Volunteering as an ‘Autism Mum’

and that’s a shame, because we really are a group. We’re just a group that often doesn’t meet each other.

Around the time my son was diagnosed, I remember sitting in the ‘Autism Next Steps’ class the GP had referred us to – one of those standard classes everybody gets sent to after you’ve been told The News and are wondering what on earth you’re supposed to do now.

but of all the moments that helped me, the one that stayed glowing in my mind was one that nobody had put on the schedule.

We were shown an old short film, ‘A is for Autism’, in which a group of autistic adults talked about their experiences growing up, with various cartoons and montages on-screen to give some idea of how the world looked from their perspective. 

Fair warning: if you don’t have a child on the spectrum, this isn’t going to sound funny. It probably will sound outright puzzling, in fact, because what the screen flashed up was a series of light switches, just quick shots of young hands turning a light on or off, one after the other.

And the entire room burst out laughing.

It was the first time in three and a half years I felt normal.

The joke was simple enough: autistic kids tend to have a thing for lights. But whose normal life involves trips to a playgroup where you spend the entire morning watching your child ignore all the toys and peeling them off the doorknobs and light switches before someone kicks you out? Nobody’s, except mine, until that moment. But suddenly, there was a different answer: ours.

I was in a room full of women I’d never met, from different countries, different cultures, different language groups, different religions … and in that moment, we realised we had more in common with each other than with anyone else we knew.

the first few years of a child’s life on the spectrum tend to represent an hour-to-hour, minute-to-minute ongoing crisis. My son is a darling, but his sense of self-preservation was, let’s say, not his strongest point, and I honestly earned these white hairs. But of the many things they don’t tell you about having an autistic child, this is the biggest: it’s isolating. Even if you’re surrounded by people.

Playground chit-chat revolves around the experiences of parenting ‘everyone’ has, and when those experiences are completely foreign to you, it’s easy to feel lonely, frustrated, like a failure. You stand in the middle of a crowd of people with an invisible wall between them and you, built up of experiences that other people don’t have.

As I learned more about how to be a parent to my uncommon little boy, I started to feel a little bit more competent at home. But until I started volunteering, I was still on my own.

Having an autistic child, it’s easy to feel stupid a lot of them time: your child has a perspective you may never understand entirely, the stakes are high, and the world certainly isn’t short of people eager to lecture you! It was only when I started meeting other people with special-needs kids – people no stupider than me, but a few years earlier in the learning process – that I started to realise that actually, I wasn’t stupid. Somehow, without really having a plan longer-term than ‘If I weather this meltdown right, maybe he won’t have one next week’, I’d acquired a ton of skills – and that there were many, many people out there, going alone through that isolation.

And no one should go through that alone.

Some of the volunteering I do now is supporting families with special-needs kids. I love special-needs kids. Their energy, their honesty, their capacity for delight, their deep response to love: these are things I’ve been living and breathing for years, and stepping out into the world and meeting other families where ‘basic coping skills’ suddenly looks like ‘teaching skills’ has been amazing. But some of the volunteering has been just with other mums. On the face of it, there’s not much connection – teaching an autistic child to play Balloon Catch and teaching a non-autistic adult how to crochet don’t seem to have much in common. But it reaches a place in me that’s needed human contact for a long time: the place of isolation in the middle of people, the place of knowing, as some lucky people never have to learn, that life really is difficult, that difficulty is parcelled out in unfair shares, that hard times can happen to good, intelligent people, and that what we need most of all is just to be around other people who meet us where we’re at.

Things happen that we don’t expect, and we either cope or we don’t. When you’re volunteering, you meet the people who’ve decided that they’re going to cope – somehow, sometimes, some part of the way, at least. And that, I think, is what I love the most: meeting people I can admire, making connections, and doing even a little bit to make the day better for them and for me both. I don’t think I ever believed in ‘look after Number One’ or in being selfish as a principle, but my son has taught me on a deep, physical level about the need for solidarity. Human beings are social animals, and we need each other.

So many women I’ve met talk about going to classes just to ‘get out of the house’, and boy, do I know that feeling! But I feel like we all want something more than that, something that might feel a bit peculiar to say out loud. We want to get out of our isolated circles, out of our limitations, out of that sense that this is all we have to look forward to: that this confusion, frustration, anxiety, worry, might just be who we are now. And yes, of course we’re going to worry: we’re mums, that’s basically what we do. But learning something new, even if it’s just a new stitch or a new pleasure in meeting people, is a step outside ourselves, a chance to say, to ourselves and the world: who we are now doesn’t have to be all we’ll ever be. We can acquire skills, discover things we didn’t know about ourselves. We can get stronger, brighter, happier – and we can do it together.

Having an unusual child put me on my own, for a very long time. But if there’s one thing it can force you to consider, it’s the idea of common humanity. We’re all different from each other – but people who share the knowledge that life can be difficult, and that we need each other to get through, have the one thing in common that really matters.