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)

I have just spent an evening in the movie theatre with the kids. The ones of us on the spectrum went in with our loops to keep out hard noises, used the bathroom before we went in so we did not have to get up and down which causes anxiety at times with not knowing if your brain will find the way back to the screen and seat you are in and with ocd the thoughts of using the toilet in a public place can be an overwhelming thing. We ate before we left so all of us could find something we actually eat that are 'safe' foods as for us that is a huge thing and each of us had something with us like a loose ring on finger, a box off our loops or a long pendant in my case to touch and roll around in our fingers instead of stimming.

We do this so WE ND's do not make NT people feel uncomfortable in our presence with disrupting them due to all of the above and sensory issues etc.

I cannot imagine walking into a cinema and saying right guys we are ND if you could all NOT chew, stay seated and ignore me while I twitch and act as I would at home making sounds or clicking my fingers because I know the majority of people there would not comply and feel deeply uncomfortable with the request. So we mask. We try exhaustingly to become 'one of you' and not draw attention to our ND traits for people who do not have them.
Then we do this so well because we have had to do it all our lives and are told 'hmm well you dont come across as ND'. No cos we are trying to fit in so YOU do not become uncomfortable and all that would be fine if we werent then almost shamed for trying our best to fit in to a society that does not understand us to the point that they claim we are pretending or getting misdiagnosed to what, have a label?
Honestly the easier thing would be to go around acting like we all do at home and get the label of weirdo if that is all we wanted.

I am now home, responding on this thread and about to unleash my 'normal' self at home in comfortable surroundings and try to relax. Oh what a thrill it would be to just get up and book a cinema ticket, go, eat and drink and go home instead of working out things such as clothing that wont make us feel uncomfortable to sit during long periods, the best seats so we are as far away from others as we can where possible, making sure we have gone to the loo two times before we go and eat before we go instead of deciding when we get there what to eat. On top of this we have to worry what others will think of us cos sadly not everyone really does have asd cos if you had, you would realise the hardship of even leaving the house and mustering up the energy to NOT act like we have additionals.

I give up.

I’ve tried to explain how offensive your views are - but you are intent on turning this into an argument.

I hope that if ever your kids or yourself or your family members are diagnosed with anything by medics that people will be kind and believe you and not seek to undermine the professionals involved in your care. I hope that people will give you the understanding that you have failed to give autistics in this thread.

I will not look at this thread or comment any further as there is absolutely no point.

I wasn't addressing the OP. I was outlining how an autism diagnosis is not simply "given based on what you say or what other people say about you" as you put it.

It was given on the basis of 5 or 6 different fully qualified and registered professionals opinions alongside years of documented social, communication and sensory issues.

How was your/your child's autism assessment different from the one I've just described?

I.dont see anything wrong with starting an anti Vax thread or arguing COVID is just a cold. I happen to disagree with those positions, but fair enough if people believe them it's ok to post about them

I don't know you personally, so have no idea whether you are likeable or not. I suspect not on the basis of the manner in which you have conducted yourself online and caused distress to people on this thread, but, on the other hand, you could have been generally nice but a bit dim.

I'm not offended, because that would indicate an emotional response rather than a dispassionate observation that you're using ableist language and your argument is to suggest a real spectrum of conditions and their extent/resultant needs will cease to exist if they are no longer recognised.

However, not everybody has the reasoning capability to realise the implications of what they say, even when they attempt to use the cowards' apology of 'I'm sorry you feel that way', which linguistically blames the people they are negatively affecting, rather than expressing regret and culpability for one's own actions and comments. If you feel you are aware and still believe that the way to deal with increasing numbers of people being diagnosed with conditions of neurodiversity is to decide they don't exist anymore, though - and the appropriate defence to people disagreeing is to suggest that they're being emotional and you're just the victim in all this, well - there's not much hope for you, is there?

You'll just have to remain somewhat confused at why you aren't inundated with blanket approval from randoms on the internet and feeling somewhat aggrieved at the outcome.

So, you've become aware that neurodiversity is more widespread than you previously thought. Great, now you can try to interact with people in a more constructive and supportive way, and advocate for more neurodiversity-affirming approaches to education, workplaces and social settings.

Neurodiversity is how people's brains can work differently to the 'standard model'. A lot of people put a lot of effort into masking, into finding ways to function and 'pass' in a world set up for neurotypical brains. Neurodiversity isn't 'just' for people with visible behavioural differences - it's something that people of all ages, ethnicities, intellectual abilities, etc. can have going on for them.

Your comment was so taxing to read

This idea of your opinions and views being "of equal validity" is one major way you're going wrong here. You started off pleading ignorance and now you're claiming you're entitled to an opinion, even though you only have prejudice and anecdotal "evidence" to back it up ("looots of people I know have ND kids")

You know who else has opinions? Flat Earthers.

Problem is, your opinion that diagnosis is too easy/widespread directly leads to parents like me facing disbelief and even open hostility when we try to advocate for the needs of our children. It's exhausting. It's demoralising. And seeing you try to justify your words by saying your uninformed opinion is equal to everyone else's feels like a real dick move on your part.

Of course many service users and carers are capable of understanding the literature, I never said otherwise.

I never said that people who disagree with me must be disagreeing because they are too emotional.

I was just stating that I'm not alone in my view and on Mumsnet it's quite an emotive topic which makes it difficult to debate because, clearly, people get offended. And offending people is very much not want I want to do. So I'm wondering is on Mumsnet some topics should just not be allowed, or should have trigger warnings.

@NeverDropYourMooncup I used the EXACT phrasing to apologise that you said I should use. I listened to you and did what you asked. I can't win. I will say it again in case you missed it...

To anyone who has been upset by my posts - I'm sorry that I caused you upset.

Regarding the rest of your post, I'm not sure really what you are getting at or what you want me to say. Sounds like you want to insult me and tell me I'm not likeable, or maybe that's what you want to tell yourself. I'm not sure. If you want to insult me or make yourself believe I'm an unlikeable person, that's up to you. I'm not sure the point though really.

I've actually never met anyone who believes the Earth is flat. But I'd love to. I'd really enjoy meeting them and hearing their view and, if they'd be willing, debating this with them. They might not change my mind, but I'm sure I'd learn something.

That 1% statistic is horse shit. Research shows about 40% of the population will be neurodivergent. Society needs to change to accommodate this.
Not minimise diagnosis.
Also no we aren't all a little neuro diverse much like we aren't all a little bit pregnant.

Hi @WombTangClan

I'm just wondering how you 'know' we are not all 'a little neuro diverse'. Are you aware of how other people experience the world? Do you know what goes on in other people's heads?

OP, as the parent of an autistic child diagnosed unequivocally at the age of 3 by a multi-disciplinary team of experts, you are recycling one of many tired tropes that crops up all the time on here. Autistic people - and perhaps especially autistic children - are seen as fair game. You’ve pulled out the equivalent of an “all my friends are gay” card, but you’re still evidently doubtful that your friend’s son needs or deserves a diagnosis. This level of faux concern for others’ private medical information only seems to happen with ASC and its fellow travelers.

As parents of autistic children, we are fucked over whatever we do. Concerned about traits and behaviour? “You're seeking a label, we’re all somewhere on the spectrum, it’s just buying a diagnosis for extra help/time in exams/benefits, they’re all autistic these days”.

ND child having meltdowns/being disruptive? “It didn’t happen in my day, they’re spoilt, lax parenting is to blame, these children just need boundaries and routine, have you tried a visual timetable?”

NT child’s education being disrupted by disregulated ND child trying to cope in mainstream school? “The parents should home-educate, it’s clearly trauma/an issue at home, remove the disruptive child, send them to a specialist school where they can’t cause trouble for the NT kids”.

ND child finally gets a (rare) place in an indie specialist school? “SEN costs are bankrupting LA’s!”

I’ve seen, and been on the receiving end of, all of the above. The sense that “something must be done” about all these pesky ND people is palpable, and distressing to those of us who are vilified for simply wanting a level playing field for our autistic children.

This is dumb logic. That’s like saying 1 in 2 people develop some type of cancer in their lifetime, maybe it’s just a normal way for cells to behave.

Aren’t people worried that if the diagnostic criteria is too broad and autism starts being regarded more as a neurotype than a developmental disability, it’ll become a lot harder for people to receive DLA and PIP. It’s already hard to claim PIP for Fibromyalgia due to the rise in cases.

My son’s autistic and I have ADHD although my brother has autism and my mum has definite traits (being non verbal up until the age of three is one of them!). I’ve always had my quirks but I never considered I might be autistic until recently. To be honest, a diagnosis would be a waste of time. I’m not interested. I’ve lived around autism my whole life, I’m so used to it I can’t even be upset about this post. But for people who are only just discovering why they struggled so much, I can see why this post appears goading (although I don’t think it’s intentional).

I really, really hope this thread doesn’t get deleted just because people get sad feelings about reading words on a screen.

I also doubt the OP is the only person thinking that maybe there is more to the huge uptick in diagnoses than simply “we understand it more”

And considering the seriousness of the topic, it seems like a worthwhile discussion to me.

I think it depends though. Sometimes high functioning ND children struggle with their mental health and you wouldn't necessarily see that. I've heard to adult women especially who were misdiagnosed in their teens or 20s with a psychiatric issue but turned out to be high functioning ND.

Very much this.

During our multispecialist assessment process we had a number of professionals who were able to find clear evidence of ASD in excess of what was needed for a diagnosis, but one psych on the team challenged whether this was the right ‘time’ to make a formal diagnosis as dc was not majorly struggling in school (in part due to proactive senco and a brilliant send friendly teacher), and did I really want to ‘label’ dc as it might all work out. I might have gone for a watch and wait approach if I wasn’t in a nd support group full of parents with dc 2-3 years older than mine who were now in crisis despite just about managing at my dc age. Throughout the process I have felt like a bad parent for seeking diagnosis as well as not seeking it soon enough- you really cannot win.

Having a diagnosis makes it so much easier to advocate for a child’s needs, but it does come with baggage in the form of other people’s misconceptions. School continues to be brilliant, but having something in writing has shifted the convo from ‘what’s going on with dc’ to ‘how do we support dc’ and means we are less reliant on having a teacher who gets it. Extracurriculars are a bit trickier - on one hand it would be really helpful to be able to say ‘I know dc behaviour was unexpected and this is due to asd’ but then you never know how it will be received, and the outcome of disclosure is just as likely to be prejudicial. Without disclosing the ASD diagnosis they just think dc is poorly behaved or is lacking in some fundamental skill.

in an ideal world everything would be neuroinclusive, but I don’t think op has any idea what that would actually require from nt parents and children.

But it isn’t the diagnosis that determines dla/pip, rather the impact on your ability to get by / need for additional support. Diagnosing those with lower levels of functional impact doesn’t affect access of those receiving dla/pip. Same with fibromyalgia- it can have different level of impact on day to day life and level of support required.

OP is just asking questions, don’t you know……….

The irony

@Psychoticbreak are you a Jerry Canttrell fan, by any chance?

I thought it was perfect