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

@L00pl00p

But I’d rather it was that way round. What if she was actually wrong - is far more impactful. He would have a lifelong incorrect diagnosis.

Ugh, can't edit typos. Sorry. *doing so.

It's an excellent book.

Her exploration of the harms of overdiagnosis in all.manner of different conditions is helpful and considered.

There is a lot of concern from people diagnosed or self-diagnosed as ND that she is undermining their position or wanting to take away any support that may have, but this is absolutely not what she is saying (and comments often clearly demonstrating that the book hasn't been read). Firstly, people aren't ND or not ND. Everyone has struggles in particular areas, and when those struggles reach some threshold, help should he available, whatever the diagnosis or not. Secondly, the act of diagnosis is NOT neutral - it is a form of box that people (not inevitably but very frequently, and unconsciously) put themselves in, and behaviours change as as a result. This is as true of hypertension and heart disease as it is of ND or MH disorders. Doesn't mean diagnoses are sometimes useful, but care is needed.

She talks to many people who have benefited from their diagnoses. I know many who find it a relief understanding themselves using diagnoses. But I think this is because society is unkind to the non-conforming (increasingly so, in the age of globally disemminated SM and identikit beauty or behaviour ideals). I agree with O'Sullivan that pathologising/medicalisjng differences is not the answer to this, and can cause harm.

I think parents seeking such diagnoses for their kids (especially those who have mild symptoms) need to think extremely carefully about the harms of doing do and would do well to read this first.

Nb. The stuff on cancer screening is also brilliant, and underappreciated.

It really isn’t common.It’s hard to get a diagnosis. You may well find he reaches the threshold for diagnosis later and the first paed was right. My dc masked their ND at 6 and I really unknowingly accommodated it. They then massively fell to pieces in their early teens when they had to interact more with the outside world and masking became too much.

Re the EHCPs they are notoriously badly written as the authors are often writing huge numbers of them under pressure. They should always be focussed on need. Also not all EPs write good reports. EHCP writers don’t diagnose.

What makes you think now there is an overdiagnosis opposed to being previously underdiagnosed? We know very intellegent women with autism are 13 times more likely to die by suicide. 80% of women with autism will also have a mental health condotion. 1/3 of patients with anxoria have autism and their anxoria is often sensory based rather than wanting to be thin. I have a school friend who was misdiagnosed for decades as bi polar and on meds with dangerous side effects when all along she was austitic/adhd.

For me it’s about people understanding themsleves and been understood by medical professionals.

💯 agree. Everyone thinks their issue is the most important. ND is by its very definition different.

Someone mentioned up thread the believed % of people to be ND. It is the vast minority so no society is ever going to be able to accommodate a minority - all societies and cultures naturally progress to suit the needs of the majority - its basic survival mode.

So yes, some adaptations can be made, but unfortunately those with greater needs who differ markedly from the majority will always be somewhat neglected.

Edited to add - wrt the OP, I believe there is a lot of over diagnosis/medicalisation of natural variation in humans. I don’t have it to hand but I read an article once about hundreds of “new diseases” including cellulite, freckles and even “ugliness”.

And wrt genetic testing - being identified as high risk of developing a condition has massive implications not least the psychological impact as well as practical things like getting insurance. All very well if there’s a treatment but who really wants to live their life thinking they might get condition X but there’s no treatment for it! No thanks.

@L00pl00p

Yes, DS is very vulnerable. However, I think it’s right I went for the second opinion and that ASD wasn’t diagnosed.
It would be a lifelong diagnosis - and if it was already leading to a potential exclusion at age 4 then - to me - the diagnosis wouldn’t have helped him.

Much of his EHCP was written incorrectly, and based on assumptions that adults tend to make about children diagnosed with ASD. E.g it stated that DS struggles to take turns and x amount of resources are needed for this. The reality is that DS has not issue at all with turn taking, he loves playing games.

The area that needs resourcing is his speech.

It also thinks it’s pretty shocking that I had one NHS paediatrician about to
go ahead with diagnosis and then a second opinion where paediatrician stated insufficient evidence. This means over and misdiagnosis - I think - is potentially quite common.

Define support.

It’s pretty bloody widespread anecdotal evidence then and widely shared with professionals including within the NHS. Maudsley recommends screening for it before ED treatment, CAMHs and CMHT often push for it to inform treatment and the NHS recommend passports to inform treatment. If you are ever needed to give evidence in court and deal with the police there are reasonable adjustments you can have. Within education a diagnosis can be hugely helpful. Then there is access to adhd meds and psycology treatments you can only get with diagnosis….A quick internet search shows plenty of studies highlighting the benefits of diagnosis.

The fact that 70% of people with ND are unemployed or under employed kind of indicates that holding down a great job is rare. And in those rare cases they may be heavily reliant on MH services and medication

I think you’re bang on re. expectations.

People with “high functioning” autism are so often dismissed - “you can’t struggle that much if you’re married” or “you can’t find it that hard if you can work”. Or, “there’s no way you can be autistic if you can do XYZ”.

I’m married and run a business. I’m also autistic and struggle massively on a daily basis. I struggle with pacing, routine changes (I had to cancel a job yesterday due to roadworks and my brain just went into shutdown, for example), sensory overload and often go non-verbal for hours at a time to try and regulate myself.

I can’t work full-time (it just leads to burnout and needing medication to get me out of bed). I struggle with physical intimacy and could never cope with children because of that. I get very overwhelmed at very small changes to the point of melting or shutting down over them.

But people don’t see that. They see a business owner with a husband, a house and animals who drives and is independent. Then the pressure goes on and people don’t believe I can possibly be autistic too.

You're so right. For autistic girls, that is often during the pre-teen to early teen years.

I don't think you should minimise the less significant level struggles of those who are able to manage society better than others with autism.

Someone I know who may never be independent without significant supports has a much easier time than another I know who is in the workforce with autism. No-one expects them to go to work and they have much less pressure on a daily basis.

He is 6. Often the shit really hits the fan the further into the outside world you go and falling to pieces in early teens for ND people is common. I so wish my dc had had their diagnoses earlier than their teenage years. I’d have prepared them better, made different choices and been more alert to dangers. ND young people can be very vulnerable .

That’s your anecdotal experience of the benefits of diagnosis which I’m sure many share. Maybe there is a lack of evidence for the benefit of diagnosis in adults in the research literature and that is what she is referring to?

I understand your view about there being no mild or severe autism, and it’s just yes or no. And why “high functioning” is no longer used. But in my view this is pretty political and doesn’t reflect the blindingly obvious fact that autism affects people in vastly different ways. And perhaps those families with a loved one with autism to a degree that they cannot live without lots of support may be upset when their experiences are implied to be equivalent to someone holding down a great job, has a family but is a bit awkward. (Yes, I’m simplifying to make a point, but it’s one the author illustrates with her own powerful anecdote)

Comments don’t equal a diagnosis which are hard to get. The thread and book is about diagnosis.

And do jog on with your “When the adult married with children and holds down a job rocks up, with the 'I'm autistic too'.”

I’m a married adult with children and a minimum wage job even though I have a degree and have experienced a lifetime of struggle due to my autism and ADHD. Marriage and a job don’t negate massive struggles and aren’t without the struggles to hold down .My children all have autism and adhd and struggle massively in varying ways with their all encompassing autism as did I. Two are heavily reliant on services and all can become non verbal at times. I sincerely hope that with the right support all will have jobs and maybe partners eventually.

Since when was it decreed ND people can’t have jobs or partners?

Except that people with those conditions aren't necessary struggling academically. It can be quite the opposite. My child was at least 5 grades ahead academically. It only helped them fly under the radar because if they were so bright and getting on just fine, all the other things were ignored. Didn't have poor social skills either.

I'm not crap at maths btw. I just need some extra support. I actually have a processing problem with it. This is evidence for my (undiagnosed ND), though I've also known ND people who achieve top marks across the board. I was top of every class with minimal effort - except maths. I wasn't allowed to say I was crap at maths or had trouble with it because I got told it was my own fault I wasn't performing the same in maths and I just had to get over it and I'd do just as well as every other class. What a difference it would have made if my teachers even just accepted I was crap at maths (even if they didn't know about dyscalculia), rather than bully me about it. With actual support, I'd have followed my dream career path, so a diagnosis would have served me well.

I suspect in the past there were professions that suited ND people who weren't academically oriented more and the education system has made it harder, I believe. Way back not everyone stayed at school as long and they could go into suitable fields of work with less qualifications demanded. Even if it was working the fields, tending the sick informally, learning a trade.

Of course you probably got plenty of ND women who were a bit 'different' burned as witches too.

I’m really onboard with this!

I have an autism diagnosis.
I need and rely on that diagnosis to help me accept myself in a world that rejects me for being “odd” or “weird” and to help me explain to my employer or to services why I need reasonable adjustments in processes that are too fast and unsympathetic to the way my brain works.
I do have plenty of strengths I can bring to the table and that my employer benefits from once my adjustments are in place. I own a home and pets and contribute to the running of that with the support of my DH.

I definitely think if the world was less fast paced, intense and judgemental, it’s possible I wouldn’t need or have ever sought out the diagnosis. But I was 24, repeatedly rejected from jobs or fired for things like “not being a good fit” or asking questions about things that didn’t necessarily work but I didn’t realise people didn’t want to hear about because I couldn’t read the room. I was fired from one job when I told the manager (honestly) that some of the tasks made me anxious, I was 20 and no one trained me. Post diagnosis I’ve been at the same employer with reasonable adjustments and the diagnosis able to facilitate conversations (and ‘protect’ me) for nearly 10 years, always scoring well in reviews. I did nothing different, the diagnosis protects me and it helped my employer put me in a position that suits my strengths.

This.

The slightest ,behaviour (that might have a number of reasons) triggers a comment of adhd or autism now? It may be, it may not.

The number of adults celebrating their autism wearing it like a badge totally ignorant of the challenges faced by individuals who aren't just showing some behaviour but struggling with their all encompassing autism, non verbal, never live an independent life, no partner or children and daily massive struggle. When the adult married with children and holds down a job rocks up, with the 'I'm autistic too'.

Diagnosis itself is not an issue if it can help the person better understand themselves and learn coping mechanisms to manage the symptoms.

The issue is that it is too often nowadays used either as a label to undermine the person, or on the other side, an excuse to justify any poor behaviour.

The latter is the problem society needs to get on with to change.

@L00pl00p

I was in a situation where one paediatrician wanted to diagnose ASD and take DS off the screening list. I insisted on the screening and a different paediatrician said there was insufficient evidence for ASD.

Thus concerns me greatly. Especially as DS’s school tried to reject his placement at age 4.

He now gets support for specifically his speech, and has made huge progress at school. His caseworker agrees that he is right for mainstream schooling. He is now 6.

I’m a late diagnosed autistic and my diagnosis was one of the best things to ever happen to me.

I think it’s very easy to sit there criticise when you’re not one of the people who struggled for decades because of a lack of diagnosis.

The U.K. school system is generally accepted to be very focused on academics and our teens are some of the most unhappy in the world.

on that basis almost any other school system (the Canadian one is often held up as an example) would probably be more accepting of difference.

other countries do seem to have better systems for organising support for kids that are struggling.

Hmm slightly sceptical about the OP which has a ring of somebody pushing their own book.

Also the author’s ignorance re ND is palpable. Ignorance re ND is huge throughout the NHS and quite shocking, it is an issue from consultants to receptionists. Hence the NHS rolling out widespread training on the subject. The author of the book doesn’t seem to dispel evidence of this. I lost her on

”In children diagnosed with moderate or mild autism, there is plenty of evidence that diagnosis can be beneficial, but there is emerging evidence that it also comes with significant harms: a lowering of self-esteem, a reluctance to attempt things because of a perception that being autistic will make them harder. In adults, there is scant evidence of either benefits or harms from the diagnosis itself.”

Its laughable. There is no mild or moderate autism. You have to reach a threshold re symptoms that impact life significantly. You either are or aren’t.There is a reason 70% of people with autism are out of work or massively underpaid in relation to skills and qualifications and struggle massively with mental health.

I am late diagnosed from a long line of inherited autism with a grandfather continuously in and out of Psychiatric hospitals with no reason why, to me having it impact my whole life and being vaguely aware of ND to all my children massively falling to pieces in early teens and being diagnosed early. . The difference between them getting early diagnosis and none for my grandfather is massive. I have lived before diagnosis and after for both adhd and autism. Re the “scant benefits” she didn’t look far-I have sat in endless forums,on a peer advisory board, support groups ( including NHS), courses etc and the benefits of diagnosis is widely recognised and discussed. I can tell you that living with a diagnosis is massively helpful. The struggles are the same but it has given me answers, ensured my kids get the right treatment and aren’t over medicalised, given adjustments, informed, given strategies, boosted confidence, given access to treatment and meds…I so wish I’d had both diagnoses earlier myself. The author clearly has no lived experience and a book to sell so has ignored a massive amount of evidence.

Then we get to the stats themselves and well recorded info which she has decided to ignore. On the subject of ADHD it is well known that diagnosis for autism and adhd were heavily gendered for years. So many lost and ignored women and girls. ADHD. Chris Packham spoke to an expert on his recent ADHD documentary who says, 'Well, yes, there has been a great rise in the amount of people seeking diagnoses, but actually we're still way behind'. Six percent of the global population is. And at the moment, it's only one to two percent of people have been diagnosed. This is well known. Why the hell having been ignored for years shouldn’t women and girls seek diagnosis?

Only somebody with zero ND lived experience or expertise and a view to push( in this case for money) would write such rubbish.

I’ve seen lots of people recently saying that they’ve been diagnosed as an adult with ADHD and it’s really helped them - previously they thought it was just their own personality / failure to be able to focus, but meds and appropriate strategies can make a huge difference.
I know about the Ritalin scandal of overprescribing with US kids but I think that under-diagnosis and lack of support is probably more of a problem here in general.

@FrodoBiggins

This sounds interesting. From my experience, my son one NHS paediatrician who was going to diagnose Autism without a screening. I insisted on the screening and a different NHS paediatrician said there was insufficient evidence for Autism after the screening.
I had a school who were convinced DS had Autism and were attempting to reject his placement.
He is now 6. He definitely has a speech delay and receives very good support for this. His speech is targeted rather than an assumption that he is Autistic and getting the wrong sort of support.
So yes, from my experience there is a definite risk of over/misdiagnosis.
In fact I listened to a recent Radio 4 Women’s Hour episode where a dislike of ‘labels’ for children was stated.

If a label/diagnosis actually helps a child and improves their quality of life then I am all for it.
If a label leads to assumptions, exclusion, misdiagnosis, overdiagnosis, giving a child incorrect support - then it’s ultimately detrimental to a child and an incredible waste of resources.