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 brother and SIL have always avoided getting their teenage daughter assessed though wider family have a strong suspicion that she's autistic, as had her teachers at school. My niece is so lovely, but she's the most socially awkward and paralysingly shy teen I've ever met. She's never really had any proper friends and she presents as much younger than her age. She's so socially challenged that she can't cope with school or college at all and is at home full time at 17. I really worry for her - she's also very very pretty and attracts a lot of attention from both boys and girls, which is absolute torture for her. I really worry about her self esteem and how vulnerable she is. My own son was assessed and diagnosed at 7. I knew he was autistic when he was 3, it just took me a long time to persuade CAMHS to see him. It's really helped him understand himself and his mental health challenges, which are in part due to his autism. He's also taken advantage of support at university for his disability. My lovely niece has had very major mental health issues over the past year, which I'm sure are related to her neurodiversity. Really wish brother would get her assessed.

Also the mental health struggles, medications, support in school etc will still be there. You can’t hide that as much as you’d like to. Trying to hide what children are for a life you want for them way off in the future to the detriment of their support actual and needs is pretty shit.

@LazyD0g I guess that’s the point - some posters are saying that they suspect their children are ND however they are not adversely impacted, so do not see how a diagnosis would be beneficial for them currently.

‘Trying to hide what children are’ - I suspect this is what people who are cautious of diagnosis are keen to avoid. ND is not WHAT they are. It is an umbrella term that encompasses a wide range of behaviours, not accounting for personality and individual differences. I can see how some people would not want their child to be ‘reduced’ to a label, particularly if they do not need a diagnosis to get support. There is a concern the child will be stereotyped and won’t be seen for who they really are. I would say exactly the same for any type of diagnosis, whether that’s physical or a mental health condition - it is not a persons entire identity, just one aspect of them.

I can see both sides here but I do find it interesting how those who are pro-diagnosis seem to struggle to understand alternative perspectives.

Because when teachers and professionals mention it it’s not just in passing but because there are issues which need addressing of which they think a diagnosis would help. If children are not adversely affected they a) wouldn’t get a diagnosis, b) be noticed by teachers and c) wouldn’t have their parents contacted by teachers and professionals.

@LazyD0g I think there have been posters who have said that a diagnosis has been suggested to them by a professional(s) but they didn’t see the value in it as their child was not struggling, they were just different.

When I worked in CAMHS I experienced this too. There were quite a few referrals for ND diagnosis for children who were ‘in the system’ already for mental health support following trauma, adversity and often family dysfunction. Diagnosis was sought to understand certain behaviours that made sense when you understood the family context. I do think that even professionals can jump to suggest ND (particularly ADHD) without considering the broader context. Which is why it’s good the assessment process is so thorough!

I think you are choosing to believe that your experience is a universal experience. As I said I know many people who have permanently (as in gained nationality) in more than one country. If you don’t then maybe you move in different circles?

I can’t agree with that but I wouldn’t say diagnosis is the gateway to support. If you believe it is then I can see why you are so positive it is a good idea.

I don't think I am blinkered about it but I am pro diagnosis because I think that in the vast majority of cases, the potential positives outweigh the potential negatives. Note I have said "potential" because I realise there are not positives for everyone and there are not negatives for everyone either.

I also can't help but suspect that the reluctance to pursue an assessment and diagnosis is often rooted in fear and denial; deep down people don't want to know (or want it confirmed) that their child is autistic because they don't want their child to be autistic. They don't want others to perceive their child negatively so they are afraid of the "label". It takes optimism and courage to seek a diagnosis in the context of an ableist society.

I also can't help but suspect that the reluctance to pursue an assessment and diagnosis is often rooted in fear and denial; deep down people don't want to know (or want it confirmed) that their child is autistic because they don't want their child to be autistic.
I think this is only the case if you think autism is the worst outcome for your child. Outcomes for children with severe language disorders (for example) are much more positive if autistic than not (or were when I read about it some years ago, the demographic of “autism” had changed significantly since DSM changed criteria) simply because those who received a diagnosis of language disorders instead of autism were more likely to have fairly all encompassing processing disorders and reported less positive life outcomes.
I think assuming those who don’t pursue dx are negligent, “in denial”, or lazy is pretty much as obtuse as assuming those that DO pursue it “just want a label”, “are trying to hide their poor parenting” or are seeking attention, benefits or special treatment for their child. They are offensive ideas that seek to reduce an already complex and emotional situation to one where there is only one acceptable course of action.
it’s a shame because no real understanding can ever be reached in this weird black and white dynamic.

I don’t know about anyone else but i felt mostly relief when my son (now 9 diagnosed at 3)and then my daughter (now 14 diagnosed at 11)finally got their diagnosis, not because they would get the support they needed because since the diagnosis we have had no support, which i think is the case for most parents, loads of support/appointments/ specialists up until diagnosis and then nothing 🤷🏻‍♀️ but because it ment i wasn’t going crazy, i wasn’t being an over protective mum, i hadn’t done anything wrong, which when pushing for referrals i was made to feel like, even OH was in denial at the beginning, the HV actually said to me if it wasn’t for girl twin hitting milestones etc they would have referred me to SS for neglect for boy twin being so far behind 🙄, it took nearly 2 years for my sons diagnosis and 6 years for my daughters, my daughters took longer because school etc didn’t take me seriously until son got his diagnosis and then realised i might actually know what i am talking about 🤦🏻‍♀️.
Personally i wouldn’t put a child nor myself through the referral process, assessment process etc if they didn’t need it, as its all those pointless assessments is the reason it takes so damn long for people who actually need a diagnosis (because they actually struggle with their ND) to get one. Im 99% sure my younger daughter is also autistic, she doesn’t struggle with school/socially/self care/ life skills and a diagnosis wouldn’t change anything for her so would just waste nhs time n resources. So i have gone both routes where i have pushed for diagnosis and where i haven’t and either is perfectly fine xx

People still question the diagnosis though, even though like you say it is thorough!

it’s also hard when so many conditions overlap, especially ASD/ADHD/Anxiety.

I disagree.
With any diagnosis for a parent, there's emotions. I equate it to the five stages of grief theory.
It's not that you are sad that your child is autistic, or whatever diagnosis you're facing. It's that you realise that your child is "different", (ds in my case) and that they are facing a future that may well contain difficulties, issues, discrimination, misunderstanding, and a million and one adjectives that will apply more to your child than others.
You go through denial, guilt, bargaining, and depression, before you come to acceptance.
It's not that you don't want your child to be themselves, because you love them dearly, every single inch of them and who they are, but you can still, despite that, feel the whole range of emotions about the future. Be scared or worried.
It doesn't mean you're neglectful, or lazy. You just have to come to terms, and for some that's harder than others.

It's that you realise that your child is "different", (ds in my case) and that they are facing a future that may well contain difficulties, issues, discrimination, misunderstanding, and a million and one adjectives that will apply more to your child than others. but surely for most they realise this long before (or without) diagnosis? I can see if you receive a definitive diagnosis at birth that this might very well be true but whatever name you Dr suggests for your child’s difficulties after you’ve “pushed” for assessment surely the outcome for the child isn’t that impacted by it? I mean they are who they are regardless.

I don't think it makes any difference. You still have to come to terms with a confirmation, even if you know it's coming. You can know 100% in your heart, buy having it set in stone by someone else can still be upsetting.

But did you not feel the sam3 when you were first told your child couldn’t do something others could, or that they needed extra support or on receiving DLA or PIP or a blue badge or whatever? That’s not about dx and parents won’t avoid those experiences if they don’t pursue dx.

Great post.

Not really, no. Thats a whole other punch in the guts. I don't think there's any feeling quite the same as those around a diagnosis, personally. I was told pretty outright. I can't imagine how it must feel "knowing", but having to bring myself to be the person to admit there's a problem. The admission will change everything, and it's a huge irreversible step.
Everyone is different, and everyone handles things differently. It's easy to judge, right up until you're actually in a situation.

As you say it’s best to be mindful that everyone is different and there isn’t a “right way” to feel or deal with your child’s disability.

I overheard someone with a child in a pushchair at a carboot, saying to her friend "his preschool keep saying he might be autistic because he lines the toys up, but that's just a trend these days, they think they're all autistic" and as an autistic adult, that was so frustrating. knowing he's at the age where a diagnosis would ACTUALLY help, but that his daft Mum thinks it's just "the trend"
in the 80s, girls like me were pretty much never diagnosed. so we never got help. we were just considered "weird"

and there's nothing wrong with being autistic, but knowing that you are can help you deal with it in day to day life.

as someone autistic, it helps to realise that you are.
I once saw the quote, it's better to know you're a normal Zebra than a malfunctioning horse

I once saw the quote, it's better to know you're a normal Zebra than a malfunctioning horse
This has made me think and is a cute way of expressing a yearning to be part of a particular group. I wonder if it’s a more prevalent emotional response in some presentations than others, and actually weather it’s an idea that particularly manifests in female late diagnosed autistics (who presumably are well represented as the voice of autism on this thread)? It’s not a burning desire in my experience for more classically presenting (Kanner style?) autistics. In fact rather than seeking space separate from the main herd much of the drive in that group is to claim their space within the herd. A message of we are part of your group not a subgroup is promoted.
I should be clear I don’t think there’s anything wrong with either approach, I just think possibly the experience of the disability itself might be shaping response.