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 notice a lot of people like to stress how 'high functioning' their child is, would they prefer another term like Asperger's were used to differentiate their child from those with higher support needs? Would that be an acceptable 'label'? I have seen people openly state that, although not on here, Hans Asperger would be proud!

My son is way younger than you, but as a younger child he was really miserable, he was then diagnosed with dyspraxia and it transformed him. Said before he felt stupid, knew he couldn’t do what other kids could do, didn’t know why so just thought badly of himself. It was like switching on a switch.

Eight years later he’s happy and popular. I’m really glad we went for the diagnosis.

High functioning simply means they are able to cope with day to day life with minimal support, can read, write and speak and have life skills xx

Exactly. I think this line of thinking is horrible. It's ok to be different if you're ND (great) but if you're like it and NT then you're just a weird unlikeable failure. What a nasty thing to say.

Limitation on careers? I don’t understand why this would be? My daughter is ND as am I and there have been no limitations at all other than those that we impose on ourselves as you are not duty bound to advise any employer of your medical history, so as long as you’re able to do your job, there is no limitation by having a diagnosis but on the flipside it may help with understanding one’s own difficulties and the reasons why behaviour is perhaps deemed different from neurotypical people.

As I explained in another post. The Armed Forces are an example of where this was a real issue particularly for some occupations within the services. Severely changes the choices available.
A colleague really wished she hadn't sought diagnosis for her DC. She reflected that no additional support was ever in place during his childhoos, but the wish to be a serving soldier was so problematic it didn't happen.

Some occupations require much more psychological analysis and reporting before being accepted. Airline pilot for instance.

Employment rates in 2021 were very low. Let’s hope this figure has increased. www.autism.org.uk/what-we-do/news/new-data-on-the-autism-employment-gap

Late diagnosed ADHD and ASD here and personally I think that any parent who doesn't go for a diagnosis is neglectful. My parents repeatedly took me to the GP when I was younger and as a teen and no one ever flagged anything even though I was showing so many traits, it has effected my entire life. I have struggled with friendships, depression, anxiety, finances etc my entire life I have always felt like I was stood outside the window looking in on everyone else and never understood why.
I have also watched my poor DD10 struggle with her mental health, having panic attacks and no friends. My heart absolutely broke for her when I sat her down to tell her we thought she was ND and she looked me in the eyes and said "so it's not because I'm stupid then". Getting a diagnosis isn't always about the help you can get but so they can understand themself and why they are different.

No idea why you are STILL asking this despite so many PPs giving very concrete examples of how diagnosis has helped them (as adults) and/or their children. If you have read those posts and you're still asking the question, clearly no one can answer it to your satisfaction.

Really glad to hear a diagnosis helped your child. I worry for kids who are not doing well in school and not ND. It shouldn't be that you need a diagnosis to confirm you're not "stupid". Not all kids do well academically or in sports or any other areas because people have varying strengths, and they shouldn't be made to feel stupid because of that.
I'd add that people should be mindful that very few things in life follow a "one size fits all" approach. If someone who doesn't get a diagnosis is seen as neglectful because it helped your child, then in the same vein, someone who got a diagnosis and it impacted their child negatively would say getting a diagnosis is neglectful.

I'd definitely say people should know what their kids needs and support them to get it

*Edited for spelling

I’m pleased people found it helped them but I suppose my thinking is that if you’re like me, if being told ‘you are autistic’ wouldn’t help and in fact would achieve the opposite then is there any benefit beyond this? That’s more a rhetorical question than anything. I am definitely noting however that there is a certain amount of belligerence around the very idea some might not want a diagnosis and I am wondering why that is.

I suppose you need to consider the possibility that your son might see it differently when he is older. Whether you pursue an assessment / diagnosis for yourself or not is entirely up to you. But for your son you need to consider what's in his best interests now and later in his life.

I don’t disagree with that but I think given that he is very, very young, that there isn’t anything ‘overtly’ different about him and that nursery have raised no concerns (the opposite) it would be unwise to start insisting I want him diagnosed. I think in many ways school will be revealing and we’ll see what happens then. I don’t think he’s ND but the internet says I’m wrong!

I think one of my DC is ND and have spoken to school about it more than once. Nothing happens. Have filled in forms for Senco. Nothing happens. Definitely a high chance genetically as multiple diagnoses in DH family.
But school don't refer so maybe I'm wrong and maybe my child will just have to accept that people (ND or otherwise) may just think they're "stupid" or a "failure"

I'm in a similar situation @Shwish.

Glad to hear that makes me a 'neglectful' parent as well, according to many posters here.

@Shwish have you tried GP? This is what made the difference for us.

Our GP weren't any good either - either ping ponging back to school or putting on lists that timed out.

Worth trying as in some areas GP are helpful - DD1 uni GP and uni services have been very helpful.

It is nasty to hear people say we should have tried harder - we pushed and pushed for years - didn't drop it at first hurdle and got what support we could in meantime for them .

High functioning was used to differentiate those with average to high intelligence as measured by highly inaccurate IQ tests, from those with high support needs. It is now not used as it is considered unhelpful and insulting. Autistic people with a high iq may not always function well so categorising them in this way just led to them being denied help they needed as iq tests are not an accurate measure of functionality. The better term is low support needs and even then that often fluctuates widely over a person's lifetime.

Also the reason Asperger's was named so was after a Nazi eugenicist who categorised some autistic people as having a high enough iq to be of use to the Nazi party, the rest were sent to be euthanised. We should have moved past this sort of language by now.

WAS being the operative word here, high functioning does not mean average/high iq/ smart etc, it simply means they can manage their day to day activities without much support, for example making themselves a meal, being able to hold conversation, self care/hygiene, my daughter is “high functioning” autistic she can manage her day to day needs/wants but she struggles socially and is behind with education she is aware she has autism and is ‘different, my son on the other hand is also autistic but is non verbal, needs help to get dress, with toileting and most day to day activities and has no awareness that he has autism and is different, that is the difference between high functioning and classic autism xx

I’m not sure we have discussed the impact of early intervention? I understand you are frustrated but really it’s a range of views that are interesting to most posters. If you don’t want to discuss simply don’t engage.

But it ignores the huge group in between who need less support than the person who is non verbal, etc and the person who lives fairly independently and works.

That is why its not actually diagnosed high functioning/ classic/ aspergers autistic anymore its actually autistic spectrum disorder (ASD) now xx both my daughter and son were diagnosed ASD xx

I use the word WAS as it is no longer used when diagnosing, my son was officially diagnosed as having 'high-functioning autism'. You may not be using it as your daughter has had an iq test, but you are still using the term that is now considered offensive and attaching your own meaning to it (kind of, what you describe is still pretty much how it was used back then too) which doesn't make it any less offensive.

Your daughter has autism and your son has autism. Your daughter currently has low support needs and your son has high support needs. They do not have a different type of autism, they have the same one.

I haven’t “ attached my own meaning” again high functioning has nothing to do with their IQ, my daughter hasn’t had an IQ test, the whole argument is moot anyway they don’t even diagnose autism anymore, they diagnose with autistic spectrum disorder (ASD) (which is what both my son and daughter have been diagnosed with) xx

Autism is a shortened form of autism spectrum disorder the same as ASD is and is used widely medically even if it is not the full diagnostic term. do you ever hear anyone use the term Diabetes mellitus? Probably not most doctors just call it diabetes. And I understand what you are saying, I am just telling you that many find the term 'high functioning' offensive due to its origin just as much as the term Asperger's no matter what people mean when they use it now. I just assumed if people knew they would stop using it but that is because us autistics are very single minded! Which is also why I'll stop replying now or I'll be late for work!

I think most people use high functioning as a way of pinpointing where on the spectrum they/their children fall, its such a wide spectrum that saying autistic or ASD doesn’t really help people understand what help/support they require, if you umbrella everyone under the same term they receive the same support, like i said my 2 children vary widely in the support they need but are both ASD 🤷🏻‍♀️ so to simplify it where there is understanding of level of support the term high functioning or classic autistic helps to pinpoint if that makes sense xx