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.

I was a carer for a child with PMLD, and I am so keenly aware that my worst struggles are a walk in the park. My DD throws a paddy occasionally but only ever because she is a bit tired or hungry. Every time other mums are crying because thwir child is growing up and moving on, I remember the boy who was 15 and the same mental age as a baby, and I am SO grateful they are NT.

I haven’t been on Mumsnet for long and I’m stunned how many families are living with one or more children with ASD, I honestly had no idea how widespread and wide ranging the spectrum is. I don’t remember it being discussed when my children were young (now at Uni). There was one boy (a teacher’s son) in their school who had impulse control issues and would shout out and run when not supposed to but the children were really protective of him and knew he couldn’t help it, but that was one boy out of 300. Were there many other families struggling that I wasn’t aware of?

My daughter has a mild form of cerebral palsy which we grieved over and I felt for her when she couldn’t compete and lost friends over not being as physically able. But as she grew up it mattered less and made her more determined to meet her goals. I can’t imagine how difficult it must be to have to fight to get help and acceptance while other parents, teachers and schools are making it harder still. I’m so sorry.

I’m glad there is more understanding and knowledge out there now and I hope more acceptance to follow. I’ll try and be more so in the future.

No they do not understand or care to understand. They bleat in about inclusivity but in practice judge children and exclude children as they are perceived as ‘ not normal’

people are arseholes.

But that's perfect for me as a parent of a disabled child.

Just try and understand. That's it.

We don't want well intentioned useless advice or to hear they'll grow out of it (when they won't)

You sound like you've got it just right - even down to the understanding it can happen to any of us

@wizzywig Because it’s entirely different stress to what you’re feeling. My child has ADHD and high-functioning autism. Yes, he can read and speak and use the toilet. But you know what comes with that? A whole set of expectations that are exhausting for him. Your children may never live independently, and that is REALLY hard and I genuinely feel for you, and for your children. But mine probably will end up living independently without being fully aware of society, and that is a totally different kind of hard. He could get himself into all kinds of situations he shouldn’t be in, just because he doesn’t fully understand what’s going on, and I can’t protect him from that forever. Everyone will expect him to understand because he ‘looks’ OK, which could leave him in dangerous situations. My job is to prepare him
as much as I can for every eventuality so that maybe he can avoid it, and that’s really stressful when you can see that it’s just not going in.
OP, yes I do think people judge. I’m sorry to say that I used to. My family try their best but they don’t really get how difficult it is. For what it’s worth, medication has made a world of difference to my son both in and out of school, so don’t give up hope if that’s something you’d be willing to try.

To answer briefly, no people do not understand things they have not experienced for themselves, but that goes for anything. I’ve suffered terribly with my mental health (psychosis etc) over the years and the amount of judgment I experienced was truly awful. But I can honestly say not everyone is judging you. If there’s a loud commotion (tantrum, whatever) by your child, people react to the situation in surprise, a bit like you probably do if there’s a loud bang. You are just surprised by it. That’s normal. I don’t judge, I sympathise before getting on with my own worries.

That's not really fair. My DD is "high functioning" autistic but she struggles every day. She has extreme phobias that limit what she can do and daily sensory meltdowns. She went on a school trip last week and was the only one in tears because she was frightened of the activity.

The thing is, because she's intelligent, she knows full well her peers don't struggle like she does and that's not easy for a child. Yes she probably will get lots of qualifications but it's likely she will struggle with her mental health throughout life. If you want to make it a competition then your kids might be happier.

Ds is autistic and has a long list of other conditions. My experiences with him have made me a lot more empathetic of the struggles of others. But even then I am the expert in him and as much as I can relate to struggles others have it doesn’t make me an expert (if that makes sense) and I have learnt to always avoid trying to think “but they can do that” or other comparisons.

i get very frustrated when people try to make it a race to the bottom (“well your lucky he can go to the toilet” type comments) or when people take a stereotypical view or try to compare to ‘celebrities’ who are neurodiverse and can’t understand that isn’t accessible for many.

Not to mention the appalling lack of support, assistance, respite etc. We are very badly served because we are willing parents who care for and care about our children. The bloody government doesn't give a toss and has no desire to cough up and properly fund anything to take a bit of stress from carers.

I don’t think anyone judges parents who have children diagnosed ADHD/autism. But if you don’t know, ie you’re a stranger witnessing poor behaviour in a social setting, people are judging you on having a badly behaved child, as they’re obviously oblivious to the fact that the child has adhd. Once aware, I think the majority of people are totally sympathetic to the situation.

No I don't think they do - how can they!
Unfortunately I'm sure they think they are being super inclusive and understanding, I hope it comes from a good place.
Until you have your own child with disabilities, you can never really know.

This is very true.
I try hard and consciously NOT to judge.
I try hard to be ‘inclusive’ when the need arises.
I try to teach my children to be inclusive and empathetic to all their classmates.
I try to be supportive of parents who are struggling if I can at all.
I probably fail at these things some of the time.
Of course I can’t truly understand something that hasn’t ever happened to me. Just like I can’t understand what it’s like to lose a child or survive a car crash.

But they could be happy living in supported accommodation or with carers. A ‘high functioning’ autistic adult may live independently but be severely depressed, isolated and suffering from anxiety.

It's 5 and that's half the challenge if you have a younger child displaying all the signs. You can't access support.

I don't think they can understand, even if they try, because they're not living it every minute of every day. Hell, I don't understand what it's like for other parents, because my child is not the same as your children and I only know our own lives inside out.

To be strictly accurate, I can't say I'd understand what my DS's life would be like as a parent, because his parenting experience wouldn't be the same as mine. And... I do get it! Because I am autistic, growing up in the world of the 70s and 80s when autism was only known in children who were profoundly and obviously disabled and never in mainstream schools. There were loads of ND children in my schools, all struggling quietly with their difficulties and given no support at all. Every day was an ordeal trying to keep yourself together, trying to blend in, trying not to appear weird.

All we can do is be tolerant and try to be more sympathetic. Of course you can't genuinely be understanding of an experience outside your realm, but you can make allowances and assume people are just trying to get by the best they can.

I don’t think you can possibly understand if you haven’t been through it.

I did respite care for kids with severe LDs when I was younger, but I still don’t think I know what it would be like to do it full time, other than I don’t think I could do it full time.

This.

My son is now a young adult (19).
He has an ADHD and ASD diagnosis.
He has an older NT brother.

He sounds just like your son at a young age.

I did not have a flipping clue how challenging it would be :(

I would recommend trying to find a fellow mom in real life with a similar child. My pal who fills this role has been such a support. Just to say « I know you get this but young Johnny (fake name) did this …. » and to have someone understand.

We met as our boys became friends. He only has 2 and they are both neurodivergent.

DS in primary was an enormous challenge. Endless complaints and emails.

It gets easier it truly does. Today he is a entrepreneurial, quirky, bright, funny, energetic young man. One day the traits that were so challenging in primary school are making him so successful in adult life.

I think that’s the thing people don’t get unless they have lived it. Looking after DS is a pleasure even with all the issues but the hours spent fighting for everything and chasing up people not doing what needed doing that is exhausting. Your not just a parent. Your a PA/nurse/taxi driver/carer/secretary and so on and so on.

Hmmm my 'gifted' autistic child tried to throw himself from a 3rd floor window due to the anxiety of the expectations of him to 'behave' and 'learn to be like everyone else'. He's also tried to drown himself and head butt walls. He should be able to live independently but he will be easy to manipulate, vulnerable, totally clueless about life tasks and may well end up back home for years feeling like a failure and I may outlive him.

I don't think it's as black and white as you see it.

There's understanding and understanding. I'm not sure anyone really, truly understands what it is like in other people's shoes, but we can have some insight.
One of my children has a good friend with ASD. They have been friends since Reception and are now in their late teens. We know the young person well and are very fond of them. They've been on many family days out with us over the years and I would say I have a pretty good understanding of their needs, in a practical sense. But do I understand what it feels like to be their parent? No. Of course not. I don't think it is even possible to really understand what it is like to never be "off duty", to have those worries about their longer term future and so on. No, I don't understand. But I do care.
And so do many other people OP - I hope you find the support you need amongst your family and friends, even if they can never fully understand your position.

I have no idea what it is like to parent a ND child. I don't judge and I try my best as a teacher, but I don't always get it right because I have never been in that situation to learn whatever it is that I have got wrong. I have ADHD myself, but that doesn't mean I understand all ADHD students and I hate that people shoebox people with ADHD as the same; it'sthe reason so many girls find it difficult to get diagnosed. I found lessons hard to pay attention in, but I was never disruptive and I would hyperfocus on most school work, and the lessons I really didn't hyperfocus on, I could drop for GCSE. So my experience and those of my own parents in parenting a ND child would be wildly different to others on here.

Ultimately, no one has a perfect life and there will be experiences that people go through and it's impossible to truly understand that difficulty and it's not a reasonable suggestion for everyone to get it. Listen and learn, yes, but until you've walked a mile in someone's shoes, you won't fully grasp the implications.

Sadly this is not true many people believe it IS bad behaviour and that autism/adhd is an excuse

I think people do try, but as many have said the reality of living with a ND child can never be fully understood by those who haven’t been through it.

There are also a LOT of people and huge amounts of teachers who don’t believe ADHD exists, I wish they lived a day in my shoes just to see it’s not just bad parenting.

We’re all neurodivergent in my house and all at differing levels, oddly, I’ve found my ADHD & learning difficulties daughter a lot more difficult than my daughter with LearningDisability,ASD&ADHD 🤷🏻‍♀️

This type of thinking is EXACTLY why functioning labels and levels are so harmful.

My teen is autistic. My 7 yr old is autistic. My husband is autistic. Not one of them has the same needs, nor do they all share the exact same difficulties. They don't have different levels or severities of autism, they are all autistic.

Giving my teen a "level" or saying they were high functioning would have stripped them of all support during school and now at college. The support they need to have access to smaller groups for exams where they're allowed supervised breaks, or where they can just get up and leave for a few minutes if the classroom becomes too loud and stressful. Just 2 examples, but you catch my drift.

To people outside of the autistic community, or those who just havent been educated in these things, high functioning means "not autistic enough to need support" and low is what they assume to be the kids they see having major meltdowns all the time. Or the kids who don't have audible words. It's all wrong.

People are Autistic or they aren't. There is no in between and functional levels are harmful.