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.

No, there has been a massive sea change in schools in the last twenty years though. Funny that.

They can cope because it's the parents who see the fallout and it is the parents who are so often gaslit and disbelieved. The default position is "parenting failure, fine at school". And then an EP comes and does an assessment and invariably provides evidence that they're actually not fine in school. Except by then, many have become a problem in another way - attendance drops.

I agree. I have two girls diagnosed at the ages of 12 and 13. I had my suspicions sonce they were very young, especially with DD2 but they didn't fit some of the "typical" patterns such as late talker.

Both managed ok at school until the age of about 9 or 10 when the social expectations became too much. DC1 it is more "obvious" there is some ND but DC2 I still get people who don't believe she is autistic. One of her friend's Mum even told her she wasn't autistic! However, she is very high-masking. Nobody else sees the huge after-school meltdownsgh a recruitment , the debilitating OCD symptoms (mostly related to bedtime rituals), the time at home devoted to special interests. My girls' special interests have always been socially acceptable - cuddly toys, music dance, rather than those more readily connected with autism. My DD's (NHS - not that it should make a difference) diagnosis report spoke about her high masking and the poor effect on mental health.

Because my girls don't cause any disruption at school it has been so much harder to get support for them, although they both developed severe school-related anxiety which is so common in autistic teens. One of them can't attend at all any more. I am so worried about the "autism-sceptic" narrative affecting them as they try to negotiate finding a job etc. I can't see how my eldest in particular will ever get a job although she is willing and capable. I just don't know how she will ever get through any recruitment process without support and adjustments.

The loud disruptive other kids are often the problem for quiet anxious girls. In a school full of quiet anxious girls, they'd be absolutely fine.

Curriculum change is needed ASAP.

This is just my opinion but I think it’s just because we’re in a period of great change in regards to how we view different neurotypes. We’re steadily increasing our understanding of Autism and ADHD meaning more people are getting diagnosed but equally we’re so early on in our understanding of how trauma and technology access at key developmental points can impact our neurotype. We are getting better in our understanding of genetic impact though.

Equally we’re haven’t nailed how to best support people who may even a decade ago have not been diagnosed, but in a way that the country can afford. Obviously how/where the government spends their cash is a whole other thread but it’s always taken away from children and the vulnerable first.

Again just my opinion but I think we’ll look back at this era and be amazed at how little we knew about autism and adhd - I was read an expert likening our understanding of the brain now to back when people treated physical conditions with leeches and I agree with that analogy.

So I do think we’re in the middle of a massive pendulum swing whereby due to increased understanding more people are getting (correctly) diagnosed but also we are building a society that maybe exacerbates the presentation of it in people who could otherwise have coped so to somebody on the outside looking in it would certainly seem as though everyone and their granny has it now.

I also think puberty and perimenopause completely fuck up any masking skills that women spend decades building hence the uptick of women getting diagnosed in their 40s and 50s!

I’ve started a thread of my own about whether to get my 7 year old a referral for autism or adhd (or both). I’ve known for YEARS there is something about him, but many of his behaviours were normal for a very sensitive 3/4/5 year old. Now he’s old it’s more obvious and he hasn’t outgrown some behaviours whereas his friends have, and on my thread there were a few comments from parents saying they felt the same and didn’t go for diagnosis but wish they did as it all fell apart once their kids went to secondary school, and they wished they had gone for diagnosis sooner. So that’s what my husband and I will be doing although we will likely go private due to waiting lists.
I don’t want to give my son a label, I want to know how to best support him as he gets older. I want the school to be able to support him as he gets older. If it comes back he’s a very sensitive anxious prone child, but no condition then so be it. I just want him to live his best life, but I need to know how his brain is working to help him do that.

Do you not realise many autistic women and girls don’t show signs of struggling until it’s too late .The signs are often there but knowledge and ignorance is huge.

There is no high functioning, autism needs to have a significant impact on life to get a diagnosis

If you don’t feel a diagnosis would be helpful and are so dismissive of its impact to the extent you think you can read it away I very much doubt you’d meet the threshold for diagnosis.

@DeftGoldHedgehog

I don’t think school is the problem. There was one child out of 30 who was struggling horrifically with the environment. A lot of children on the “pathway” initiated by parents were actually thriving in school. Happy. Regulated. One child clearly had attachment issues which is no doubt going to be diagnosed as ADHD (see the Coventry study for similarities in presentation).

Their behaviour was at home. Poor boundaries and permissive parenting in lots of those cases. Ahh, but the child is masking. Masking absolutely IS a thing but that’s also now a term that’s being abused.

Big P is going to be absolutely thriving that’s for sure when half the world is medicated. Perhaps it’s easier and more socially acceptable to take stimulants and not anti depressants? The stigma lives on.

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

Not all. Go looking for the alternative arguments. And research papers.

Her key point is that research on children with LD and severe types of autism has all but stopped.

Sime of the current ideas and theories, such as masking, do not hold up to rigorous scientific scrutiny.

Sure, people are doing phds on it. But not using empirical evidence.

The discussion needs to be had.

@tackytriceratops

Hard agree.

To add, now I’m older, I’m 95% sure I have ADHD, but have coped and masked for years. I think my mother does, my sister and my niece (my niece is actually going through a referral now), my nieces son is probably autistic but very high functioning.
Im hitting peri and it’s coming undone for me now, but my son is my focus at the moment, I’ll worry about me another time.

Years of under diagnosis in women and girls and the impact that causes speaks for itself. We have years of data and research.

The misogyny is unbelievable. Now women and girls are finally being recognised and being heard some don’t like the impact it’s having on resources.

So are you suggesting that huge numbers of parents have been hopeless for generations and that schools mitigated their gross inadequacies until recent times?

I do struggle with this view though. At reception and all through primary our child wasn't obviously autistic to the teachers. (Quiet, shy anxious highly compliant- huge meltdowns after school every day though etc). Teachers thought we were just over anxious parents - had seen it all before etc. Now our child has had a complete mental health breakdown due to finding it so hard to cope in school for years. No-one goes back to thise primary school teachers and says actually we were right, our child was autistic - and the teachers just asssume their view is correct.

I realise this does not address the question, but gently, kindly, this really is age discrimination defined.
Read your own words back to yourself when you get to that age. Terrible assumption and undervaluing fellow humans who are no different from others.

Loud disruptive boys were also an issue for my DS - senstive to sounds.

TBH I think smaller schools quiter spaces would benefit a lot of wider pupils.

DC secondary when eldest started was odd - first two years stayed in same classroom 50% of tiem teachers moved - they kept movement to minimum and groups on playgrounds and corridors as small as possible. They got the exam results way up and attendance- I assume with other steps as well.

Then that all got stripped out with new head - or succesion of heads while they got a new one - and exam results and attendance dropped like a stone. They've never recovered. It gets blamed on social econmic make up of area - which TBH has impoved over time.

I don't think my eldest would have coped at all in school at all - changes stared end of y9 and Y10 covid hit and they were already struggling - they struggled when went back but hung in there. The youngest least affected by any underlying differences barely managed to get through the school in one peice.

I am a teacher of 20 plus years as well as the parent of autistic DC. School absolutely has changed to the detriment of ND kids. The curriculum expectations in primary school are ridiculous with even very young children bejng expected to sit, listen and retain huge amounts of "facts" for long periods.

Secondary schools (DH is a secondary school teacher) have the same curriculum pressures but many have also adopted popular "hardline" inflexible behaviour practices which are terrifying for those already struggling with the school environment. Add in recruitment pressures which means an increase in cover staff who don't know the kids' needs, or even worse cover sessions where multiple kids are grouped together to work in silence in the hall, and budget constraints that mean a lack of pastoral staff or support. It's a perfect storm for most ND kids.

I wonder whether routine assessments will become the norm eventually?

When I was a child, I don’t remember any children wearing glasses but then yearly routine appointments came in and visual impairments were recognised. - I’m not for a second saying ND can be fixed.

If children were identified earlier then there’s a possibility that education could change to accommodate their needs. Ultimately, they probably won’t get any additional support but at least that child won’t go through their life wondering why they feel different.

@Frazzlesforever

I work in primary and secondary. There’s always going to be that child that gets missed and is quiet/flies under the radar/non disruptive. But you now lump that genuine kid who IS masking, amongst the other kids who aren’t masking but just have incredibly poor boundaries at home/permissive parenting.

Then you end up with the current mess. The “market” is now SO saturated, the kids who actually suffer are drowned out in all of the noise and then you end up with the “god what a load of shit it all is” attitude.

Absolutely inevitable we find ourselves here as a society. It is an absolute disgrace that funding for severe learning disabilities has now hit the floor.

Have you read The Age of Diagnosis OP? I found that quite interesting (she was on Amol Rajan's podcast recently for a potted version). She talks about under diagnosis in certain groups (girls, BAME people) existing alongside increasing diagnosis (she actually talks more about cancer screening than ND, despite the press), and that it's important to ask what the negatives of a diagnosis might be as well. For example, if you have a high IQ and low support needs and you think you might like to move to Australia one day (you couldn't currently get residency with an ASD dx), maybe it might be better not to seek a diagnosis.

DD is autistic. It was obvious from babyhood. She has a high IQ but social communication challenges and restrictive repetitive behaviours. It is disabling for her. Less than 5 minutes with her and it's obvious. She may not live independently. She is at a mainstream school with support and doing well (in her own way). But one of the challenges is that in order for parents to access the right support in school and elsewhere, you have to convince both the LA and school to spend resources on your child. To do that, you need some independent verification of the difficulty your child has, and they won't take parents' (and let's face it, usually mothers, hurrah misogyny) word for it. So you need a professional to put a word on your child's difficulties. So even though DD is very different from an autistic child with an intellectual disability and/or highly disruptive behaviour, and different again from someone who gets late diagnosed having had a career and relationships they all get the same diagnosis.

I'd argue that's profoundly unhelpful in getting children's needs met. But we don't have a system that meets any of those children's needs. I think it's scarcity of support that's driving an increase in diagnosis (note not incidence).

If we had more flexible support and help available in schools and in primary care, you wouldn't need to leap through expensive hoops. And the fact that it's better off, well equipped parents who can do those hoops also means the limited resources don't get to the children who may need them more (I'm not arguing for this by the way! We need a sea change in systems and resourcing).

TBH I think smaller schools quiter spaces would benefit a lot of wider pupils.

My DC's school couldn't allow my DC consistent access to a quiet, safe place because they couldn't staff it. Not having this access meant they they became unable to attend at all.

That was an interesting read. Thanks for posting it. Her comments about autistic girls and young women being vulnerable to the control of others was insightful.

Overall, I think the propensity is for under diagnosis and that the structure of our society is the problem for young ND people.

Increasing demands at school. Loss of art, music and drama due to cutbacks. Work intensification driven by technology. Loss of green space including school playing fields. Online trends telling kids to be hypersexualised or hyper masculine. Addictive social media creating permanent spaces for endless bullying and shaming. This terrible propensity to film every little interaction. Climate change messaging. Constant news stories of violence at home and abroad. Absolute information overload about a world we are powerless to control. It is too much and exhausting.

It is no wonder that young autistic children and teens shut down.

The fact of over diagnosing does actually have an impact on genuine cases because the amount of people waiting for diagnosis has sky rocketed, meaning very long waiting lists for assessment. And many of those on the list won’t have autism or ADHD, they’re children/people who aren’t good at coping with life.

I think the system is already being abused as people can just get a Right to Choose assessment on request - there is no screening. There needs to be more rigour really but the GPs don’t have time. Too many RTC providers suggest a ADHD assessment after they have given an Autism diagnosis and vice versa - so double costs for the NHS. No scruples or morals it seems to me. Too much resource is spent on those who don’t really need it - not leaving enough for those who do.
As you can get a RTC assessment on request already (acknowledging there has been a pause recently) , there would be little difference really if Autism and ADHD were self identifying. Benefits and EHCPs should be based on actual needs anyway and not a diagnosis.

There is some support available, and also diagnosis helps to understand yourself and what may work to be able to negotiate life. But lots of people think they are autistic because they have some autistic traits, but to get and autism diagnosis you have to meet the criteria which is more than just a few traits, and also to have been significantly impacted, including being impacted in childhood.