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 so sad and makes me cross that so many adults would allow their kids to suffer rather than get help.

Not only does it change quite a bit how you parent and the support they get at school (and trust me, it does make a difference when they know) but it’s important for THEM. Their own mental health and how it will help them in adulthood.

Ultimately, the government will make it so expensive to have an ice car that it will no longer be affordable despite the convenience.

Have you got the right thread?

Either way, why does a car have to be nice? Whats wrong with purely functional cars?

Are they not cars? Do people have an inability to drive certain cars if they aren't badged correctly or aren't the size of a tank?

Jesus. But what if you are a "weird failure of a neurotypical? What then?.
God what a horrible thing to say.

We found a diagnosis really helpful.
It explained a lot , made sure that child was getting the support and therapy needed .
Of course it doesn’t change anything, learning disabilities and autism can’t be “ cured “ but coping strategies can be learned.
It can be exhausting and overwhelming, I don’t feel I had support myself as such but at least child did

I agree it is horrible. To think you are a failure in life and everyday is a constant struggle trying to disguise yourself as a NT.

It’s exhausting and your effort is 1000 times more than any NT puts in yet you are called lazy for not achieving what others do in the same time

You have no real long term friends because as soon as you think you can relax in the company of others they spot you are not one of them and the invitations tail off and you are brushed off when you call.

Then after a lifetime of thinking you are a failure and clinging to relationships that are no good for you, you find out there are others going through the same thing and there is a diagnosis which makes everything so much clearer and you aren’t a failure, you just think a different way

This is the bottom line.

I can’t believe so many parents never consider this. To them, it’s all about the support they receive at school*, and not a moment’s thought given to life as an adult.

*Hence those that say “We didn’t diagnose because they received great support at school anyway” or “we didn’t diagnose because we pulled them out of school and home educated them”.

You have to think about how they’ll manage when they aren’t in an environment you crafted for them.

I’m not talking about neurotypicals, I’m talking about the heavy psychological burden of going through life being neurodivergent and not knowing it 🤷‍♀️

How you could read that and think I’m slagging off NTs I have no idea.

I know some parents like that. They are teachers and I have discussed it with them.

They believe that giving their child a "label" would just make him even more "different" from his peers than he already is and wouldn't actually help him (his suspected ASD is mild). They also worry that it might encourage him not to even try to fit in, as they say they have seen cases where children and their parents just use a "mild ASD" diagnosis as an excuse for poor behaviour. As they see it, rightly or wrongly their son has to learn to live with others and fit into the world as it is, for his own future happiness, and they don’t think a diagnosis or "label" would help this and in fact might hinder it.

@Jellycats4life i think you’ve missed the point as to what that poster was saying.

There is (IMO) an assumption sometimes that there are basically two camps: one camp is NT and they are ‘normal’; fine, OK.

Then there are those who are ND who, without having a diagnosis explicitly saying they are ND will believe themselves to be (as you put it) weird, unlikeable, failures.

The reality is far, far more nuanced than this with numerous grey spots and crossovers. If we take just a few hypothetical examples from this thread alone, we have young people who are fairly sure (as are their teachers : caregivers) they are ND, but they come from affluent, educated backgrounds, their schools are happy to make adjustments for them, they are confident and happy with who they are. I wouldn’t say they ‘need’ a diagnosis in order to stop them believing negative self thoughts or to give them confidence. They are accepted and supported for who and what they are.

If we imagine a hypothetical NT child, with no autism or ADHD we are aware of but who comes from a chaotic background with numerous house and school moves, no real stability in terms of home environment or friendships, relationships with teachers, and we all know these children do exist, well - they might not have ADHD or autism but they may well grow up with feelings of being a failure, of not fitting in, of self doubt and so on.

In other words, you’ve grown up believing awful things about yourself. Since then, you have realised these things were not true, they were because of autism.

What if someone had turned around and said ‘no, you aren’t autistic.’ Would you have then concluded ‘oh, actually I am just an unlikeable, weird failure’?

And we are all products of our environments - autism / ADHD or not. One of the things I’m hyper aware with re DS is not to be constantly correcting and chipping at him. Sometimes hard not to.

Just as ‘if you’ve met one person with autism, you’ve met one person with autism’ stands that’s true of people generally. There are many odd, difficult NT people and many people who are ND can be charismatic, charming, mask so well that if they are autistic barely anyone would know (I wonder this about myself actually!)

I think this is well said. I’d add that one family not finding diagnosis helpful doesn’t make another seeking it any less. There are many ways to skin a cat.

Because you were slagging off NT! I agree a diagnosis is probably going to be helpful for most people. I am currently in the process of trying to get my DC put forward for assessment. However if he's not found to be ND does that mean he's just a weird unlikeable failure?
Or maybe I am? I'm pretty sure I'm NT but have a lot of ND traits due to childhood trauma. The implication in your post was that if I was ND that would be ok. Since I'm (probably) not then I'm just a failure.
I can't get with this black or white thinking. To me there is more than NT / ND / failure.

@Shwish you're really misinterpreting what was meant by @Jellycats4life. It is not intended to be offensive to any party.

What she is saying is that when someone is ND and they don't know that, the NT social rules that they may struggle with will make them believe in themself they are useless failures. They will think they are NT but a defective version of that. Knowing one is ND and therefore simply wired differently and therefore not ' wrong ' can be a great comfort and revelation. ND people are forever accused of being lazy for example ( if undiagnosed) when laziness is not the reason this person struggles with a particular issue. I think of my own child and complete dislike of toothbrushing! Everyone would say you lazy little terror. But now it's ahhh it hurts, you hate the feeling, the sensation is so uncomfortable it goes through every part of you. You are not lazy.

When you apply NT rules to an ND life ( and you don't know you're ND), I agree it must feel bloody soul destroying.

I think @Shwish meant that nt people who struggle in the ways described are NOT failed people and describing anyone like that was horrible. Which I agree with.

On a separate note, diagnosis is not the only way of accepting yourself or creating an environment where you are valued.

It is a process. It if starts with a teacher suggesting traits that may warrant exploration, it often comes as a shock.

There is a period of denial - the teacher next year is told not to bring it up, for example.

At the end of primary, there can be a crisis point and the parent can then accept a referral. Sometimes the crisis point comes in secondary.

The only issue is the child has lost years and the waiting list is years more.

If we take just a few hypothetical examples from this thread alone, we have young people who are fairly sure (as are their teachers : caregivers) they are ND, but they come from affluent, educated backgrounds, their schools are happy to make adjustments for them, they are confident and happy with who they are. I wouldn’t say they ‘need’ a diagnosis in order to stop them believing negative self thoughts or to give them confidence. They are accepted and supported for who and what they are

DH is in HE and he says the problem then that schools have made accommodations without formal diagnoses but uni policy is they have to them to make accommodation then they get hit with waiting lists.

Though I agree with the general point - we parented the kids we have and worked on their issues and found strategies for them to cope - we watched them and listened to them and worked out what they had problems with and saw what worked - and sometimes with age that changed. It's how my parents operated - and worked for me and my siblings. I didn't need an expert to come in and tell me my eldest struggled with noise - and textures -I saw that for myself and then looked up and tried things to help. So I'm bemused by the posts that parents can't parent property without a detailed diagnosis.

I also won't look for further diagnosis for me - I experienced euphoric vindication with first but workplaces haven't been nice about it. Plus I know where I struggle so even though I think ADHD is very likely in me what the point of pursuing why not just keep finding strategies to cope.

I really tried to get dyslexia diagnosed for eldest two at least - as could see benefits but schools obstructed and when we hit a brick wall we focused on programs at home that could help them.

I really would keep an open mind and if anyone else raises concerns see if you hit criteria to get on waiting list - but at 4 the concerns could just be outgrown but as they get older and gulf between them and peers could get more noticeable and that would be time to get on waiting lists. So see how he copes with transition to school and then as school gets more formal as hit end of key stage 1 and start of key-stage 2 then secondary.

Thing is I think you have to be fully on it and a bit pushy to get things sorted. I’ve been a bit concerned about dyslexia - school has been non-bothered to say the least as my daughter is bright and doesn’t cause problems in class until a new teacher started and encouraged me to speak to the Senco. It’ll cost me £700 for a private assessment plus time off work.

Clearly not everyone will be able to afford that. For other conditions NHs waits are long, councils are taking the piss re rejecting ECHPs. It’s not an easy road at all.

We were on it from the word go - as I was diagnosed already so aware - and very pushy seeing SENCO best we got was each school DD1 went to doing an notoriously unreliable screening test find her broadline and that was it - £700 private was what we we looking at beyond us - and hard to justify when it not clear to other parent there is an issue as the teaching staff are flip flopping. DS we struggled to get to that point however persistent we were a lot more was blamed on him being a summer boy or just being a boy.

It was nice for me to hear in ASD assessment and via DD1 after her dyslexia/dyspraxia assessment at uni that they thought level of support she'd from us at home had been exceptional and she'd been lucky to have that - because so often people blame us - why didn't you - when we often did.

I did feel a bit better as one of DD2 friends just be diagnosed Y11 - one of her parents is a teacher and they said same as us - they and to go private in the end and have found the schools before and after incredibly unhelpful - and that was knowing more of the system.

Uni services have been turning point for DD1 as the service are there and willing to put her on waiting list - but most of her education done by now.

What she is saying is that when someone is ND and they don't know that, the NT social rules that they may struggle with will make them believe in themself they are useless failures. They will think they are NT but a defective version of that.

Thank you @Tittat50 that was exactly my point.

I wasn’t talking about the ways in which people (NT or ND) are perceived by others, but the way in which undiagnosed ND people perceive themselves.

Big difference.

I don’t think anyone is struggling to understand what you mean @Jellycats4life . But in the context of this thread I don’t think the decisions boils down to diagnosis = not weird / success and no diagnosis = opposite.

Maybe love and accept ourselves and others for who and what they are are a better approach than this very rigid sort of thinking where a diagnosis changes self perception.

I work at a nursery and obviously they’re at that age when you track their development alongside health visitors and put referrals through (with permission) for things like speech and language. Even though I always explicitly say to parents “it’s just to help them catch up, we refer early because the waiting lists are long, it’s not for a diagnosis and doesn’t necessarily mean they have any additional needs”, etc. we still get some parents that refuse any help whatsoever. I think it’s when they are in denial and scared the child will be labelled. It’s worst when both parents have conflicting views and try to get you to give them an answer that you’re not qualified to give them.

This is also somewhere that people having a diagnosis can help.

'On-call, on-call, Bessie has left class without permission'.

<lots of SLT panicking and the immensely irritating click-clack of heels at speed down the corridors>

WHERE IS SHE? Quick, everybody start searching before we call Mum to say she's missing and to phone the Police!

<glances out of window because Bessie is not going to be likely to want to hide indoors, not with that crappy lighting and the noise from the year below scraping their chairs on the 2nd floor whilst the year above are doing choir practice in the next classroom>

Yeah, she's running around in circles on the playground.

DON'T SIT THERE, THEN, GO AND CATCH HER!

Why? She needs to run, let her run, get a coat (and a coffee in a travel mug) and watch her, but let her run. Not ideal, but what did anybody expect after over an hour of being expected to sit in silence and then being loudly told off for tapping, fiddling with her pencil, slumping and rocking in her chair?

'Don't be ridiculous, you can't let children behave like that - whatever gives you the idea that actually letting her run instead of all of SLT chasing her around the playground, school site, round the back of the bins and then putting her in a classroom full of potential projectiles and a single TA between her and a locked door for the rest of the day would help?'

Umm, AuDHD? It would make me a hundred times worse, never mind a kid Bessie's age. By the way, a suspension would be illegal in these circumstances if anybody's thinking of trying it.

'Ohhhhhh'

Maybe love and accept ourselves and others for who and what they are are a better approach than this very rigid sort of thinking where a diagnosis changes self perception

All well and good saying that but the reality is, that it mostly doesnt happen. Children can be cruel to one another and they somtimes dont accept children who are different.

We can say that we should just accept everyone for who they are and I 100% agree, but that's not what happens. We all knew a weird kid growing up who people didnt want to be friends with.

A diagnosis does change self perception and unless you've seen the massive difference it makes in your child once theyve been diagnosed and start to understand themselves, then you just dont know what your talking about.

It is awful that people need a diagnosis to be able to start to love themselves but if your ND and raised in an NT world I can see why so many ND people struggle to accept themselves

Her ADHD assessment is on Wednesday! We’re also in the process of doing the needs assessment for ehcp too! Fingers crossed.