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 me thinking that. There are visible structural differences between the brains of neurotypical children and autistic children.

I'm just going to link rather than retype why "you kid might be banned from becoming an astronaut" is not excuse for avoiding having them assessed.

possibly. But this thread started with the premise that not perusing a diagnosis is neglectful. I was pointing out that there is gentle encouragement to not pursue it.

The article says “It's too early to say what these differences in density mean”.

hard agree with all that. We kept chasing for a diagnosis. But it’s worth remembering that extra hurdles cause people to leave the system

I think there is an understanding among professionals involved in the diagnostic process that it isn’t as cut a dried as people are suggesting on this thread and that there are valid reasons not to diagnose.

Nonetheless they are there. The structure of something is part of how it works.

Getting a diagnosis? Haha! Don’t you mean sticking them on a list for years, trying to get a diagnosis??
The system is broken.

My Ds is Dyslexic. He is Autistic. I sought advice for both & he has formal professional diagnoses. His close Friend of 8 years standing is clearly Dyslexic & extremely likely ADHD too.
His parents, whom I know well & both of whom work adjacent to the NHS, 'don't believe in labelling our children'
& have left him to struggle. He sought from School himself aged 17, but by then he was failing his A levels fast.
They are quite an academic family, the other siblings encouraged & heading for Uni. 'M' now does casual labour full time. 'Poor M' they say. Poor M indeed.
(not that there's anything wrong with casual labour but it's hard to hear his Father boasting on about his own PhD)

Brains aren’t “wired” though and structural differences while interesting need to be further investigated before we claim conclusions. It’s interesting that the article clearly states “It's too early to say what these differences in density mean” and yet lay people commonly use the wired differently or work differently idea as though it is proved. A similar situation happened with the refrigerator mother and male brain ideas which were so popular not long ago.
FWIW my experience of autistic people is not that their brains are wired differently.

Unless you've cut one of our skulls open, you couldn't know based on your own experience. That's why I referred to the study.

Which do you think is more likely: autistic people having structurally-different brains and a common set of diagnostic criteria but somehow our brains function exactly the same as neurotypical people's do, or autistic people having structurally-different brains and a common set of diagnostic criteria and our brains functioning a bit differently from neurotypical people's?

Ahhh I apologise I meant like the scientists who produced your study that I don’t see definitive evidence of brains working differently.

I think the system, at least for mainstream schools, has been changed so that support is given based on needs and not diagnosis. In that case, a diagnosis might not tell you anything you didn't already know. If a child has an EHCP for delays in speech, understanding and sensory issues, an added diagnosis of autism doesn't necessarily bring more needs to light because autistic people can present very differently. This is what I've been led to believe anyway

Apparently no longer the case. I know of a number of children with no diagnoses and airtight EHCPs. I don't know if they are missing out on any benefits though, to be fair

I’m not sure it was ever the case @Barakata certainly not in the last 20 years

I understand this thinking. But people can be neurotypical and still socially awkward, anxious and feel a bit "different". Hopefully people will be understanding of the fact that we're not all cast from one mould and being "different" doesn't make you a failure :(

One challenge I have with this view (it's a popular view so this isn't a dig at you) is what's normal?

Quite a lot of comments have focused on people needing diagnoses to explain why they aren't like "everyone else". Who is "everyone else"? Neurotypical people aren't a homogeneous bunch. They have challenges and differences a d difficulties like everyone else. I do fear that as a country, and maybe even a world, we're actually getting less tolerant of differences by basically confirming there's a standard behaviour and any deviations to that are not "normal". I think there used to be a much wider range of "normal" than there is today and we might actually be going backwards in terms of accepting differences in people

It won't be me who judges you. I applaud you for no seeking a diagnosis that's not going to offer your child son any advantages at this point. Your son is high functioning and as parents you've made sure he's doing great academically while being fully aware what areas he struggles with and how to cope with them.

The problem as you know is that ASD is a huge spectrum with many kids and adults needing 24/7 care. The youngest the child is able to access early intervention, the bigger difference in outcomes when they reach adulthood.

I don't want to judge parents but unfortunately, some of them are so deep in denial they don't seem to understand how crucial is early intervention.

Another issue is whether the NHS is capable today to offer the individual support to parents and children. Reading some of the big issues with the NHS these days, it's understandable that if parents can't access private intervention because they don't have the money, they simply give up.

Once diagnosed it was clearer to my son why he was struggling and different to others. He really did and does stand out a fair bit. Not so when around other ND people, which suit him better generally if they have similar traits. I don't know how much he cared or was bothered at times and if it was more about me if I'm honest.

I read ' The Autistic Brain ' by Temple Grandin. She cites new research into structural differences in the Autistic brain and studies involving PET and MRI to demonstrate. I can't recall the exact details. I recall something about her brain having significantly longer ventricles in one image compared to controls. I can't recall but a great book and explanations regards the different ' wiring ' or circuitry theory.

@Alondra the NHS refused to assess my son and I was gaslit in all ways it felt. I had the strength and energy to push on with accessing money for a private assessment.

Right now, due to other issues, I would not have the strength or will to keep pushing and would probably have given up. They do it on purpose to drive you away. It's awful.

I’m not sure early intervention is particularly helpful either in all instances (sorry). My own take on it is that some children genuinely do need longer to get through developmental stages. How pushing them forward really helps I’m not sure. There is HUGE pressure to seek diagnosis but what does it actually achieve?

Is it not about getting the child the help they need or helping them with understanding themselves, rather than labelling them.

@2Sensitive and if they already “understand themselves” or I guess conversely can’t understand themselves, what then?

I feel for you and all the parents in this situation. It's beyond awful having to give up seeking essential support for children, and adults, because the system is failing.

The process is lengthy and convoluted. I understand the point someone made about being different to everyone else as if everyone else is one homogeneous group but when your child really can't read social cues you start to wonder is this something a bit more going on. Is there something that might help read social cues.

One of my DC recently got diagnosed after jumping through several hoops. Not sure what support he will get at school but one suggestion from psychologist is he might need extra support in how to interpret exam questions as he will likely be very literal in how he interprets questions. I hadn't thought of that.

I used to manage someone who got a diagnosis late in life. He was brilliant at what he did but could be direct and whilst I didn't think it was rude the work culture didn't really like directness. He was very open about his diagnosis and I found it helpful when responding to people who struggled with his directness.