To find the growing narrative of over diagnosis (autism, adhd and mental health) upsetting and draining

[Frazzlesforever]

There seems to be a drip drip of press headlines and change in the conversation that too many people are getting diagnosed. And that some parents are being too pushy to get extra help or trying to get be benefits etc.

As the parent of a high masking autistic girl I had to push for diagnosis although the school just saw a highly compliant, quiet anxious child. My daughter is now extremely mentally unwell through not coping in school, has had to drop out of school missing her gcses, emergency CAMHs involvement - devastating for her and us.

She is exactly the type of child who would fall under the radar. Just an anxious child with over anxious parents. Apparently seeming to cope until she just couldn't. Surely if anything we need better understanding and support for these types of children not less. Otherwise we also risk kicking the problem down the road To severe problems in adulthood. - poor mental health/outcomes etc.

Okay but imagine being that child when it wasn’t even acknowledged as a thing

Exactly. I find it a dangerous word when it also entails making the effort to comply with society's rules and necessary expectations. Those things should never be painted as negative, even for people with a diagnosis.

Completely agree.
We all have to learn to “mask” to have peaceful and functioning work places etc.

I was diagnosed AuDHD in my 40s. The ADHD wasn't expected. I knew I was autistic - I'd known for over a decade. Or at least I knew I met a lot of the criteria for an autism diagnosis but wasn't sure I was impacted enough to qualify for a diagnosis. Autistic burnout hit when a combination of stressors hit at the same time and my coping mechanisms couldn't deal with everything at once. Autistic burnout made me suicidal and was the reason I went for a (private) diagnosis. People cope until they don't. Whether or not assessment is 'needed' is really up to the individual - I wouldn't have accepted I was autistic without a third party confirming I wasn't just using it as an excuse and I needed that. Hasn't cost the UK government a penny.

My daughter was diagnosed as a teenager and is in the bucket where she would never have been diagnosed if I wasn't hyperaware. She's definitely autistic (I'm less sure on the ADHD diagnosis) - it's become more and more obvious as she's gotten older. She wasn't poorly behaved - school reports were fantastic.

I do sometimes think that there might be misdiagnosis of ADHD - a lot of diagnoses are based heavily on self-reporting and I've seen a few people where ADHD is the 'easy' diagnosis but where I suspect there's actually something else going on eg CPTSD. I've also seen someone diagnosed with ADHD following a brain injury - I'm not saying that's not possible but I was always suspicious that was a case of matching symptoms to the condition rather than a correct diagnosis.

I disagree on misdiagnosis of autism. In fact I know someone who has had a least three autism assessments and has been told they're not autistic each time. That's despite there being external characteristics that might lead someone to conclude autism.

Neither mean overdiagnosis. Misdiagnosis isn't the same thing. I also know a fair few people who have gone for autism and/or ADHD assessments and have not been diagnosed. It's not a given that you get an assessment and they give you the magic badge.

The definition of autism was expanded to include Aspergers, but it wasn't expanded over and above that. There isn't a body of people who wouldn't have met diagnostic criteria for one of Aspergers or autism before, who now do. And in practice the number of diagnosed autistic people is very low. I'm not aware of anyone else from my class at school with a diagnosis and I suspect that the nature of the school would have led to a higher than average number of autistic students. There isn't an explosion in 'over diagnosis' at all. There's a correction.

Absolutely dangerous. Particularly when you are telling developing children that instead of correcting their desire to always go first, or whatever the issue is, is because of an issue that is down to a 'diagnosis'. It reifies their behaviour and gives them little hope of ever doing anything differently.

Oh well sorry for wasting resources and all that. I was initially diagnosed with MH issues so was just given ADs for 25 years before someone realised there was more to it.

Do you realise that MH issues are often caused or exacerbated by undiagnosed ND?

You are saying that if you have managed to survive (not live) with it for so long then you don’t need help?

What do you think those of us with a late diagnosis are taking away from people? Without research they wouldn’t realise girls/women present differently.

If you could explain what I shouldn’t have taken from the system (into which I have paid since I was 17) then I will endeavour to put things right

I have limited knowledge about neurodiversity diagnoses and what that actually means but I do know that parents use ASD/ND to excuse shit parenting and feral kids all over munsnet and presumably in real life as well.

Before you all jump down my throat i dont mean that parents of ND children are shit or that ND children are necessarily badly behaved but that its become a catch-all term to explain any child's behaviour or challenges. And people are fed up with it which is where the kick back is coming from. Some kids are just naughty and need proper discipline. But you can't say that because the "he has ASD" flag is waved.

FWIW I suspect my DD may have ADHD (fairly mild traits but some evidence of masking) but I'm not pursing any kind of diagnosis at the moment. We are focusing on ensuring she has what she needs to cope with the world now and in the future and its going well. For my DD this is the right thing to do.

I was diagnosed within 8 weeks of being referred by my GP.

The NHS mental health offices I was referred to is, when I attended and I think still is the one with the shortest waiting list in the country

FWIW I can see why it has such a short waiting list. The whole process is different to other areas.

I would say that other areas waste at least an hour for each patient they have through their doors
Each person is having 3 or 4 appointments instead of 1. That means 2 or 3 extra appointments and 2 or 3 extra appointment letters

Whilst the queues are still going to be long it will though knock years off the wait time if other NHS units followed how this unit operates

It doesn't work that way
You csnt just say my child needs High rate care please and they give it you no questions asked.

And those of us late diagnosed who have assumed that any inability to do things is down to being thick? We haven’t hidden behind our diagnoses.

Often it’s a case of being able to do something in a different way. For example a room packed with people. Although I can stand in front of a room full of people and speak!

Previously this has caused me to throw up for 3 days and nights before an event and then go into panic mode when there.

Now I have the option of attending by Teams. It affects nobody but it’s the difference between being able to attend and join in and spending the entire time trying to fight the urge to walk out

Posters on mumsnet always give out arm chair diagnoses but that means absolutely nothing.

The first 2 examples I'd hope I'd spot and on explanation understand. Children going silent isn't that unusual, often accompanied by looking at the ground and non verbal communication of a shut down. The third one is less relevant at secondary because they don't play. However autistic girls can find the social dynamics really tricky to navigate and often gravitate towards each other. They tend to enjoy structured lunch clubs. All of that I can see and write about.

I have genuinely taught kids (esp girls) who have no tells, or only tells you'd notice if you saw them for a lot of time. For a teacher seeing them once a week for an hour, they won't notice. That's not a failure on the teachers part.

Well good for you. Hopefully your daughter won’t resent that decision as she gets older.

A lot of people don't really understand what autistic masking is.

It's not code-shifting which is behaving differently in different environments (and I completely agree that the 'authentic self' stuff is BS). Everyone has to code shift. It's also not about learning to take your turn.

Masking is about masking autistic traits. It's about learning not to stim in public because you'll seem weird or finding a way to make it appear like you're making eye contact when you just can't (I don't make eye contact with DH!) or having a coping strategy for how to react when you just don't have a clue what the joke everyone else is laughing at is. A lot of the time autistic people are masking in nearly all settings, not just adjusting small parts of their behavior in particular social environments.

Are you only allowed to join via teams because of your diagnosis?

The misconception about autism on this thread is that it's not that autistic people don't want* to comply with society's rules, but that they don't understand what society's rules are.

*obviously some don't but that's not usually got anything to do with autism but more because people are people.

Yes I am. My employer has made a couple of small adjustments and it’s transformed my job and enabled me to move into my dream role (where being ND is an advantage)

Not everyone is on the spectrum. If we were why is it a diagnosis?

our entire benefits system needs an overhaul and we as a country need to grapple seriously with what it means to ‘need’ social welfare, and where the state becomes responsible. I don’t begrudge your son his support and have no idea of his needs. I also have family who need/use the benefits system (some are imo getting massively more than is reasonable but that’s more because the providers of housing, social support are hugely profiting from the current system) there are a whole raft of very expensive things people need and we can’t keep paying for them all. Usually overpaying some private provider to offer what the state could at a fraction of the cost if we had a better infrastructure.

I work with a host of autistic diagnosed young women and older women, and many of these people do not have ‘autism’ in the sense it was understood up to the change in diagnostic criteria. I am not saying these people do not struggle in myriad ways, but in many cases diagnosis is reinforcing the sense there is something remarkable, which it is other people’s responsibility to fix. When in fact most everyone to some degree struggles socially, has to ‘mask’ in order to be accepted, finds aspects of daily life overwhelming etc etc. Heightened sensitivity in this regard…is not unusual.

I completely agree with you. I have worked with young adults with severe autism who were completely distressed at anything they were not used to, would fixate on episodes of tv programmes going around on a loop, wore nappies and were spoon fed. I also have 60 year old friends who have paid privately, been diagnosed with autism and now ‘understand themselves better’.

Disabillity have never been based on diagnosis
They are based on need..

I was diagnosed at 35 by my psychiatrist. Unfortunately not the right psychiatrist so my diagnosis is still unofficial, but it is what it is. My mental health and executive function collapsed when I was 33 and I ended up under the psychosis team. Medication doesnt help much because my symptoms are caused by a massive autistic regression. Its the people like me who slipped through the net because we masked well and had low support needs, that are the ones getting picked up in childhood now. Hopefully a diagnosis will lead to them getting appropriate support before they reach crisis like I did.

Im also sick of the clichés "oh everyone's somewhere on the autistic spectrum" "you're too normal to be autistic" "I reckon I'm a bit autistic too"

It happens a lot unfortunately. They'll dx the autism but not other arguably more serious for the yp conditions. It's money saving like everything else.

Severe autism usually means those with severe autism not severe mental health needs.

Those who I would refer to as having severe or profound autism don't have fluctuating needs or levels, they would be high support at all times, every day. Classical autism, Kanners. They can't mask and are obvious, usually diagnosed in early childhood.

Mh needs def need diagnosing seperatley to help those with these needs get the support they need. If a yp is self harming, I would prioritise having those needs met and recognised. Not everyone with autism has mental health needs in the same way not everyone with autism has any other additional condition.

Autism isn't a mental health condition.

Yes but they would have been diagnosed with Aspergers.

Too much is being made of the combination of the two diagnoses. I couldn't care less personally if the profession wants these split out or together, but the reality is that people diagnosed with autism now would have been diagnosed with one of the two before. It's not that there has been some massive expansion, it's just that two diagnoses have been combined into one.

Same thing with when they merged the hyperactive and inattentive forms of ADHD into one diagnosis.