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)

We don't give everyone a bandaid when something is wrong with them. A bandaid treats a cut or graze, but it doesn't sort a headache or upset tummy. Instead, we diagnose the problem and implement a targeted treatment. In teaching and learning, we work hard to understand each child's needs and implement appropriate strategies to support them to access the curriculum on the same basis as their peers. In order to do that, we need a diagnosis which allows us to understand the child's learning needs. We don't use surface level assumptions about whether or not a child seems normal, and give them a bandaid if we decide they aren't.

No, we shouldn't be making diagnosis harder.

It's hard enough.

My daughter is non verbal autistic with an underlying chromosomal disorder. With all her substantial needs, she still had to wait two years for a diagnosis, despite it being painfully obvious.

And respectfully, these children are not your own. Who are you to say that they seem fine to you?

Just like schizophrenia and many other things such as depression, bipolar disorder, are you questioning all these things as well. A professional reviews the evidence and the individual and makes a diagnosis. Do you seriously think people including schools are making up evidence to get diagnosis's as that is what it feels you are implying.

And fwiw, even with my daughter's substantial needs, we don't really get any extra support from the NHS.

We had to fight for a couple of years to make our LA admit she needed specialist provision.

Her diagnosis means she will understand herself as she grows and its a frame of reference I can give to peopl3 who don't know my daughter as to why she behaves the way she does sometimes.

A quick Google gave the following results.

3 to 4 percent of people in the UK have a ADHD diagnosis.
2 to 3 percent of people in the UK have a diagnosis of autism.

Very far from a majority.

Thata good to know..I think I just have a skewed sample where I live!

I can't help but wonder how far off we are to those with diagnosis become the majority and those without become the minority. Will teaching methods then become aimed at those with diagnosis and so those without will become the children in need?

Very very far off. Its still a huge minority

There is no proper medical test. It's just report and OBS.

"Proper"? You mean a blood test or something?

Unlike you, I have watched an ASC diagnosis being done. The SALT knew exactly what to ask so as to test when literal or echoic reponses were being given rather than deep or generated ones, whether DC's language pragmatics were in a similar range to other children's, and whether DC could articulate internal states or social relationships in the way that other children their age would. DC enjoyed a lovely conversation and by the end of it the SALT had a diagnosis and I had a real eye-opener.

The SALT, clinical psychologist and paediatritian all knew how to test so they could see if they were getting unusual, dysfunctional or way-out-of-normal-range responses rather than the usual ones. I didn't notice them myself because I didn't know exactly what to look for.

I didn't know how to test those things properly. I'm guessing you don't either.

Do you live in or near Cambridge by any chance?

Samples are often skewed. DD suffered poor self esteem because unlike her dbro she wasn't one of the two cleverest in the class. Of DS's primary class one went to Oxford (him) and one did medicine. Of DD's cohort of 30, 12 went to Oxbridge/did medicine. It's extreme but so too may be the op's situation.

It may also be the op lives in a region where there are unicorns and pink fairy webs alongside a functioning CAMHS/NHS provision. Generally if one's child has needs, they are barely acknowledged let alone assessed and diagnosed.

Something OP did get right was about the school environment needing to change to suit more children.

When we make places more accessible, it becomes accessible for more people. For example, people not in wheelchairs were not disadvantaged when ramps were put in place - indeed, it helped more people who perhaps struggle from time to time with walking up stairs.

Same principle applies here. I don't think the current educational set up is good for any child.

There is really no such thing as 'mild' autism or ADHD.

If you knew me, you'd think mine were 'mild'. I'm a functioning adult with a home, two children, a 20 year happy marriage. I have no financial concerns we're very secure. I drive, I work, I (selectively) socialise. I'm cognitively able/well qualified/educated albeit most of my education has been done as an adult. School and college were tough.

I've spent four decades masking.

I'm autistic, have ADHD, PTSD, anxiety and depression. A fun combination. All diagnosed, all medicated (where they can be).

'Mild' diagnoses such as these are only mild in the impact they have on others around that person. They're not mild in how they impact the person with the diagnoses.

My children are both autistic (diagnosed) and waiting in ADHD assessments. They're both incredibly bright and with high levels of support, do well in school.

Most people don't even realise they're neurodivergent and constantly question why they have support in school because they seem 'fine'. They are not, and as soon as they're in their safe space the impact of these conditions is profound and significant.

People who talk about 'mild' neurodivergent diagnoses really don't understand I'm afraid. You don't even get diagnosed if things are so mild they don't impact you significantly.

One hundred years ago, no one was left handed, it simple wasn't recognised as an option.

Then, in about the 1950's, it started to be accepted and the rates increased rapidly.

At that time, some people must have thought it a bit strange that 'all of a sudden' everyone's left handed.

The rise stopped at something like 12% of the population and had started around this rate ever since.

Just because we're at the point where, after years of research, we're finally understanding other neuro-diversities and therefore rates are increasing rapidly, it doesn't mean it's wrong or a trend, it's just that we understand the human mind better than ever before.

Unless you live with any of these children, you won't have a clue about how much they are making to appear 'normal' and fit in.

Having a diagnosis is helping people understand who they are and why they find things difficult which other people seem to find so easy.

I am so fucking sick of these stupid threads. Yes, I am here. On this thread. But seriously, listen to yourself OP. You sound like someone who doesn't have a clue. Because you don't.

Here is what you said:

Like, literally every family we know has someone with a diagnosis.

That doesn't really constitute a nationwide study, does it?

As for your comments about people not looking as if they are neurodivergent, you don't have a clue about the contents of someone's brain - or life - to be able to make any sort of judgement about how they navigate this world. I have a 16yo who has been awaiting ASD assessment for 4 years. Things were picked up in primary school - little 'quirks' - but hey, he was doing well academically and he was happy at home (now I realise he felt safe there and thus seemed ok to us.) So I didn't rush to have him assessed. How I wish I had. Because now all the wheels are falling off and he is struggling with every aspect of his life. I won't go into detail, but I'm pretty sure if you saw him walking down the street you would think he was 'normal', to use your word. But if you saw him hiding in the toilets at school, sleeping on the floor under his bed or crying with frustration because he can't stand the 'noise' of life, maybe you would understand how a diagnosis might help him make peace with himself and also access help/mitigation/some fucking understanding at school and elsewhere.

Yay, an ableist thread! It’s been almost minutes since the last! My autistic, ADHD, SPD and dyspraxia DS hoots with laughter when these crop up!

I couldn’t help but notice the large number of mobility aids in use in my local high street earlier. I have therefore concluded that a large proportion of people in wheelchairs are just too lazy to walk. <gavel>

FFS 🙄

Also, 37% SEND in one teacher's Y3 class =/= 40% national rates of autism.

I don’t like being rude but I have to say you really don’t know what you’re talking about.
There is more diagnosis because there is more understanding of these conditions
There’s also more diagnosis because these conditions are genetic and the population is growing.
Families with SEND children have an incredibly difficult time and getting a diagnosis and support is a constant, exhausting battle.
A diagnosis means it’s more likely the child will get appropriate support or at the very least carers and professionals would understand them better. The children also understand themselves better.
I find your comments ignorant and pretty upsetting. I hope you learn something about SEND and about empathy from this thread .

There isn’t a blood test to confirm whether someone is missing a limb or not either. Doesn’t stop it from being true.

It’s also not true about a self report for diagnosis. Usually both autism and ADHD require multiple questionnaires to be compelled by carers/parents and school or educational/social professional. Some of the questionnaires can take several hours to complete as they can be multi choice and then require examples to be given.

Then there tends to be two assessments (each around an hour) completed with appropriate health care professionals. A multi disciplinary professional team will then meet to discuss everything and see whether they have reached the threshold for diagnosis or not. This is the fed back.

At best a prescription for ADHD meds or melatonin for sleeping might then be prescribed and there is little if any follow up.

The whole process can be a very stressful few years.

There were only obs available in relation to physical/structural illnesses decades ago. Diagnoses came about through observations rather than objective tests. It was the physician diagnosed.

MH is catching up and it may well be that there will be objective tests available shortly. There is already work being done around how parts of the brain respond to external stimulants and identifying how reactions differ in the neuro delivers compared to the neuro typical.

You mention that your nephew has autism.

Autism/adhd tends to run in families so if you have relatives who are diagnosed you are likely to know other family members who are diagnosed.

Others will not have anyone in their family with autism or adhd.

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...

I wish people who dont have any understanding of ND would Stop posting this nasty goady stuff. As if the NHS is handing out diagnoses of ASD and ADHD like sweets. The waiting lists are unless and lives are ruined in the process. I suggest you change your username for cargoat to goadyfucker. This is clearly just yet another wind up threat aimed at children with SN.

Do you know @CarGoat you sound very like my step. Evidently every one where he lives voted Reform. He cannot compute that if that were the case the Conservative MP wouldn't have got in. DH, DD and I quietly eyeroll and try not to catch each other's eye, lest we laugh out loud.

Oh FFS! Approx 1% of the population are autistic, and 4% have ADHD. So no, for the millionth time, we really are not all neurodivergent. Hence the term divergent. Do you know how hard the diagnosis process is? I don't understand why NT people are so threatened by neurodivergence. Just get on with your own shit and leave us to get on with ours please.

Masking is a very real and can be a very harmful thing. I don't understand why you wouldn't approach people with empathy instead of questioning their diagnosis.