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?

I see my son as a unique individual, not through the lens of a diagnosis. I've started to fill out the forms for an asd referral but it feels like a list of ways he malfunctions and that became a barrier for me.

The gp over the phone, without seeing my son and knowing sendco has flagged him up, told me he didn't think my son would pass the threshold 🙄🙄. So that's another barrier.

DH is against diagnosis.

School has agreed there is nothing they will be able to offer in terms of extra support (his main needs are social) with or without a formal diagnosis. So what's the point?

DS is now in Y9 and is able to go to school and access the curriculum. He doesn't thrive but he gets by. I see no positive to a diagnosis only a long drawnout battle. If diagnosed, he gets to live the rest of his life with a label. It could be a great way he gets to know himself or a self fulfilling prophecy. I don't want to play those risks.

You can get a 'no' at the first hurdle.

I suspected that one of mine was dyslexic and asked the SENCO at her school. 'Oh, no,' said the SENCO, 'It's just that her spelling is a little weak and we've put some strategies in place.' Some of the other staff thought that a very articulate and sparky kid was just a bit on the stupid side and didn't pick anything up.

Finally, in her late teens, diagnosis of moderate to severe dyslexia. I wish I'd pursued it beyond the SENCO: it would have made school life easier in the short term, though probably not had much impact in the long run - the DC in question did well academically in the end.

What I don’t get about the ‘label’ thing: even after a diagnosis, it is your choice to disclose it or not.
A PP mentioned career limitation, how??

My experience: since DS has been diagnosed with high functioning autism, what used to be considered ‘bad behaviour’ at school, resulting in warnings etc, is now treated as challenges and the school staff work with him to find strategies. Minor things such as not assigning him a desk next to the window as it was too distracting.

We are now looking at secondary schools, St Paul’s head’s speech: « we have diversity at our school: neurodiversity! ». Similar at Westminster.

I think a diagnosis which allows you to 'understand yourself' is a double edged sword.

On the one hand it maps out the reason why you think and behave as you do and this can provide knowledge and comfort, on the other it robs you of the opportunity to claim your thoughts and behaviours within the narrative of your particular personality and achieved outlook on the world.

For those who struggle to move through the world a diagnosis brings benefits, for those who are able to manoeuvre through the world more peacefully, it is a potentially highly reductive labelling that diminishes their rich inner world to an unhelpful conflict of that which falls under the lens of diversity and that which isn't.

Another one in the situation! We had a teacher say something about dc2 possibly being autistic nearly a year ago, and yes, it was a light bulb moment, changed how we approached some thing with her, but we haven’t gone for a diagnosis.

like others, once I realised it would take 3 years, I’d have to fight for this and this would not lead to any help, I’m not sure what the point would be.

My experience as a parent was schools and teacher flip flopping on if there was a problem and what the problem was.

You then can't get assessed and working out if it's worth paying privately is hard especially when other parent doesn't see as many problems and their family downplay it all or flip flop. Three schools did dyslexia screening found DD1 borderline and that was it - and the effort to get to that point was extreme. Finally got properly tested at uni she has it.

College insisted for DD1 it was ASD - so went on waiting at GP as college couldn't asses and refused to do Dyslexia and dyspraxia tests - she timed out. Her friend went private he parents paid about 4K in the end - we don't have that money and we don't spend that much on holidays ever. Ended up at uni took a year got through screening got assessed - she not ASD but has something or several somethings- so had to get on other lists and get assessed.

I've been raising concerns since she was at least 3 about her and another child we just don't have money to go private - though all services say she had huge amount home support.

Plus speaking to friends who did go down private route - the support often isn't there in school anyway and it can lead to lower expectations of the child. I had that myself people knowing I was highly educated but finding out I'm diagnosed as dyslexic suddenly acting like I cant read.

Label 🙄

Would you say the same about a parent who refused insulin as not to "label" their child as diabetic.

Or a parent who didn't give inhalers as they do t want to "label" their child as asthmatic.

Or a parent who didn't get their child glasses or a hearing aid to avoid being "labelled" as VI or HI?

Thought not.

It's such a lazy term used to degrade those who have a ND diagnosis.

OP some parents are fearful of their child has a diagnosis - especially something like ND or a specific learning difficulty - it will hold them back. Sometimes it's an acceptance thing. Sometimes it's differences in what people will tolerate. Some parents accept their child for who they are and don't have the knowledge and/ or understanding that in future their difficulties may have a greater effect.

Lots of reason really. And yes - neglect can be one of them.

You don't need to lecture me, I am ND, and I have ND children, one of whom decided they didn't want to pursue a diagnosis and another who did.

My child who didn't pursue a diagnosis knows they are ND, but just doesn't want that label, which is absolutely fine. The other child had multiple other issues and the diagnosis came about as part of that.

You can understand who you are without a diagnosis.

Your experience isn't everyone's experience.

@Sunnyandshiney is he definitely autistic rather than just gifted?
As no social issues etc?
But either way if it isnt causing him issues in theory he wouldnt get a diagnosis as supposedly its only if its causing significant issues.
There is an element of kids coping ok with primary, a couple of friends etc and then moved away from them to different secondary and are finding secondary kids much harder. There is a lot of group work too. More selection of partner in pe. Really depends where the kids worst weaknesses lie.

I would say other kids can tell who the autistic kids are.

The awaiting diagnosis kids i know are struggling a lot with several years waitlist. Anxiety, suicidal, bullying,friendship issues.

I actually think labels are really unhelpful. They've shown that labels can be stigmatising, hold people back in careers and from developing better social skills (as they believe they are X, and can't improve because of the diagnosis). So I'm actually quite against labelling kids with ND, even if they exhibit symptoms. Outcomes aren't better for kids with labels, sometimes they get worse with a label.

Why do you think all kids should have a stigmatising label if they are ND, OP?

If it's a route to get support and funding, I can see why parents do it, but imo you shouldn't need a "label" in order to access extra support if your kid needs it.

@itsgettingweird - not the same as being diabetic or asthmatic or having visual problems - because those are all conditions where a diagnosis leads to treatment options and help to manage your condition.

there aren’t treatments for autism.

some children would need support in school or to go specialist settings, but if your child isn’t one of them (like ours) there’s little obvious point.

Are you a secondary school teacher wafup? What does your school do for the children with a diagnosis who experience these issues and is there any reason that they can't be extended to children who are anxious/ suicidal with bullying and friendship issues who don't have a diagnosis?

My friend and my cousin have refused to seek a diagnosis.

IMO both of them are screwing their kids over, especially my cousin who has SERIOUS needs and is now 12 and deeply behind. Neither want their kids "labelled".

My cousins kid is a very complex child and extremely explosive. This child is going to have enormous issues now they are high school and the whole family seem to just accept it.

My mates kid has a serious speech impediment aged 15 and no one seems to care that they at being bullied for it. They are incapable of controlling their emotions, and will struggle when they finishes school soon as they are unlikely to pass much...

In both cases I'd say not neglect as such, but definitely problematic. Both kids are missing out on a lot of support and are unlikely to be meeting their potential.

My DS has Aspergers. I use that term as I think it describes him well. I spent a long time not trying to get a diagnosis but finally did in year six . He is highly intelligent and extremely well behaved but anxious I wasn’t sure what he would gain from one, or if the label would be a burden.
He went to a super selective grammar school and did really well socially and academically.
When he went to university he was allowed to live on campus for the whole 4 years because of the diagnosis, which really helped him cope.
He is now a developer. An industry which sees neurodiversity as a gift.

DS struggles with noise overload and sometimes regulating his emotions, but this is improving as he is maturing. He hates being in a class of 30+ kids, the noise and bad behaviour sometimes triggers him and he'll just get overloaded and over stimulated. But he's a very charming lad too, he can be funny so whilst most of the kids know he's different it's a kind of quirky different and they accept him.

He is quite possibly gifted because he finds the maths too basic and boring. Plus all he wants to do is science, can't wait to get into a lab! He's our own Flint Lockwood ☺️

The school he's going to will have classes much much smaller and the atmosphere is much quieter and calmer. DS has already spent time at the new school and absolutely loves it. I'm very confident that he'll cope just fine at the new school as they specialise in SEN support alongside mainstream.

He's almost certainly autistic but High Functioning so there's no help other than what we and the school put into place for him.

Mental diagnosis rather than physical diagnosis doesn't have the same stigma attached to a "label" so it's not accurate to compare a label of a physical diagnosis to a mental one.

There's a lot of psychological evidence that labelling kids as ND does more harm than good. I'm personally very against ND labels, as are many academics in this field.

Notice I'm against labels - not treatment and support for neurodiversity.

Basically there's a branch of academics that argue everyone is on a continuum in terms of behaviour. You don't label anyone as being abnormal, because everyone sits in a different space on different measures, but if someone's daily life is impacted to such a degree that they can't function - they are then offered support and treatment in order to function better.

But at no point is anyone "labelled" as other and different from others.

I actually think labelling kids as different is an awful thing to do. They might need extra support, that doesn't mean they need a stigmatising label that could impact them for life.

Well. Hmm.

We didn't pursue diagnosis for our younger children because they seemed relatively "normal"/NT by comparison with our oldest or indeed the rest of our families -- and getting through the process for him was frankly exhausting us.

At university, both have been asked why on earth no one had picked up on things earlier. But if you're a family of zebras, you don't always realise that everyone else is looking for horses.

Dd2 is dyslexic we knew she was from an early age but the school would not support a diagnosis and we could not afford it privately. She was finally officially diagnosed at university and has a long list of additional requirements. We used an amount of inheritance from my mother to get dd3 diagnosed as same issue.

For us it was lack of support. Oddly for dd3 the "senco"(said super loosely) was adamant she was on the autistic spectrum and referred her for this despite us not feeling this was an issue after first referral said not autistic spectrum but social shyness she tried to push for a 2nd opinion. At that point I did say no. I had been open to a diagnosis if I was wrong but I felt no need to push hthe senco agenda. When none of dd3s family of close friends felt she was. What a shame the same "senco" didn't push for a dyslexic assessment. Dd3 has severe dyslexia and the difference now she is supported is huge. (She is at uni studying astrophysics)

Senco would likely even now 10 years on claim it was autism. The senco at secondary called .e 1 term in to ask for clarification as they saw no issues. The primary senco had put it in the handover despite no diagnosis. Senco at 2ndary was amazing.

The gp over the phone, without seeing my son and knowing sendco has flagged him up, told me he didn't think my son would pass the threshold 🙄🙄. So that's another barrier.

The ASD service, the assessor who did finally full test on DD1 and found her to have dyslexia and dyspraxia - have all put her forward to the ADHD service who keeps rejecting her from the list.

The student services have a service that can give an academic assessment of ADHD - which she likely to get they think - but won't lead to medication - GP put her forward again as well. It's a three year wait - so she may well have moved on by then and she spent 2 year before timing out here on ASD list.

She won't really get more help with the inattentive ADHA diagnosis - she not really had any help with dyslexia and dyspraxia she on 100% project work course now - and she not sure she want medication - she already has many coping strategies I think she'd like to know but at some point may just not be worth it.

I’m in Ireland, and here the vast majority of school supports aren’t available to children without a diagnosis.

@ByMerryKoala on the other it robs you of the opportunity to claim your thoughts and behaviours within the narrative of your particular personality and achieved outlook on the world
do you mean that it may ‘diminish’ their achievements, for ex a very artistic person who could think ‘I’m only artistic because of my autism’?
Is your outlook coming from someone with/without a diagnosis or as a parent of a child with/without a diagnosis? Not a snarky question, I’m genuinely interested in the points you are making.

Have you ever tried actually going down this route, OP? Do you know how hard it is, how long it takes, and how many obstacles the authorities put in parents' way? How schools just mark kids as making average progress and never spot any signs? How many girls never show any signs until puberty? How much it costs to go private?

I suggest you go away and find some answers and then answer your own question.

We didn't pursue diagnosis for our younger children because they seemed relatively "normal"/NT by comparison with our oldest or indeed the rest of our families -- and getting through the process for him was frankly exhausting us.

That is one thing the ASD process pointed out to us a lot of what we think of a normal behavior or struggles in our family - really aren't in the general population.

I think if we could have got them disguised as dyslexic in primary as we'd wanted the extra time in exams would have been most useful - though we did support at home that in end was just assumed it - and lots of scaffolding with more general life skills.

To all the “don’t see the point” parents - if your children are at/near teenage years, why not involve them in the conversation and make a decision with them? It’s their life after all. The path of “functions or excels at school, all goes to shit at uni / the workplace” is a very well trodden one for ND folk.

I sought out diagnosis as an adult after feeling frankly odd or malfunctioning for most of my life, and usually taking it out on myself. My parents, school, work colleagues, friends, acquaintances would all tell you that I am lovely, smart, able etc - because I hid how I felt and worked 12 hours where others worked 8, to cover how inadequate I felt and how long things took to do. Oh, and self harmed on a massive scale. Including at home, as a teen. Always in places on my body where others wouldn’t see. I was in my late 30s when I sought out diagnosis. That’s over 30 years of feeling dumb, less than, malfunctioning, panicky, stressed, tripping over basic tasks. My parents didn’t and don’t have any idea.

I wish someone at home or school would have taken me aside and pointed out that I was good at a,b,c but seemed to battle with x,y,z, and let me know that it was ok and there were strategies we could try to help, let alone medication. That would have been very unlikely in my Commonwealth school in the 1990s, but hearing people say the same about their kids in the UK in 2024 is frankly heartbreaking.

I find it mind-boggling and I judge like crazy. Even if a diagnosis isn’t always the magic key to extra support at school, it can be so helpful for a child (or adult) to understand why they find some things more difficult (and other things easier) than their peers and that they’re not just weird or wrong in some way.