wanted their child on our local NHS neurodiverse pathway to “get the ball rolling for a diagnosis/EHCP” as in their opinion, their child needed one. That’s a total of 14 which is pretty much 50 percent of the class? Nah I’m not having that. That’s just the other half of “normal”.

Like I said, one child was very, very obviously autistic.