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.

Exactly. DD1 is uniquely her. I would remove her struggle in a heartbeat but I can't imagine her without her uniquely funky view of the world. I can't imagine what it would be like if she could do all the things she can't do now. I can't imagine what her personality would be like.

So why does it matter to you? if services would be given to them now why would having them grouped matter to everyone else?

Ofcourse i want to secure services for my child, why wouldn't i?

I think the problem is that the media approach is focusing on the wrong aspects, typically trying to blame the individual, rather than face up to the consequences of society going in a direction that will see increasing numbers of people sidelined for having different thought maps and experiences of life.

Imagine life and each individual task within it like a maze. In the past people accepted that everyone would find their own way to the middle. Now there might be a quick way of doing that but along the way you might need to swim across a few streams, but what’s the problem with that, everyone can swim can’t they? Actually not, and in the past some might have chosen a different path because they can’t swim but a expert problem solvers so could negotiate paths with a lot of twists and turns, hates to unlock, bridges to build, some might be expert mountaineers so could easily negotiate a path with a few mountains in the way. Some people just might not feel any drive to get to the end prize, enjoying every nook and cranny of the maze, sometimes finding wonderful things along that path that no one else discovers.

All was going great for thousands of years. Then suddenly society decided to close down all routes apart from the quickest (and most economically productive) one, suddenly the expert non- swimming mountaineers were drowning crossing the rivers, people who got nothing from the end goal were being herded down the only tensing route, their lives devoid of satisfaction and meaning, if their overwhelming drive to explore showed even the slightest sign of rising to the surface they were medicated and/or humiliated into compliance despite the pain and burnout this caused.

This is what increased technology is doing it’s forcing people who would have been different but got by and even excelled previously into a meaningless existence. If you take a tiger out of their natural environment and stick it in a cage and invite it round for tea what do people think will happen??

Society, with its increasing rigidity, is the culprit here. The more rigid it becomes the fewer the number of people who are going to be able to cope.

At 50, life has always been difficult, I think those with ADHD are 5X more likely than someone without ADHD to die by suicide.

Those with very obvious symptoms like being non verbal have always
struggled, things haven’t really changed. It’s the ND people who have managed to operate (often at tremendous cost to themselves) through masking and doing life differently who are the ones now most greatly affected by the societal changes and what was once hidden has now become very obvious.

i also think that the amount of people who have both adhd and autism have fallen through the cracks of diagnosis until fairly recently.

ND isn’t being over diagnosed, we’re just seeing the effects of a system increasingly restrictive in its navigational options and reward mechanisms

I'd like to be able to discuss him and say he has autism and people understand…how he presents. That doesn't happen now.

That still won’t happen. As I said, there will still be a wide range of presentations. Profound autism wouldn’t tell you if someone is toilet trained, if they have significant sensory difficulties, if they can eat orally, if they have sleep difficulties, if they have a way of communicating (not talking about verbal ability), if they smear…

I will openly admit that i want services aimed at my son and people like him. That doesn't happen now as autism services cater to all with autism.

They don’t cater for all with autism. They don’t even cater to all without what some are describing as profound autism.

I actually agree with you in regard to a cure; if there was a cure I would take it - for DS2&3 and myself. DD2 wouldn’t want it. However, I don’t see how a cure would work in reality. It isn’t the same as something like cancer or diabetes. Also, a ‘cure’ doesn’t come without its own set of difficulties. To make a comparison DSs have an LLI which over the last few years has had some new medications that have been life changing (albeit not a ‘cure’) for some (sadly not all) but the improved physical health for some has brought other difficulties (physical and psychological) related to the condition to the fore. Some people have struggled psychologically because they are like a whole different person. I think similar would apply if you cured autism.

We have had genetic testing, including being part of the 100,000 genome project which for us didn’t show anything we didn’t already know from other genetic testing.

But why do you think it would give you more access to services and support @Nmss when the systems already gatekeep by diagnosis to a certain degree. I susoect you will find more servuces say NO we dont do profound autism. It wont magically open doors. The government, NHS, education system there is already rampant gate keeping of services all you are doing with a seperate diagnosis is adding to that bureaucracy and gate keeping and it will be another reason to deny support.

We see it regularly at complex needs school ie less salt, less OT because they are deemed somehow 'less' worthy if they have a lower IQ.. by the systems obviously not by those that care for and support them.

Honestly I get that you want recognition, community support, to feel less alone, for life to be easier for your child but the idea that a seperate diagnosis will do any of that is deluded, sorry if that seems rude. But I dont think it will help in the way you think it might.

There are many pushing back- for good reason.
It’s unworkable and impossible to implement, complicates an already complicated area and will waste what little money there is on issuing a label that will bring zero benefit to anybody. Services and support are allocated on need. That won’t change, in actual fact there will be less money for services as so much will need to be diverted to families wrangling over who makes the threshold for an impossible box. Also it’s debatable that IQ should be the only marker for severe autism.

It’s completely unworkable and not going to happen.

I think it raises questions about whether an autism diagnosis is relevant at all when we have three(?) posters arguing about how different but significant their DC presentations are. Too many very different high needs. You can see why EHCPs, DLA etc are not based on diagnosis but on ‘needs’. Perhaps it would be more useful to provide a full assessment of areas or strengths and difficulties rather than a diagnosis which says very little about how different people need support.

Maybe but it just sounds like like a lot of 'but I didn't say that'
'that's not what I said though is it'
And then the other person saying the same thing back

Research into the genetics of autism has been hindered due to calls of eugenics from the wider autism community. That does happen. Eg spectrum 10k

https://www.scientificamerican.com/article/high-profile-autism-genetics-project-paused-amid-backlash/

Part of the reason for profound autism being brought about is research due to the limited representation of people in this group.

https://www.ncsautism.org/blog//new-review-articleprofound-autism-an-imperative-diagnosis

In regs to my son, i don't care what he would be like. He'd have a real life, he may have friends, goto clubs, have a girlfriend, not require the kind of help most teenagers would squirm at with adl's, he ckuld dress himself, he may get drunk and try to hide it, stay out late, he may learn to drive, he might travel on his own n choose where to go, could have a career maybe he wouldn't, who knows what he would be or what he could do, i'd happily find out. I'd never condem him to his current life if i could remove his disability.

There are other genetic studies, we've taken part in two so far. The paed put us forward for them.

(I did find the thread subject interesting though at the beginning)

I know someone in the US where it has gone even further. Their insurance company won’t fund certain medical treatment required because their DC has a level 3 dx.

Good assessments and diagnostic reports cover relative strengths and weaknesses already. Sadly, too many, including many NHS reports, are poor.

"We see it regularly at complex needs school ie less salt, less OT because they are deemed somehow 'less' worthy if they have a lower IQ.. by the systems obviously not by those that care for and support them."

That's shocking, what systems exactly? Are you talking about kids with it in section f not getting provision because someone is discriminating against them on the basis of their IQ? Actually, it doesn't matter you're still talking about discrimination and the professionals involved aren't following hcpc values. This should be a serious concern. If you're a professional in a school that is doing this why aren't you whistleblowing or reporting?

You are being rude, putting sorry if that seems after the statement doesn't absolve it.

You've clearly not read around the subject or why it's required. I am not going to change my thoughts based on some random on the internet said they work in a school and all the lobbying and research is completely wrong because they say it's deluded.

You are welcome to your thoughts all you like in the same way i'm welcome to mine. At least i can own it when i am being rude.

You should read how profound autism not severe is defined.

I have to admit to not reading the details, I just got the jist of ‘my dc needs are different to yours’ over and over.

We're back to the question of what services you think should be available to your child that shouldn't also be available for my child, who is also very vulnerable despite being verbal?

Why does that mean they shouldn't be availabke for your child because i want them secured for mine? Having them secured for mine doesn't mean yours can't have them but it would guarentee them for mine. Why wouldn't I want that?

The children i support do get section F etc and believe me staff fight. I have seen the work our headteacher puts in to fight to ensure they do. But when it comes to criteria for access to assisted communication or different therapies etc some systems gave a criteria that if they feel there isnt the level of understanding necessary they wont give them a chance. In same way my own child is restricted from accessing some services because he doesnt have a diagnosed LD. The fact that no one has been able to even complete anyy cognitive assessment because of the complexity of his profile of needs is irrelevant... do I think thats wrong... absolutely.

This is what IS already happening within our systems currently which is why I wonder why you think a seperate duagnosis will help. Actually I think it will lead to more gatekeeping.. you cant have X because you dont fit the 'profound' criteria and Actually you arent profound enough. And it will also mean services say nope we dont do profound autism. As poster upthread said in America more re insurance issues.

And belive me when I saw this in mainstream I absolutely did report it, and I left. It wasnt a system i could work in. In complex needs setting support is more available, its still not perfect but good schools are fighting, good staff push and yes children get provision thats in section F. But the reality for many is their ehcp isnt as good as it should be. We got lucky and got a brilliant EP report on the LA, but many dont. It can be OT, SALT etc sadly those services are cut to the bone and a diagnosis of profound I suspect will be more of a hindrance than a help.

What you are asking for will not help this. It will increase bureaucracy and gate keeping that already exists. But you seem to not want to accept that?

Is fact and core subject focus that new? And how would you run lessons if people didn't sit down? I agree these are issues but I'd argue it dates back to Victorian times or earlier. Not just China & America.

Why is diagnosing autism a good thing but diagnosing profound autism a bad thing? If a diagnosis creates barriers and gateways then why diagnose anything?

Speech therapy is a section F provision as it educates or trains, there is case law to this effect. If aac is in section f that is what they should be getting, thats the law.

I think you're caught up on how it will impact others who won't get the dx and the systems you have to work in. Read the link i posted earlier in regards to the profound dx and why it's needed or read the lancet report or any number of other articles that discuss both sides of this (not the opp bias as it degeats the reason).

Is there any other disability that you wouldn't want to define because of extra bureaucracy? We don't as a general rule lump other disabilities into one group when we can distinguish them?

I get the impression that the real concern is the impact or reduction in possible services to others or the percieved minimising of their dx?

A close family member of my husband’s died suddenly and my husband had counselling. In the first session after speaking to him for 15 minutes , the counsellor told my husband she was sending him a questionnaire to do. He did it with me and at the end of it , the summary showed he probably had ADHD. Obviously we’d heard of it but we did know anyone who had it. Then we read ADHD symptoms and omg , he had more or less everyone of them. He’d got to the age of mid 50’s before realising that he had this. The diagnosis has made all the difference to him mentally. He knows now why he found life so difficult and others found it easier.

Why should yours have them secured anymore than anybody else’s if the need is the same?

Autism need isn’t lumped into one group any more than disability is. People get support and services allocated according to need with all disabilities and autism however they present.

Why would i secure anything for my child when there are always others that need it too? If i can ofcourse i will, the same way that my ds's ehcp is specified and quantified and he has pb's for therapy, other children need those things too and don't get them. That doesn't stop me fighting for mine.