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 think the insistence there is no difference between a child who is non verbal, incontinent, no idea of social norms and unable to communicate effectively at all and one about to go to university is damaging in the extreme.

At the end of the day it IS a parents prerogative wether to get their child diagnosed or not, as I said in my last post I personally believe it is neglectful not to get a diagnosis because I did fairly well at school, showed no signs of struggling as it was all internal (social anxiety) I wasnt hyperactive, I was inattentive, a day dreamer that lost everything and struggled with friendships. By the end of the school day I was exhausted from masking all day and all I wanted to do was go to bed and sleep, which made everyone believe I was "just lazy".
In my adult years I struggled to function like everyone else and couldnt understand why everyone else could could with parenting and being an adult and I couldn't, I became very depressed, started having panic attacks, had to force myself out of bed and the house everyday, this accumulated in me being suicidal and just wanting to end it all as I felt useless, like a waste of space that didn't deserve to be alive. Luckily I got help in the form of antidepressants and a diagnosis of ADHD and ASD and now everything makes sense.
To me a diagnosis isn't about getting medication, help etc if they are managing at school without and don't need it fantastic it is about the future and helping them understand themselves. I say it is neglectful because why would any parent want their child to go through what I went through all for the sake of a diagnosis and not wanting them to be "labelled"

Your reasoning is post-hoc though and you're also generalising from your experience to all people in order to accuse parents of neglect (a moral failing at least, if not an actual crime at some levels).

PPs are wondering what research would actually find, I think this would be an important topic.

I am not generalizing, so many ND people have come out and said the same as me. Her that was married to Paddy McGuinness ( cant remember her name sorry, I am terrible with names), the guy that won I'm a celebrity last year, so many vloggers on youtube. I mean check out ADHDlove and ADHDpodcast.

@Snaketime isn’t generalising at all, in fact it’s basically a universal experience for the late diagnosed.

That’s because they are the ones who are seeking a diagnosis, though. If you don’t want to be diagnosed, because you wouldn’t find it helpful or the opposite, it is unlikely you would seek one!

It a loud experience but certainly not the only or even majority experience.

——

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.
This is a very common theme on most discussions of ASD and related topics. It’s common for those with a different experience to be chased off the discussion or harassed. Of course if you only want to hear reflections of your own views it is abrasive and challenging to hear alternative views. It’s really unhelpful and unhealthy to behave in that way though.

——
POI Asperger was a Dr in WW2 Germany and worked with disabled children. It would have been impossible for him to stay working without joining the Nazi party and I would imagine had he chosen that path there would not necessarily have been a sympathetic Dr to replace him. He created the idea of Asperger’s imo based on his own observation and a desire to save who he could. He could of course run off to the US like Kanner and worked there but it would have meant his ideas and research couldn’t have been copied and passed off as Kanners the seed for the original diagnostic criteria. High functioning is inaccurately used as shorthand for, good at passing as NT and not being too much extra work, but obviously really means “doesn’t have a LD. It’s nothing to do with how verbal or articulate you are. The diagnosis of HFA was extremely useful and definitely not offensive (WTF?) its loss is problematic for many of the autistic population. It’s fairly common for that to be difficult for some other areas of the spectrum to understand

Late diagnosed adults are looking back on their lives and saying 'if only I'd known, X would not have happened/ been different'. Then they are generalising that experience saying 'if you don't seek diagnosis you are failing to prevent harm and are a bad parent on this basis'.

However you don't actually know that harm would have been prevented. If diagnosed then you may still have struggled with feeling 'othered' as a diagnosed person - or a whole range of other possibilities.

People's stories and opinions are important and they should be given weight. But they cannot establish causality in a post hoc way like this.

It's true that failure to seek a diagnosis may indeed cause harm if a kid's needs are not met. But the blanket statements here are not ideal either and more of an open mind needs to be kept imho.

Speaking as a women who was diagnosed in childhood, there's usually a lot of nuance missing on the topic...

I only felt grief being diagnosed, no relief at all. For me, it was never a protection against feeling weird/wrong/broken, and my mental health has never been "fine".
Still, I would not say people shouldn't diagnose as blanket advice, as a diagnosis is often necessary for school and work accomodations, and many people seem to find it useful. For more than twenty years, I've been wishing there were more understanding that a diagnosis might not fit a person perfectly, and might be a negative for some people in some aspects of life...

If you don't seek a diagnosis how do you know it won't be helpful.

Fully acknowledging that a diagnosis may not be sought due to ND.

That is why having this information and let's move the language to what it is. It is a piece of the jigsaw of a person which may bring positives and challenges.

Having an assessment to identify everyone would remove the stigma, language and recognise that for some thankfully it is informing them of a small part of themselves.

Perhaps moving the diagnosis to where children are profoundly impacted. As in severe impact on their learning for example, for them to be happy and flourish.

Fundamentally parents have this in their motivation. We want to make sure we did all we could to help our loved ones flourish.

I would have thought reasons would be varied:
denial
embarrassment
not seeing the problem
Not wanting a so-called ‘label’ placed on their child
Not wanting their child to be treated differently
shame

all sorts of reasons. All valid, but all to the detriment of the child.

I think there are lots of positive reasons for not pursuing diagnosis but they don’t come up in a list of negatives. I’m slightly fascinated by this almost zealot like devotion to the pursuit of diagnosis.

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.

@Barakata I think that’s the situation with my friend’s son. He had an EHCP at school, but he’s fine in other areas of life (socially, day-to-day life).

Their feeling is that academics aren’t for him, but he’s doing well in his more practical college course so there’s no need to pursue any further diagnoses.

Is SEN a catch all for all additional need or only for those relating to disability?

I tried for support and answers for several years with my first until he asked to stop. I just got on with it and didn't pursue with any of my other children when there were some similar speech and behaviour patterns. The process hadn't been worth the stress on our family.

My second child talked about possibly being autistic with her school SENDCO and we had a meeting on the topic where I was fairly neutral on it - if it helped her understand herself great, but otherwise I had no attachment to it. The school handled most of the process so it was far less stress on our family. When she was diagnosed, the people who assessed her strongly recommended her siblings be assessed.

My oldest said 'no thanks'. He doesn't seem to directly remember the many appointments, speech therapy, audio processing assessments and such, but he knows he doesn't want anything to do with going through anything for a diagnosis on his communication and related struggles at this time.

It’s a catch all term for both descriptions. Often it’s things like dyslexia, less common are the neurodevelopmental conditions, autism and the like, and then it can be other situations such as a child identified as having a hard time at home or at school, such as bereavement or domestic issues. Children can go on and off the SEN register depending on need.

My son is has autism and I would absolutely not seek a diagnosis if I knew what I know now. It did not get him any additional help and wanted a lot of energy and limited career choices at 16.

I'm generally pro diagnosis, but actually the negatives are that some countries aren't very keen on some diagnoses if you want to emigrate. There are hoops to jump through for the military and they aren't always get through able, people slap DNRs on you without your consent (ok that only happened to my son once), some things are not open to people (eh can be hard to get cahms counselling if you have an asd diagnosis), financial (for some)

Does it change anything (for some)

@michealsmum1998 I feel ambiguous about it. It wasted a LOT of time and brought very little. I think mostly a negative experience for us but it’s hard to tell and we had a lot of support without it.

tbf it’s hard/practically impossible to get CAMHS support with it without a diagnosis.

The clue is in the name. SEN stands for Special Educational Needs. SEND includes Disability.

In our area it’s rare for CAHMS for accept referal for ASD or ADHD. Even if they do all you get is a diagnosis, no support.

S&LT used to be off limits if you had a diagnosis of autism, as did entry to some language focused SS. So if you had a language disorder as many autistics do, it removed your access to therapy.

So is SEN exclusive of disability?

Lol at the idea you can just get a diagnosis, like it's easily accessible. If I put my year 7 daughter on the waiting list now she probably won't get seen until she's left secondary school. It's completely inaccessible to most.