'Increase' in ASD/ADHD

[Sunsnet]

There are a lot of discussion at the moment on this subject and many people who believe that people are faking these conditions in themself or their children. This makes it very difficult for those with these diagnoses to be taken seriously and feels like a massive attack and dismissal of their genuine struggles so shouldn't the question actually be, why is there a massive increase in Munchausen's and Munchausen's by Proxy (child abuse)?

Our local private neurodevlopmental clinic is fully staffed by an identical team to the local NHS service. They all seem to do 3 days NHS, 2 days private. Follow the same assessment process too. One you pay £2500 for, the other is free.

@Mumofsend same with where we had DC and myself diagnosed; they do the bulk of NHS assessments in our area… but you have to wait 4yrs to have it free.

We went back into NHS services having reports ratified as no private services exist (other than diagnosis). And also the school wouldn’t accept report until transferred over to NHS.

So surprised that anyone with ND kids is speculating that a valid diagnosis can be bought.

I do know someone who insisted their child was ASD.

School didn't see a problem GP didn't see a problem.

She paid for a private assessment and now has a diagnosis that no one else excepts.

I think these private clinics are just in it for the money. Once they diagnose ADHD then there's the private prescriptions that cost.

I think there are more children with ASD and ADHD in mainstream now-it may be that there is more awareness so they are being assessed earlier, but it’s not just that.

Huge numbers of pupils with SEN seem to have been prem, so there are pupils that sadly wouldn’t have survived, now in schools-particularly those with physical needs. This means that special schools are full of children with hoists, PEG fed, visual impairments, in nappies etc so that there is no room in special for those with ‘just’ autism so we are seeing them in mainstream more.

Part of my son’s diagnosis is PDA. I can assure you it is nothing like normal child behaviour, and no clinician would diagnose normal child behaviour as PDA. My child was diagnosed 9 years ago. I’ve been told that now they’re taking into account lockdowns with behaviour patterns.

I’ve noticed a weird sort of hierarchy amongst parents, where PDA is often dismissed as poor parenting. I mean, you kind of expect it from the ignorant twats who start threads like this, but it’s shitty when you hear it from people who really should know better! It’s like people really expect children to look autistic, or it absolutely must be someone else’s fault.
(Not aimed at you @Mumofsend , it just strikes me that often this is the case!).

Whilst my son can maintain a mask very well, and is very sociable, his life is impacted hugely by it.
If he’d been born when I was born (1970s), he would likely have managed. A less pressured education system, a softer approach to truancy, easily available practical options, chance to easily access apprenticeships across a whole raft of trades. As it is the pressure at school meant he couldn’t cope at all, and was in meltdown for the best part of 6 years until we felt forced to withdraw him from school.

What do we have now in the UK for autistic pupils? Classrooms that are sensory nightmares (I couldn’t go into my son’s primary classroom as I couldn’t speak in it!), pressure from the word go to perform, to meet government mandated targets, fewer special schools so higher numbers of SEN children for teachers to meet the needs of, strict attendance limits.
PDA is largely anxiety led - it’s no wonder that’s a growing area of interest in the autism world.

Education needs a total overhaul, in many areas it’s barely fit for purpose, let alone for disabled children.
Posters such as the op need to start looking at the structures in place that are creating this issue, rather than calling out the children and their families who are suffering because of it!

No problem!

@SnorkeMor - "IME the only private clinics offering assessments that lead to support are ones where clinicians also work through the NHS, as otherwise the diagnosis lacks credibility and support cannot be accessed."

That's not actually true - the NHS will recognise any diagnosis performed according to standard practices (with the accompanying full diagnostic report). It's based on evidence, methodology and conclusion rather than the person who performed it. At least, that's my experience and that of the (many) autistic folk I've spoken to.

I'm certainly grateful for private clinics - I would never have done mine through the NHS (even if my GP hadn't been an a-hole about it and refused to even consider it), because I'd rather a child could take that rare slot and be given the support and opportunities I never had a chance at.

"People can self identify as much as they like, this doesn’t translate to anything useful at all for them."

I disagree - it really can. It often goes hand-in-hand with spending a lot of time talking to other autistic people online - not in a "watching TikTok videos" way, but rather in a "can we talk about this like adults?" way - and gathering both evidence for/against and ideas for coping mechanisms that they haven't thought of yet, as well as acceptance after a life of feeling rejected and completely alone.

I joined a Discord server for autistic and ADHD folk that has a healthy mix of formally- and self-diagnosed people back at the beginning of my "research/maybe" phase, and in the couple of years between my epiphany and formal diagnosis my life was radically changed by a) realising I wasn't an aberration/the only one, and b) getting tips and ideas from those who'd gone before.

For autistic adults in the UK, we all know there's nothing remotely resembling state support anyway. However, that's not the only support that can be useful (thankfully).

Anyway, to answer the original question...the "explosion" in diagnoses can mostly be explained by the fact that there are currently several generations of people suddenly making the realisation that they could be ND rather than just broken (and the consequences of that actually increase with age for those of us who learned to mask early and thus slipped through unnoticed - it gets harder and harder to keep up the pretence of being typical as we get older). Give it 20 years or so, and it'll even out.

I agree with you @ForTheLoveOfSleep , I think the needs of people like your child are very much sidelined nowadays, with higher functioning people being more noticed.

At my work, a tech company, there are quite a few ‘quirky’ people who may or may not fall within the ASD diagnosis but I can see that they could, with the criteria I see discussed on boards such as this, but they appear to be very successful (certainly well paid) and happy individuals. There is one woman employee who is clearly autistic, and great at her job, and everyone gladly makes adjustments for her in terms of how we communicate with her. This is as it should be. Should someone with ‘lesser’ symptoms be diagnosed and adjustments made? How many people would then have some ASD traits? Eg I can see my DH and nephew being potentially diagnosed but I personally don’t think they need to be, and neither would they. And dare I say it, if I look at the criteria I think I could possibly fall within the definition too. I have no idea where a line should be drawn and what this would look like.

I don’t know whether greater diagnosis is a good or bad thing really. Maybe like many things, it’s a good thing, but there may be some people or their parents who do try to ‘exploit‘ the current environment (to try to get more time in exams??) but I don’t know enough to express an opinion on this either way.

But I do think that those who are severely autistic face being forgotten about. A family friend has been in that category for many years - diagnosed at three and now nearly 50, and his elderly parents tirelessly and compassionately watch over him still.

And there will be instances of undiagnosed ASD where someone would otherwise be unfairly discriminated against, like my lovely female colleague at work.

Sorry for the waffle - I don’t really know what I am talking about.

You buy the assessment not a diagnosis, the private psychiatrists should follow the same DSM criteria and work with same diagnostic tests as NHS, there certainly are people don't get diagnosed, but few would bother to spend money if they weren't already fairly sure themselves.

The anger should be aimed at why children/adults have to wait years to get diagnosed and feel have no choice but to go private. Why so many professionals are not aware of or uptodate with current research ASD/ADHD to even think of screening these undiagnosed people before they had to find out themselves via SM awareness videos. I was continually treated for depression & anxiety and made to feel was my own fault when treatments didn't make me better, unsurprisingly as root cause was ADHD.

If privately diagnosed, GPs don't have to take on prescribing the medications on NHS and local adhd service may reject so you can end up carry on paying £100-200 a month for meds (+ extra for psych reviews) for the foreseeable and need to go on NHS waitlist anyway so you've a chance of them taking it over eventually.

I disagree - it really can. It often goes hand-in-hand with spending a lot of time talking to other autistic people online - not in a "watching TikTok videos" way, but rather in a "can we talk about this like adults?" way - and gathering both evidence for/against and ideas for coping mechanisms that they haven't thought of yet, as well as acceptance after a life of feeling rejected and completely alone.

Yes you’re right, sorry, I was meaning more that self identifying won’t lead to using up hard to get resources, that are basically impossible to get even with a diagnosis!
Eg @newbeginnings20 example further up the page - an invalid diagnosis not accepted by NHS or school is just an out of pocket experience for the parents and does little else for the child.

Aha, I see what you mean :)

It’s inevitable that women will self identify way before assessment, because so many of us weren’t even on the radar as children.

My diagnosis (which to some might seem pointless) changed my life. I can do things now that I’d never have been able to do - simply because I know myself well enough now to find work around and way to manage things. I don’t think it’s bad to want the same for my children.

Most of the neurodevelopmental diagnostic clinicians I know (I know a LOT - I'm in the minority as I'm one not ADOS trained in my team) do 3 days a week NHS... the rest of the time they're non working days because we're all just bloody cracking under the strain of the demand for services versus hours in the day.

I'm autistic. Good, professional, NHS clinical job - so yeah, must totally be making it up for internet brownie points stimming my arse off on TikTok mustn't I? After all I can sit and function through a day of meetings with complex clients and do so at a level good enough to have me promoted rapidly - so no issues for a diagnosis at all.

But you don't see the impact that having to maintain that level of social performance (I no longer mask - I don't give a shit if colleagues see me stimming, or if they're aware that my "eye contact" is anything but - but I still have to maintain a level of social performance and dancing along following some kind of semblance to the steps of the social interaction dances) has upon me in terms of the additional cognitive load it requires for me to sit through this compared to my peers - the constant "social monitoring" script that I'm running alongside my daily workload script to check that I'm doing things well enough to not screw things up. You don't see the panic attacks that working through this causes before I go into the office on the morning, or the ways I have to juggle things to make sure that I don't burn myself and tip over into a meltdown or shutdown - I tend to go into shutdowns more; meltdowns are quite rare for me these days. You don't see me when I do end up in meltdown and my ability to speak completely falls apart (which is both terrifying and really really fucking annoying for someone who makes their living as a communicator).

What you see, is the carefully curated performance of someone who you might think is "oh they're just a bit quirky and why the hell are they claiming they're autistic" - because, well, I'm not going to let anyone other than those I trust INCREDIBLY see the other bits of what the reality is like when I'm not spinning all the plates required for me to function on a daily basis. I'm also not bloody going to quit a career I love and I'm fucking good at for an easier life and to reduce the load down - I am bloody blessed with colleagues and management who support me, and I'm insanely utterly incredibly fucking lucky that I'm in a position where I'm in a job where I can generally use the fact I AM autistic as an asset to how I relate to people, and also work with a team where I can be as open and true to who I am as an autistic person as I have ever had the privilege of being able to do in my entire life. I can only do that confidently because I have the diagnosis I do.

@newbeginnings20

… they are there to meet demand…..

We weren’t prepared for DC to suffer unnecessarily for 4years when we could afford a private assessment.

The bulk of work most providers are carrying out is NHS anyway…

As for the prescriptions, as drugs go they are quite inexpensive and the payoff goes to pharma companies not the clinic that prescribes.

Had the conversation today with a colleague who works in a new service supporting autistic people - they have absolutely no gatekeeping about private vs NHS diagnoses. The tales of private diagnoses not being accepted I think are completely over exaggerated at least for autism - the only time we've had issues (my daughter is also autistic) was with one class teacher who also decided that she didn't believe various other diagnoses that my daughter had obtained from within the NHS. Wasn't a private v NHS issue - it was a one woman being an absolute turd of a teacher issue.

Sorry, thunk my point wasn't clear. It's not the PDA I'm dubious about. It's when you read any slight parenting query and you get lots of "sounds like pda" when it actually doesn't. One of mine has pda within their profile and it is very different to typical child behaviour yet any child who doesn't want to do as asked is suggested as having PDA.

Another thing to bear in mind is that there are probably many people like myself who fit the friteria according to online screening tests, but then take one look at what is needed to get as farcas an assessment and then get overwhelmed and give up.
I guess this would fall into 'executive dysfunction' but I wouldn't dream of co-opting an ADHD diagnosis -I am just generally crap at being human.

And it obviously then leads people deciding their child has PDA because Paul on Facebook said typical child non compliance is PDA.

Yes to this! I have ADHD, not autism, it so much here rings true

We are waiting for an assessment and in lots of ways DC isn't impacted or effected but are two quite major things that do really effect his life. I have had people tell me I should be parenting differently and it is quite upsetting as we have clearly tried all the obvious parenting solutions. All I want is to know how to offer better support to him and it is going to take years to get to the assessment and it has taken quite a bit of effort even to get this far.

@howshouldibehave

I think you’ve got a point there, and it’s really sad that more capable students are being denied attention/a place due to an influx of kids with much more complex needs.

However, there is a parental choice component having influence on the number of mainstreamed auties and a greater capacity than previous to support them within mainstream (though still not enough).

For us personally I am very against DC going to a special school. Someone we know sent their child to one; a child not dissimilar to ours. Within weeks of attending the child came out of school crawling along the ground because this is what they witnessed in a classmate and now they do not have a firm grip of even basic education.

By contrast our DC is surrounded by predominantly NT, though I’d say about 10% autism in the class, and is thriving. We hope to have 1:1 to bring the academics in line… but I just do not see what purpose it would serve to have DC in an environment with very severely disabled children when the environment he will grow up into has mainly able bodied NT.

Essentially, aside from anything educational, we are using it as a training school so he has some skills to cope with people in adult life… a special school doesn’t provide that environment.

...sounds like a service an awful lot of people here might like to know about.

Care to spill the beans? :)

I'm amazed at the sudden increase of adults with adhd and that seem desperate for a diagnosis.
I tick every box on the adhd symptoms, but I've not always been like this, it's because I am going through menopause. I bet loads of women are like this, or suffering anxiety, why are people so eager for a diagnosis, to be put in a box?

@Rubyupbeat

Diagnosis gives

• protection against disability discrimination
• reasonable adjustments at work, school/college/Uni
• access to support services and treatments (drugs for adhd)
• access to funds via DLA/PIP/disabled students allowance/special support grant/family fund/disabled facilities grant/carers assessment etc
• access to support when travelling (special assistance/bus cards etc) and when going to the majority of places (free carer ticket at cinema, theatre, concerts, etc etc)

It also gives you an understand of yourself whereby you can learn more about the condition and find strategies to improve your life. It really does make an enormous difference.