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.

But that was my point. The change in dx would give a better idea of what is to be expected.

You said “having a diagnosis that I can say where the majority of people would understand whay that presentation means.” I was pointing out that even within profound autism there would still be a wide range of presentations then proceeded to give a few examples but there are others.

A separate diagnosis is not required and said article gives no actual reasons to. This myth it mentions that those without a learning disability in conjunction with autism think autism is a special power is bullshit. I don’t know anybody living with the disability that is autistic or has autistic children who thinks like that.

Any support and care is based on individual needs which will vary with every child so diagnosis definition is neither here not there .

I hate the superpower rhetoric.

But it wont really. And I dont think it will help in terms of support. What it will do is help further divide and alienate a community of marginalised people. And be likely used against them in terms of reducing support ie your child/young person doesnt tick X box or fit X criteria.

As much as its tedious to have to explain the comorbid conditions, the interactions and interplay and how they all impact he is never going to fit in a box.. with a neat label and a do Y to solve issues... so.

I can appreciate if you have a non verbal, high needs child you moght think it helps. But do you have the diagnosis of an IQ lower than 50? The safety element etc.. its all so much more complicated than profound or not. They ARE all autistic with other interplaying issues and differing support needs.

Yes i agree that tgere will be differences, i was pointing out that those differences wouldnt be as vast as the current dx. It would be an improvement on what we currently have.

Yes, he has all of that. Wiisc, social care reports etc.

For the majority of families like mine we have already been marginalised and already don't feel part of the community so to speak. The impact won't be felt by our families and we shouldn't be expected to have to nudge up and not have our loved ones needs met for the greater good.

There are numerous fbk groups if you'd like to look for views other than mine, the profound autism alliance and the council for severe autism (the last two being US based but do cover UK issues and reports). The Lancet article articulates the issues very well. It's free to sign up and read it.

I knew an awesome lad at DD1's special school. Completely non-verbal, but beautiful handwriting and the ability to write very strongly worded complaints about the school menu to the Head Teacher. We had other children who were 'non-communicative' but could turn the teacher's computer displays upside down or sideways and otherwise hack the system to do what they wanted.

@Nmss I'm confused about your position. A needs based approach is far better than a labels based approach. DD1 had very significant needs when she was very young (1:1 support from preschool age, extensive measures and modifications to keep her safe at home, HRC DLA). Her needs seemed to ease slightly between 9 and 12 - still very tricky but not much trickier than other kids at her special school. Then age 13 onwards everything went downhill. Hospitalised at 15, excluded from 2 colleges due to challenging behaviour (self-injurious) and a third admitted they couldn't meet need. EOTIS package failed because provision couldn't meet need. Now extensive reassessment under way, social care package started.

The thing is, she didn't even get an ASD dx until she was 15, and her ADHD assessment is likely to result in diagnosis in the next couple of months.

Nobody could say that her needs aren't extensive. I won't use the word profound, but she's 20 and requires 24/7 care if you count the fact that she can't leave the house unattended and can't be left alone at home. I guess if your definition relies on someone watching over the person 24/7, she doesn't reach that threshold, because once she's asleep we don't have to monitor her.

She's had SALT assessments that place her on the 0.1st centile for both expressive and receptive language, yet she's very verbal. It puts her at more risk than being non-verbal, IMO, because people think she understands them and think that they can rely on what she says, yet the reality is often very different.

DD1 is deemed very complex. She has a team of psychiatrist, psychologist, and nurse. She has been assessed as needing OT and SALT.

What I'm saying is that nobody, but nobody, would think DD1 isn't in need of extensive support, yet she didn't even have an ASD dx until 5 years ago. Simply because it didn't seem necessary to pin down the 'why' of her conditions - she had so many to choose from.

Her psychologist says it's impossible to separate her autism from her ADHD (currently traits, but soon to be dx), from her anxiety/depression, from her mood disorder, from her brain malformation, from her learning disabilities. It's impossible to separate her eating disorder impact from her school trauma, from her mood disorder.

It's impossible to define why she has such poor executive function. Is it her learning disability, her brain malformation, her ASD, her (likely) ADHD?

It's impossible to separate out her chronic pain and inability to walk distances from her mood. They don't know why her back muscles are so tight, or whether her scoliotic back is due to structural deformity or the muscles pulling her spine out of line.

DD1 will never live independently. Currently, it's thought that she wouldn't be able to cope even with group care. The psychologist thinks she's going to need her own flat/house with 24/7 care because she doesn't even cope with being part of a family.

I simply can't understand what benefit top trumps disability has.

You are absolutely not having to nudge up and your loved ones needs not being met are nothing to do with diagnoses at all because everybody else has differing needs as do those with a learning disability alongside autism and care is based on need which you are continuously choosing to ignore.

Oh and there is no “community”
either.

I wouldn’t be so sure those with profound autism wouldn’t be affected by services using it against them by saying your DC has profound autism so you can’t have X. I know someone in the US whose insurance company is using the fact their DC has level 3 ASD as a reason not to fund something.

@Lougle I love the letters of complaint.

You can keep ignoring the facts and pushing a Lancets article but it doesn’t change reality.

@Lougle I have supported several young people like this and they were the ones I worried about the most! So so vulnerable.

She's had SALT assessments that place her on the 0.1st centile for both expressive and receptive language, yet she's very verbal. It puts her at more risk than being non-verbal, IMO, because people think she understands them and think that they can rely on what she says, yet the reality is often very different.

I agree re needs based and all adding different seperate diagnosis label's does is actually provide people/systems/governments/education with reasons NOT to provide support. Its just another divide and conquer device. And its already working.

Its just a way of gatekeeping access to services. Ironically we have spent last 2 years battling for support re 'behaviours' and one of the reasons we cant access a team that does support is because "no diagnosis of learning difficulties ". The fact 3 EP's and various psychologists, paediatricians, and even neurologist stating brain differences.. and no one has even been able to assess his cognitive ability, but nope no diagnosed LD so door to possible support slammed shut.

All a seperate diagnosis is going to mean is more of this.

@Nmss the impact will be felt by you. The profound diagnosis will be used as a reason to limit access to some services in the way that it will be used to gatekeep others. That's the way these systems are designed.

@Lougle in an ideal world we would have both systems. Why can't people have their needs met and we have language that can describe peoples needs?

This isn't disability trumps, it's about having the needs and presentation of a distinct group of people met and recognised when at the moment they are often missed out and left behind.

Why does seperating this group off upset people? If they don't fall into that group why does it matter?

My son was dxd under the old descriptors so yes he has had to nudge up.

It cant be worse than it is now and being seen and recognised is an improvement.

They aren’t missed out or left behind at all, they have a shed load more care and support than others left for many years with zilch who then end up in hospitals and prisons with nothing or dead. I don’t begrudge any the support they get it’s not their fault if needs are more visible however there are many other complex children who actually are being missed out and left with nothing until dreadful things happen to them.

Totally agree with you - I had exactly the same experience with my child. Didn’t exhibit aggressive behaviour, just internalised everything and would burst into tears over lots of things, was completely overwhelmed and ended up not attending. Now left school with zero qualifications despite being very intelligent. We tried EVERYTHING (and I truly mean that) - parenting courses, anxiety courses, being super strict, physically manhandling them into school, threats, kindness, reward systems, saw GP, psychologist, psychiatrist -only at this point did they seem to think hmmm this doesn’t seem right and he was diagnosed with autism. It was such a relief to know that it was nothing we had done wrong, as well as knowing what we were dealing with so we could help in the best way possible.

I’ve also subsequently been diagnosed with autism myself and again, the relief of knowing what I’m dealing with now is immense. I went through severe depression and anxiety from CHILDHOOD which not only was I not helped with, people actually made it worse by treating me horrifically.

Neither of us are asking for financial handouts, just acceptance that we might act differently to the norm.

I don’t understand this over diagnosis narrative.

You are being seen and recognised if you are getting care. Children like my dc get nothing until it’s too late.

I know some late diagnosed (in their 40s) women who fully subscribe to the superpower bs.

How?

Care is allocated by need not what diagnosis other children get.

This may be removed, but sorry OP, to many of us these conditions do seem to be overdiagnosed, and yes there is clearly some correlation to gaining benefits/PIP/mobility cars, extra help etc, that some are seeing and wish to get the same. I do of course exclude genuine cases where families need substantial help, either financially or support-wise.

Really?! If that is the case then why do you care what happens to this group? Surely seperating them means it's easier for the others to highlight their needs?

If they are already getting all the support what do the others lose?

Yes, it's crazy isn't it? Nobody can agree the level of DD1's learning disability because the assessment that was done a couple of years ago was achieved by me coaxing her through, negotiating one task for the psychologist and then one minute with the rubix cube. Even then, her IQ was deemed 'not interpretable' because her processing speed is so profoundly slow, and her fine motor skills so poor that it skews the result.

Her Consultant Psychologist wants to redo the IQ test, but doesn't want me to coax her through. As a result, we haven't managed to do the assessment because she can't attend to it for long enough.

Her SALT assessment has taken 5 appointments because she can't cope with long sessions. Her ADHD assessment is likely to be 4 appointments for the same reason.

I don’t. I was late diagnosed in my 50s and have had a lot of contact with charities, support groups and NHS research. I’ve not met one,only women whose lives have been destroyed by ND.