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.

couldn’t agree more. The interview was excellent- and yes I find her work uncomfortable but honest.

I think I started to make a u turn on all this over the last couple of years as colleagues sought and got adhd diagnosis. Nothing in particular changed other than they suddenly started using social media vernacular. They do not resemble my adhd (inattentive) neice at all. Who relies on meds to access university. (I know it’s all differently variable.) They don’t seem to be able to access meds. So what was the point?

When world renowned successful autism researcher Tony Attwood proclaims that he fits the autistic profile but is “unaffected,” what are we “diagnosing” and why?

I honestly don't know. I've had so many conversations about this on so many levels with many professionals.

I think there's been a perfect storm of:

oversaturating all consuming technology,
lack of willingness to let children be "bored", so they're overstimulated
changes in parenting (looking at you "gentle parenting"),
change in diet,
rise of individualism,
lack of respect for others,
population movement (extended families/villages no longer raise the child),
acceptablity in society of what would have been unacceptable before (it should only be children with medical/additional needs who start school in nappies),
parents both needing to work full time, so less energy at the end of the day/weekends for their child.

Among other things...

The NHS picks which providers to use and it’s not double because the main research is done by the first diagnoses ie they use a lot of the data from that.

Our local private provider is pretty much £3k for autism and adhd whichever you go through first. It’s out of the pockets for most.

You need to get through screening to qualify for NHS Right to Choose.

The NHS taskforce has highlighted low diagnosis rates and the need for increased NHS diagnosis provision.

Of course you are right.
It's causing widespread resentment, anger and upset.

Apparantly, parents are also NEVER to blame for any sort of dysregulation or dysfunction in their child. That is why it is so emotive.

My DC were quiet and well behaved and we put in a lot of support at home all so they'd cope in school and then get told you've masked their issues when they crop up - ie it's your fault.

Or school puts them in situations they can't cope with ignore kids and parents telling kids are increasingly distressed as "they" don't see it till kid explodes then half time they try and blame it on kid with poor behavior or parents even if not there. Even if they admit a problem they soon revert to gas lighting of no issues.

Having said that do think nephews issue are being made worse by parenting - seperated parents - there's lots of excusing citing a diagnosis not made and not even on lists for yet - many years off - and TBH some of it's just a kid testing a boundaries - and endless excuses from everyone is making a hard situation much worse long term.

AdHD varies. Massively. All my children and I have NHS diagnoses and vary hugely in presentation. It varies even more if you have autism in the mix too. 2 of us have meds, 2 don’t because we too scared.

TA was reflecting on traits, not his qualifying for diagnosis,either way he has regular access to some of the most experienced autism experts in the world so probably has more support than most.

ADHD is only a disability of you are unable to find a job and a role in society which suits your traits. There are many people, like me, with ADHD who would not want to be described as disabled. In fact I would be extremely annoyed if I heard anyone describe me as disabled by ADHD.

Source please?

I’m not sure training ND kids to put up and shut up in school, to mask and swallow the huge amount of difficulties they carry all day which society and I did to my children is helpful. The MH difficulties this causes have been massive and probably caused permanent damage. I wish I’d taught my dc to not mask and to react more.

Thanks 😊
You've answered the biggest question, what has actually changed, BUDGETS!

And I've no doubt that is a bigger driver in getting diagnosis.

You've also sent me wondering if the 20% hasn't changed, but diagnosis has increased, is that partly driven by parents looking to get extra time in exams or other accommodations. Which in turn will drive up the school exam results?

Interesting thoughts, less stigma too, school suspected dyslexia, I didn't want to know, how bloody embarrassing to be different. I eventually went for diagnosis in my 30s.

https://explore-education-statistics.service.gov.uk/find-statistics/special-educational-needs-in-england/2024-25

what support is it you think these people are getting? Support is based on needs not diagnosis.

Primary teacher here of over 20 years and SENDCO. Parent of nd teen with early years trauma. Encouraging my kid to attend school is painful EVERY day of the week, year in, year out.

In schools (age 4-16 for most) we currently have a Chinese/American model of fact driven, data crunchers with a focus on a couple of key subjects; lots of sitting down - bad for everyone's health, overwhelming demands - often too much, even for kids who have good processing speed and language/communication skills.
I did not want to diagnose my kid for fun - it's a painful process. I found it helpful having others hearing our experiences and it has helped us understand everyone in the family a little better.

I also find it upsetting and draining, OP. I wish I had more energy to expand on that, but as it is I just wanted to express my agreement and support

The way the schools work now is a portion of the issue. They breed perfectionism while preaching about resilience and mindset - and are the antithesis of the latter.

I don’t doubt for one minute that I would have been a school refuser.

No, but some ND difficulties can be mitigated by good parenting.

In many ways this is similar to back pain in the 70’s and 80’s. That was used by literally millions of people to avoid work. There were clearly a significant number of genuine cases but these got lost in the masses of questionable claims which diluted the support resources available to treat the genuine cases.

As has been commented on here, you rarely if ever hear about children who are just simply poorly behaved. There has to be a reason given that doesn’t implicate the parents.

This results in crazy numbers claiming their children have one syndrome or another. The numbers are simply absurd especially when measured against literally every other developed country. This of course results in the genuine cases finding their required support being hopelessly diluted as resources are wasted on many who simply need better parenting.

We need to promote personal responsibility and resilience far more than we currently do. That will help ensure the genuine cases are more readily identified and resources used in a far more efficient manner.

Oh yes budgets - we were told a stat last year that the actual budget numbers for a specific area of specialist help within our setting hadn’t changed in 20 years, but the children needing to access it was now double what it was.

I am in my sixties and have a home and family and I had an OK job (now retired). But being diagnosed with autism (recently) completely changed my life, I can understand myself much better now, I know how to cope with my feelings, I feel for the first time I am living fully and am happy most of the time, and I have made a great friendship with another autistic person which is the first time in my life I have felt fully understood and accepted by another person. So I dont agree that it is not worth being diagnosed in later life. I dont think I am a big drain on resources, I got diagnosed and went on a short course with other newly diagnosed adults and now I feel fine to manage everything myself. Also, before my diagnosis, I was constantly being referred to mental health services (because they wrongly thought my problem was anxiety and depression), including one stay as an inpatient, so that really was a waste of NHS services!

And some can’t.

Also “Good parenting” whatever that is 100 x harder with a ND child.

https://www.tes.com/magazine/analysis/general/why-uta-frith-wrong-about-girls-and-autism

All the more reason for parenting classes then, surely?

The sheer volume of children being diagnosed or waiting for an assessment suggests something is very wrong.
People on here and elsewhere diagnosing other peoples children who have never met based on things someone has written a sentence or two about.
Who is going to pay for all the services people want I am not quite sure.
Is this happening in every country ? I very much doubt it.
Problems do exist for some children. Some. Not most.

It's hard to know what to do for best with no input from professionals and no crytal ball but my older to did get to Uni - and have both found fields that suit them and are full of ND people and their worlds have expanded.

We seem to have avoided mental health diffciulties and they seem happy. Anxiety is there but I have that and I think it's part of the conditions as much as anything and unlike me they are medicated with mild dose of anti anxiety meds and it's not stopping them doing things.

So I got them through a difficult school system mostly intact with grades good enough to open doors they wanted. It should have been much easier and would have been with some minor adjustments which I did fight for and often didn't get but there you are. Honestly it's been bloody infuriating at times and it's taken a huge toll on us as parents.

Nephews already been excluded at primary - and doesn't spend full day in school is falling further behind every week. They won't put on list till older and then it will be years before he's diagonsed. Hard to see how that's good for him long term especially as parents can't homeschool or make up missed schooling for him.

And what is good parenting with a ND child?

I parented how many who have zero experience of ND like to think is the correct way. It was not the right way. I should have pushed resilience, ignoring need and fitting in a lot less, validated and listened to needs more.

I strongly suspect those who listen to the needs of ND more have better long term outcomes for their children. Pushing square pegs into round holes has been catastrophic for my dc and nothing good has come out of it.