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.

If extra money was not given to parents of a child diagnosed the rate of those waiting to be diagnosed would drop.
Services required paid directly via DWP to those providing the service too.
Sadly, for some they do need the services. And I get cross for those who do need it when people who don’t claim they do. It puts the funding for those who need it at real risk.

I agree with you OP, every word you have said. For women especially, they often adapt throughout life due to these experiences at school and it looks like they're managing fine but it all comes crashing down when they have a baby or hit menopause. They spend their entire lives in a state of mental exhaustion and people don't think those women and girls are worthy of support. Only now it's becoming clear that many undiagnosed and therefore unsupported girls are hitting that crisis point younger and still not getting the right support - it often, any. It's still being misdiagnosed or misinterpreted.

Nd is under diagnosed in the country and we have a backlog of older people, women and girls to get through that very much deserve their diagnosis the same as everybody else.

An online pointer to ND does not even get you through screening without need.

Services are always given according to need. A diagnosis does not get you services you don’t need.

Just as an aside I think some people are in denial about the benefits packages that are being handed out. I have a an autistic family member (teenager) on highest rate of PIP. Even her father has no idea how she is entitled to this as the only criteria she actually meets is the inability to communicate with some people eg non verbal. Aside from this she is fully equipped to deal with everyday day tasks, cooking, washing etc. We can only assume her mother is playing the system.

You’re talking complete rubbish .

Diagnoses do not get you extra money or services, only need ( which needs to be severe) does.

There is definitely no screening for RTC Assessments where I am - the GPs just ask which provider people want to go on the list for. I think there should be proper screening and I wish this was being done. I have been raising this as an issue as part of my job role.
The choice of RTC providers is any provider with an NHS contract somewhere in England. Some are good but I have seen some assessments that are poor and have been puzzled as to how an NHS a contract was awarded at all. I do not have confidence that all RTC assessments I have viewed have reached a sound conclusion as there has been insufficient consideration of wider factors and an over reliance on parental recall and perspective. Too many practitioners in the RTC providers have been trained in assessment but do not really have sufficient experience of actual relevant clinical work. I fear some of the providers have needed to accelerate their recruiting to meet demand and have cut corners.

This study indicates that the big rise in diagnoses isn’t just the result of increased awareness, it’s a study that looks at a lot of other studies and found that the differences between people with milder ASD and the rest of the population are getting smaller, and soon there will be no difference:

https://neurosciencenews.com/autism-diagnosis-blurry-14761/

This increases the risk of ASD being trivialised, exactly as depression has been by the huge boom in people attributing every bit of unhappiness to a mental-health problem. I have suffered from severe depression for over 30 years, and over the past 15 years or so, the push to ‘decrease stigma’ seems to have made depression almost trendy. Unfortunately, this has just reinforced the view of many people that mental illness is just an ‘excuse’ or weakness. The media has not helped by saying meaningless things like ‘X% of people have had symptoms of depression over the past month’. I have symptoms of inflammatory bowel disease at some point most months. This does not mean I have IBD.

I can't quote all those folk I want to reply to but...

• you do have to be screened to be referred under right to choose (I know because I've used it)

• you don't have to be 'obviously autistic' to be autistic

• it's not a label, it's a diagnosis. You ever commented on someone 'chasing a diabetes label'? It's minimising and dismissive.

• There weren't all these ND kids around in my day - well there were, you just didn't know about them. If they've been diagnosed as an adult, then they were ND as a kid.

• there is indeed little support available, especially as an adult woman with low support needs. But I now understand how my brain works and that actually, that anxiety I have been medicated for, had therapy for, and failed miserably to banish for years, is actually due to my neurodivergent brain and not something I can just cure. I am kinder on myself and advocate for myself because now I can say "I'm autistic and struggle with x y and z" rather than saying nothing because of the belief that I'm just being awkward and should stay quiet and try and (fail to) manage.

• I sought assessment for one of my kids because they were struggling with feeling like the 'odd one out' but they were unable to articulate why. Turns out they are autistic and they now understand this. I am hopeful this means they too will be kinder to themselves rather than getting to 40 and finding out.

Oh that old chestnut. 🙄Having filled in some of these forms I can assure you getting anything isn’t easy and involves a lot of evidence.

Also there will be a lot of children/people who don't meet the criteria for a full diagnosis but DO still have traits and indicators. And other still have traits that overlap with other diagnoses that parents don't necessarily know about. Parent can't make these distinctions or make the diagnosis - that's why they're turning to the professionals. That's what they're there for.

What? I was entitled to money on my child's diagnosis? Must have missed that bit - what am I getting and who from?

I wish I was.
Disability Living Allowance, Extra Universal Credit, Carers allowance.
Access to an allowance to pay for services for your child.
Sorry.

Agree 100% with overdiagnosis. There are hardly any children, these days, where the mum doesn't diagnose their child as having ADHD/autism or some other 'disorder' due to 'behavioural issues' and absolutely no introspection on whether or not these issues are caused by lack of experience in parenting, environmental etc.

It seems parents want the child to have the issue, have it medicated and then they can blame every single incidence of everything they don't understand on a 'disorder'.

The child, meanwhile, lives with the self imposed stigma of having something wrong with them, needing 'managed' with medication and forever having low attainment levels because of selfish, lazy, neurotic adults perpetuated by pharma.

If I seem angry about it, it's because I am. Just last week, my SIL with questionable parenting skills (favours her daughter over her son and has her own issues) suggested my nephew may have autism because he doesn't like to be bossed around and argues about rules. She then proceeds to send me a TikTok reel which seemingly confirmed her diagnosis. I had to talk her down without saying I thought she was the one with the issues so she didn't run out and try to get my nephew medicated so she didn't have to put any effort into parenting.

Further to that, adults are having themselves diagnosed because they think being conflict avoidant, or having lack of attention span, immediately qualifies them for a 'delayed diagnosis' instead of considering their own screen time, phone time and lack of social skills as a result of these things and how we're all so coddled and PC in society that we can hardly say anything without being accused of being confrontational. So, if someone says something that is misconstrued or even normal but novel to an individual, that person assumes they're 'neurodivergent' instead of just in need of social skills via exposure.

I'm exasperated. It is so draining because there really are individuals with legitimate neuro conditions and suddenly they can't get the help they need because the system is overloaded.

Autism.org confirms what I'm saying. There is literally less than 10% of people on earth with true autism and it goes on to discuss overdiagnosis etc.

Edited because I misunderstood your post, initially, but hopefully this will explain why people are fed up with the 'narrative' and it's not a go at you, so please don't take it that way, but hopefully it makes you feel a little better and not singled out when you understand where this is all coming from.

Yes which you have to have significant need and be able to prove for.

Just waving an autism diagnosis will get you zilch.

I have wondered if there are any introverted ADHD children ? Or are they all extroverts.

There's another thread just now where a kid's father is refusing to accept the school reporting issues and supporting his daughter so I don't know that in this case 'even her father' automatically has greater knowledge than PIP assessors.

Of course there are introverted children with ADHD.

I don’t think many get money -it’s more likely support at school

Perhaps @youalright could have phrased it better - but I have some sympathy for their viewpoint.

To me, it looks like almost every parent posting on here talks about their kid having autism, or ADHD, or being on the spectrum somehow.

Whereas when I was a kid, there may have been one or two children in each class with ' special needs ' - but that was it.

Obviously our diagnosis techniques have become more sophisticated, and greater awareness of neurodivergence has led to more children being diagnosed. That's clearly a good thing.

But NHS resources are finite, unless we fundamentally overhaul the way it's funded.

I take your point that a diagnosis in itself doesn't cost resources, only treatment does.

But I do worry - as do others - that if we try and treat every child that is diagnosed as being ND that the system will collapse completely.

Yes of course a non verbal person definitely does not really need any support if they can do cooking and washing! And as for only 10% of people on earth having "true autism", isnt that rather a lot?

I ask as they don’t seem to be very often described as such.

You don’t get treatment for autism only need.

I suspect my DH is somewhere on a spectrum, a loner with no friends with almost 0 communication skills, who hates small talk and works from home, but very successful in his nerdy technology field. He accepts he has some traits but refuses diagnosis.
Then there is my older DC, a hyperactive pre-teen. But because he is super-intelligent and in a way gifted with digital memory, he masks so well and is incredibly successful academically, the school has never had any concerns. We are not pursuing diagnosis, because he simply doesn't need it at the moment and he would start worrying too much if we started telling him that something is wrong.
And then there is my anxious 5-year old who needs reassurance in form of hugs that the school thinks is abnormal (prob. cultural difference as it is expected here for small kids to be rather restrained emotionally and very independent and brave), and although he learnt to read and write fine, he often refuses to do much formal work at the desk at school other than art & craft and feels best just playing with lego and watch Peppa-pig. School suggested he is autistic and are supporting him, but because of cultural differences (where I come from kids start school at 7 and formal work is not there at 5), I kind of try the wait and see approach to see whether he'd mature in a year or so.

I am now in my home country in EU where only 6% of kids are officially SEN vs. 20% in the UK and it's just because 1. school starts later and kids play freely more in early years, there is no academic pressure until later and kids are allowed to be kids 2. child's ND traits have to be really clear for the school to flag it .e.g. simply being hyperactive or quiet or throwing an occasional tantrum is accepted as normal child development/character difference 3. FAMILY VALUES culturally figures in authority (parents, teachers) must be respected (+ religious/conservative upbringing), so there is less misbehaviour 4. school day is shorter (4-5 hours a day) until age 12, so there is more time for kids to wind down BUT lots of academic pressure, regular tests, homework, etc. and parents closely monitor the progress and make sure the kid works hard 5. SOCIAL MEDIA - kids do use it but they are not as addicted as kids in the UK mainly due to cultural/parenting differences. Kids here have responsibilities at home, they regularly have to help out parents in housework/gardening/cooking, there is a huge hiking/biking culture and most of teens spend lots of active time outside, families are extended and close-knit so many weekends are spent at family parties or at family hikes in the woods or helping out at the farm or in the church. And from what I've seen in England at least kids/teenagers are not expected to do anything at home/for the family and they boast about it, 'if I don't want to do something, I don't do it, and they cannot force me'. They're rather rot in their beds with TikTok. Lastly, adults here don't spend so much time on SM themselves as other activities are considered more fun, people don't write long text-messages/emails as face-to-face contact is preferred.
Result - we don't have this explosion in MH issues in teenagers and definitely no diagnosis pursuing culture for now... but the state itself is not MH benefit-generous and parenting/culture is quite different.

Totally disagree with OP. Diagnosis encourages reliance on others, often strangers to solve all their difficulties. It reduces self reliance and resilience. It builds a sense of self pity and entitlement.

Many gen x people would nowadays have a diagnosis if they'd been assessed as kids under the current criteria. Indeed, a few are seeking diagnosis in their 50s and 60s. Most of these people have managed to adapt to their lives.

It often feels nowadays that people expect an easy life and of you struggle to get on with yours, it's due to some disorder. Life is not easy. It's hard work often on a daily basis. Most people mask one way or the other. That's just life.

Ultimately sympathy is indeed growing thin. I know I have adhd, everyone around me know that. So what! I've spent tears adapting and even making the most of it. It's been tough at times, it's hold me back at others, but it is who I am. My kids are definitely showing signs of autism. It's makes some social aspects hard for them. That's fine, they are learning and adapting. Do we all feel anxious? Yes, very much so. Like the vast majority of people because life is anxiety triggering!

That is ignorance and why women and girls have historically flown under the radar. We know better now but some don’t seem to like it.