Having friends whose neurotypical kids are meeting all their milestones – as a parent of neurodivergent kids, is it really possible not to compare?

Last night I spent the evening with two very close and very lovely friends. They are kind, down-to-earth, inclusive and know of the diagnoses – and the struggles – that my kids have had and are still having. And they’ve not always had easy rides themselves with their kids.

Also, I wouldn’t ever want them to edit themselves or hold back from being able to talk freely about what’s going on in their lives and the lives of their kids. We’re good friends and we share in each other’s highs and lows – that’s what friends do.

And, for the most part, I have learnt not to let myself go down the comparison road with other people’s kids. But still, every once in a while (probably more often than I’d care to admit) I find myself uncomfortable, unhappy, unhinged and every other ‘un’ it’s possible to be when in the presence of other people talking about all the great things their kids are up to.

It’s got easier since I’m not at the school gates any more, with happy, confident, sociable, ‘successful’ children on every side while mine clings to me, trembling and begging not to have to go into the classroom.

These days, all of our kids are upper secondary school onwards, we’re (most of us) not so embroiled in their lives anymore as they make their own way in the world and we, at last, have more time for ourselves.

But last night, amid the talk of A-level results this Thursday, what unis they’ve all applied to, what back-up uni they’ll go to if they don’t quite get the grades (A,A,B) they need for their first choice, and tales from their inter-railing over the summer, new boyfriends, festivals and holidays with mates, I got that old flat feeling at the chasm that exists between other people's kids – and mine.

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This autistic life

My youngest has spent the last two years ‘learning’ from worksheets and text books in a room with just one other pupil and a Learning Support Assistant – too triggered, overwhelmed and dysregulated to be able to enter a classroom. As a result, he has no friends as all of his classmates have, quite rightly, progressed and developed and built friendship groups without him, as he has stagnated in a room. So, this summer, while they’ve all been at festivals and parties and proms, he’s been on his Xbox, reading comics and watching TV, alone.

I celebrated last week that he’d bought a walking pad so that he could get some steps in while he watched TV – it felt like progress!

Meanwhile, his elder brother has two friends – although it’s one main friend really that keeps the three-way friendship going. While this linchpin has been away for the past three weeks, my eldest son has seen absolutely nobody – the two that are left at home unable to fill the space and time without the third, lively, friend to bring them all together.

He did have a girlfriend – for the last four years – until she ended it six months ago. At the time, I thought it was a good thing. Sam was too dependent on her. He relied on her to organise him and get him out of the house. Saw her because it was comfortable, and he didn’t feel out of his depth socially. But it meant that he never pushed himself, didn’t step out of his comfort zones, and didn’t need to make the effort to build other friendships. I thought that the two of them splitting up would be good for them both.

 

It’s not you, it’s me

And it has been good for her. 

I imagine that being responsible for Sam took its toll. That it was annoying always being the one jollying things along, coming up with the ideas of things to do, trying to whip up enthusiasm to embrace life and seize the day with a partner who preferred sleeping in, staying in and looking in. I don’t have to imagine hard because that’s exactly how it is for me and, if I had my time again, the truth is I would steer clear of building a life with someone who is autistic.

That feels like an awful thing to say, because I’m basically saying that I’d advice girls not to ‘get stuck’ with my son. Perhaps if he was with someone who was similar to him – and happy to stay in, keep their borders small and live a safe, quiet life – I’d feel differently. But this girlfriend wasn’t like that and – although she was good for Sam in lots of ways – being with Sam, I don’t think, in the long run, was good for her. And so I feel proud of her for breaking away while she still could, before she got too entangled. Before they moved in together or had a child together or had a joint mortgage or any of the other things that could have happened to keep her with him. Or to cause her to finish it much later when there was far more for Sam to lose.

But seeing just now, on her Insta account, her camping out all night on a mountain with what looks suspiciously like a new boyfriend, going away with friends, smiling out among other happy faces painted with the England flag at a watch party during the World Cup… and compare that to Sam, who has spent his summer, mostly, on his Xbox or washing pots at the pub he works at amid the odd quiet night out with the two friends he has, it makes my heart hurt.

Other young people move on, build new experiences, meet new people, make new friends. 

Mine don't.

 

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Autistic genes

And I know this is how my boys are. The way they are, they wouldn’t want to be at parties or travelling around Europe. But another part of me thinks, how do they know if they never get the chance to try? And they never will because they don’t have the friendship group – or the outlook – that doing these things requires.

I love my kids dearly and this feels like something we’re not allowed to say, but I wish, for their sake as well as my own (but, mostly, for theirs) that they hadn’t been born with the genetics they have. 

I wish my kids weren’t autistic and didn’t have ADHD. Because yes, it might be that they never want to do those things that other people’s kids do (although I suspect that a part of them wants to want them) – but I think that if they had the genetics that made them a) want to and b) be able to do these things – go to parties, make new friends, have fun nights out, connect with people – they'd be happier. I think their self-esteem and confidence would be better. I think they'd feel more like they belonged in the world and that they were truly living.

However safe and comfortable it is, that's something you don’t get from hours of watching TV alone or playing solo-player computer games.