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.

No they don’t understand but I don’t think they are claiming to? My own family don’t understand how hard it is, the first comment is rude as well and proves people don’t understand, my daughter can speak and doesn’t wear nappies but that doesn’t mean she isn’t hard work, she has no danger awareness, runs off, runs into roads, she can speak but can’t have a meaningful conversation (mainly echolalia) , she can’t be left alone at all needs constant supervision, is physically aggressive towards people, doesn’t sleep, needs help with personal care, pretty rude to say you don’t know why parents are stressed if there child is “high functioning” there’s been times I haven’t even be able to leave the house because she’s too challenging and I can’t manage her behaviour on my own (single parent)so no people don’t understand.

Yep, this. My DD is high functioning and I keep hearing - from school, from family, from other parents - that she "seems fine."

They have no idea how hard she works at seeming "fine" and the cost that takes for her and us.

I am also a teacher with a child who has ADHD. I was a parent before I became a teacher. The lack of understanding and empathy from her primary one teacher made me want to become a teacher myself and do these kids justice.

I recall on my first placement, I told a young teacher on the staff that I have a child with ADHD. She completely dismissed me, said it is not the same as having experience in a school with these 'type of children.' I advised her that her few years experience in a school working with the odd child with ADHD in no way made her an expert on what life is actually like for these children and how it affects them at home, family life, attending hobbies and groups, sleeping, having a variety of experiences - the list goes on. I feel I have a more well rounded view of the condition and not just from an educational viewpoint.

People who have NT children don't really get what a strain it is, in my experience. They don't understand how all consuming it is.

For what it's worth, my daughter was very high tariff when she started school at 4. She was diagnosed at 6. She was late to read and write etc, parties were horrendous!! She's now 17, very bright, she has achieved lots so far! People always comment on how polite she is. She's now at university and also has a part time job. She has her challenges but she is amazing.

You will get there 😊

No they don't understand. And they often don't 'get' that they don't understand, iyswim.

So for example I and most people can comprehend that having, say, a blind child would be incredibly challenging, despite never having gone through it. But with adhd and similar, because the traits are 'normal but plus', that's the difficulty. So you get lots of helpful people saying things like "oh yes I totally get it, my DC forgot something last week", as if that comes close to the lived experience of people with adhd

That sounds very difficult and it’s not meant to be a zero sum game. Many parents have struggles and I imagine you face your share of people telling you rubbish like ‘just relax, how bad can it be? Have you tried antihistamine?’.

I think people just need to express their feelings sometimes though. I don’t think I have it worse than parents with other challenges but there are things that parents with ND often have in common, and things that parents with children with all sorts of disabilities and medical conditions have in common.

I'm sorry, but this is so unfair. It's not a game of who has a harder life. Having a child with ADHD, high functioning or not is still extremely difficult. Your comment is uncalled for.

Also I had no idea about autism till I had an autistic child so you can’t really be surprised people don’t understand.

Just got a new dentist, and they have a ND child too. They way they treat my child is beautiful, anticipating all things they might find stressful and talking them through it. If only everyone had this understanding my child’s life would be so much easier.

I agree with this

IME most people are able to empathise but they don't entirely understand. The truly empathetic people will try to increase their understanding though, they'll ask pertinent questions such as "what would xxx like to eat?" if they're inviting DC around for tea or DC teacher once asked "are there any trigger points or stress signs I need to look out for?" when DC was new to her classroom.

I've also found that a lot of people who will say that they're all for inclusion will suddenly run all out of inclusiveness once they (mistakenly) think it's inconvenicing/disadvantaging them or their DC. I've had parents complain about DC having reasonable adjustments, about them having a 1:1 TA, about them getting targeted interventions, extra breaks, etc because <foot stamp> "it's not fair...". Parents like this have not only complained amongst themselves and to my face, they've also complained to the school. I knew it was time to take DC out of a particular school when they removed DC's reasonable adjustments "because the other parents are upset that their DC aren't allowed to do that". These people are usually the same people who post social media memes about how "special needs kids just want to be included" and "#bekind".

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.

A friend of mine has a child with learning difficulties - pretty bad ones. I have my own children and babysat for my friend and the 2 hours was 100 x harder than having all of mine together. That was a tiny snippet and I don’t know how she does it. I will ever be able to truly understand the extent of how difficult every moment is for her but my god it’s hard. She is still in quite a lot of denial about her son so I hope soon when there is an official diagnosis she will be able to access support/take some pressure off herself.

I don't think they do/can understand, no. But then I think often that parents of children that are ND/disabled/have SEN can be just as susceptible to not understanding and judging others' circumstances.

I have a son with profound learning and physical disabilities, epilepsy, non-verbal. He needs 24/7 care for everything.

Given this, I thought I was open minded and understood what other parents might be experiencing. But I did also think like @wizzywig and didn't understand 'all the fuss' made by parents of seemingly functioning autistic children.

Well. Life taught me a bloody harsh lesson. Turns out my 'neurotypical' daughter is autistic. And for the precise reason that she is 'intellectually high functioning', and went under the radar for so long, by age 11 she was suicidal.

Now, she struggles to leave the house, has sensory overload and anxiety that is so bad she has non-epileptic seizures that can go on for an hour or more, and daily life is a battle of her not really wanting to be alive. No school will or can take her, even if she felt she could face it. There is no help. Likely she will be medicated and dependent for life.

But sure, when you see her scaling a climbing wall or getting 98% on a GCSE physics assignment aged 13, you might think 'wow, she's autistic, really?'.

Nobody can tell the struggles of another by just looking at the surface. Not even us who are parents of ND/disabled children.

I don’t think parents with children with different challenges have anything but compassion for you, and I certainly knew where your comment came from. Breaking point comes from a lot of angles, many of them slightly less fecal, but often traumatic and exhausting. I think you’d find a lot in common with the parents posting on here even though it won’t look like it on the surface.

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.

I do try and understand.
But I do get tired that the only disabilities anyone seems to be aware of in children is neurodiversity.
Both of my children have a challenging physical disability that is not always obvious. There really is little thought and it is often discounted until an adult realises with a surprise they really cant do what I said they couldn't do.

For me when DD was that age it was having to be in high alert at all times when we were out of the house. Other parents could socialize and trust that their children were happily playing or could walk down the street without constantly worrying about every possible thing and that the child bolt into traffic at any moment. Yes, I might have a child who may decide to earn a phd some day, but that doesn’t mean parenting her wasn’t difficult.

I can’t possibly understand the day to day lived experience of someone who has a child with profound needs. I can try to sympathize. I can argue for better support and better funding. I imagine the exhaustion and the fear, but I don’t really know.

I don’t think people even try to sympathize about parenting children with less obvious challenges. People can’t see the challenge so they don’t even realize it exists.

DS went several years without being invited to a single party other than by one friend: she’s a SENCO in a PRU. Her own kids are NT but she included mine at every party they had. She encouraged play dates with them, she planned parties she knew he could cope with, and she drew up visual timetables of them in advance and met him at the start of the party and stayed with him. She’s amazing. Her kids are genuine friends of his.

We might not be in the same boat but we are in the same storm. I know it's a bit of a twee saying but it's apt.

I can't say anything that will make you feel better. We both know support services are next to none existent and what support does exist usually is either heavily restricted or not fit for purpose (or both). All I will say is that I understand the urge to lash out sometimes because it is exhausting and its difficult and its just plain fucking unfair a lot of the time.

I totally agree with pp that getting into a mind set of we have it worse is not helpful.

I have a great set of mum friends I have met through my sons SEN school. The children all have very different challenges and generally we all support each other.

Sorry but I think anyone who knows their child will never live independently does have it worse.

Trust me, as the parent of a 'high functioning' son with Autism, if you lived my life, you wouldn't want it.
I've no doubt your life is 'hard'. But mine is hard in a different way.
Same for my son.

My “high functioning” ASD DS’s bowel doesn’t work properly. He soils himself most days. He’s much better than when he was young when he soiled himself 4x a day. Hes 16, doing Alevels and is acutely aware of his issues which means a fine balancing act with his mental health.

All parents of autistic children have a lot of challenges to navigate and overcome trying to make life a little easier for their DC.

Please don't turn it into a competition of who has it worse. It gets so boring after a while. You have no idea what difficulties those of us (I had no choice to move out due to my disabilities, doesn't mean I couldn't do it without a lot of help from my parents) who do live alone actually have.

Is this a serious comment or are you just trying to show that nobody can truly understand the circumstances of another unless they’ve lived them? If it’s serious then it’s a really ignorant comment from someone who has a child with LD’s. I can see where your coming from, and I do often count myself lucky that my child can do those things but that doesn’t mean that it isn’t extremely hard in other ways.