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.

I don't think it's because it's 'fashionable' but it would be disingenuous to say that you don't move more quickly and easily through the system if you can fastrack it by paying for professionals and that there are intersecting factors (poverty, chaotic lives etc) for some families which means those things will be blamed first, before anything clinical is considered. We have paid for a number of assessments to bolster provision, and I know a key reason we won our tribunal for SLT was because I could pay several hundred pounds for a professional report to back us up. Even then the system is shit.

For example, this episode is fascinating.

Expert bod reckons schools are more rigid (yep) which highlights those children who naturally have differences in attention. But that’s always been a normal variation.

“are there advantages to brains that struggle with attention?”

“two ways to view - evolutionary advantage. Brain takes 30 years to fully develop.”

The discussion is very useful and important and centres the importance of diagnosis.

“there are large natural variations in attention”

talks about how to structure classroom to allow for various attention variations

https://www.bbc.co.uk/sounds/play/m002qrkx?partner=uk.co.bbc&origin=share-mobile

I think there needs to be a more distinguished diagnosis especially with autism. People who have mental health issues and autism should have their mh issues diagnosed and treated under that condition rather than under the autism umbrella. I write this because not everyone with autism has mh needs and autism itself isn't a mh condition. If a person has their mh needs diagnosed it would also help ccg's see what areas need an increase in capacity. Some people may want the mh needs dealing with as a priority, they may suspect autism but having mh help quicker could be more beneficial.

I also think it's about time that those with the traditional severe autism had a stand alone diagnosis as these individuals have little in common with those are able to mask until 30,40,50, 60 etc especially when they are diagnosed at two years old. It woulp support, resources and research to be better targeted including for those with a different set of needs who present differently.

I am really quite saddened by this notion that if you've managed to survive to adulthood with no diagnosis there is "no point" in pursuing a formal ND assessment. I see this view expressed so often on MN and I wonder, at what age do these posters think we all cease to matter?

At what age are we supposed to stop caring about ourselves or wanting to understand ourselves?

As soon as we turn 18? 30? 40?

"Well, you've coped this long". Why is "coping" the goal? How depressing that this where the bar is. I work with children and I don't want them to cope. I want them to thrive. I want them to belong. I want them to like themselves. Funnily enough, I want the same things for the adults in my life.

I was at school in the 90's and I was a child who "coped" in that I didn't cause anyone else a problem. I got good grades. I also started self-harming at the age of 10, had panic attacks, insomnia and went through periods of restricting my eating. I was miserable in school because the sensory environment was hell for me. I was more vulnerable to bullying, exploitation and sexual harassment because I couldn't read the social behavior of others. But because no one knew, I officially "coped", but I lived with a huge amount of shame because I didn't understand why It was only when my own daughter was diagnosed AuDHD that everything about my own childhood and adolescence started to make sense. Having this information about myself at the age of 40 didn't turn back time and change how difficult things were back then, but I'm kinder to myself and have been able to let go of a lot of shame I'd been carrying for years. No one will ever convince me that that's not important.

A few years ago I was on a course at which we were told that, because ASD often presents differently in women and girls, they are often misdiagnosed with BPD when they are actually autistic. One of the speakers reckoned that 80% of women with BPD diagnoses that she'd assessed were actually autistic.

This intrigued me, as I know a family where one child was diagnosed as having Asperger's at 12, her half-brother was diagnosed autistic at 20 and her other half-sibling almost certainly has some sort of ND thing going on but has never been assessed. Her sister was diagnosed with BPD in her late teens, but definitely shows many traits that (imo) would be consistent with ASD.

This already happens.

By time my two were diagonsed it was inattentive ADHD diagonsed - but DS as a young child especially was quiet shy but full of engery and impulsive reacted to certain foods.

That another issue people who think they know what lables mean.

I'm dyslexic and an avaid reader - if affects mainly spelling for me - I did well in exams - but people will insist that can't be true as dsylexics can't read - or they know someone with it and my presenattion must be the same as their mates.

What will bring down the rate of diagnosis is a society that accommodates and embeds support without needing a diagnosis. A school system that actually works for children, a work culture that isn't rigid and punitive, a maternal health system that doesn't send women home after a traumatic experience and leaves them to it.

Yes I struggled my whole life but didn’t know why.

Interestjy my dc have found out a lot earlier than me and none want children. I don’t think they’ll have any.

Another reason for early diagnosis so people can make informed choices. They need to be the ones making those choices though not society saying disabled people shouldn’t have children .

The problem is that the flip side is someone like me. I've spent my entire life being told that I'm probably autistic, by teachers, by other parents, by friends. If I actually went for diagnosis, I imagine I'd get it.

But it's never actually really hindered me badly. I got a 3rd in uni because I just couldn't cope over the last two years, but came out and got a good job and I doubt my life would have been much better if I'd got a better degree.

I know a good few people like me who've never really struggled with it, but got a diagnosis anyway because they wanted to define their "weirdness".

They don't need support, any more than I do. The problem is that autism covers such a wide range of people, that when you define all of them with the same condition, it becomes overwhelming to work out who needs support. We need to get better at identifying and supporting the people who need that help, like your daughter, while not invalidating the ones who pursued a diagnosis just to better understand who they are.

I'd suggest you read a better quality of newspaper.

If you or or family member are ND, it's on you to explore avenues IF you want to.

I'm a mum of 2 ND kids, highly functioning, and I am ND myself. Because we function (seemingly) well, ive had all sorts of ignorant comments over the last few years.

It's really nobody's business and nor am I in it for the benefits.

You do you - that is all you can do.

I totally agree. Also often in the workplace you can only access reasonable adjustments on the back of a diagnosis. If women for example are crashing in their late 40s because menopause is making it harder for them to maintain the ways they have 'adapted', then of course they should be able to access diagnosis pathways later in life. And they're more able to access adjustments at work on the back of a formal diagnosis than they ever will due to menopause. It all intersects and has a real life impact. Just because you masked through your 20s doesn't mean you're set for life.

Not where I live. I know families who have been refused camhs support for mhbecause of the autism dignosis. Also, where autism is given as the diagnosis for mh needs such as depression, anxiety, self harm etc it may contribute but the mh needs themselves need to be addressed rather than beung put down to autism and written off.

As for a seperate diagnosis depending on severity this doesn't happen. Occassionally people get levels as in the US system and some people get 'severe' autism but the profound diagnosis as a stand alone has yet to be officially introduced even though it may be being widely used now.

I don't disagree with this, except that there is nothing wrong with having a diagnosis and it's actually been helpful for my family - apart from other people's ignorant remarks.

Absolutely agree with your post. X

Gosh, that’s so dismissive of all those who have had such relief from finally understanding all the overwhelming challenges they’ve experienced for so many years.
It may be helpful to aid your understanding to imagine, for the next year, every time you wish to express an opinion, have a voice in your head telling you you can’t. Every single time. It’s not the same as undiagnosed ND but could give you a taste of the trauma.

Well you dont actually have a diagnosis

But a diagnosis doesnt come with a package of support ,
The support that is available is already targeted to those with the greatest need
Often leaving others who would also benefit from support.with nothing.

My experience is slightly different, DD was referred for diagnosis at 5, the reception teacher called me in within the first few weeks, they watched her for the first term we filled in all the paperwork and then waited 3 years for a diagnosis even though it was clear to every professional she came into contact with she has ASD and a whole host of other conditions. It was incredibly difficult waiting that long when her behavior was so difficult, she is unable to mask so it all comes out all of the time.

There are a few other girls in her class who I can clearly see have traits of ASD, to a lesser extent than DD and the cracks are starting to show certainly with a couple of them.

Here in my opinion is the difficulty, DD will more than likely go to a specialist secondary, she has had an EHCP since year 1 and needs significant support. The other girls won't, they will go to mainstream secondary which seems to be set up to be a nightmare for these kids with no support available.

There needs to be a faster route for diagnosis, not through private companies but the NHS where they can be referred to other services if needed, there needs to be an overhaul of secondary education to give more support and there needs to be more understanding in general.

Of course none of this will happen

I was diagnosed in my 60s. I was having counselling to try and address some long-standing issues that had become exacerbated following a series of close bereavements, among other historic stuff, and the therapist recommended that I get assessed as she was convinced that I was autistic.

I got an NHS assessment in under a year and the psychiatrist confirmed my therapist's opinion and commented in his report that I masked very effectively and convincingly.

It made sense of so many things, eg episodes of stress/depression/anxiety that led to long spells of sick leave were probably autistic burnout, that it was actually a massive relief. If I'd known earlier, some things in my life would have been so much easier, especially at work where I might have been able to negotiate adjustments.

Not my experience at all and I’d have thought professionals would need to tread very carefully if doing this. If a child has suicidal idealisation, EDs and self harming it’s at huge risk. I’d love to see how professionals get away with not treating MH difficulties like this.

The levels are for support needs which can vary throughout life. My dc have had all levels of support needs and this will be for life. My dc would be described as having severe autism but they dont have a learning disability aside from adhd.

Of course, I don't mean we can eradicate any need for diagnosis and nor should we eradicate the entire principle of it. Just that if diagnosis is the pretty much the only way to access support, then people will seek diagnosis. With a supportive society in general, there will be people who feel they can manage with that. My daughter's school for example is supportive in many ways and at the moment we don't feel a diagnosis would be more helpful than the diagnostic process would be disruptive and we're fortunate in that. But with a girl entering puberty and high school, who still does struggle at and with aspects of school and life despite supportive measures, that could change. There's no way to tell how this will pan out throughout puberty and high school.

Are you my doctor who thought because I didn’t have a job (because I couldn’t focus on anything for more than a few seconds)
I had made it this far in life so why did I need to be diagnosed.

Because it took all my mental and physical strength to be able to have a house that was a mess but not to the extent that you couldn’t see the floor and to have a laundry basket that was full but not overflowing among other things.

Imagine going through life having to tell yourself to breathe and on top of that doing all the other things you are required to do whilst your brain is saying “Breathe in 2..3..4.. Breathe out 2….3….4..” Every waking moment.

Then you find out that there is a name for your issue and with medication and / or therapy you might be able to control the issue but given you have lived with it for your whole life you aren’t worth diagnosing to access this help

I was pretty hacked off at my GP and told her to refer me. GP told me it wouldn’t make a difference and I could join the waiting list that was so long I would be dead before I got a diagnosis.

8 weeks later I was leaving the NHS psychiatrists offices clutching my first prescription

I hate the term ‘neurodiversity’ mostly because it is completely misused rather than recognising there is no such thing as ‘neurotypical’ - that is merely a sort of average. Everyone is different in their thinking and this is impacted by environment (including nutrition, culture, education, trauma), age, development/genes and parasites (eg toxoplasmosis). The question really is not do differences in how the brain works exist? It is well known a newborn’s brain works different to a teenagers which in turn works differently to a mature adults. The question is to what extent should we be pathologising these differences rather than just recognising them? Where should the cut-off be? Learning disability is an IQ below 70 but someone with an IQ of 75 will still have many of the same struggles as someone with an IQ of 68.

@x2boys I’m perfectly aware most children with autism don’t qualify for Motability…!!
My child has severe physical disabilities and I have no idea whether she has autism.so I have different circumstances to the OP. And she does qualify for Motability which is why I’ve noticed what has happened in media commentary about that issue.

The point I was making - to the OP - is how frustrating it is across the board to have people pontificating on provisions and so on for children with ANY kind of disability. The current situation is that people refer to- in mainstream media - to over diagnosis of ASD or perhaps more typically ADHD, but then go on to refer to any/all SEND as being over diagnosed or under parented etc etc.

Im not disagreeing with you - I know you from many posts on disability issues and I think I always agree with you- nor am I disagreeing with the OP.

I was sympathising with the OP and adding the concerns that casual talk of over diagnosis or whatever other buzz term used by media/people commenting on children with additional needs actually flows into areas that. might not be as noticeable.

Like provision of physiotherapy- the Integrated Care Board in my area (I am currently challenging them on this and other matters) limits physiotherapy (land and aqua based) to specific groups of children, grouped by diagnosis rather than need. So children with cerebral palsy can receive therapy but children with more rare conditions don’t get the therapies they need, despite being physically affected in very, if not identical, ways.

I don’t want to sidetrack from the OP’s point - which if I understand it is that the language used around things like diagnosing ASD in mainstream media is harmful. And I agree.

TikTok or any other baloney of media sources are bad enough but when news sources and politicians start adapting the terminology it does get very concerning.. and, as the OP said.. draining.