Who's read 'Age of Diagnosis' (overdiagnosis in Long Covid, ADHD, Lymes, autism, cancer screening)

Not sure I agree it’s over diagnosis regarding ADHD & autism we have legacy of rigid systems and under diagnosis in girls and women persists. There are extremely long waiting lists (7 years locally for an adult 2+ child) so many struggle on with proper support and no access to medication.

ME/CFS, Long Covid hugely underfunded areas so lack of services for both support and treatments despite potentially devastating and severe impact on daily living.

Early alzheimer’s/dementia support can be given for example by specialist neuropsychologist.

I agree with first do no harm principle of medicine, but having an understanding and support for management of ones condition is usually helpful.

There aren't two categories of autism. There are three official levels, but even that's not so good at showing how an individual is affected. According to a leading specialist in my area, there are three key autism 'types' in terms of key presentation traits (as opposed to levels).

Functioning labels are rejected for a reason as they are based on what you see, not on what the person experiences. I know a so called high functioning person who took their own life. They had a job, they were doing incredibly well in life as far as society measures that, yet the toll it took for them to do that was too hard for them to deal with. They were actually low functioning internally but that wasn't able to be observed.

If they 'grew out of it' they were never autistic in the first place. You don't outgrow autism.

@Namechangedformyanswer where are you getting that info ref assessments and diagnosees being banged out?

For Autism, the ADOS assessment process is the standard according to NICE criteria. You can't ' blag' this. It's exceptionally thorough and multi disciplinary in most cases. The lack of true understanding and education on this is the problem. It's easy to get swept away in these stories.

Private clinics certainly are making a few quid out of all this. That's what private clinics do though. The reputational risk of dishing out a diagnosis just for LOLs doesn't make logical sense.

What benefit is it to a clinic to ascribe a diagnosis falsely? Show me one person who thought they were Autistic and were wrong? I never thought for one second I'm Autistic. I know I'm not. My son is and I sat in on an exceptionally thoroughly assesment.

Show me a person who thought it would be to their advantage to pretend to be Autistic and thus pursue a diagnosis?
You can't fake it easily if you're undertaking the correct type of assessment.

The problems we have in reality is the opposite. Stories of NHS pediatricians ' screening' and deciding no. This is bullshit. What screenings did they do? What did that involve? Was that ADOS based? I seriously doubt this. They probably made their own shit list with ' do they wear headphones ' ' do they line up trains?'. 🤦

There are some total numpties when it comes to this working with Autistic people all the time.

. Yet again it would be women and girls missing out- it’s well known that menstruation, childbirth ,
menopause are particularly hard for those with autism. Couple that with masking being more prevalent in the presentation of autism with girls and we’d be back to square one.

You seem incredibly dismissive of other people - is this the autism Olympics? It's actually not a zero sum game and you have no idea what another person's experience is like. I have a profoundly disabled niece, who meets all of your descriptions of someone worthy of diagnosis and care. However she's usually happy as Larry and is well-supported via public health interventions. Her autistic cousin who can read and talk and do all the things you think makes her less worthy of diagnosis and care recently was hospitalized after a suicide attempt at age 10. Her parents were banging on doors for years trying to get help, but even with diagnosis because she's "high functioning" none was available. The professionals all now so surprised this child reached a point of distress where she tried to end it - at age 10!! "Why didn't you tell us?!" FFS.

Pull your head in, you have no idea what you are talking about.

What happens if an autistic person was severely autistic to begin with, then grew out of it? Or started out with less issues, then with the stress of life, the issues became more obvious and intense? what if they have high functioning traits and low functioning traits?

I think autism should have more than 2 types. My youngest is extremely autistic and emotionally delayed. However he doesn't have learning disabilities so he is considered to be what used to be Aspergers syndrome. My eldest is autistic as well but with no other problems. Very academically able and with a lot of support has been able to have a job and go to university. My middle son has autism and mental health problems. He can't look after himself but that's more to do with his mental health problems than his autism.

I don't think having 2 categories of autism is helpful (high and low functioning). Lots of people have autism with something else like learning disabilities, adhd, dyslexia, mental health problems, pica and the list goes on. Many people have 2 or more of these things.

Also I don't know how this would work but somehow we need to make it so the disability/health admin is easier. I've literally spent hours on the phone this week trying to chase up medication, test results and pip/dla forms. Then I have spent more hours filling in forms and gathering evidence. It's so hard and I have wanted to hang my head against a brick wall in frustration more than once.

In terms of global diagnosis, there is quite a marked disparity - with the UK pretty much comparable to other more individualistic societies. Collective societies are more prone to under diagnosis.

Yes, I've read it, and I would once have agreed things like ADHD.autism are overdiagnosed, until I got involved with the realities of that community. I now think they are actually under-diagnosed, especially among women.

I was on a course a few months ago where one of the speakers made this very point. She was of the opinion that women and girls are often misdiagnosed with personality disorders (usually borderline PD or emotionally unstable PD) when they are actually autistic, and that this happens because those doing the diagnosis don't recognise that autism tends to present differently.

I have two nieces, one diagnosed with Aspergers and the other with EUPD. They have two half-siblings, one male, diagnosed autistic, and a female diagnosed with borderline PD. Made me wonder whether all 4 of them might actually be autistic.

I haven’t read it, but I did read about it the other day while browsing kindle store and have put it on my list to read. I am looking forward to reading it, although i do think a lot of people will be upset by themes presented. I’ll try to remember to comment again once I have read it.

Agree with posters saying that actually, especially among women, underdiagnosis is the problem. The fact she covers so many conditions, many of which are outside her actual field of expertise, has my bullshit detector going off. Maybe because I know a few people diagnosed late who have massively benefitted from this new understanding of themselves. After a lifetime of beating themselves up.

This is a good critique www.susanmadigan.ie/overdiagnosis

I didn’t mind when we spent £200 on tickets to The Lion King and were sitting next to some adults with learning difficulties who made a lot of noise and had to be brought in and out all the time so we couldn’t really see or hear what was going on. They have as much right to exist and go to the theatre as I do.

They definitely have as much right to be there as everyone else. However while they have the right to enjoy the show however they wish I have the right to do the same. And while I would never want them to leave, I would ask the staff to move me and if they couldn’t I would request a refund. And I would expect to be given it. I have in fact asked for refunds at the cinema before for similar reasons and have been given one. Even if I was NT I would expect to be given a refund if for any reason you cannot see or hear the show at all.

It's like you said in a previous post - all about nuance. Who does it impact? How big is the impact? What is the cost? Does the adjustment actually solve the problem?

Quite a lot of reasonable adjustments are free and easy - like being allowed to wear ear defenders, being let out the classroom 5 minutes early etc

Ok so if by definition, a reasonable adjustment can only be considered reasonable if it doesn’t impact on the education of any other child in the class then I am all for them.

"Moving an entire 30-strong group of kids out of a classroom and disrupting their education several times a week because one ND child is throwing things around a classroom?
Or how about the thread on here a few months ago where a woman was told she should disrupt HER NT child’s life by removing her from the school where she was being molested by an ND child?
Do we stop sports day because some kids are in a wheelchair?" @WhereIsMyJumper

None of these things are reasonable adjustments.

The first of your examples would be a crisis response that mainstream classrooms use (usually because they haven't put in reasonable adjustments). The second appears to be a safeguarding failure suggested by random members of an anonymous forum. The third is also not a reasonable adjustment and would be a fundamental misunderstanding of the law. There are plenty of ways to include physically disabled children in sports days.

My point here being that being uncomfortable in social situations is not the same as experiencing ‘clinically significant disturbance’ or ‘significant distress or disability’

But again. That’s not what the original quote said. It said all NT people can navigate ALL complex social situations with ease. Which isn’t true. And could lead people to thinking there is something wrong with them just for being a bit awkward sometimes

At the start of the DSM V, there is a sort of overarching criteria for a condition to meet for it to be classed as a mental disorder. That applies to every single condition listed within.

It states that

A Mental Disorder is a syndrome characteristic by clinically significant disturbance in an individual’s cognition, emotion regulation, or behaviour that reflects a dysfunction in the psychological, biological, or developmental processes underlying mental functioning. Mental disorders are usually associated with significant distress or disability in social, occupational, or other important activities. An expectable or culturally approved response to a common stressor or loss, such as the death of a loved one, is not a mental disorder. Socially deviant behaviour (e.g. political, religious or sexual) and conflicts that are primarily between the individual and society are not mental disorders unless the deviance or conflict results from a dysfunction in the individual, as described above

@WhereIsMyJumper

I think finding social situations complex is not not ‘wrong’ or ‘bad’. Some people are extremely empathetic or ‘look before they leap’.
Instead of having a limited sensitivity towards the needs, thoughts and gestures of others - it could be an extreme awareness - which, when channeled in the right way, could result in real benefits to society : creative ways of thinking, better ways of debating, pushing barriers, challenging ingrained beliefs etc.

I have never seen a diagnostic criteria for adhd, ASD etc that says it’s a condition where you don’t find all scenarios easy all of the time.

I guess as a society, we all have to run along together as best we can. Sometimes you will be inconvenienced and sometimes you won’t. That goes for both NT and ND people. It’s hella annoying to be sat next to a parent with a screaming baby on a plane for example. But they deserve to be there as much as I do. (Happened to me recently!)

It was me that made that point originally but interestingly, the more we have discussed it the more it seems that we actually agree with each other… once you get in to the nuance.

Yes but the original message is missing this very important nuance. The original message is that ALL NT people can navigate ALL complex situations with ease. Compared to someone who is ND, yes they can. But the message doesn’t say this and it leads to more people believing there is something wrong with them when there isn’t.
Im NT (as far as I know) and I certainly don’t find all social situations easy to navigate - and definitely not the complex ones. I don’t think anyone can say that they can do that!

And this is the crux, really. Where do you draw the line between NT and ND? I would assume it’s when those difficulties have a real and meaningful impact on your life and cause you severe distress. In fact, that’s how the DSM V interprets the line, too.
There is a world of difference between uncomfortable and distressing

Comparatively they can.

Absolutely!