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.

Minimally verbal and minimally communicative are two very, very different things. If The Lancet meant the latter, surely they would have said that. And the point about ‘often due to’ still applies because if it is only ‘often due to’ that means sometimes it isn’t.

They also use the phrase ‘access to an adult’ so yet more vague wording.

That's just word salad. DD1 meets that definition. She is never going to be able to live independently. She will need lifelong support. She has a very limited functional sense of danger. But earlier, you said it was about whether someone is verbal or not.

I'm not sure that is true. DD1 has a brain malformation (which nobody can agree the name of), ASD, learning disabilities, 'challenging behaviour', historical eating disorder, anxiety and depression, a mood disorder, etc. All are listed separately when she has a clinic letter.

Nobody knows whether her brain malformation caused her other difficulties or is incidental. Nobody knows whether her ASD is a result of the brain malformation, or whether her LDs are, or whether the LD goes hand in hand with the ASD or is separate. They think she has a genetic syndrome but they can't find/identify that, either.

I agree. And although my DS3 has a different presentation to your DD1, he also meets that criteria.

Using the wording in that post someone meets the criteria for profound autism if they need 24/7 care for life.

This is ‘often due to’ an IQ <50 &/or because they are non-verbal or minimally verbal. But ‘often due to’ isn’t ‘always’ which means that sometimes it isn’t due to that.

Therefore, using the wording in that post, if someone, like my DS3, needs 24/7 care for life they can still meet the criteria for profound autism even if they don’t have an IQ <50 &/or are non-verbal/minimally verbal.

I think DD1's psychologist got it right, tbh. While everyone was debating the level of LD DD1 has and whether her ASD impacted her more than her LD, etc., she simply said "It's all fairly meaningless, isn't it? It's very obvious that due to her LD and ASD, regardless of how 'bad' they are and which affects her more, she's going to need the lifelong support of the LD team. So shall we move on?"

Yep my youngest has issues with his brain plumbing which is not typical.. no one quite knows what it means. Absence seizures, autustic, pda, tourettes, adhd, profound sensory processing issues. No one understands his cognitive profile... all bits diagnosed separately.. complex yes. You cant single bits out and say this causes X, this causes Y. Some big support needs and behavioural issues. Can be amazingly verbsl.. can also be non verbal.

3 of my other children are diagnosed autistic adhd. Before criteria widened for one. But their needs all present very differently.

So you are saying the doctors agree with me - they think she has a genetic syndrome.

This isn't an ehcp and it is an overview. In slt verbal can mean communicative. The full report gives more detail. Im sure you're abke to google it rather than relying on my links/ quotes.

I don't think I've seen the post you made where you suggested that DD1 had a genetic syndrome, and I don't know whether the doctors agree with you. I suspect they formed their views from her clinical features.

That aside, it is widely accepted that there is likely to be a de novo genetic syndrome that has caused her brain malformation and the other subtle physical differences in her body. When she was born I wasn't allowed to go home until a senior registrar examined her because the midwife thought she looked like she had Down Syndrome.

@Nmss I didn’t say it was an EHCP. I was drawing a comparison with the vague wording. I haven’t just relied on your quotes/google.

A good SALT report would cover verbal ability and wider communication rather than lump all under verbal ability. Sadly, too many reports aren’t good.

I was being sarcastic in saying that it isn't an ehcp. I accept that os bad form on a thread like this.

I just Googled the Lancet article. They think that this new profound autism dx could apply to anywhere between 18% and 48% of people with ASD dx. That's still really massive.

I'm still confused how it will give better services to these people. It's pretty damned obvious that minimally verbal or non verbal individuals with 24 hour care needs are vulnerable. How will giving them a label change that?

How is it different from saying 'My DS is autistic and needs constant care and supervision'? (Which, incidentally, is what I have to say for verbal DD1).

Actually I work with both adults and young people and see diagnosis listed on specialist letters as:

1. Autism or often written ASD.

1. Severe learning disability (or mild or moderate LD).

1. There may be another diagnosis here such as ADHD.

Many specialists list in bullet points!

Yes my youngest ds letters from hospital are like this with a list of diagnosis.

I mean, think of it in practice:

"My DS has profound autism" "Oh I see... What's that?" "Well it means he's minimally verbal and has 24 hour care needs." "Ah, got it. Must be tough."

"My DD doesn't have profound autism." "Oh I see.... what does she have?" "Well she has autism and needs 24 hour care but she can talk." "Ah got it. Must be tough."

And you wouldn’t know from those exchanges if either or both use a wheelchair/SN buggy, are toilet trained, have significant sensory difficulties, eat orally, need a specialist bed, need a specialist car seat/harness… so it wouldn’t really help in understanding someone’s precise presentation.

Understanding via a thorough assessment—it's not just about labels.

This article is pretty good at describing why the dx is required for support and research:-
https://childmind.org/article/what-is-profound-autism/

I did read an article that applied the parameters to cdc research and it was about 25% of those with a dx would be classed as having profound autism.

This is quite good too:-

https://www.profoundautism.org/research/profound-autism-facts/

No, not precise but better than it currently is.

But it still wouldn’t allow someone to say their DC had profound autism and enable others to automatically know what their presentation was. There would still be a huge variation.

How?

DD1 has 24 hour support needs, can't be left at home alone, needs supervision with all ADLs and active support with most. Uses a wheelchair with power assist out of the house. Knives have to be locked away to avoid self-harm.

How would you describe her autism? Not profound but pretty limiting.

What if someone had profound autism but was really compliant and passive?

Can you see why it doesn't work?

My primary education, born in the 70s, was not largely restricted to two subjects. I was never tested, year in year out, in English and Maths. Have you ever seen the engagement of learners in early years education?- not much sitting around at all; children exploring art, books, climbing, shapes, maths puzzles, joining in with adults sharing games and moving on when the interest dips, counting freely, constructing, fixing, running, skipping, jumping, with very short sessions of sitting and learning this way.
SATs originated from America I think!? You are right that some of these issues stem from a Victorian model eg. cursive handwriting!

Absolutely agree with this about oestrogen affecting the brain and dopamine levels during perimenopause and menopause. I have first hand experience of this because of my movement disorder called tardive dyskinesia which is basically a bit like Tourette's and Parkinson's disease combined, and to.do with dopamine dysfunction (it was caused by a dopamine blocking drug prescribed off label for severe anxiety and insomnia after a head injury and post concussion syndrome ).

I remember after I'd just had my youngest daughter 6 years ago, how my movement disorder symptoms were dreadful and became much worse, as a result of falling oestrogen and dopamine levels. I'm fairly sure that I have undiagnosed ADHD too, and I am dreading it when I go through the menopause. I've got a horrible feeling that I might have a surge in my movement disorder symptoms and possibly a bit of ADHD too.

Read both and again they dont define a specific group the IQ part as well is very problematic as is the verbal and communication. There are many autustuc children who need 24 hr care, who cant complete basic daily living tasks, who have issues with safety who may not qualify via IQ as part of this or who may qualify via speech but not IQ. I honestly dont think this extra diagnosis WILL being supoort and research you think it it will it WILL be used to limit, to gatekeep as diagnosis already is and it will add more beurocracy and hoops for families to jump through.

Having come back to this thread, yet again it's become clear that the subject cannot be objectively discussed here on MN, as there's too much personal experience shared and used like they are facts.