To be angry at the ableism here on MN

[QuitChewingMyPlectrum]

I don't see any threads saying cancer is over diagnosed. Or used as an excuse for something.
More and more ableism is showing up here targeting the ADHD and autistic community and I'm pig sick of it.
Overdiagnosis conversations involving those who have no lived experience (your kids don't count, sorry) suck.
You have ZERO idea what it's like to be us.
And you say WE lack empathy.

Do you work on an NHS diagnostic team? I do.

We use QB amongst other measures for ADHD assessment, not just self reported symptoms.

We use observation, ADOS, and sometimes OT/speech therapist/ ed psych specialist assessments as well as parental report in autism.

A parent listing symptoms in a child who then doesn't score on ADOS or show any social communication differences in obs in context is not going to get a diagnosis.

I dont think its that all all comers are diagnosed but the methods that are being set out here, multi disciplinary teams and panels, one criteria etc, does not apply to all assessments.

Because of the needs of the cohort we work with, there are some children we have diagnosed through CAMHS, others through various different private companies, others through different routes in the NHS.

The methods always start with screening and histories, information is gathered from SW, foster carer, parent if they engage, child if they engage, but always only involves the assessor, schools are not often (if ever) involved unless I specifically ask for the screeners to be sent to them and sometimes we dont get them back. In addition in private assessments we have had a number of assessors who explain why they are making a diagnosis even if some of the markers are not present. Thats their clinical judgement, I cant and wont question that, but there are a myriad of differences in how these assessments and judgements are taking place.

Thats not right or wrong, its just not being recognised sometimes in these discussions.

This is an interesting slant on the likelihood of Autism

The researchers found that individuals on the autism spectrum were 2.49 times more likely to be left-handed than people without autism.

I am not aware that 'handedness' is taken into account on diagnosis and I know correlation is not causation.

Being left handed myself from an era when left-handedness was very discouraged - I am very aware of its challenges.

Speaking from experience it wasn't the case for my child that school funding rested on diagnosis & the fact is that many diagnosis have lapovers to other conditions. So it wasn't important what the diagnosis was, only the behaviour. This was within the time period you mention you were working in the UK.
Ref medication, they can only do so much based on presentation & information, they can't always get it right first time. It's no business of any professional to start prodding away at 'trauma' that might not be there - or if it is, might not be the underlying cause of behaviour.

Not sure whether this might be area based or how good the professionals are at communicating this information to the LA for funding - but that was what we experienced. And I think this is right actually.

The belief that professionals always get it right is extremely misguided. Trends of diagnosis or non diagnosis seem to be common, though. Hence the current trauma based focus.
You cannot escape childhood without trauma, this I believe. We are all victims of trauma. We don't all have neurodivergent symptoms as a result though.

As hard as I’m sure the process will have been, I’m so glad for your daughter. I hope she gets the support and understanding she deserves.

I wasn’t diagnosed as a small child in the 90s, though there were ed psych, speech, etc assessments and interventions from ages 4-7. Ultimately they decided that I was “just emotionally immature”.

I struggled through school, went to university and my life promptly fell apart. I was diagnosed autistic at 20, I took those early reports as background evidence and the doctor commented that if I had been a small child in the 2010s I would have been diagnosed from those assessments. The understanding of how autism presents in girls, particularly very verbal girls, just wasn’t there.

A agree. Some clearly enjoy upsetting ND posters on here. I think MN is scaling on thin ice as autism is a protected disability.

Some of this ableism is hugely sexist too. Women and girls have been undiagnosed and had to resort to masking for years. Diagnostics have been totally geared to boys. Now professionals and sufferers are better informed women and girls are being told that they’re not deserving of diagnostic, are attention seeking etc.

And MN just sits back and lets it happen.

In the U.K. it’s fallen largely into the hands of private practice so of course it’s going to be over diagnosed. Many clinics are not well run and certainly are diagnosing people who wouldn’t be on the NHS. Look at the figures in the USA. Are you really suggested that in some areas 15% + children have ADHD? I feel sorry for those who are genuinely disabled by it. People are viewing it like the latest fashionable mental health diagnosis and forgetting it’s a serious life long disability.

@Gerrataere My husband was diagnosed with ASD at 11 years old. In the days of proper CAMHS funding. He was seen by 7 'specialists', half of whom agreed he had it. half of whom did not. He is a champion masker and even now appears 'normal' to the general public but when he is with me obviously stims etc. His report as a child details obvious behaviours (inability to read social cues, sensory issues) etc but still some professionals claimed he didn't 'meet the threshold'.

I got diagnosed via insurance at work but the signs were always there, like many ADHD women everything was 'fine' until I finished uni and the demands of life and work caught up. Because I used to be great at exam (last minute hyperfocus FTW) nobody thought anything of it and let me get away with constantly not finishing my homework. forgetting stuff etc. Now I have to be 'on' 5 days a week at work and it's very draining.

Personally I think 'overdiagnosis' isn't really relevant, but the consequences, 'excuses' is a different matter. I had quite a few 'friends' who for example are always late 'teehee sorry ADHD thing' which I find offensive as I'd feel bad about keeping people waiting!

Even DH and his ND band of merry men don't want to play video games with a particular person who always insists on getting his own way, gets very angry when he doesn't, stubborn etc etc. Maybe his autism is a reason for his behaviour, but that doesn't excuses it. They are all ND and they don't want to put up with it, let alone other NT people.

As much as MN blathers on about ableism the biggest issue isn't 'NT' vs 'ND'. It's among ND people themselves, there are so many of us, we tend to make friends with similar people.

There is always going to be argument about what people deem as a reasonable adjustment, what is acceptable behaviour, because each ND person is so different you are basically having to understand all of them on their own merits. So on MN, 'people should be accommodating and understanding' I don't know IRL what that would be like depending on the behaviour shown.

I agree that the posts on that thread were awful, particularly the ignorant ones about PIP.

However
I don't see any threads saying cancer is over diagnosed.
Is a comparing apples with oranges - there haven't been exposés of private cancer diagnosees being issues without consultation, as there have with ADHD.

I think the general problem is people using these diagnosis as an excuse for poor behaviour. I have had a child at work continually hit a member of staff and their parent brush it off because they are autistic. And another spat at a member of staff and the parent say it is because of ADHD. I have a child with ADHD and I think it is used as a label for parents who don't parent sometimes and sometimes it is a genuine issue but then can be used as a weapon. To the general onlooker it can all seem too coincidental.

I'm actually thankful for people pointing out my grammar mistakes. How am I meant to know that I am writing something wrong if no one tells me? Someone pointed out a mistake that I was making on here years ago and now I am really conscious not to repeat that mistake when I am writing up reports at work. I may have struggled to progress at work if my reports continued to have poor grammar.

I don't know what leads you to confidently assert this in the face of scientific evidence to the contrary (unless you happen to live in the US), but this sort of casual cultural antagonism towards the experience of autism and ADHD is definitely abelism and contributes to the misery ND people and their families experience on a daily basis in a society that is hostile to their differences and needs.

As with racism, sexism and homophobia, your views have consequences for the lives of other people.

My experience from friends in the USA is that ADHD is diagnosed in a single sitting based on parental report. I have been quite shocked - for example, a friend's son was diagnosed with ADHD after his teacher requested parents pursue a diagnosis because he wasn't getting on with his work. Medication had limited impact. It was some months later that same friend showed me his very poor written work - it was immediately obvious that this poor child had severe motor coordination and control issues. He could barely shape a recognisable letter. No wonder he wasn't getting on with his work!

We may not be perfect here in the UK but that child would not have had all difficulties ascribed to ADHD and his motor control issues completely ignored if he had come to us. I expect he actually had DCD.

This subject makes me so angry so I won't post my thoughts but thank you for starting this thread. I was thinking the same. What if it was a thread claiming asthma was over diagnosed- they should just get more exercise etc.
fucking bonkers.

This

It's not ableist to point this out.

Along the same lines as "a bit OCD" ?

DD2 had two lots of counselling where no trauma was found before ADHD and ASD was diagnosed causing her anxiety and emotionally based school avoidance.

The issue was unmet need in secondary school, a combination of medication and reasonable adjustments by the school has helped.

We are so lucky that we were able to find and pay for good private help. Schools almost always blame parents- we have been threatened with fines and court action. Schools are so often only interested in attendance figures and not making sure that school provides the best environment for everyone to be able to learn.

I would just point out that-

Not all private clinics are the same- yes some are better than others. Some are really good and absolute specialists in their field.

The NHS is NOT the standard by which all other providers should be measured. They are fucking shit at providing mental health care to children and young people. It is in a proper fucking state. Schools and local authorities SHOULD NOT be holding up a NHS diagnosis as a gold standard.

Usually assistance is not provided at all - the waiting list if you can get on it is 5 years - older kids would be adults and too old to receive help from CAMHS by the time they get an appointment. Parents go to private clinics not to seek a false diagnosis but to seek any help whatsoever because there is none to be had whatsoever from any other route.

Are you really suggested that in some areas 15% + children have ADHD?

I think 15% is very low. Why do you think it's so much less?

I've had a family member tutting and eye-rolling when I've told them about my sons autism and ADHD diagnosis. Apparently it's "trendy" for all parents to get a "label" for their children these days and those conditions didn't exist in their day, just an excuse for bad behaviour blah blah blah.

My son isn't in the least bit badly behaved, I never had ANY concerns about him at all. It was his KS1 teacher who approached me with concerns when he went into Year 1 and was massively struggling with completing school work and staying focussed. She recognised certain traits that could be indicative of autism and suggested that I went to the GP to request assessment for him. It was a very long, drawn out process with Educational Psychologists observing him in school, lots of forms for us and his teachers to complete. There were assessments by paediatric consultants, specialist nurses, speech therapists etc and it took years! This family member speaks as if I just popped into the GP's one day and said "hey my kid is naughty, give me a label and some pills". It boils my blood.

I think this is such a complex issue.

My frustration is that there is now such an obsession with having a formal diagnosis and label that this is used as a way to gatekeep compassion, help and resources from those that need it. Using a physical disability example, if you were in an accident that meant that you were temporarily disabled and needed to use disabled parking spaces to be able to access places, there would be a contingent on this forum that would see you house bound or in severe pain rather than allow you to use an official disabled space without a blue badge. The fact that you are factually in need of the space makes no odds to them, all that matters is the badge.

The same goes with ADHD/ASD. If someone is self reporting that they have traits of these conditions that are causing all sorts of problems and carnage in their lives, why must we check if they have a formal diagnosis before we seek to offer support and help? This is especially true for condition where there isn't really a definitive way to 'prove' someone has the disorder in the first place and the extent to which it might impede their lives.

I also think parents and carers for ND people get a really hard time. It is really really hard to look after a ND person and there seems to be an unrealistic expectation that everything is done to accommodate the ND person's needs without questioning the toll this will take on the people around them. It has been proven time and again that there is a strong genetic factor for many of these disorders. It is therefore highly likely that these expectations are being placed on people with some Neurodivergence themselves

This
Absolutely this

I can’t really comment on the reality of the diagnosis statistics but I’d be interested to see what the evidence is. However, there is a comparison with antibiotics. For those who say, “surely doctors wouldn’t be swayed/diagnose/prescribe medication due to pressure from schools or parents”think about the over and incorrect prescribing of antibiotics and the problems that are stemming from their over-use. Doctors are wonderful in so many ways but they are also human and we are all flawed in one way or another.
I’d like to see more support for anyone who deviates from the perceived perfect norm (which doesn’t actually exist anyway) whether it’s a parent, child, adult. It matters not who they are but that society as a whole expects high standards of behaviour from all but within what each of us is truly capable of.
Poor standards of behaviour and a lack
of empathy with being anarchy.

The clinical situation and diagnosis rate in the UK and US are not at all similar. If you want to keep spreading this nonsense, don't bother with your expressions of sympathy to 'the genuinely disabled'. You are casually stoking discriminatory attitudes.

An organisation with the influence of Mumsnet could make a real difference here. I'd love to see a campaign to get all teachers trained in how to teach children and teens with ND and to stop parents being fined for emotionally based school avoidance.