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)

Sorry I meant to quote this in my last post which was in response to this...

https://amp.theguardian.com/society/2024/mar/04/uk-increase-autism-diagnoses-neurodiversity

OP this article is quite interesting and quotes recent research and professional opinions. MN isn’t the best place to question sometimes as it’s a personal issue for many.

someone With autism can bully another person with autism for their autistic traits. Because they are different to them and it’s human nature to want to exclude anyone who is different to them. Just because someone is bullying someone with autism doesn’t mean the bully isn’t also autistic.
It’s true that autism is really common but it’s still being researched. It’s a really complicated developmental disorder, and it’s hard to know what causes it or if there are different types or if they are different conditions so right now it’s all under one label

I understand what you are essentially saying isn’t the point in autism that you can’t function and be normal yet others with autism are saying they have sustain having a job and can form relationships but it’s really because autism effects everyone so differently

Of course the parents know their child better than I do. I said in my original post that I don't doubt that there must be difficulties the parents have themselves observered and I don't doubt they meet criteria for diagnosis.

I just find it weird that all my DCs friends either now have a diagnosis, have a sibling with a diagnosis, or are going through process of diagnosis.

Luckily, I have heard this is unusual and not representative of other peoples experiences or the national average. But in my shoes maybe other people would also question what is happening and why the need for so many diagnoses. Having listened to all the replies I am learning a bit and understand may e my area is a bit skewed in terms of the small.samppe.of.families.involved.

I'll bet you don't want them to realise you pooh-poohed their child's diagnosis online.

other posters have been really aggressive towards you and you don’t need to be bullied into conforming to their view points everyone has observed that autism rates have risen to really high levels at a rapid rate and councils are being bankrupted due to SEN costs. It is all under “autism” because the condition is too complicated and not researched/understood enough to be called anything otherwise. I too have wondered if we are all just human beings with different levels of need and I am autistic. People are going to be offended because they don’t want their experiences and the difficulties of themselves and their children to be dismissed

So given I am having these thoughts and questions, what should I do? I thought Mumsnet was a

Sorry it accidentally sent without me finishing, I'll try again!

I agree with this. Saying that a person is ‘high functioning’ implies that they find life relatively easy. This is not necessarily the case. That person is very likely masking in order to conform. All day long their brain is chattering away, making choices about how to behave/react/appear in situations others just do automatically. As I mentioned upthread, my eldest is awaiting assessment. I suspect he isn’t the only one in our household with ASD as I have many traits myself. For example (and it’s just one small and seemingly trivial thing of many) I struggle with eye contact. So I tend to look slightly past people or at their mouth. But throughout the ENTIRE conversation I am thinking about where my eyes are directed while simultaneously trying to show an interest in and respond to what the other person is saying. It’s actually quite exhausting. It might not seem like a big deal, but considered with other difficulties, it’s part of a broader issue with social interactions (which I avoid when possible.)

One thing to bear in mind is that the majority of neurodivergences have traits that overlap with others. Dyslexia is comparatively common as a ND and many of the traits could easily show as ADHD and that’s not just because you are more likely to have ADHD if you are dyslexic. Often ND isn’t picked up so you might see someone who is actually dyslexic with traits that overlap as ADHD and assume it’s ADHD that they have when they don’t.

Those with neurodivergence often seek out others who are similar so in small groups, the numbers are never going to be relative to the overall population.

If my friendship group 2 kids are diagnosed with Autism. First one is 6, non verbal and so hard for my friend. Second one is 13, and it’s always been clear from what my friend has told me that she is autistic. Clearly not as badly affected as friend’s 6yr old.

So given I am having these thoughts and questions, what do you suggest I do? I thought Mumsnet was a place we could come with our thoughts and others could challenge those, agree with those, disagree etc.. and in the process that helps the person maybe change their mind or grow or learn.

Should I just have kept my thoughts to myself and not opened up the discussion? That would t change my mind on anything or help me learn, or give posters the opportunity to challenge me (and likely others reading who may share my views).

Is Mumsnet only open to one line of thought now and we always have to agree with each other?

If there are thousands guys we have which we don't want to say to our friends because we care about them and don't want to upset or offend them, should we ever speak those thoughts to anyone anonymously? Or just shut up!?

There is a difference between seeking advice, challenging that advice and just making a goady OP. You chose to be goady.

The problem is the way that you have come across as you have stated things or implied things are true rather than explicitly stating that it’s your own opinion or observation and you have also come across as though you’re invalidating others experiences and diagnoses and in autism particularly those people will have spent parts of their life not having their needs met and not being understood, it’s really important for them that they feel heard and it feels like you’re being dismissive of everyone

I don't even think I know what goady means if I'm honest, but I assume you mean I've just decided to start this thread to wind people up!? Why the heck would I do that? I have disagreed with people, but that's ok. It would be a boring world if we all thought the same.

I'm sorry if people felt invalidated.

Yeah it’s just no one likes having their autism questioned or invalidated for obvious reasons. Especially by a random person that has no idea.
but it’s not right that you’re being bullied off the site if you’re genuinely interested in learning.
What led you being interested in this particular topic. There are a lot of resources to learning about autism. Funnily enough you might also have it. As you said it’s very common.

I may do!

Yes, to wind up.

Asking questions and wanting an understanding is how we learn. Challenging what we hear is also how we learn.

To open by saying it’s mad about the diagnosis, that people’s conditions are mild and that the threshold needs to be higher when you are clearly ignorant (and luckily so!) about the realities of neurodivergence just comes across as trying to get a reaction out of people.

Well my post may have sounded that way to you. But you are wrong to assume the intent was to get a reaction. Why would I do that? What satisfaction could possibly come from seeing people 'react'? Nah, I'm not like that.

I'll take your comments about my ignorance as you believing I am not educated well about autism, rather than you are trying to insult me, which I'm sure you wouldn't do.

But a child who is apparently doing well, might well do a lot better with support, just as much as someone who is worse than them. Do they not deserve help?

I suspect you'd have put my ds is the "why bother" category.
With the support he got once he'd been diagnosed (year 10) he went up around 3 GCSE levels in less than a term in several subjects.
It also was good for him mentally, because he'd always commented that he would never be good enough to get recognition for being good, but not "bad" enough to get recognition for "not being bad on that occasion". One of his first comments when he was diagnosed was that he wasn't now "just the naughty boy"; he had a reason why it was harder for him.

In the right environment (where I know the building, people, format to the day etc) I would be classed by many as ‘mildly’ autistic or ‘high functioning’.

both terms I utterly despise - but are imposed upon me by others who see I can talk and and do not have a learning disability so they make presumptions and judgements about me.

Change 1 tiny factor or put me in a new environment and you might see far more obvious ‘autistic traits’ as my hard learnt social skills and masking deteriorate - as the anxiety of trying to cope and figure out the world takes over, my stress increases, and my ability to cope with sensory stimuli means I stim more or use aids to help me to block out / cope.

The verbal person i am in the perfect environment- able to hold their own in conversation - becomes a totally mute person unable to look at let alone respond or initiate conversations. I s as m totally reliant on others to communicate for me.

I sm totally unable to leave the house without support. Again - you see me out with my husband you wouldn’t know that… but if he goes off to the loo in s restaurant - I become a quivering wreck on my own. Again not do ‘high functioning’ now - nor when it takes me the whole morning to get in the shower or when I can’t cope because plans change / people let me down …

most of the time I can and do talk - but there are times when I can only use pecs cards or sign . Suddenly I’m not do ‘high functioning’ and it is not a choice - it is a reality of being autistic.

judging others ‘degree’ of autism is very insulting. All autistics are on the spectrum and all of us are affected to greater and lesser degrees in many aspects of our lives and also in different environment.

the kid that is ‘fine’ when you see them may be masking or coping but could spend the rest of the day in utter meltdown / shutdown or totally overcome by emotion / sensory input that they can do nothing except decompress.

if a dr diagnoses asd - the person has asd. It is not easy to get a diagnosis - it is not given lightly but given when someone meets the criteria. It is looked at from so many angles and by so mss as my professionals.

I could go on and in about how being autistic impacts every aspect of my life - but I won’t as people only see what they want to:

it is good that more people are being recognised / diagnosed nowadays as maybe more people will now be helped to learn to cope rather than being written off or treated as a misfit .

It is bad that so many uninformed people feel able and qualified to judge a medical diagnosis and is so insulting to me an autistic adult with 2 autistic children that people feel they have the right to question a medical diagnosis.

If 40% of a population have been assessed to have a range of conditions in a range of presentations, that means 40 out of 100 people in that population have a range of conditions in a range of presentations.

Declaring 'Oh, no, we didn't like how many were being diagnosed, so we've moved the goalposts - you're cured now' does absolutely nothing to change the fact they have exactly the same conditions and exactly the same presentations. And that declaration that you'd want to make is pretty much the same as the fools who say 'oh, no, I wouldn't want them to be labelled with a diagnosis, they'd only play on it or be bullied if people found out'.

Some changes in society can actually be beneficial for some people who are neurodiverse, such as being able to communicate digitally without the agony of having to talk to people, trying to understand their body language, whether what they actually mean is the same as what they're saying or knowing that if all else fails, at least there's no risk of them physically attacking the person for being weird/stupid/difficult/insert abusive term here. However, others, such as never having true darkness, constant stimulation and distraction, a lack of involvement with animals and nature, the constant drive to make money and look right and get qualifications and be tested and assessed and appraised and criticised and all of the traffic and lack of physical exertion and everything else that's part of the modern life, frankly, aren't.

To be able to see that society isn't working for 40% of the population and to argue for change, you need to know that 40% of the population has been evidenced as not being able to cope well with society as it is. Deliberately excluding them because only the 1% should be entitled to have their severe needs recognised achieves absolutely fuck all other than condemning 40% of the population to be ignored, abused, excluded and generally fucking things up for them and anybody else in the vicinity out of pure malice dressed up as 'But surely we don't need to label them?'.

You're doing the ableist equivalent of 'I don't see colour, why do we need laws to protect anybody? All lives matter, don't they?'.

I totally agree with you OP and I know others who would too.