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 thats the case then why does it matter if my son has profound autism and yours has autism? As a pp wrote if everything is based on need why diagnose at all?

Making system more complex isn’t going secure you anything. Any support or care will continue to be allocated according to need.

So why does it matter then? If its needs based and provision is based on that everyone would still have their needs met and there wouldn't be gatekeeping. I'd be able to say profound autism and people understand that i dont mean sheldon or the good doctor. Win win.

There wouldnt be added complexity to the system, it'd be one box or the other.

Because an autism diagnosis and I mean autism not autism with a comorbidity of a learning disability gives answers and can inform care. The learning disability is separate.

You can’t put autism into boxes.

it’s not profound autism but autism with a comorbidity of a learning disability. I’m not sure you can grade learning disabilities accurately either.

My DSs have comprehensive watertight EHCPs, but sadly, too many EHCPs are poor and even when SALT (or other SEP) is reasonably required, it isn’t always detailed, specified and quantified in F.

For many, despite being required, it isn’t in the EHCP at all or it is in G rather than F or it is in F but is far too vague and woolly to be enforceable. It shouldn’t be that way and all parents should be supported to enforce their DC’s rights, but sadly, too many DC are reliant (either short term whilst parents appeal then enforce the provision or long term if parents don’t appeal for whatever reason) on just receiving whatever the school can/will provide rather than having all the SEP they require detailed, specified and quantified in F.

So people with ld don't deserve answers or informed care? Autism dx with ld dx can do that too.

You'd still have autism dxd, only people with ld would get a profound autism dx. There would be no change for those without ld to how it is now, other than some of the people with ld would be removed from the pool of people with autism?

Yes they can about their learning disability which is separate to autism.

It's more than just autism and ld.

"The Lancet Commission defines profound autism as . It is an administrative term meant to address intensive, lifelong support needs for individuals often overlooked within the broader spectrum. "

Yes not a medical or meaningful accurate term in any way thus completely unworkable in the diagnosis process.

But not their autism?

As discussed earlier with mh, where do the autism needs stop and the ld needs start exactly? Shouldn't their autism inform care too? Both should be in my view with both needs being met, same as mh.

Sorry it didnt paste properly, my fault rushing....

he Lancet Commission defines profound autism as a sub-category of autism for individuals aged 8+ needing 24-hour care, often due to an IQ under 50, minimal/no verbal communication, or both. It is an administrative term meant to address intensive, lifelong support needs for individuals often overlooked within the broader spectrum.

@Nmss am sure you know as well I do that many ehcps are NOT properly specific or quantified and so if systems can get away with no providing they will. Any vagueness etc and its a nightmare. And school can and do fight but there is only so much they can do.

Systems are needs based or supposedly are, but again am sure you know the fight, even with clearly identified needs.

It shouldn't take diagnosis to get support but it does often need good diagnostic reports to help. My child was punished for their tics before getting tourettes diagnosis. They had been under Neurology awaiting assessment a diagnosis of complex motor and verbal tics..my that wasnt enough.. again not how it should be. Yes I followed processes and complained.

You clearly have experience of the systems yet you think an extra diagnosis level will help? When the lived reality is often the opposite .

Autism whilst needed as a diagnosis is time and again used as a reason to deny support or even to not investigate other health heeds. We had 2 years of tics progressively getting worse and hospital saying "thats just autism". Until another professional happened to see him, urgent referal to Neurology who couldnt understand why he hadnt been seen... errr because your service said "go away its just autism".

On the one hand labels DO help. They absolutely allow my 18 and 23 yr olds to understand themselves and comorbid conditions they have. They have also stopped my 10 yr old accessing support he needs. Yet perversely offers some level of protection re tourettes.

Your child has a LD as well? Which is recognised? I dont think profound autism is as clear cut as you think it is and there are those within autism community whose children WOULD fit the criteria who also dont agree the diagnosis would help. I have read the lancet and studies. My own adhd absolutely makes me deep dive this stuff.

And I have read plenty on the alternative view point but I dont think it will help in the way you seem to think it will. I think the systems will use it against you, against anyone with an autism diagnosis tbh. It will be more gatekeeping, more hoops to jump through.

Yes their autism needs can be looked at too , same as everybody else’s but everybody’s is different ( no two autistic people are the
same)any support or care will still be allocated according to need. Those that miss out on care and support the most are often those with high needs whose autism isn’t so visible.

I know, i believe the current system is vastly unfair especially to families who can't navigate or understand the system or those without the funds to secure inde reports etc. I fear the changes will make it worse for all though.

It infuriates me when professionals acknowledge wrong doing and don't try to correct it. There needs more accountibility throughout.

But the bit re IQ is separate to autism. It can be comorbid but is not just autism. Some can have a low IQ and be verbal. Some can have a higher IQ and be non verbal. It is so complex and varied. How many boxes do you create?

Have a diagnosis of autism and if needed seperate duagnosis alongside.. we have several. And some we cant even work out because they cant access the diagnostic process. Honestly I dont think this criteria is as simple as you think or would like it to be. And I dont think it will help in the way you believe.

Yep and meaningless. 24 hour care can mean anything, minimal communication has a huge spectrum, Intense lifelong support needs can mean anything …. And often due to an IQ under 50
doesn’t mean always the case. My dc could fit that profile. It’s meaningless and impossible to give a firm unchallengeable label.

Parents who can’t afford independent reports shouldn’t be put off appealing. Some will be eligible for legal aid, or rather legal help for appeals to SENDIST, which can fund independent assessments if necessary. If not, there are charities who can help. The most well known one is Parents in Need but when supporting others I have helped others to use various other ones too. Failing all that, parents can ask SENDIST to direct the LA seek more/updated/detailed, specified and quantified advice - not guaranteed to work but worth a shot.

That is rather vague wording though, isn’t it? Perhaps they have been taking lessons from LAs. ‘Often due to’ means sometimes it won’t be due to either. So those who require 24/7 life-long care who don’t have an IQ <50 &/or aren’t non-verbal/minimally verbal could still meet the criteria. DS3 would fit that category.

someone with autism and learning disability does NOT have two separate conditions. They have a single condition part of the presentation of which has been given the diagnostic label autism, and part learning disability but it is a single condition.

Nope not everyone with autism has a learning disability. My 23yr old doesnt. I would say its debatable with my 18yr old and no one has a clue with my 10yr old as no one can assess him. But autism does not always mean LD.

I think in the autism community there is usually although i havent seen much of it on this thread a curtailing of language. Eg you can't say high/ low functioning, severe, aspergers, mh is part of autism but ld isn't, if someone is severe then they have ld even if not dxd.

Families like mine have bore a lot of this as we haven't been able to articulate our loved ones needs without a fair bit of backlash. Autism self id doesn't help in this regard.

The dx has chsnged so much that our kids are no longer really represented and when you try to enter the convo many times you get told if you're nt you can't be there. So who does that leave to represent those who can't advocate for themselves?

I believe we need to describe all autism better, have more conversations about the differences and similarities if there are, we should be able to describe what autism looks like without someone being offended because they see it differently. Autism to me has got to a place that it represents so many that it represents nobody. We shouldn't shy away from using descriptors out of fear that somebody will be upset because they're not the same.

With the verbal, i took it to mean the salt def ie communicative so could be typing, pecs, aac... but minimally communicative.

Sorry i quoted incorrectly i meant that for @ChasingMoreSleep i need sleep

I believe it's deliberatly vague so that those who can't access iq tests could still be included.

Non-verbal/ mv to allow for those who can use a few words/ pecs/ symbols. Low functional language is what i believe ive read previously

If they don’t have learning disability then they don’t have the same condition as someone who does. A child only has one brain and if the way that brain operates presents as ticking boxes for learning disability and autism then their brain is operating under both those presentations in everything it does, they cannot be separated.