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.

The diagnosis does include a 'and its not better explained by something else' element. They are supposed to consider attachment disorders etc. Thats what all the multidisciplinary stuff and parental inverviews and observing in several settings is meant to cover.
They can look similar but clinicians are supposed to look.

I was one of those non speaking kids. So were both my daughters. None of us have autism

Yes, that's why my DD1 only received her ASD diagnosis at 15, and is being assessed for ADHD at 20, because they needed to rule out that her behaviour and communication differences wasn't just because of her learning disabilities.

Okay? For some that is the case, some it is. My BIL didn't speak until four. He is obviously autistic but one of those old men who aren't diagnosed. However when you are in a nursery room and your child is one of the very few that don't it is obviously a big concern.

I think that’s unusual. There are three children diagnosed with autism at our local primary school of 100 pupils approx. It’s possible more will be diagnosed later of course, but extrapolating to 20 or 30% from those diagnosed or on the pathway in primary seems exceptionally high.
And whole classes are certainly not being diagnosed with adhd here.

It’s very hard to get a diagnosis for autism and adhd as highlighted by the recent NHS adhd taskforce and widespread concern.

Waiting lists for both and Ed psychs are years and private is ££££.

No it’s not necessarily more severe the earlier the diagnosis. My Dc’s care needs are very high and I have numerous NHS professionals stating how severe their ND is and impactful on life. All diagnosed in their teens. The fallout and cost to the nhs from ignorance in schools
as as to how presentation can vary is massive.

A nervous system in fight, flight or feeeze, is visibly very different to 'not wanting to' do something. Nd children exhibit fight, flight or freeze (my dd broke her car seat in half trying to escape - when she was just 6). 90% of school avoidance is the former, not the latter - based in total nervous system collapse (nd). If you've never seen or experienced it directly, I appreciate that it's very easy to jump to the conclusion that a child simply doesn't want to do something and can be coaxed out of it.

Also, as a pp has already picked up on, getting a diagnosis is not like going into your local shop and buying some sweets. It's the most difficult thing I have experienced in life, navigating the diagnostic pathway.

Oh I agree - it's more in response to folk who appear to think you just rock up at a clinic, say you're anxious in social situations and you get handed a diagnosis. I wonder how many of people who are of this view actually understand the diagnostic process - that's assuming you can jump through all the initial hoops and wait 3 odd years for an assessment.

This is so ignorant I am struggling with words to reply to this. Do you truly believe that these children would get a diagnosis for autism for social anxiety and screen addiction? Just because they look high functioning to you doesn't mean they are. You have no idea what their home life is like or what their struggles are. Do I believe that lumping all autistic individuals together is helpful? No I don't, I think profoundly autistic people are quite obviously going to require more support but that doesn't discount people who still need significant support due to their autism but appear high functioning.

With the increase in numbers of people being diagnosed and the vast differences in how, especially with autism people present, I can see the diagnosis becoming redundant. Many of the groups for those carers of people with profound autism already see this. The term 'profound' autism has been created in part because of this (see the Lancet article- google it).

Add to this the proposed changes with how send is supported and the governments review of increasing diagnoses and how pip claimants are being discussed and to me it seems as though the diagnosis is being portrayed in a way that it is normalised and support/ adaptations can be withdrawn.

There just doesn't seem to be the want to spend the amount of money required to support everyone who says they need it. Some NHS trusts have tried to hault diagnosing autism and adhd because of demand (they were forced to reconsider).

We're reaching a point where so many people have a diagnosis or self diagnose that having the condition is just normal.

It does look like the next version of the dsm will define profound autism to distinguish this particular group of people.

Just to add I saw a post where somevody referred to hidden disabilities, it makes me laugh when autism is called this. Autism isn't a hidden disability in our house, there is nothing hidden about it; it's loud, flappy, rocking, vocalising, stimming, no getting away from it. We don't need a sunflower lanyard to signify need because it's obvious.

People who are terrible parents and neglectful are highly unlikely to go through the fight for diagnosis. It's actually enraging that people think it's so easy to get a diagnosis or any help whatsoever.

What does this support actually look like?

My brother is autistic. His struggles are profound and significant but I cannot think of anything I or anyone can do to actually support him.

The ‘it’s not a competition it’s just a spectrum’ narrative works immensely well when those on the severe end are unable to advocate for themselves because they can’t speak.

So,so incorrect and just your personal bugbear and wishful thinking.

Numbers are not high at all, it’s underdiagnosed and no sign of it being redundant. If anything there is recognition that it is under diagnosed and a push to improve that as under diagnosis costs us a country so much money.

Support and adaptations are allocated according to need not diagnosis so they will not be withdrawn. They are protected by the disability act however much that disappoints you.

I really don’t understand why people actually care. When I say that I mean those who have NT children and go on and on about it being over diagnosed or not real. Like how does billy down the road being diagnosed with autism effect your lives.

It's not hidden in my house either, the neighbours have to put up with listening to violent meltdowns, screaming because they have sensory overload, rocking back and forth, smacking themselves in the face repeatedly, hiding knives and scissors. However, they appear high functioning in school and life but it's getting harder and harder to function for them as they progress through primary school. Why are you trying to gatekeep support for my child because it isn't the same as your experience of autism?

Do you not feed your brother? Shower him? Change his nappy? Lock the house doors so he cannot leave? Maintain a two to one ratio when you go out so you can physically block him from running into the road? Use additional harnesses in the car to prevent him undoing them? Have guardianship for finance and health?

Support can be a whole host of things from supportive living and the dynamic support register to stop inpatient to online support groups. Some of the least worthy looking and least expensive support can help to stop the need for the more expensive support.

Ah, sorry about the misunderstanding.
I don’t agree with your previous post though —
“It is really illogical for the experts to say that two people can have identical traits but if one is in an environment that's perfect for them and is largely unaffected but the other is not and is adversely affected, only one of those people can be diagnosed with the condition.”

People online might say this, but the experts don’t in my experience. You said yourself an NHS psychiatrist diagnosed you even though you don’t describe yourself as ‘severely affected’.

I don’t think you need to be severely affected…though I am confused by those who say they have autism but are unaffected by it. No environment is that perfect throughout life and the diagnostic criteria are impairment and deficit in certain areas of functioning. How can you get a diagnosis if you don’t have some impairment?

Have you looked at the changes to send? Have you seen how pip claiments are villainised?

I think it's you that is wishful thinking. Even the op refers to this.

For a lot of people they will never qualify for supported living and even if they did would refuse it anyway.

Support requires on the recipient engaging and welcoming it. Otherwise it’s redundant.

I presume because they think we want a diagnosis for the extra benefits.

The fact PP says her brother has profound autism but cannot see any specific support needs suggests they have no idea what profound autism actually looks like.

Trust me, I do. I used to work in a special school. I literally said this in an above post The ‘it’s not a competition it’s just a spectrum’ narrative works immensely well when those on the severe end are unable to advocate for themselves.

Children with autism are vulnerable to bullying due to lack of awareness of social etiquette, vulnerable to financial abuse/poverty because they are unaware of how to manage finances or spot people who will take advantage, school refusal or inability to work due to overwhelm are just a few - they need advocates too, perhaps not to the same degree as your brother but my child will need this in life and it terrifies me how they will end up if anything happened to me.

I am trying to teach my child these things but they just don't understand emotions at all. If we could access therapy to help them identify these in a way that they understand or have support from the education system to help teach them about some of the impacts on them and how to navigate life. I try my best but I'm not a specialist and I get abused physically daily by my child because they are lost, I work full time, I would like someone to give a shit about their future and help.