Do parents of 'neurotypical' children really understand?

[WindmillsOfMyMind12]

My son is 4 and is awaiting an assessment for adhd. I'm wondering about autism too but it's very mild if it is there. Although we haven't had the official paediatrician diagnosis yet, other professionals have said yes, it's adhd.

As a primary school teacher, I've taught many neurodiverse children over the years but in no way did that prepare me for having my own child with very challenging behaviour. Dh and I can be so exhausted sometimes. My ds is bright, funny, loving and totally gorgeous but he goes at 100mph, he's impulsive, reckless, highly emotional and has very little concept of risk despite our efforts. We have to be one step ahead and on it all the time, in all situations.

When we're out, I often feel on edge, especially in front of other parents. I feel like they're judging us if ds's behaviour isn't as it 'should be'. Part of me wants to say, my son's got adhd and we're doing everything we can but his behaviour can be unpredictable. It doesn't stop me going to different places with him as I feel like he needs to have different experiences to learn how to adapt but I can be a nervous wreck sometimes!

Now I have a 'neurodiverse' child of my own, I feel so much more compassion and have greater awareness for similar children and their parents. But I do wonder if parents of neurotypical children make judgements? Do they get it at all? Could be that I'm just insecure in my parenting skills with tackling adhd but it can feel like other people judge. It feels like society isn't as 'inclusive' as it could be sometimes.

[WindmillsOfMyMind12]

@Doubleraspberry

Would it help to tell you that a teacher who taught my kids who has ND children herself made the most enormous difference to our lives? That we always felt our children were in a safe space, that the efforts she went to in supporting them was so above and beyond that we tried to nominate her for a prize (she refused the nomination)? And that once my children left the school she became a friend and we’re having dinner together this week? Teachers like you can change lives.

@Doubleraspberry that's really lovely and I think it can make such a difference.

[Nightynightnight]

@Pixnix

I can totally understand where @wizzywig 's perspective comes from, but then I remember that "high functioning autistics" are at higher risk of serious and enduring mental health problems and suicide as they get older so I doubt they or their parents feel particularly lucky because their kid might get some gcse's

I don't think this is the "gotcha" you thought it was. People with moderate-profound learning disabilities die on average ~20-30 years earlier than the general population

It wasn't intended as a "gotcha". It was intended to be read at face value. Someone posted that they couldn't understand why parents of children with high functioning autism were so stressed. I gave them a very, very good reason why they might possibly be stressed. Why on earth would you see that as a gotcha?

[firef1y]

@wizzywig

As a parent of kids with severe LDs I struggle to understand why those parents who have kids who are 'high functioning' are so stressed. Your kids are toilet trained, can speak in sentences, get qualifications, that's amazing

And this is part of the problem for those of us with children who (or are ourselves) considered high functioning. We simply don't look disabled enough for people to understand that every single aspect of our lives are affected by our autism. Which is why the high functioning label has been removed.
Yes we may seem less affected than others, but believe me it's swings and roundabouts. I'm very much aware of how different I am to NTs and yet how much like them I appear at first glance and that in itself adds an extra layer of anxiety to my life.

As to the op. Yes the parents of NT child along with the rest of the NT world have no idea what it's like to be the parent of a neurodiverse child or to be neurodiverse yourself and the demands on your life that the parents of NT children wouldn't experience.
My downstairs neighbour loves to complain about how "loud" my house is, there's me with ASD/ADHD plus my 12yo with the same. I have people making comments about how I don't work, fuck me, but I'm regularly up all night making sure the 12yo is safe as he wanders around in the middle of the night. We get comments when we use the disabled toilets, we get stares and tuts when he acts a lot younger tha his age, when hes making funny noises, playing in soft play areas etc

[Freshstarts22]

@wizzywig

I was hesitant about posting. Yes I am in my own bubble and yes I know everyone has problems. It's just that when you've been buying nappies for nearly 16yrs, having to deal hands on with poo, I'd love to have your life. I really would.

I’ve just seen this after replying to your first comment. I feel for you, and I can see how it’s easy to get wrapped up in your own world. I’m often envious of others too. I think it’s normal.

[DomPom47]

I don’t make any judgements and make sure my body language does not make anyone feel uncomfortable about their child e.g staring or passing comments. Try not to let what others do or say upset you or stop you doing anything you would like/plan.

[Doubleraspberry]

@Justrealised

I think as the comments on this post show no one really understands the situations are others are in and that includes people who have ND children with varying levels of need.

I think with ND one of the issues is that those who are verbal / communicative are able to communicate their understanding and control the narrative with the views of the parents/ carers of those severely impacted wrote off as they are not actually autistic etc.

Co morbid mental health issues must be dreadful for a parent to deal with but they can be dealt with, supported, helped etc.

The professional community are now using profound autism as a term to distinguish those who are servery impacted and to try to ensure they are not getting lost in what ND is now perceived as being.

I have yet to meet a parent of a "high functioning" child that would if they could swap their child's needs so that they were "low functioning" (possibly non verbal, low communication, requires full time support, hygiene needs, help with feeding, getting dressed....) instead, every parent of a child that is "low functioning" would swap in a heart beat. No one would actively chose that for their child even when it means dealing with mental health issues.

Just for ref:-

www.autismparentingmagazine.com/profound-autism-term/

www.spectrumnews.org/news/first-of-its-kind-commission-defines-profound-autism-issues-recommendations/

theautismcafe.com/profound-autism-levels-separate-diagnosis/

www.ncsautism.org/blog//1000-shades-of-profound-autism

Also see the Lancet report which made the recommendations.

Much as I relate to your point about autism being framed by a narrative right now, I think simply saying mental health support is available is a bit like saying that respite care services are freely available so why is any parent stressed when they can have regular breaks. A friend of mine, and this is an example but not remotely unusual, couldn’t get a CAHMS appointment for her child because they were not suicidal ‘enough’. Their child hadn’t left the house in several months, had attacked them repeatedly with knives over a period of time, and then, finally, tried to slit their wrists. It’s not just a question of being depressed.

[RoachTheHorse]

I think inhale a good idea. But my mum worked in school supporting kids with additional needs and we sometimes had kids at ours for respite care who had a variety of needs. It's not the same as having a child of my own but I certainly don't judge.

[AloysiusBear]

Of course we don't understand!

I don't even pretend to.

All i can do is a) offer to help, if there's anything that would help you b) make sure my DC know that people are all different and special and that's fab.

[candycaneframe]

@wizzywig was merely showing that even within the community of parents with experience you can never fully 'get it'

My brother is ND, had an Asperger's diagnosis when that was a thing, is incredibly high functioning, but due to that, understands he is different. He wants friends, he wants to connect to people, but can't, this has led to severe depression, attempts on his life and he has given up the will to live, he doesn't eat right, he doesn't wash for weeks on end, his hair is thinning and he is morbidly obese. I'm sure he will either succeed in killing himself at some point, if not will most likely die before the age of 40 (he is 27 currently) due to poor health.

Some might see my mum and think she is lucky, he lives independently, has a handful of GCSEs which he got a few years ago after leaving school early (school refuser) can wipe his own bum. But that's only because people can't really ever understand something they don't experience, I don't know how my mum would have chosen if given the choice between my brother the way he is now, or 'worse' but somewhat unaware of his own needs.

We can't choose the children we have, we can't ever understand fully other peoples situations, but we can try to have empathy. And I'm sorry that some in here are struggle to have empathy with wizzy for making her comment.

[Abouttimemum]

I have an autistic nephew and this has educated me no end, and I have educated myself. Despite this, I absolutely don’t understand what my sibling goes through day in, day out. I try to help wherever I can, and also listen and support.

I definitely don’t judge any children or any parenting when I’m out and about. Especially when I’m usually wrestling with my own DS3!

[Justrealised]

Hi, I didn't mean it to read as "simply being depressed" and I know support especially nhs/ social care is stretched at best. What I was trying to say is that there is a way of helping, improving, changing their mental health with the right support. For those with severe autism that's not an option. There isn't a therapy that can improve their autism.

[Divebar2021]

Well do you know what it’s like to lose a child to knife crime? Do you know what it’s like to live with terminal illness. Do you know what it’s like to be made bankrupt? Probably not. You could insert any difficulty into your OP and the answer would be no for a lot of people. And quite frankly if a teacher didn’t understand the chances of the rest of the population getting it are fairly slim.

[pandarific]

I am on the wait list for diagnosis for adhd. My son probably has it. I am very, very embarrassed whenever he behaves badly when we’re out because I feel like everyone is judging that I’m this permissive parent. But I’m not!! I parent my arse off! It’s exhausting! Ugh I don’t know.

[Mummummummyyyy]

@WhenISnappedAndFarted

I don't think any of us can understand something unless we go through it ourselves, and even then every feels and reacts to things differently. That goes with everything.

Totally agree.

[Notplayingball]

Oh I hear you OP. One going to be assessed soon for ASD, another displaying symptoms of ADHD.

Everything you wrote describes how I feel.

[soupmaker]

I have very close friends with kids who are ND. In two cases they have kids who will never be able to live independently. I absolutely do not understand exactly what it is like to have ND kids. I can empathise when my friends talk about how their kids, themselves and their families and I try to understand and learn from them but I've never experienced anything like what they do.

[itsgettingweird]

@wizzywig

As a parent of kids with severe LDs I struggle to understand why those parents who have kids who are 'high functioning' are so stressed. Your kids are toilet trained, can speak in sentences, get qualifications, that's amazing

My kid with high functioning autism tried to hand himself at 11 due to the anxiety he was suffering and the bullying he was a victim of.

But hey - he can walk and use a loo so 🤷‍♀️

Let's not play disability top trumps eh?

[HappyBinosaur]

@PeekAtYou my lovely dc2 (15) has never really had friends and it breaks my heart. He’s such a kind boy but very very sensitive and quite loud. His adhd doesn’t affect his behaviour in that never been disruptive or been in trouble at school, but he has no filter and talks a lot and so I guess he annoys people.
He gets on really well with adults and I’ve been told so many times how polite and likeable he is but he doesn’t have any proper friends his age (I’ve just started crying typing this.)
He gets on really well with his brothers and has a couple of friends from church in the year below (not at his school) and I’m really hoping he’ll make more friends in the sixth form.

[ThisIsNotThePostYourLookingFor]

I don’t think they do sadly as its a whole different world that unless you are in it you would never know it really was.

The worst thing for me is how children with ASN are normally left out of things such as parties etc. Even kids just going to the local shops for the day with their friends is something my DC will never be able to do and it breaks my heart.

[Mumofsend]

@wizzywig

As a parent of kids with severe LDs I struggle to understand why those parents who have kids who are 'high functioning' are so stressed. Your kids are toilet trained, can speak in sentences, get qualifications, that's amazing

Well that's incredibly ignorant

[CaptainBarbosa]

I have a ADHD son. And I think others can tolerate and sympathise, but they don't understand. But that's ok with me.

It really is one of those things that people have to walk a mile in your shoes to fully understand.

[rghltifndn]

@WindmillsOfMyMind12

@babysharksb1tch I totally get this too. I think going through this experience will really help me as a teacher which is strange but I just see things so differently now. Particularly the way I relate to parents too.

Did you feel like teaching children with SEN didn't really prepare you for what it's like? As a teacher, I feel like it's tough but I can manage SEN children somehow but as a parent I'm totally drained and out of my depth.

I am also a teacher and my eldest DC is autistic and I remember crying to the autism outeach team when I spoke to them about my DC (ironically it was the same team who supported the pupil in my class) because I felt mentally and physically drained by it and guilty that I could manage at school but not at home.

I was gently told that it’s a lot harder to deal with your own child as their behaviour is more extreme (for want of a better word) with you as we’re their safe space.

Comparing our own kids ‘worst’ behaviour with the ‘diluted version’ of the kids in our class isn’t helpful.

Also DC would be classed as ‘high functioning’ and I hate this term as the expectation is that they will behave as a NT child will when in all honesty, it is highly unlikely that they will ever live independently.

Different challenges and experiences do not always mean easier.

[sandgrown]

Not being inflammatory but I thought ADHD could not be diagnosed until age 6 . I suppose this demonstrates my lack of understanding.

[itsgettingweird]

No they don't get it.

But I think that's with any medical or disability need.

They don't understand the routines required with diabetes and that no - you can't visit the ice cream sundae place at X time and eat all the sugar in the world!

They don't understand my ds disability. I mean - he can walk. Having a upper motor neurone disease means nothing to them and they don't see the splinting and physio and medicine he takes to maintain walking.

They don't see how much goes on behind the scenes to support his autism either and I think parents who don't have children with adhd don't get it's not just being hyperactive.

Moving away from children I also don't think people realise the long term impact mentally and physically of things such as cancer treatment.

But I wouldn't expect someone to understand. Even empathising is hard when you've not experienced it.

But I do expect people not to judge, make stupid comments and to believe you when you say something.

[KvotheTheBloodless]

I try to understand - I've learnt a huge amount from Mumsnet - but have never experienced having a neurodivergent child.

MN has made me much more aware of the struggles some parents have. I don't think I'll ever 'get' it though, unless I have a ND child of my own.