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'm also going to throw in a bit of jealousy. It's very difficult to see someone discussing autism in terms of marriage and careers or friends and masking when those things will never be on the cards for your children. While I appreciate and understand that things like masking and it's impact can be incredibly difficult I also can see that some parents would love to have that difficulty instead of the battles they fight. (Not meant to belittle, just trying to explain)

@nmss words like this really sting when you hear them in the context of your 9yo who has expressed a desire to not exist any more, repeatedly, for 4 months. A child who can no longer leave the house in any context - not for school, not for outings. A child who has begged and begged for her difficulties, or herself, to disappear. A child who faces a vastly increased life-long risk of suicide and self harm. And then you hear someone say they're jealous of this very real scenario, just because they have no direct experience of it. I don't doubt how hard your child's autism is for you and would support you in an instant. Meanwhile, I don't think you have any real concept of the true impact of masking, despite claiming that you 'understand it can be incredibly difficult'. That's a total understatement in our experience. It is desperate, and hopeless, and utterly soul destroying and has been played on repeat for 4 years while she has languished on a waiting list. This is the true cost of masking, not a bit of mild inconvenience.

Your experience of your child’s assessment is not universal though. People are not saying the child faked ADOS - they are saying they never did it. Not all children do ADOS as part of their assessment. And we are also discussing ADHD here.

I get that. I'm sorry things are hard and I do see profoundly autistic children and adults being missed from the conversation. I do think splitting out the diagnosis would be helpful as otherwise no one ends up with support.

I do get the jealousy part too, not on the same scale as you - my child is more and more becoming obviously set apart from children their own age and I can see their future and it's not the same as others. It's distressing to see autistic children being left to wither in a system not built from them and it's getting worse as the propaganda machine is turning on them, I'm already drowning in lack of support, to think it could get worse for my family is heartbreaking.

I honestly think if children's mental health was invested in more and educationally we actually make it accessible, perhaps high functioning children wouldn't need diagnosis as much as they do. I don't know, I'm not an expert but we can't go on the way we are.

That is not autism though. That is mental
ill health. Autism might be behind it but you need to get treatment for their severe anxiety/depression/mental health condition. Don’t let CAMHS fob you off or say it is just their autism.

I think it's often the case that people with impaired function can find roles where those functions are less important and therefore don't feel that they have an impaired life compared to the ordinary struggles of NT people.

You really can't understand what i'm trying to explain?

It seems that you think your and your childs experience is as bad as it can get. It isn't. It is incredibly hard but yes there are people out there who wil be jealous of the prospect of a condition which can be improved. Mh difficulties can be helped, your child can make improvements. That is a prospect that some parents will be jealous of.

Am I saying this doesn't happen? No, it may well do. Is it the lived experience of many parents battling for their child to be seen? I've had to fight everyone to even get taking seriously - I've repeatedly begged the GP, school, social services for support, even when my child went into a meltdown and grabbed a knife and said they would stab themselves, no one would even call me back! No one. I had to send them to a private therapist because I was told CAMHM waiting list was 3 years long. This cost me £200 a session.

It honestly makes me laugh how easy everyone makes it sound. If you knew how desperate myself and others have had to fight to be taken seriously when your child at the age of 7 said they wanted to die because they didn't know why they felt the way they did. I'm happy for people that they will never experience that because it's truly awful.

I think the poster is also frustrated, I wouldn't take it personally. Parents are in fight or flight trying to navigate a system that is letting all our children down with no light at the end of the tunnel.

My ds has adhd and asd. In both cases they described him as "just over the diagnosis line".
He was diagnosed in early teens but tbh I'd suspected from about age 3, and looking back there were earlier signs.
He's doing well, to most people looks "normal", but the diagnosis helped him and us to understand him better. He doesn't need much extra help, but most people wouldn't see the home support and the stress that came with it. He has been much happier since getting the diagnosis because of that.
As I said to him when he got the diagnosis, it means we know that some things are harder for him and work strategies to deal and help him.

I wonder though when people are talking about overdiagnosis, they're actually meaning over self-diagnosis. I know three families ( adult children) who in the last two years have declared they're all NT, but aren't planning on getting a diagnosis, and expect everything to revolve round that. People who have always appeared to meet up in groups, enjoy themselves, chat, say that they want to do it again, are now saying they'll only meet up if it's in a place they choose, arriving with headphones on and refusing to talk to anyone, making rude personal remarks, tipping a plate of ( paid for but not by them) of food onto the floor because it was generic not heinz ketchup, expecting meet ups to be shortened for everyone, taking over a kids' bouncy castle despite a notice of not for over 12s at a fair... all behaviours I have seen from these people which apparently can't be challenged "because we're NT and this is the authentic us".
Any suggestion they're upsetting others who have been diagnosed NT is responded with that they themselves can't help their behaviour so others have to put up with it.
And they seem thoroughly miserable too so it's not bringing them any pleasure.

I think this behaviour makes people much more sceptical about diagnosis ( had a mutual friend query ds' for example) because they hear the people say "we're all NT", so assume they've all been diagnosed in the 6 months since they last met up, and as far as they can see it's being used as an excuse to behave like this, when previously they hadn't.

Mental health difficulties don't stand much chance of improvement when camhs reject referrals for support because the child is awaiting neurodevelopmental assessment. Did you even realise that this is happening? So kids can be waiting for 5 years to access mental health support, purely because they're on a waiting list for neurodevelopmental assessment.

And for the record I'm fully supportive of differentiating your child's experience from mine. I would definitely consider a state that cannot alter as 'profound'. I'm questioning this persistent narrative that masking is a mild inconvenience or, worse, just doesn't exist.

Ive just went through this with me 12 year old DD and based on my experience and my own real life ecperience i think the over diagnoses of ND is wild.

12 YO DD with zero history of MH, ND traits or any sort of issues, very happy, confident girl.

One day we were called into her secondary school as it had been reported ( and proven) she was self harming, GP and cahms involced with an emergancy app 3 days later.

Within 10 mins of her initial cahms assesment and zero history they "floated" the idea of autism. I asked on what basis and they said it was just a suggestion.
They then reffered her to a SAS clinic and for that first appointment they had no history or info from the first app so we repeated what we knew so far and again they suggested perhaps a neurodiverse assesment.

I said whilst i was happy to look into that route i would like to know on what basis they would refer her and they said she "sounds reactive"

We had 2 further apps at that clinic, in the end they had no idea what to do with her, she refused to engage and they discharged. In their discharge letter to us they stated " mum and DD refused neurodiverse assesment". This was absolutely not true but what i found laughable and said to them is they pushed this agenda yet couldnt supply me with one shred of evidence on WHY they felt like this was the correct route.

In the midst of all of this myself and my husband strictly cut her phone use to 1 hour screen time a day, deleted her tiktok ( no other socal meda anyways) reviewed her whatsap conversations, put clearer boundares in place and her behaviour has hugely improved ( self harming stopped the day we found out)

Its one of the first thing every single health professional led with even though they had no idea who my daughter was or any past bhaviours.

And lastly im in a group of 7 school friends so 8 of us in total, every single one of us has been told at some point by a teacher or GP that one of our children is ND, of that 4 of the group have had their child diagnsed privately.

If you read my earlier posts you will see that I was saying that mh difficulties should be better diagnosed and that diagnosis overshadowing occurs. I had an argument with another poster who was of the opinion that this doesn't happen. I completely agree with you. I think it's a scandal in the making.

I don't think masing is a mild inconvenience, i have never written that. I've used it as an expample of something that needs addressing/ supporting in some people with autism but there are some people with autism who aren't able to do this.

I think mh probkems do need a completely different diagnosis (see earlier posts) and people with autism need mh addressingand diagnosing not just havig their needs put down to their autism and left.

A state that cannot alter is not ‘profound’; I do not have profound vision problems despite my short-sightedness being permanent. Even without my glasses it would be disabling but still not profound.

Wow. This isn't my experience at all, nor that of millions of people. Where abouts in the country are you? I might move.

I'm well aware of that. But many parents keep having their referrals for mh support rejected on the basis that their child is awaiting neurodevelopmental assessment. This represents a significant safeguarding gap within the current system that few people are actually aware of unless they have to try to navigate it. Even now my dd has a diagnosis of autism and associated anxiety, she is still no closer to getting the mh support she currently needs. I know the system well, i am very able to advocate strongly on her behalf, including engaging with parliamentarians. I understand the psychology behind it all, I've exhausted the parent led strategies with limited progress. Seriously, what does it take?!

Seriously, what does it take?!

money for private assessment, medication and therapy

Scotland.

Timeline was 3 days from refferal to Camhs emergancy app, then one month for SAS clinic.

All useless - do not reccomend 😅

@Whatafustercluck one of my earlier posts on this thread.

You can’t separate MH difficulties from autism like that. Often the former directly result from the latter. In my son’s case his autistic thinking means he is much more susceptible to OCD and it’s not possible to think of them separately.

He has recently been refused mental health services ‘because he is autistic’ and told to look for help from autism services (who don’t offer the MH help he needs). It is soul-destroying.

They are separate things though. Being more prone to mental health issues does not make them the same. Your son’s experience shows exactly why they should be separated. Of course therapy should be adjusted to take account of his autism, just like it should be to take account of age.

They are separate things though. Being more prone to mental health issues does not make them the same. Your son’s experience shows exactly why they should be separated.

No, I disagree, brains cannot be separated out like that. Just because we call one collection of symptoms or traits autism, and another OCD, doesn’t mean the conditions can be neatly put in boxes like that.

Not just my opinion btw, the psychologists and psychiatrists we have attended have all emphasised that they cannot be thought of as separate conditions.

Of course therapy should be adjusted to take account of his autism, just like it should be to take account of age.

Yes, that’s what they all say, ‘adjusted’ therapy should be provided…but it’ll have to be by someone else as they don’t have the training themselves 😕

The MH difficulties ND people
struggle with are very much intertwined with their ND in the same way others argue learning disability is intertwined with ND.

Yes, but they need recognition and treatment rather than just being left as happens to many with autism. See the earlier posters experience.

People with autism shouldn't be left to suffer with their mh needs because they have autism. Recognising how they present so eg has autism but also self harms or has autism but suffers with ocd or has autism and ED(b) etc can only be of benefit. It means services can see what provision is required and hopefully research can happen and better support developed. It also stops services from saying it is just part of their autism diagnosis and should get support via that which in reality means no support/ help.

Not everyone with autism has the same co occurring conditions, being able to use language to discuss them helps everyone. There is no issue when it comes to hypermobility or dyspraxia etc but there is still stigma with mh. There shouldn't be, it helps nobody.

Such sessions don’t work for all with what would have previously been described as high-functioning autism either. DS3 has what would have been described as high-functioning autism. Note, not Asperger Syndrome because, although his IQ is above 70, he had a speech delay as a young child (still has a delay and significantly disordered language). He may not have what some are now describing as profound autism because he doesn’t have a co-morbid learning disability, but he has complex needs as per correspondence from every professional, and there are many, he sees. Reports/letters describe him as being profoundly disabled. He will never be independent and needs support with all ADL. He has EOTIS with 2:1 support at all because his needs are so complex it is inappropriate for provision to be made in a school. He has social care support. SEN sessions don’t work for him. There’s no short breaks provision that can meet his needs here.

I also have a DS who doesn’t have ASD or ADHD but has diagnoses that meet the wider definition of ND. He has even more complex needs than DS3, despite not having a learning disability. To the point he is eligible for continue care funding and has a large care package. He displays challenging behaviour and self injurious behaviour. It isn’t behavioural. Not one professional involved has ever said it is. It is because of his disability. SEN session, or any sessions, don’t work for him either.

There does seem to be some actual overdiagnosis.

when my eldest started reception 9 years ago there were kids who stood out as different and they have all gone on much later to get diagnosed. What makes less sense is the kids who at no point have had any issues related to asd who have then got diagnosed. Those are thr completely standard average kids. Some have dyslexia so seem to have spiraled after the dyslexia diagnosis.

Generally i would prioritise the younger adults as some of them were referred ages ago but never reached top of paeds list.

NHS arent great at diagnosing anything so why would ND be any different?

Personally i think a more evidence approach to both asd and adhd would be better.
So school reports that say x struggles to work in a team. Y scoring low on concentration. Logs of issues with clubs.
I had a spreadsheet of issues from nursery age upwards. Every year. Adhd is crazily based on just teacher rating the students, our teacher ignored the issues we had said about and admitted they couldnt answer some questions.

I assume some of the increase in referrals is
People wanting RAP passes for theme parks
DLA
Exam adjustments
Some adjustments in classroom
The deterioration of general child behaviour and more relaxed parenting with other kids being impacted
Dyslexia isnt being diagnosed by schools
Increased academics pushed on 4 year olds
Increased intervention by parents in kids friendships

I mean all of these areas are things uk is getting wrong. Huge queues for rides. Exams are way too short even if you work fast. Why does a 4 year old need to write?
Kids are not making or maintaining friendships themselves. Parents are manipulating them. And even clubs like scouts they ensure the kids already has friends there so dont need to make new friends. 'oh is anyones kids doing xyz?' Moving to secondary the kids are put with at least one mate. Even the teachers- oh x is too close to y we must separate them. And teachers completely controlling seating plans!

Its not really a surprise seemimgly quiet kids are not enjoying school, they are just not complaining. They are being intentionally sat away from friends and with the louder kids.

Lets put a target on for kids being potty trained by 3 again which will help identify kids who do struggle.

I think kids comong into school so lacki g skills can only be nursery. My eldest they spent time doing phonics etc but little time doing any learning about social things it was free play. My youngest the nursery did no learning (fine) but no real prep for school still socially about compromise etc.
I would say my eldest would nowadays have been ID as audhd at a good nursery.

Their friend was similar but was referred at reception but fobbed off by peaditrician but later diagnosed.

Im not convinced the dsm requirements of it starting from a young age are being adhered to nor the having impact on life.
i do think adults just wanting a diagnosis for the sake of it are perhaps a li ttle selfish - it costs 2k to the nhs for each would you pay that yourself? As several parents i know who are well off wont pay.