Parents who refuse to pursue a diagnosis for their children

[emilybrontosaurus]

I am just wondering if teachers or others express a child may have neurodiversity and the parents just sort of sit on that information - why? And could this be considered neglectful?

My swearing, not yours.

I don't think you appreciate that waiting until 'it's needed' can be too late because the person has taken permanent actions - and as waiting lists are so long, it's better to get a place on it before it gets to that point, as they won't (if there is a less disastrous outcome of an act) have to then wait another few years on top. There's also the prospect in your specific circumstances that changes in the NHS might mean you can't get a private assessment when an urgent one is needed, due to private services also being overwhelmed.

You don't put body armour on after being shot, you put it on beforehand. You don't start wearing a helmet after you've fallen off a horse and sustained a skull fracture, you make sure your kid puts it on before they ride off.

Diagnosis is a shield is because it can prevent permanent or potentially fatal wounds happening in the first place.

But many of us with physical disabilities have had different specialists give us different diagnoses.

How do you get tailored support if you don't have a diagnosis?

Sticking my head above the parapet to say I am one of those psychologists! However, as this thread shows, it is such a tricky subject as people can find labels/diagnosis validating and often a diagnosis can open up avenues of support. I believe there are alternative ways of conceptualising neurodivergence (and distress / ‘mental health’) however we are nowhere near these narratives becoming mainstream as in order for that to happen there needs to be a societal paradigm shift - away from the current dominant medicalised model.

I generally only voice these ideas among professional groups of like minded people as otherwise I these alternative views can make people feel invalidated, even though that is not the intent at all. People’s lived experiences are valid, it is the diagnostic construct we are critiquing.

Yes - this is a very big issue currently.

@MsCactus
I’m also interested in links to what you’re saying please. It’s interesting and also worrying as the mother of a teen who’s had several diagnoses for years now.

@Plastictrees
A starting point to more info would be much appreciated please.

Maybe because you don’t feel horsey enough and you suspect that life would be easier if you could be like everyone else.

It's not a label, it's a diagnosis.

@emilybrontosaurus I am one of these parents. Or at least I was. And no, we are not on the spectrum either!
We had teachers on our backs about getting DC assessed throughout nursery and primary school. Then DC moved to secondary school and although we had a bit at beginning of y7 it stopped after I spoke to the senco.
My main point was that although DC showed certain traits at school, we had never any of the type of problems that would lead a diagnosis at home or when out and about. DC is well travelled and had a multitude of experiences from climbing mountains to going to the theatre.

Fast forward a few years, and DC has calmed down a lot and is working hard towards GCSE's with good grades.

I don't know what difference a diagnosis would have made. But for DC's future it's important not to have a label, an excuse and something that could potentially close doors right into their face. I always saw it as a way for teachers to try and control DC behaviour, to mask the fact that they couldn't cope or DC wouldn't always conform and teachers being unsure how to approach this.

Ok I sound like I blame the teachers, but I don't, I can see the bigger picture. If you have a classroom full of 30 6, 7 8,... year olds and have a handful that don't behave or conform, you need to try and understand the why. And the easiest way is going down the route of a ND diagnosis. After all, this is drummed into us at every corner.

This has been a really interesting discussion and sorry if anyone felt it was an attack on their choice of either one.

I am asking because I keep having doubts about my DS, who is now four. I have to say preschool have expressed no concerns, so I do worry it’s my parenting. However, so much advice I’ve read and tried to follow makes no difference.

It is hard to know what’s ‘four’ and what could potentially be neurodiversity but I am worried pursuing it with a GP could be detrimental to all of us.

OP, do you want to talk about what’s concerning you specifically?

I will say that a diagnosis can be essential if you’re looking to get a child into specialist provision.

@Attheedgeoftown I don’t want to de-rail the thread or cause offence to those currently battling the hell that is CAMHS in order to get an assessment for their child. As I said, I do understand the need for diagnosis - especially neurodivergence in children, where early recognition and support can make so much positive difference. I do not believe ‘labels’ are inherently damaging to individuals and can be validating and help people to feel less alone, plus providing a gateway to support.

My professional interests are more so challenging psychiatric diagnosis in mental health. This would be termed ‘critical psychology’. The drop the disorder movement is gaining momentum, and includes the work of Lucy Johnstone (a prominent critical Clinical Psychologist) who created the Power Threat Meaning Framework as an alternative to psychiatric diagnosis. There are many books on the subject too.

Yep, absolutely this.
I actively pursued an assessment for my child for the reasons you have pointed out.
Most importantly, to help him to understand himself, and hopefully not feel as if he is a failure in any way.

Definitely not even close to needing specialist provision. If, and it’s a massive if, he is ND, he’s very high functioning.

I asked advice on a FB group about some challenging aspects of behaviour and I guess so much of the ‘standard’ advice just doesn’t work and got told he is definitely ND and why haven’t I seen my GP yet … which I take with a pinch of salt but still. I think even if he is there’s nothing to be gained in pursuing a diagnosis.

My own feeling is that a diagnosis can help parents and teachers to best support the child, and later, help the child understand themselves. The parents that I've seen not pursue, or indeed not push for, diagnosis seem to be in denial as to the extent of the challenges facing their child. Knowledge is never a bad thing imo.

Thank you very much @Plastictrees.

What do you think would be helpful? Is it that you would be keen for advice, but without going through a diagnostic assessment?

Oh this x1000

Sometimes the challenges become more obvious as they grow older @emilybrontosaurus. They can ‘stand out’ more iyswim. Just something to consider.

You can use ND approaches without getting a diagnosis. Even if the GP refers now (and they might not be keen to if preschool don't support) it could take two or three years to be seen.
If I were you I'd try treating him as if he is ND and see if it helps.

It all takes forever and there isn't much that it changes unless it's quite severe. My daughter is on the wait list for various assessments and it will be 3+ years. In the meantime I have to live my life so we are just working through the reality of her situation without having a specific word to use. It won't really change anything for us as the school is accommodating her requirements regardless and by the time she gets diagnosed she might even have finished at school.

It wasn't neglectful - there were things that weren't obvious when she was wee that have become more pronounced as she ages. Typical for neurodiverse girls in a lot of situations.

Another tiny angle on it all… when I contacted the health visitor about my dc, I wasn’t seeking a diagnosis, I was seeking reassurance because I could see there was a problem. I was hoping to be told I was being over-anxious.

In my dcs school they didn't need a diagnosis to access support, so it wouldn't make a bit of difference to the help they recieve.

One of my dc decided to get a diagnosis, the other chose not to.

That doesn't make me a neglectful or terrible parent, that makes me a parent who made decisions with my dc based on the information and resources available to me at the time.

I absolutely see a problem with this. Where did I say that I didn't?

What I have said is that professionals trying to act outside their expertise can cause more harm than good, as I personally found out.

They should have the expertise! That is my point. Why don’t they? Why are they limiting themselves to treating NT children?

But they don't have that expertise and, with the current shit state of NHS funding, that's not likely to change. The staff would have to be trained in how to treat ND children and possibly more staff hired. I absolutely agree with you that this isn't OK. I don't see a way forwards that doesn't involve the govt spending money.

I can see so much in what @Jellycats4life says. I just didn't face it until child was about age 9. I just don't understand what was happening for me.
I have one child, I'm NT. I saw they were different and instinctively knew it but didn't consciously know what was going on.

I already felt blamed, judged and it was awful. Not one person supported the possibility and openly said ' yes I think your child is ND'. It was a headteacher who dropped multiple significant hints. I had to pay for the assessment because the SENCO said no problem here and no one would provide supporting evidence. My entire experience as a mum was not enough! The NHS refused to assess. I was gaslit everywhere.

So this experience can feed into a parents denial or inability to really ' see'. One other ND mum, when I asked her, said yes, he's different. I really appreciated her saying that to me. Then I was a dog with a bone and would not stop until we got the money together for the assessment. Not fair I know but I knew it was vital.

My child knows who he is now. It explains so much. He might not like it but we now have truth and reality. I'll never listen to one more parent blaming comment again because I know now this isn't what I did 'wrong'.

We need this now we're at secondary school. Will it open lots of doors? Not as much as hoped but it has been important when we've had issues ref other's bullying or quirky behaviours in school.

What if we have criminal justice issues down the line? This is important. What about social support in multiple arenas, again this is important.

Out of all though, the most important thing is my son knowing who he is and me knowing this also.

If there are no 'problems' cropping up then I can understand that a parent might just not see it.