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.

It isn't going to improve anything because anything you get will be based on need not a more complicated diagnosis process that’s impossible to implement anyway.

Of course quality of parenting and quality of life, life style. At the same time the quality of the world has also changed and our habitats and daily routines aren't fit for humans.

ADHD and autism is 100% genetic as traits can be observed across several generations.

It's how the brain processes information and language, how one interacts with and focuses on external and internal stimuli and how the nervous system is affected by all this. It's how we relate to the world.

I also don't believe the is over diagnosis (oxymoron?) bit more diagnosis and maybe we should all think how we can change the world so that it is a more healthy and liveable experience.

Couldnt agree more. All my kids are ND, adopted kids and a birth child and none of them were spotted at school or at home. I was clueless never having experienced it, 15 to 20 years ago. School refused to acknowledge, esp at high school (when lightbulbs were coming on for me) due to masking and other issues taking priority like their desire (school) for academic improvement and behaviour (not bad just emotional). They are now all young adults and we have paid for assessment and diagnosis for all of them. They are happy to have answers and an understanding of why they are the way they are. Completely and utterly let down by the education system. However they are all happy and working. 2 of them have A levels and one has a degree. 1 unfortunately also has FASD but does work.

Neither will my DD. If she was to get pregnant and carry the child, it would be removed. I'm not even totally sure that it would be deemed safe for me to care for her child because she isn't terribly compliant with boundaries.

But DD1 is verbal, so by your definition she can't have profound autism. Fair enough. But her psychologist has said that she has so little insight into her condition that it's almost impossible to move her thinking, which means she can't be 'improved'.

So what would you do for DD1? Would you deny her services because she doesn't fit your criteria of profound autism, despite having very similar needs?

The servuces arent there for my sins autism and needs either. But he wont fit your criteria either.. as i said coming up with different boxes will only limit srrvuces further because it will he you have ticked this box but not that box. You seem to think the profound box will somehow gelp you access dervuces, sadly that it far feom the case, as someone who works with and supports many who do fit that criteria.

Thank you for this reply. My sons ehcp is specified, quantified and detailed. We have a few pap letters and tribunals under our belts like most send families now adays. Post 25 and possibly earlier depending on what yhe reforms hold that changes as i'm sure you're aware. Our la incidently have adult sc provision just for ld in addition to their autism team (maybe two people).

It's about more than support though, it's recognition, research, cures hopefully (really putting a hard hat on), genetic testing, comradery, association and belonging and much more.

Profound autism has been defined and this group can be grouped together. Grouping them together takes nothing from anything else but it does give to them. That others don't fit this group or a different defined group isn't upto me, maybe theyll come in the future? There was some research published with a number of defined groups recently.

I never said i did? Most parents of kids with send battle, you have no choice.

Thus illustrating the ridiculousness of the whole
premise. You can’t categorise autism or make it into groups.

Some of us aren’t just battling for education but to keep our children alive, out of hospital,out of inpatient, for adjusted treatment…..

Who knows what will be passed, but the proposed timetable for the current proposed reforms doesn’t include transitioning those who are currently teens so it is looking like their EHCPs will be able to continue until 25, or 26 in some circumstances if necessary.

"It's about more than support though, it's recognition, research, cures hopefully (really putting a hard hat on), genetic testing, comradery, association and belonging and much more."

How can you cure something that runs through every part of your being? What would our children even be like without their autism?? They wouldn't be who they are.

"comradery, association and belonging and much more."

You've lost me completely now. The whole nature of DD1's autism is that there is no comradery. There is no association. There is no belonging. She is desperate for all of that. She told the Ed Psych that she wanted to go to a really big college so she would have lots of friends. The reality is she can't cope with three people in a room.

Or is the comradery for the parents? You can get that without a separate diagnosis. We have a long running thread on the SN board and we are a really eclectic bunch. We don't always exactly understand the challenges each other face, because our children have different needs, but we understand that it is challenging, and we support each other through it.

The services arent there for my sons autism and needs either. But he wont fit your criteria either.. as i said coming up with different boxes will only limit services further because it will be you have ticked this box but not that box. You seem to think the profound box will somehow gelp you access dervuces, sadly that it far feom the case, as someone who works with and supports many who do fit that criteria.

A pp touched on autism being a larger group of different conditions grouped together. I think this is very likely. Research is needed to look at why autism occurs and if it can be stopped or cured or limited (i'm going to have to name change after this thread anyway) not everyone feels that way. Most people with kids like mine do as we're more likely to see it as a disability and there are people who see it as an identity. Research projects have been stopped because of claims of eugenics, there was one in the UK Ali G's brother was involved i think/ can't remember/ not checked. This is more likely to occur with a selerate dx.

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.

I'd like to be able to discuss him and say he has autism and people understand the level of care he requires/ how he presents. That doesn't happen now.

At the moment the only change or sub category really being fought for is profound autism, my son fits this and it will benefit him so yes i do want it.

As a general question, if services are based on need not dx why does it worry people that services may be gatekeeped because of profound autism, needs woukd stay the same.

I think you are incredibly naive @Nmss if you really think that a seperate diagnostic criteria will open up any more support, research, belonging etc. If anything it 'others' it separates even more than now.

And the diagnoses will be more gate keeping, getting thete, getting to the point of having one. Cut offfs, criteria etc. Eligibility. You are simply adding to the bureaucracy that already gatekeeps the support children get and it will be used to limit rather than provide more support.

“I will openly admit that i want services aimed at my son and people like him. That doesn't happen now.”

Same as my dc

“I'd like to be able to discuss him and say he has autism and people understand the level of care he requires/ how he presents. That doesn't happen now.”

Same as my dc

Sooooo…

You're not on your own in that, i've already discussed ATU's in earlier posts, where do you think my ds would end up without me and my husband?

These people can be grouped and defined?! That's the premise of the profound dx.

Don’t forget the money that will be spent on the NHS defending IQ levels that are disputed and that shut out kids just over the threshold or families that produce evidence further down the line to dispute IQ allocated.

It’s completely bonkers.

No they can’t and you can’t make everybody else a homogenous group. It’s nuts.

In regs to cure i know that is controversial but yes if i could give him a tablet or injection and remove his autism i would, i dont even need to think about that. If there was a cure why would i condem him to his current life. I love him, more than anything but I would remove the autism.

Is it that? I see autism as something to fight, something that has blighted my son, disabling him not something that is part of him. If it's genetic and there is a way to stop other families from going through this i'd hope they would have the option to test as we do with some other disabilities.

It saddens me that you would hope to sequester services for the 'deserving' ASD population @Nmss . By definition, or at least your definition, all people with profound autism should qualify for LD services. By definition, or at least your definition, all people who currently 'just' have an ASD dx but would qualify for a profound ASD dx, should qualify for LD services. So where is the benefit?

But we could have that? Why would you want to stop others having something that you yourself would like?

Because what is being suggested is unworkable, is not in a way increasing funding or access to services for anybody and is frankly ridiculous.

But how do you know what he would be like without the autism? Who he would be even?

Do I absolutely wish life was easier and more accessible for my child.. yes without s doubt. But I am not sure how I could separate out which bits of him are him.. all the diagnosis are part of him. Their interactions also are.. is it exhausting and terrifying knowing he wont be independent. That he cant access the world without a huge level of support and even then there is so much he cannot do.. yes. But I dont know how you would remove one bit.

We are doing genetic testing, well the NHS is but thats a battle because despite how complex he is the autism diagnosis overshadows everything else snd the NHS doesnt do genetic testing for autism. 🙄 the idea that a seperate diagnosis of profound autism will OPEN up research and support is incredibly naive.

Not for us it isn't. It's a real possibility. Profound autism is being more discussed and there are calls and lobbying for it. Why wouldn't i want something that benefits my son and me?

It seperates out a distinct set of people from an already large group of mixed presentations and needs. Seriously why does it upset you so much? It's taking a small percentage of people from a very large group.