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?

It's not something that can be 'cured' as its not an illness, it's just their brains are wired differently than others. Also, a diagnosis isn't a negative label, it's something that can make a child feel validated as it can help them understand that it's not just them beimg weird and different and they don't know why (and then get so upset they're not the same as others). A diagnosis (not a label) will also mean they can get the extra support they need and will be protected in the workplace under the EA 2000 for things where they may need extra support. Without the 'label' they get none of this.
(DS is 'labelled'. He was so happy to get his label as he felt his differences were not just him being weired. I am recently 'labelled' in my 40s and still struggle with being me and not masking or wondering why I am the odd one out which has hugely impacted my confidence throughout life. I wish I'd have been 'labelled' as a child but my parents refused to acknowledge it or want their child(ren) labelled.

I agree ref the labelling. I have had to 'fight' with child's dad over this. It isn't a label, it's a way of being, it's an identity. It isn't so and so with diabetes or severe depression. It's who someone is.

Yet the discrimination is there and often my own child says I'm not telling xyz and I just have to say, I totally get it. Playing a particular sport for example. He doesn't want to mention it. I support that. I see why.

Not all children with a diagnosis will get funding for anything.
Not all children with a EHCP have a diagnosis.
It's not like the diagnosis automatically brings money or support.

This 💯 Thank you

Nope that funding is based on need not dx

You see this is interesting. I have come to terms with being who I am and how I'm different to others. I have no shame, in fact I like to be the odd one out (mostly, I'm only human after all). I find some people like me, others I'm not their cup of tea. That's fine, I can live with that. I know I'm not an unlikeable failure. Nor does my son live under this impression. He had a great humour about his weirdness 😁. A medical label at the very least has no impact on how we feel about ourselves, it certainly wouldn't improve things. For my son I worry it might make things worse. It could, it's a real risk. So why rock the boat?

Again I'll repeat what I said upthread: a dx doesn't give a deeper understanding about your brain. There is no scientific understanding of the biology of ASD. It's simply a collection of symptoms under the title of ASD.

@Huffalumps that makes total sense. I wonder if it's different where you have NT mum and ND child compared to ND parent, ND child.

I only now see that my ex is ND. I had no idea. Very much against assessment and diagnosis. What's the problem here? Whereas for me, NT mum, it was very important and I was struggling alot. The diagnosis was also for me and my needs. I won't deny I was also thinking about myself here. It was primarily for child and to access any support in school possible. But, yes, a part was for validation, for understanding what the hell was going on with weird social rejection I could not understand. With issues in school. Lovely relatives 'blaming' me for certain behaviours/ meltdowns. I just had to know.

That may the theory but for thousands of families support only comes with confirmation of diagnosis.

He's not allowed to take medication largely because it is not likely to be available on a frontline. So if he were dependent on medication he couldn't deploy and thus join up.

Same applies to people with food allergies, because the armed forces can't guarantee food turning up full-stop, never mind food that's allergy-friendly.

AND, I have fallen victim to the easy thinking trap of assuming that people on Mumsnet know what they are talking about and are correct in their assertions. The army will take autistic people on a case-by-case basis, depending upon their needs and capabilities.

I feel really emotional reading this! A diagnosis is so liberating and will improve every aspect of you and your DD life.

I was trying to help and advise, based on my own experience of CAMHS advocating harmful masking behaviours. Thank you for acknowledging that possibility.

In 2024, it should be possible to set up some kind of targeted support for autistic children with a MH co-diagnosis, even if it's from a national service over Zoom.

I guess the difference for my friend and her son (and some people on this thread) is that he does know who he is and why his brain functions as it does. His parents are aware as his dad is the same so the function of the diagnosis in validating his experience isn't necessary. His parents already accept him for who he is and help him to navigate.

I treat my diagnosis as a jerk filter. If I tell someone that I'm formally diagnosed as autistic and they react negatively, I know that I don't want to interact with them further.

@Jellycats4life But why do you need an official diagnosis to confirm that you are you. Nobody else needs to validate my daughter - I’m teaching her to be herself. If she needs something, she needs it, regardless of whether an expert has confirmed to her she needs it.

In any event, diagnosis'where I am at least are hugely flawed. I don’t know anyone who has been to a private specialist and not been confirmed as neurodivergent. I was at a conference recently and the attendees were asked to raise their hands if they were ND. Over 80% did. We are all just different people with different needs. A diagnosis of ASD is meaningless - there are as many different ASD needs as there are stars in the sky. Just treat everyone as an individual.

They see it as almost quite a political point: why does a person need a medical diagnosis for something that is a valid different way of being?

I see that point, but at the same time, I need workplace and hobby space adjustments and it's a lot easier to justify those when I have a multiple-page diagnostic report explaining why I need breaks, sunglasses indoors, etc.

You're not a bad mum, but his school is a bad school if they don't recognise surgery as valid reason for time off.

Autism being a spectrum condition doesn't mean that we all have it a bit. It means that those who do have it are affected in different ways. Graphical explainer.

Doesn’t work like that though does it? Instead people are described negatively.

My DD10 who is soon to have her ADHD assessment was described as feral by her headteacher.

She is a ball of energy but really struggles. To form relationships as she can be too much for people.

if she gets her diagnosis and imagine she will then I’m hoping people can cut her some bloody slack!

it is said those kids with ADHD tend to hear around 20,000 more negative statements than their NT peers. that is sad.

What if she needs meds?

This for sure!

no we aren’t all a little bit autistic. Yes some people may have a couple of traits and not meet the diagnostic criteria but that doesn’t make than autistic. It’s all about how it affects your life isn’t it? Or is it not!? We are at the beginning of our journey tbh. DD15 was always just shy and timid. Since high school so much more has come to the surface.

@macap Thats disgraceful that she was called that by the Headteacher! Not okay at all.

This

It's not an identity: we don't choose it. It's an immutable neurological difference that affects every aspect of our lives.

I identify as a musician but I was born autistic.

It’s really hard to know. To me, pursuing a diagnosis at the moment would be madness - it would effectively be ‘can we please be put on the waiting list so we’re first in line in case we need to be in the future’ which clearly isn’t how it works.

It’s difficult when it’s your first child and you don’t have a basis for comparison.

Honestly I was sort of stunned. We were discussing the fact that she had changed a lot and was struggling immensely with school.

she replied yes I mean I hope you don’t take offence to this but my NN for her used to be feral child.

Cheers for that.

she is now not attending school and has ran away from there several times. Her exit was blocked to try and keep her in the building so this has no developed in to a phobia of enclosed spaces and not having some sort of exit. Makes appointments near on impossible!