A diagnosis one

[CarGoat]

Ok, I know diagnosis etc.. has been discussed to death on Mumsnet, but ...

Recently I have come to realise that in every single family I know (as in, families I'm friends with or know enough to have been to each others homes, kids have play dates etc...) there is a child with either an established diagnosis of ADHD or Autism, or there is a child undergoing assessment/on wait list for assessment.

The final realisation, (and I guess what prompted this thread) came when the mum of my child's best friend told me he has recently been diagnosed with autism. I have never seen any traits and had no idea. He's a lovely, well behaved kid, has loads of friends, interests, plays computer games with my DC, they hangout together, play games together, chat together,.do sport together. I understand there must be some difficulties his mum has observed which led to diagnosis etc.. it's just, he seems fine!

I then reflected on all DC's other mates and realised just how many either have a diagnosis of autism/ADHD or have siblings with this. My nephew is in the process of assessment for autism. My other nephew is also being considered for ADHD and has assessment coming up.

This is mad.

These children, while they may well meet criteria and I am not doubting that, they just don't seem much different to the average kid in terms of communication and behaviour etc... so all are relatively 'mild' in terms of presentation (i.e. autism is not of a level that's non verbal, the children have good peer relationships etc). I know people will tell me you don't thave levels like 'mild', but I'm not sure how else to explain it - just that the children all 'appear' perfectly fine. They just seem like normal, average, healthy children.

So ...

Is this just a quirk of where I live, in that in my village there just happen to be loads of children with ADHD and Autism, but this is not reflective of wider society?

Or

Is this reflective of wider society? Are the levels of diagnosis of these conditions now this prevalent?

And if the latter - shouldn't we make the criteria for diagnosis harder and just acknowledge that we are all a bit neurodiverse to some extent, and make adjustments to the schooling environment to account for that, rather than having to fund all these individual assessments and locate the problem in all these children?

I just think it's ridiculous to diagnose so so many children and if nearly every family has a family member with a diagnosis then surely the diagnoses are a bit redundant and meaningless?

(I know some people will not like this post, sorry. I am putting on my hard hat)

My DD is 14
If you met her you would see a delightful / polite and beautiful young lady.
You would have absolutely no comprehension of her daily struggle : she will be over analysing your body language and worrying if you really don't want to be talking to her/ the way you look at her and hold eye contact or not .
She will be struggling to hear you if there is any other noise.
Is she can hear you chew or swallow she is wanting to scream inside and if she can hear you breathing it scares her. She worries people will stop breathing .
She will be struggling if she can smell your perfume because she gets a strange taste on her mouth and will want to go and rinse her mouth out and it will prevent her from eating for the rest of the day.
It is so hard for her to actually be there / smiling / PERFECTLY made up because of her 2 hr getting ready routine at home , but inside she is so exhausted just from pretending .
When she gets home she will unmask and be very challenging. She won't sleep for long because she doesn't like the feel of her eyelids on her eyes. She will only eat in the bath which is her safe space that night and she will worry endlessly about being up at the exact time to prepare in exactly the same way for over two hours to go to school and pretend she's okay again the next day .
She will call me from the toilet and not speak but just want to hear my voice when she's having a panic . Sometimes she will call her elder l at uni and they step away from their day and talk to her silence too.

And then she comes out with me and meets my friends who say
Gosh
She looks normal
Are you sure she has autism?
If only you knew

do you think parents of ND kids do all the hard work for fun? It’s just something to do to pass the time?
getting a diagnosis is not a quick or painless process, for many its years and a lot of tears. It’s a journey full of ignorant people gaslighting just so you can put your child on an even playing field with all the NT kids who the world is created for.

@mumzof4x one of my children is the same. Doesn’t stop the autism and ADHD (and sensory processing, auditory processing, ARFID, dyspraxia and dysgraphia) diagnosis being correct.

I meant 'normal' as in a normal distribution curve - as in - there is a range of 'normal' behaviours etc.. in any given population. Things only get to the stage of diagnosis usually (or previously) when behaviours etc.. sit outside the normal distribution.

For example - with learning disability. There is a normal distribution of IQ within the population. To get a diagnosis of learning disability your IQ has to sit waaay outside the average range and is usually lower that over 99% of others.

If something is 'normal' within a population, I can't see why it's considered 'disordered' (a equally horrible term). If half the population or even 10% of a population experience the same thing, then it's not really outside the 'norm'.

Mine's just turned 16 but otherwise you could be talking about her.

OP you have zero understanding of what goes on in these young people's lives. For many of them, holding themselves together to seem "normal" in public comes at a massive cost. And yes, a lot of things could be done to help them in schools that don't require a diagnosis, but they aren't - in fact many schools are becoming more and more hostile places for neuro divergent young people with their rigid uniform and behaviour rules. Just go read some of the stories on the the Facebook group Not Fine in School if you want to find out how little help and support is available to these kids.

Let's just stop diagnosing people with stage 1 breast cancer with breast cancer. Only 2 3 and 4 get a diagnosis now, good way to reduce the numbers. Stage 1 can just see how it goes, not sure they really need treatment like people with advanced breast cancer do, and you can't tell they've got breast cancer by talking to them anyway so what difference does it make.

I'm so sick of these ableist posts

OP

Why do you think you would be able to tell if your child's best friend has autism ?

What are your qualifications in autism diagnosis, what training have you had, what experience of knowledge of traits that constitute a diagnosis do you have ?
Are you aware at what level the intensity and effect traits have on an individual warrants a diagnosis.

What about co morbidities, how much do you know about those?

Have a read of this, it may raise your awareness about people's perceptions of autism and the reality.
neuroclastic.com/its-a-spectrum-doesnt-mean-what-you-think/

If she had £1 for every person she encountered with your ill informed attitude, dd would not need DLA/PIP.

You must live in an area with an exceptionally high level of diagnostic availability. Any idea of the process and how long it actually takes? Clue, several years from first referral.

Not sure you need a hard hat for this thread, perhaps a dunce's cap would be more appropriate.

@CarGoat my dd is 25. Throughout primary she appeared totally normal. Always high performing except at games/anything to do with her hands - awful writing, hated hama beads, etc. But counteracted by exceptional musical ability.

At 14/15 a bit of cutting started. By 15/16 there were some episodes of over dosing and food withdrawal. She couldn't cope with the demands of 11 GCSE's and the constant masking any more and developed gad and depression.

At 17 she was diagnosed with ADHD, some autistic traits but not enough for a diagnosis and later under her own steam, with quite severe dyspraxia. There was zero NHS help or through CAMHS and I dread to think where my dd would have ended up if we hadn't had the money to pay for a consultant adolescent psychiatrist, some day case provision, shed loads of therapy and of course the assessments. BUPA picked up some of the cost, we picked up £8k.

Now, I am pretty sure that when I were a lass and at secondary school in the 70s there was no pressure to get vast clutches of GCSE's, A'levels or go to uni. Plenty of people got two or three. The girls did a secretarial course or cordon bleu Cookery and the boys could still get a job in stockbroking or went into estate agency or landscape gardening, etc. There were different pressures and the neuro diverse slipped under the radar.

The world has changed and vis my own dd, looking back the markers were there but unrecognised. Had they been, they could have been addressed and much suffering would have been spared. She was lucky because we had the resources to buy her help when the NHS wouldn’t provide it.

She recovered, went to uni and is doing very well as a secondary school teacher specialising in SEN alongside her discipline. She manages her neuro diversity.

I thought it better to explain that rather than just write ODFOD.

Well interesting you should raise this.

There is no blood test, no ultrasound, no CAT scan, no biopsy for autism, ADHD or mental health problems for that matter.

Diagnosis is based on self report largely - especially for ADHD. Autism diagnsois is more complex, but still based on behavioural obs and self report.

If you google physical health symptoms you can often worry yourself you have cancer or heart problems or something serious. Luckily though, the GP can run blood tests and other tests to rule these out. Most people that present at a GP with symptoms of cancer, don't have cancer.

There is no way to 'rule out' ADHD or Autism in this way. So I personally believe this leads to over diagnosis.

What a load of nonsense. Rather than start a goady thread your time would be better spent actually using Google. A quick search would have told you what tests are done to diagnose and how differential diagnosis works.

Your posts are deliberately provocative.

The children you refer to with seemingly no outward signs would not be diagnosed if there weren't significant indicators.

Diagnosis is a long and complicated process by professionals, often a team of Ed Psych, SLT, OT and Paediatrician.
The tests and their results make very interesting reading and show why that individual rested is neurodiverse.

It's often not apparrent to a casual observer.

It's not nonsense. There is no medical test for autism and ADHD. I'm well aware of the tests used and they are all based on self report (and self report of others) and OBS. There is no other way to do it. You can't look inside someone you have to rely on what you observe, what the patient says, what they describe and what others says and describe. That's it.

In the case of ADHD I know adults that have researched and researched the symptoms then reported those symptoms to a private psychiatrist and received a diagnosis. I'm not passing judgement on that but there is no blood test or other test to rule out..

OK I'll bite.

Shall I tell you what it was like growing up as an undiagnosed autistic girl in the 80's and 90's. For I would have fitted your definition of "normal" well enough back then - because I masked to fuck.

Kids are like dogs - they sense "different" and unlike dogs - they can be foul.

Nursery school - I was kicked out because of being late toilet training. No alternative provision or anything - and since it was the 80s, there was no understanding and I was just shamed into sorting it out.

Primary school - no friends, I spent my playtimes squishing up blackberries from the other side of the school field fence into an empty pop bottle (1980s so we were actually sold bright coloured fizzy pop from the school tuck shop). At one point I vividly remember some of the boys smashing my head onto the school playground (and the headmaster spending the time with me in his office dabbing it with a wet paper towel - and when I rang him later on as an adult for something else... he remembered it as well!). I had worms shoved down my t-shirt by one boy (I can still remember his name - and I'm still terrified on wet days when the worms come up to the surface if I see one).

Then the incident on the bus where I "was weird" so I had cigarette butts shoved in my mouth. All the incidents where I just got randomly targeted to be beaten up for being "strange" and the fact I couldn't even sit in my bedroom with curtains open without things being thrown at the window for being a target.

In secondary I was dragged out of the corridor into a classroom of older girls who told their friends "you've got to see this girl, she's so odd"

But yeah - I was "coping" and sufficiently "normal".

Getting my late diagnosis was game changing - I understood who I was and how some of the things I got into trouble for constantly were simply me not being able to navigate the social interaction game of rules. I could half-fake it, but it fooled no one really and just made me a miserable outsider, fed into anxiety, mental health issues, deeply disordered eating because I didn't understand why people didn't "get" me.

It was a fucking grim time, despite the diagnosis rates meeting the OP's sufficiently stringent criteria.

Yes, I hold down a job successfully now (took me till my 40s and being diagnosed to do so though), and I can appear as a slightly quirky professional who gets on well in meetings - but colleagues haven't seen me having meltdowns, banging my head backwards off my office chair to try to sort out the mess I'm in, my speech breaking down and stimming. My colleagues are wonderful and would get it if I did - but it's not exactly office conduct!

It isn't based on self report alone. It's based on reports from the individual, parents, teachers and following assessment by professionals in the field.

This is true for the majority of psychiatric diagnoses. You could swap out breast cancer for depression in my analogy if you like, the point would still stand.

Perhaps overdiagnosis is an issue, perhaps it isn't. I don't know. But none of the tests you refer to has a perfect score for picking up true positives and ruling out true negatives. There will always, always be false positives and false negatives with every test. It's not a reason for ignoring the best methods we currently have available to us to try to get the best care for everyone.

I also participate in our ASD diagnostic pathway meetings - and we are bloody harsh on who we will move forward to a screening. We screen out around 75% of people whose difficulties could be explained by other conditions.

ND people attract ND people as friends. There's probably some amongst the adults too 😬

Which is really positive.

(Not so much the case with private diagnoses though. Unless you are private? In which case apologies I stand corrected)

Its not largely diagnosed by self reporting, it is usually by school, parents and child. Then a trained psychiatrist reviews all this evidence and reviews the individual to see if they meet the criteria. What you are talking about is that you see these children masking their behaviours, you have no idea what goes on at home for them when they are in their safe place. No diagnosis is easy to get, its is actually very difficult. What a horrible post! Just because you don't see first hand the struggles doesn't mean they are not real.

Okay! I'd probably deserve it! Mental slap received. I apologise I think differently. I'm trying to get my head round things so it's good to hear your perspective and the perspectives of others.

I just don't understand the need for all these diagnoses. I don't understand why we can't live in a world where we are just all different and that people/schools/employers make adjustments based on individual difference without the need to diagnose everyone all the time. I seriously think if 40% of a population have a condition, then there is something wrong with the diagnostic process.

Yes but the school, parent, child and psychiatrist are just going off what is said and seen. There is no other way! The school.are offering their report the parent offer theirs, the child theirs. The psychiatrist takes what is said and seen and looks up the symptoms against criteria, uses questionnaires etc. as well based of self report. There is no other way!! There is no proper medical test. It's just report and OBS.

You are aware they you have to have evidence of difficulties right?

Thank you for this. It's nice to know some teachers fully acknowledge this and have our backs. Parents of send CYP often get such a shit time with all the judgment.

Yes, in the current system diagnosis is needed for support. I think that's a shame and a bit ridiculous because more and more people have to seek diagnosis