A diagnosis one

[CarGoat]

Ok, I know diagnosis etc.. has been discussed to death on Mumsnet, but ...

Recently I have come to realise that in every single family I know (as in, families I'm friends with or know enough to have been to each others homes, kids have play dates etc...) there is a child with either an established diagnosis of ADHD or Autism, or there is a child undergoing assessment/on wait list for assessment.

The final realisation, (and I guess what prompted this thread) came when the mum of my child's best friend told me he has recently been diagnosed with autism. I have never seen any traits and had no idea. He's a lovely, well behaved kid, has loads of friends, interests, plays computer games with my DC, they hangout together, play games together, chat together,.do sport together. I understand there must be some difficulties his mum has observed which led to diagnosis etc.. it's just, he seems fine!

I then reflected on all DC's other mates and realised just how many either have a diagnosis of autism/ADHD or have siblings with this. My nephew is in the process of assessment for autism. My other nephew is also being considered for ADHD and has assessment coming up.

This is mad.

These children, while they may well meet criteria and I am not doubting that, they just don't seem much different to the average kid in terms of communication and behaviour etc... so all are relatively 'mild' in terms of presentation (i.e. autism is not of a level that's non verbal, the children have good peer relationships etc). I know people will tell me you don't thave levels like 'mild', but I'm not sure how else to explain it - just that the children all 'appear' perfectly fine. They just seem like normal, average, healthy children.

So ...

Is this just a quirk of where I live, in that in my village there just happen to be loads of children with ADHD and Autism, but this is not reflective of wider society?

Or

Is this reflective of wider society? Are the levels of diagnosis of these conditions now this prevalent?

And if the latter - shouldn't we make the criteria for diagnosis harder and just acknowledge that we are all a bit neurodiverse to some extent, and make adjustments to the schooling environment to account for that, rather than having to fund all these individual assessments and locate the problem in all these children?

I just think it's ridiculous to diagnose so so many children and if nearly every family has a family member with a diagnosis then surely the diagnoses are a bit redundant and meaningless?

(I know some people will not like this post, sorry. I am putting on my hard hat)

Well you did describe those without Autism as "normal" and claimed the children you've met only have "mild Autism". Whatever that is

One of my siblings has classic autism and ADHD. I have ADHD that was only diagnosed in my 30's, although it affects me equally if not more than my sibling. I was called a 'dreamer,' 'lazy,' 'unmotivated,' 'useless,' 'pathetic,' an 'underachiever.' I couldn't get my life together - my house was always a tip, I couldn't learn to drive, couldn't hold a job for more than 6 months, couldn't turn up on time unless it was the only thing I focused on all day (and I would arrive two hours early), couldn't do tasks with multiple steps like laundry or making my bed without getting distracted and leaving it half-finished for weeks.

To speak to me or know me casually it would appear there was nothing at all 'wrong' with me. I mask very well to casual observers because the symptoms carry so much shame and embarrassment. The diagnosis is ALWAYS met with eye-rolls by people who know me. But the diagnosis and medication have totally changed my life.

I wonder if you would question someone’s cancer diagnosis or diabetes diagnosis or diagnosis of heart failure?

why is autism fair game to question?

the OP has explained this already, there is no medical test. there is no definitive proof. An autism diagnoses is given based on what you say or what other people say about you.

The problem is that the world is so much more intense that people who would have coped before need to much support to manage

My DDad clearly has asd/adhd. He was clever enough to get into grammar school but failed all his exams as he couldnt focus. Then he managed to get a job that was very secure although not amazingly paid, he managed his diary as he had to travel around the county. He would start,/finish 2 hours before everyone else then go on multiple long hikes/movement breaks for a large part of the day which his bosses never had an issue with/noticed (he did his actual job properly as i dont think there was that much to do!). He had a lovely career doing that but would genuinely need to do long rambles in between meetings. His whole department has now been merged into one function (hes been retired for a while now) and it's so much more pressured.

Not based just on ‘what you say’ - parental questionnaires , personal questionnaires, the child completed, school reports, reports from other settings, speech therapy, ot input, Ed Pschyologist, their psychiatrist, the gp their paediatrician - a lot of medical and other professionals all fed into my children’s diagnosis - each providing evidence / observations about how they were in different situations and settings.

then there was the assessment over multiple sessions by a 3 person neurodevelopnental team assessing and observing you in test conditions . (At least 1 psychiatrist, one pschylologist annd I don’t remember who the 3rd was but all experts in not just autism but neurodiversity - hence the children being diagnosed with both autism and other comorbid conditions) Asking them to do things and how they complete / don’t complete the task and how they interact with the assessor is all observed as well as the actual tests they perforn.

Yet an untrained observer feels they have the right to question a child’s diagnosis despite all these highly trained people being involved in coming to this joint conclusion?

it’s not a case you say ‘xyz’ and get a diagnosis.

it is based on so much information gathering, observation and assessment . not just on ‘what you say.’

Querying the large increase in diagnoses is reasonable. We need to understand the reasons for this and research to date indicates that there are likely many issues involved, but its a complex and evolving area.

However, the OP explicitly asked " shouldn't we make the criteria for diagnosis harder and just acknowledge that we are all a bit neurodiverse to some extent, and make adjustments to the schooling environment to account for that, rather than having to fund all these individual assessments and locate the problem in all these children?"

Most parents and carers of children with SEN have a long and difficult battle trying to get needs recognised, assessed, understood and then met. It can take some people literally years and, at the same time, the literature available says early intervention and support is critical to improving educational (and other) outcomes.

If schools were able to be more flexible and accommodating to more childrens' needs, that would be wonderful, but that's not the reality we're living in. On the contrary, schools and teachers, in my experience, have often been incredibly inflexible. That's not to lay blame on schools and teachers. I think most do the best they can, but they operate within very difficult parameters and usually on a shoestring.

But to add to the weight of the burden that parents and carers of SEN children often carry, by making getting a diagnosis for their child even more difficult to obtain than it already is, is definitely not the answer.

Well that's slightly misquoted. I have explained what I meant by the use of the word 'normal' up thread and I actually said I know I can't use 'mild' as a term and asked what I can use instead.

I have already apologised a few times for offending people and acted I could have phrased my posts better.

*acknowledged I could have phrased my posts better ....

It's ok to have a different position on diagnosis

Not when your "position" is based on ignorance, assumption, exaggeration or vague musings rather than actual evidence.

It is simply not true that every household in the country has someone with a diagnosed ND need, and you know it. If you were genuinely interested to know the prevalence of Autism or ADHD in the UK, a cursory Google search would have answered your question. This is just more goady, ableist nonsense.

I think the world would be a much better place if people would refrain from taking a "position" on subjects they know absolutely nothing about and maintaining that position even when people with actual knowledge and experience of the issue have explained why their "position" is a load of old bollocks.

I would like to say a big thank you to you, and people like you. My eldest son has benefitted massively from the relationships he has with his grandparents. Their love and unconditional positive regard has helped hugely with his self esteem and development. They see all of the good in him and understand his difficulties. They also help me to keep going and keep seeing all the ways in which he enriches our lives. When things have been very difficult they have been there for us. They listen, they care, they understand and they love him.

Please keep being you. Your support and love for your grandson will help him and his Mum. When school, friendships, extra curricular activities and the world in general feel impossible to navigate, having someone like you in their lives will make it all feel a little bit easier.

You are assuming I know nothing. I actually know a little though understand why people think I'm ignorant. Fair enough conclusion people have drawn, though not accurate.

The diagnosis debate in psychiatry is actually something widely debated. On Mumsnet I appreciate it is talked about largely from the perspective of service users and carers, and is not so much 'debated' as enforced as a view where everyone has to agree that diagnosis is good. But in the academic literature it's debated on a more emotionally distant level, and I am not alone in holding my position. I am allowed to disagree with posters. I am allowed to hold a different position regardless of how much knowledge I may or may not have and no matter what perspective I come at this from. Everyone in the world is allowed views and opinions.

I know you and others don't like my opinion and views, but my opinions and views are of equal validity to yours. I have apologised if my views offend. I can't help that but I can help how I phrase things and I could have done better with my phrasing and thought more about how strongly people feel on this topic and been more careful with my wording.

I never said every household in the country has someone with a diagnosed ND. My original OP was actually asking if the experience I have locally (where everyone I know has a family with a diagnosis of Autism or ADHD) is representative of wider society. I gather from posters that it is not.

You are entitled to hold whatever position you wish.

but as an autistic - I find questioning anyone’s autism diagnosis deeply offensive.

I am not ‘Baconandddddeggs’ with autism. I am an autistic women. Autism is not an add in - it is at the core of my being - it is present in every aspect of my life .

to question the validity of an autism diagnosis to me is questioning the validity of my whole being - how I experience and view life. It is so insulting and upsetting.

to explain further - if you are a women, a mother of 2, ‘Mrs x’ - I take you as you are. I don’t ask for an inspection of your genitals or for a copy of a blood test to prove your ‘xx’ status - that you are ‘actually a women’ - as to do so would be inhumane and so disrespectful to your identify and who you are at the core of your being.

but that is what you are doing to autistics - when you are questioning their diagnosis.

You are questioning their validity as a human beings and questioning a core part of their identity and being and that is such sn awful thing to do to anyone.

medics observed, tested and diagnosed us - we are what we are and we are just as valid as anyone else .

you have every right to your opinions - but please be aware that they are highly offensive to autistics / parent of autistic children like me .

Thanks @Baconandddddeggs

Do you think given people may be deeply offended (and I understand this, and I am sorry if I have offended you) by discussions about autism and ADHD diagnosis, that all such discussions should be banned from Mumsnet? Should Mumsnet simply not allow these discussions? Or should all posts and discussions on the subject have a certain warning attached so people know not to open the post if they may be offended? What's your thoughts?

No I believe in freedom of speech.

but …. I wish that people would think before commenting on things that they are not experienced in / qualified in and also think about how hurtful they are being (whether intentionally or not)

I have lived experience of being autistic and being a parent to autistics and there being a lot of autism in my wider family and friends.

I do not speak for anyone but myself - but I really find your opening post hard - as who on earth are you to question another person’s diagnosis?

I come on mumnet for support and to offer support others. I don’t comment on living with kidney failure or having schizophrenia as I have no experience of it.

I don’t question the diagnosis of someone who says they have kidney failure or schizophrenia - because I have no basis to do so.

I really feel you need to stop and think. You are a mother. How would you feel if one if your kids had any medical diagnosis and instead of receiving understanding - you are questioned about the validity of it ? It’s totally dehumanising and really is an awful thing to do .

That is what you are going to autistics here.

Please just step back and think how you would feel if you were autistic or a parent of an autistic reading this thread.

It really is not your place to question any medical diagnosis - especially given all I outlined in a previous post regarding how in-depth and how many PROFESSIONALS are involved in the making of it.

@Jimmyspiano - thank you
I love this boy so much and I see so many lovely traits in him
He has never hugged me , or said he loves me back and often doesn't make eye contact . But he knows where his spaghetti is in my cupboard, he knows which drawer has his spare clothes and blanket and he is happy to come to my house
He doesn't fight me re his car seat ( although he does with his mum 😂)
He is gentle with my dog although rough with his own and he knows I am here for him
This is him , his normal

As I explained before, there needs to be a lot more research into autism because autism is currently an umbrella term. It is used to describe a variety of symptoms, behaviours and presentations. Autism is supposed to be something that you have from birth, that you get when you are developing in the womb. But It’s quite possible that somebody for whatever reason didn’t get the right attention and the right guidance that they needed from their parents when they were growing or developing and something didn’t go right during their childhood,so they exhibit certain behaviours and are given an autism diagnosis. I am not going to pretend like it is impossible to get an autism diagnosis if you don’t actually have it. I think one of the problems is that autism is so broad And the presentations are so different And I think that a lot of people would agree with you. How can their lower functioning child have the same condition as somebody who can form relationships And sustain a job? I am sure that there are probably unrecognised conditions currently or issues with somebody’s childhood in the way that they were raised, and that may have something to do with how they are affected today. But it is all going under the autism term because it isn’t understood enough yet.

So if people like me exist, and we hold these views - should Mumsnet ban us from expressing these views? I know you said no because you believe in freedom of speech, but you also said I should stop and think and it's v offensive and the message I am getting from you is that I shouldn't have posted. Should I have put a trigger warning? Could there b a well known warning we use when posting on this topic so people don't open and read the post?

By the way - professionals aren't gods. What they say is not automatic truth. Many professionals (mainly psychologists but some psychiatrists) are actively involved in discussions against the value and purpose of diagnosis. Diagnosis in psychiatry is essentially a man made thing. The DSM and ICD are just made up by by a group of researchers and practitioners. There are no words for autism or ADHD in some cultures. It is ok to consider this and discuss it. However, I appreciate that you and many others don't like these discussions and debates and find them deeply hurtful. I am so.sorry for that. So I'm wondering what the answer is (because luckily there are no thought police, so my thoughts and opinions cannot themselves be banned)

66babe I am certain that your grandson loves you, feels safe with you and knows how much you love him. Consistent, unwavering kindness and patience like you offer must be amazing for your boy.

A PP has already addressed this, but I also wanted to outline my experience.

When my child was diagnosed the multidisciplinary team got feedback from 7 years of schooling, a medical history from her GP and a developmental history from us. They interviewed us separately to our child. They observed our child at play and gave them various scenarios to see how they would respond. At a different session they analysed her communication and how she reacted to different conversations and prompts.

Altogether there were 5 or 6 different professionals concluding that they were autistic. They had evidence of the things she struggled with from what they (multiple trained and registered professionals) observed first hand, what school and GP had observed and recorded over the last 6 to 9 years and from interviews with us.

How does it benefit the professionals to lie? From a medico-legal point of view they are leaving themselves open to future potential lawsuits if they're diagnosis aren't well founded.

Interesting that your conclusion was to make diagnosis harder, rather than wondering what is happening in society that might be causing this to happen .

I think what’s the Person who made this thread is trying to say Is that autism presents differently in everyone, and there are so many different variations and severity levels That it couldn’t possibly be the same thing, and I actually agree with them but I have tired to explain to them that it’s all under the autism term because it isn’t understood what causes all these symptoms and issues in children with autism

You are entitled to post what you like, but expect a hell of a lot of blowback. I think @Baconandddddeggs response is much more thoughtful and reasoned than your posts deserve.

it’s a bit like starting an anti-vax discussion, or wanting to debate whether covid is just a cold. Hold whatever views on those topics that you like, but you will deservedly get flamed on a non conspiracist discussion board.

It’s not that autism does not exist. Of course it does. But not to allow a ‘but …’ is illogical in

Plenty of "service users and carers" are also capable of understanding the academic literature on Autism and ADHD. Some of the best Psychiatrists and Psychologists I've worked with have been ND themselves, and a couple have published research on the subject. You seem to be suggesting that if ND people and their carers disagree with you it must be because they are too emotional to view the subject through a rational lens, which is patronising and (again) offensive.

I also don't agree that everyone's opinions must be treated as equally valid regardless of their level of knowledge and experience of the subject at hand. Especially if those opinions perpetuate stigma against an already widely misunderstood community.