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 this is the problem @Tittat50 , it’s naive to think that a diagnosis magically prevents judgement on your parenting!

Honestly, respectfully no I don't agree. I think if you are ND then having knowledge and professional knowledge will help. To my mind the only way to have that is diagnosis. Information is power. Remember this will usually and hopefully when a child is young and parents want to be as clued in as possible.

This isn't about adults. The fact is parents will want to know how do I get everything my child needs, and how do I meet their needs. Having a diagnosis provides them sometimes with a smaller pool of research and advice to trawl through.

I equate it to my children who are NT being colour blind. They know that fact about themselves early so it is informing their choices e.g. can't be a pilot, need access considerations in assessments .there is a heck of a lot colour coding in exams these days!

If a person is ND and doesn't have confirmation by diagnosis they may miss out on information on how to support or possibly some information about expectations.

That won't be true for everyone but people seek them when there is an issue. To ensure that issue is resolved mitigated appropriately again takes information and the way we currently get that information is diagnosis.

It doesn't unfortunately I agree 🤦. I know we are still looked at to 'fix' it. But the confidence it gives you, the lack of self doubt, the strength to push back on the gaslighting ( which is endemic for want of a better word), really is something. And when you put it back, in writing, I know they then acknowledge this is more. Yet the fight really never does end sadly.

I need to get clear on the legalities here regards discipline as my child for example receives detentions continually. They are not feckless, they are incredibly hyperactive and fidget. Academically average to above. I am keen to understand if having a diagnosis changes things regards suspension for example.

The other thing to consider is that if they somehow manage to stagger through the school system, they can decide for themselves, say over the age of 16 to go forward for diagnosis.

One of mine has, one of mine has decided against it even though I think it would be helpful, and they had severe consequences of dropping out of school. They both see themselves as having agency in this situation.

I do feel sad though that I didn't pick up one of their's ND earlier in life, and so for me, I think it might have been better had they been diagnosed around the transition to secondary and the teen years, where I spent a lot of time yelling and misunderstanding what was going on.

They may not see it like you when they grow up.

Agree @Ohthatsabitshit. Autism presentations are acknowledged as unique ('if you've met one person with autism...') yet according to this thread if autism is suspected by anyone, then parents must seek a diagnosis in every case. Isn't this a bit prescriptive?

Are you actually comparing treating people as individuals in everyday life to denying a child a potentially life-improving diagnostic assessment?

@FreshLaundry you raise a really good point. Alot will depend on how life is for each individual and their family.

I think what is important is for those with young ones just starting the journey, things can change dramatically as they grow and you might deal with things you hadn't predicted. Wait lists are long and the process is painful.

Potentially life improving but also potentially life limiting. I think that’s the difficulty: it isn’t a benign action that can only be good or at worst, neutral. It is possible for it to have negative repercussions as well.

JFC the diagnosis is not life-limiting unless you regard concealing an occupationally-relevant disability from a future employer to be a good thing. Hint: it isn't.

It wasn’t life limiting for you.

I know we can all be guilty of assuming that how it is for you is how it is for everyone but can we at least try to imagine not everyone feels the same?

Explain to me how having more knowledge about yourself can ever be limiting? "The truth will set you free". It may piss you off first, but it will set you free.

@selffellatingouroborosofhate in a number of ways, potentially.

I think the first problem is that it assumed a diagnosis, a label, automatically gives someone increased knowledge about themselves and I’m not sure at all this is true.

As I indicated earlier in the thread, I wonder about myself. I certainly have some traits that would be considered in line with autism but if I do have it I mask bloody well because what choice do I have? Some of the things I massively struggle with are just part of life; I can’t avoid them and there aren’t adjustments in the way that people like to talk about for everything.

Have I ever felt like a failure, a freak, like I don’t fit in anywhere - yes. Would being told the reason for this help? For me personally no, it wouldn’t, in fact it would make me feel further isolated and different and odd. I don’t think I am any of those things now and I have worked very hard to fit in. There are certain things I’ve just got to shut up about, like the fact that my colleague crackling her water bottle makes me want to commit murder and my husband putting on Christmas songs at the same time the children are watching TV makes me want to run out of the house screaming!

I think that for me (I’ve put that in italics to stress I mean just me, no one else) someone telling me I was autistic or had ADHD or both would make me feel isolated, odd, different, it would have made me lose confidence and not seek others - and I do need to as that’s how you gain those masking skills. I accept that’s not the case for everybody.

There are certain things I’ve just got to shut up about, like the fact that my colleague crackling her water bottle makes me want to commit murder and my husband putting on Christmas songs at the same time the children are watching TV makes me want to run out of the house screaming!

You don't have to "just shut up" about those things, you can leave the room until the noise stops. You can put on noise-cancelling headphones.

I mask bloody well because what choice do I have?

I have had meltdowns and twice have actually fainted, passed out, because I couldn't mask any more. A person's capacity to mask isn't infinite. Sometimes, failing to mask is inevitable. This "what choice do I have?" argument stokes the narrative that we could all cope with everything if we just tried harder because "needs must".

Some of the things I massively struggle with are just part of life

I recently had a job interview in which I asked for the interview questions in advance and for the panel to book a room with dimmable lights if one was available. Some of the "just part of life" things can be adjusted. I found this out after diagnosis when I started looking at what other autistic people do to help themselves. When you can confidently request an adjustment, knowing that you can email your diagnostic report over to prove the need, it really does make a huge difference.

it would have made me lose confidence and not seek others

It gives me confidence. With a few words, "I was diagnosed as autistic in YEAR", I can convey to people why I come across as a bit odd and filter out jerks. I can spend less mental effort on trying to "act normal" and more on actually trying to engage sincerely with the other person. It acts as a safety net for minor social errors, like thinking someone has finished speaking when they haven't and butting in. I used to stay silent in groups for fear of butting in and being seen as rude, and then of course people still thought I was rude because they perceived me as standoffish and antisocial. Having a diagnosis has literally given me a voice in those situations.

You're an adult saying "well, I cope well enough", and you have the agency as an adult to make that decision. This isn't the same as a parent deciding for a child "well, she copes well enough". Why would any parent want to deny their child that safety net of future support?

@selffellatingouroborosofhate i can’t just leave the room or put on headphones when someone cracks a water bottle. Because I am at work. I’m not wishing to sound like an arse here but have a bit of imagination: not all jobs lend themselves to this. Can you imagine a GP with noise cancelling headphones on, a pilot walking out of the room when her co pilot cracks the water bottle, or a lawyer out of court?

Re your second paragraph - that’s why I used the pronoun I, not we or us. I’m purposefully talking about myself, not you. None of this is a personal slight on you but you do seem to want to take it that way.

I think all this lovely support you think happens is a bit like Santa Claus or the tooth fairy - it isn’t realistic, for the most part. It only kicks in if needs are severe enough to warrant it: if not, diagnosis or otherwise it is unlikely any support will be forthcoming.

All of this. Very well written. I can't speak for others but the shift (post diagnosis) from "Ah fuck, why do I get irritated at the smallest thing? Why can't I concentrate? Why do I work better on Mondays - when bottle cruncher WFH - than Tuesdays, I must be a lazy fool" to "I need quiet to work / I really don't cope well with certain noises, and today I am going to try headphones / book a meeting room / take a short walk in between tasks / plan to do outdoor things with my kids this afternoon rather than have one watching Hey Duggee while the other hums Taylor songs" - I have genuinely gotten huge chunks of my mental capacity back, basically just from not constantly beating myself up about my perceived inadequacies.

I think this is how I view it - from my RL experiences - more nuanced than some want to admit.

I would have loved to manage to get my kids diagnosed in school years but I fought hard and it still didn't happen.

I think it sort of very mumsnet thread- I managed it therefore everyone can - or my experience was this so everyone else's experience will be even if they say differently.

At 4 there is time to sit on waiting lists especially the primary can accommodate behaviors - but I would be looking at local school quite hard to find a supportive one if possible - and if teachers or other start to hint or suggest - even if they backtrack - in future years see the SENCO and start pushing to investigate to get on lists for assessment or save if possible for private routes as if they need extra support in school or more understanding it can make a massive difference to how they experience the school system and how much they get out if it.

Your first paragraph is why I left City work, law, to go self-employed. In another universe I'd do nights at Tesco, or be a dog walker. Lots of jobs tend to self-select for certain qualities, that's not unusual. And the fact that pilots can't leave the room doesn't mean that the PP can't ask for reasonable adjustments in her job, where she presumably knows enough about the setup to know whether headphones etc are at least worth a conversation.

I think all this lovely support you think happens is a bit like Santa Claus or the tooth fairy - it isn’t realistic. In some lines of work you might expect 0% support; in others 100%. In most I would suggest it is at least worth some time exploring what would be possible. And for me it was very much an active process of putting things in place for myself, there's no HR department at my kitchen table.

If you were to look at my job from the outside you'd assume nothing had changed post-diagnosis. In practice:
I make my days very routine-based
I write myself a to-do list in advance so I can be more productive
I don't schedule meetings at certain times
I say no to certain things that I would've agreed to, then regretted
And so on.

A huge amount of it is just understanding yourself and making decisions/adjustments that suit you, within the parameters you have. And yes, potentially giving up your career as a pilot or surgeon if those jobs are at odds with your abilities.

Sure, but for many of us we can’t just leave and do something else. I feel like the thread is drifting off somewhat but this is what it comes down to, isn’t it? You either can cope, with difficulty sometimes, but you can, or you really, really can’t.

If I really couldn’t cope with crackling water bottles I would have to do something else but as it is I suppose I can because I am still here! But a diagnosis or not wouldn’t be helpful to me in that.

Thinking about myself, it wasn't "just leave" (I had rent to pay, no family support etc) - but it was, "Actually, it is very difficult to find an environment that suits me in this industry" and "Everyone says I'm smart but I can't seem to stick to a job" followed by various attempts at other careers during evenings and weekends to shift myself out of law and into self-employment. I wish I hadn't had to go through that, but that's how it often goes with adult ND diagnosis.

You're right, it is tangential to the OP but I think it's important. It's a form of advocacy and can be the difference between happiness and misery.

(And of course, if you wouldn't find it helpful OP - so be it. You know yourself better than any of us.)

Oh but it absolutely does. How can you say it doesn't when you have no experience of it?! As I said, school has taken me much more seriously since the diagnosis. Lots of skepticism, judgement and "mum is anxious" type attitudes before.

Of course some people still judge our parenting but so what. Getting taken seriously at school is the main thing. I don't care what people think of us, I care about DS getting the support he needs.

Parents must seek an assessment, not necessarily a diagnosis. Usually there are screening tests so if autism unlikely then they would be unlikely to progress to full assessment. And of course some children are assessed and not diagnosed.

I think if you suspect autism you should confirm it or rule it out. That's not "prescriptive", it's being curious and finding out what you can about your child and how their brain works, so you can parent them as best you can.

Like what?!

I think there’s been lots of research about if diagnosis helps or hinders and I don’t think the conclusions were definitive. Sometimes knowing you have a condition can be negative. We know many parents recognise this because they choose not to diagnose early, or at all, or sometimes they hide the diagnosis from their children.

A diagnosis can limit you. Most directly that would be things like people with learning disabilities being refused treatment (eg during the pandemic) or many countries refuse immigrants who are autistic. Obviously there may be many positives but we shouldn’t hide the realities.

"many countries refuse immigrants who are autistic"
Why on earth would you want to live in a country like that anyway?!