‘Interesting’ article on overdiagnosing in Times.

[Soontobe60]

Just putting this here for discussion.
https://www.thetimes.com/article/9f82545c-57f5-4db2-8a47-9a8cc2304243?shareToken=c0f809004b0c59cf1b96f6b6eb6129c3

One of the biggest conversations at the moment is the discomfort with ASD incorporating such extreme ends of presenting need, that will continue.

Some asthmatic people need to use their inhalers infrequently. Others need multiple inhalers per day and have to vacuum their beds and homes daily. Both are asthmatic. The same applies to autism.

And we recognise that some peoples asthma is very mild and does not really interfere with their life, and some peoples asthma is severe and has a massive impact on their life.

Yep, mild or severe asthma.

Mild or severe ASD or ND

Or as my sibling has, high functioning/Aspergers is the diagnosis.

My dad never diagnosed is obviously autistic

He has no friends
He is extremely creative and an amazing problem solver
He is happy alone making things working on motorbikes etc
He was an amazing fun grandad but struggles now the kids are teens

My dd is the same very intelligent and creative but bombed in sixth form. Has friends but forgets to text them.
Is very demanding avoiding. This is her main difficulty
Has a lot of anxiety. Fear of vomiting. Just had a huge melt down as we accidentally gave her a piece of under cooked meat.
Won't touch food out of date
Now this has happened I'll have weeks of her questioning what I'm feeding her.

I'm a carer. Not in the way most think but if I'm not there she will forget her meds. Won't cook for herself. Will starve all day then orders a takeaway.
Doesn't wash enough Goes out in some weird outfits.
Won't seek help. I often get panicked phone calls if something has gone wrong like missing a bus. She can't problem solve it. She works part time but is knackered and has to regulate herself for a day or so.

My birthday week was lovely but it exhausted her so much it took a week for her to recover

The amount of money she has wasted on unused tickets. Driving lessons etc is huge

But people won't see that. All they see is a bright heavily masking young lady and if I told them she has pip and I get carers allowance I'd be accused of taking the piss out of the system.

Yes this.
I do agree to an extent with @JoyousGreyOrca ’s comment, as that’s what I did for myself over several years. But I could only do it, ironically, because I was diagnosed autistic and had the opportunity to look at my life and make sense of it, and work through it all and recognise the patterns that had led to mental illness, and learn to accept them rather than trying to change as everyone around me kept telling me, and gradually stopped seeing “my way” of doing things as being wrong.

You can’t go to someone depressed and tell them to just choose happy - at the right point in time with the right self motivation that’s something that can profoundly change your life, but you can’t just switch it on unless you’re ready, and certainly not because someone tells you to because your constant anxiety is inconvenient to them.

Why isn’t that just ‘anxiety’ then?

That is anxiety! Its not worse or more easy to deal with dependent on whehter someone is ND or not.

@HeBeaverandSheBeaver Your description of your daughter sounds like a close friend of mine years ago. She would lose her purse and keys on a weekly basis, was over trusting of strangers, wore strange outfits that she thought matched, missed appointments as she forgot them, struggled to sleep, was constantly late. But someone with her was not diagnosed with neurodiversity when I was younger, so she just did her best,

She got a full time job and still works, is married and has two grown up children. All those behaviours still exist, but she managed better than I think she might have if she was diagnosed.

I was anxious and depressed. I still get over anxious. But you have to find ways to manage this. It gets called masking by many, I just think it is about trying to live a better life.
We can lean into our issues, or try and steer away from them.

By social aspects of set texts, I mean stuff like what a character was thinking and what they are trying to get another character to do. I couldn't see that and still struggle now. There's a bit where Lady Macbeth talks about dashing her own baby's brains out sooner than backing out of a plan, yeah? My reply when asked why I thought she'd said that was "I don't know".

Teacher: "Well, what do you think she's trying to get Macbeth to do?"

Me: "Divorce her? What kind of man would stay married to a woman who claims that she would kill her own child?"

Now extend that across the whole of English Lit.

It is telling that, in PSHE, the teacher asked each girl in turn what she'd do if her boyfriend hit her. Girl after girl said things like "hit him back" and "ask him why he'd done it". I was the only one who got told that my answer was correct; I said "leave him". So I reckon there's some small advantage to being autistic: you learn in the playground that someone who hits you once will do it again and you apply that pattern to everyone who hits you forever without being distracted by the possibility of determining their motive.

@selffellatingouroborosofhate We were not asked what we thought. We were just taught why lady macbeth reacted the way she had.

I think the comment you quoted was referring to the findings that teaching mindfulness in schools is found to be counter-effective, in that unhappiness and negative outcomes rose after the intervention. (Rather than simply a comment on those who do experience anxiety.) The theory is that making children aware of their thoughts can lead them into rumination and negative thought spirals; to be fair, mindfulness is a powerful tool but needs to come with provisos and guidance, and it’s not for everyone. It’s not recommended as a first-line intervention for people with depression, for example.

Anyway, I do think there is something in the idea that some mental health conditions are over-diagnosed, and sometimes, people experience low mood or heightened anxiety and assume that as an identity, rather than understanding that low mood and a certain amount of anxiety are normal parts of life. Just as the social media reels showing traits of ADHD- which could easily apply to most busy women in their forties- might make lots of people think they’re ND. I think the article in the OP has some merit and the book is likely to be quite interesting.

How can CANCER be over diagnosed??

Yes, we do. What we don't do is claim that the mildly-asthmatic aren't really asthmatic at all and don't need a diagnosis and don't need their reliever inhalers.

An autistic person with low support needs is still autistic and they still have some support needs. Those support needs might need no extra humans because, for example, permission to wear sunglasses in the classroom/office/etc doesn't require a TA or PA. Nonetheless, even the most mundane reasonable adjustments are a support need.

But you need to understand the issues in order to do that.

Being autistic adds other difficulties that cause the anxiety and depression, as a pp spelled out. For me sensory issues cause a lot of anxiety, but because I was diagnosed I was able to understand that and work out how to manage it. Before I was diagnosed I was faced with a world that says “this is loud for all of us but we manage” and suchlike, which led me to genuinely believe that I was just a crap
human because I wasn’t managing.

I’m working now because I was diagnosed. Before that I barely left my house.

My son is working because he was diagnosed, because we were able to facilitate his life in a way that suited him, which we didn’t feel able to before he was diagnosed because the behavioural experts brought in to school (by the teachers who repeatedly told us he was fine 🙄) expected us to follow their parenting suggestions even though they made things worse, and didn’t believe what we were telling them even with videos showing what was happening, and because my life was filled with of people gaslighting me about my own experiences I was conditioned to believe they were right and I was wrong. If I listened to them my son would undoubtedly be in prison. As it is he’s now working full time. Because we were diagnosed and felt empowered to do things in a way that worked for us, not the NTs around us who constantly feel they know best about autistic people.

Edited to add: learning to cope with anxiety isn’t masking. Masking in autism is when you ignore all your needs and put on an acceptable face so the others around you don’t pull you down for not being like them. When you know that needing things like breaks or some help to understand something mark you out as different so you mask it and go without whatever you need, so when you are finally out of that situation you literally cannot function - but that’s not a side that anyone sees, so we’re all good. But the more you mask the worse you get, until you end up having a breakdown or a meltdown and people still don’t get it, and just shake their heads or tut because you’re just being dramatic. That’s what masking is, and does in autism. It’s not fake it til you make it.

It’s the distinction between cancers that are progressive and those that essentially will never progress to anything life threatening. Screening picks up both but addressing the issue means reducing screening, which in turn means more people would die of undiagnosed cancers which could be successfully treated if picked up early enough.

@JoyousGreyOrca

But your friend never has had the opportunity to understand herself and that's sad.

My DD learnt what will burn her out now, such as a busy social week and her mental health has improved and also her physical health has improved since diagnosis.

I honestly believe if we didn't have a diagnosis her MH would have lead us to either an ED or extreme OCD or self harm or worse.

Expectations in teens of gen z are huge. School exams uni. No chance of a house really. Peer pressure is massive due to social media. Your friend is of a different generation I presume. Add ND to that and boom.

I also agree with others that we need a new name for Asperger's rather than one big umbrella.
For all on the spectrum's benefit and understanding.

To compare to your friend
My dad walked into an apprenticeship at 17 worked mostly alone using his hands.
Made a Good living More
Choices Housing was cheaper to wage and social
Houses was available too
He still has had some MH issues though over the years. He doesn't know but it's obvious to me now I am more educated. I won't tell him now what I think as He is now 76 but maybe he has figured it out since my dd

All Teens in general are living a harder life compared to us in many ways.

Different times so please don't compare.

I was unable to memorise that kind of information, still am. I can learn patterns but not patternless nonsensical "because my English teacher said so" stuff.

We had class discussions on the set works. I also had targetted help 1:1 before the school gave up on me for Eng Lit, in which I was asked these questions.

Did you get "surprise" short texts in the exams, actually printed in the exam paper, that you had to analyse without the benefit of being spoonfed the approved answers first? We did, and that might be why they wanted us to analyse the set works in group discussions ourselves.

Because it’s a co-morbidity. ND itself isn’t a mental health condition but very many ND people have serious mental heath co-morbidities, such as the type of anxiety this poster describes. It’s not the same as the type of anxiety/depression others experience and are treated for from time to time.

@SecretMoomin
You are my hero. You absolutely get it.

What’s the difference?

I think this is a poor example of what you're trying to say. People are different, thats the point, some people have an idea of something and are imaginative, some people arent, its not a flaw or 'wrong wiring', its just different, sometimes useful, sometimes unhelpful.

In my view, there is little point in asking questions like that in English lit, it makes no sense and Im someone who almost has second sight skills in understanding what someone is thinking or what their intent is.

Just picking up on the discussion around what happens to some children when they start secondary school, again I would say this is a systemic issue, an issue about what we think schools should be and how they should function, its not natural and so will engender unnatural responses and behaviours from some, its inevitable.

I’ve just explained it. As did @newname33887. It tends to be much more severe, often requiring second line consultant led treatment as opposed to standard primary care from GP’s.

Abso-fucking-lutely this.

Before I was diagnosed I was faced with a world that says “this is loud for all of us but we manage"

"Why do you have to be so weird, Ouroboros?"

"Stop scratching! Everyone else manages to wear tights without scratching!"

"We're all sick of hearing about your cat."

"The lights are bright for everyone but they aren't shading their eyes with their hands."

"Stop humming!"

"Are you talking to yourself? You need to see a mental health doctor."

"You're such a crybaby."

"I cannot believe I'm hearing this."

But yeah, "mild" autism is just like being neurotypical.

We all have some cancer cells in our bodies every year, For most people our immune system deals with them and they cause no issues. For some people they stay, but the slow growing cancer causes no issues and would either disappear on its own, or would grow so slowly that people will die before it causes any issues. For such people diagnosis can lead to treatment that is unnecessary with side effects. Even for those not treated, they can experience anxiety and depression as a result of worrying about their cancer.