The elephant in the room. Why does no one want to hear it when I talk about Jonah’s ASD?

Why do I always feel like I’m making a mountain out of a molehill whenever I talk to anyone about Jonah?  I have to bash people over the head with the subject before they ever talk to me about it, for all I may need their support – or maybe just a little bit of sympathy. It makes me feel guilty, as if I’m badmouthing my son, but often I find people are too willing to ignore it, or act like it doesn’t exist.

ASD is sometimes known as the hidden disorder. There’s nothing physical to show that Jonah is any different from anyone else, and more than one person has said that to me: for all Jonah ‘s limp wrists and pigeon toes, he’s an attractive looking child, and looks the very picture of health. At first, when he was very young, I thought it was because my friends didn’t yet have children, so perhaps they didn’t understand the heartbreak implicit in bringing up a challenging child; the unique stress of years of broken nights and constant tantrums. But now my friends have got kids of their own,  there still seems this brick wall in against acknowledging that anything’s wrong, even though I can see the clear difference between Jonah and their neurotypical children at the same age.

This weekend, I went to a nice part of London to see my uni friend Rachel. She’s got two young boys, a three year old and a toddler. She’s got her hands full, but she’s smiling through it. She has a nice house, nice neighbours, stays at home. She knows she’s got it good, and doesn’t complain about anything. Of her eldest, the three year old, she admits, “he can be a diva,” fully acknowledging the extent to which first time parenting can result in a neurotic kid. Her second, like Ava before him, is as chilled as they come, the contented product of a more relaxed second time around.

But when I compare Jonah to her eldest at the same age – I know that I shouldn’t, but it’s impossible not to – the differences are legion. Sure, young Tom has an obsession with swords and action figures and won’t answer the question direct: so much, so typical; but he engages, looks you in the eye, grins mischievously and talks – just about –  in sentences.

Even now, at eight, Jonah sometimes has trouble with some of the above. When Rach’s hubbie, James asked him about school, Jonah just made noises. He loudly complained about going for a walk (Rach hinted that city kids just aren’t used to so much exercise, but that’s rubbish. It was more that he’d rather be playing video games. I knew he’d be fine on a walk – Jonah just needs to let us all know how he felt about it.) He told Rach’s three year old to “get out of the way” while climbing trees. I know he sounds uncouth (and sometimes, to my chagrin, I feel I must apologise for him) but for the most part he’s just being pragmatic to the detriment of diplomacy.

But at one point, when he fixed us all with a dead eyed stare and pointed his stick gun at us like a high school shooter, I lost my cool. The lack of humour he presents in such moments is terrifying even to me. Thankfully Rachel took it all in her stride, and played along. Maybe it’s just me who finds such behaviour odd, although I do my best not to react.

But when I went to talk about it  – my fears, concerns: offload some stress, Rach was dismissive. “I don’t find him odd,” she said, after he wielded a tree trunk bazooka at us, cackling. But in my book, he was acting up, even for him: faced with an unfamiliar setting, and people he barely knows, he starts to show off; add an ice cream and a chocolate biscuit, and he starts to short circuit.

But when I pushed the subject slightly, Rach said pointedly, “but they’ve all got issues and challenges.” James was more constructive, probably because he’s been on the receiving end of a fairly monosyllabic attempt at conversation, asking me probing questions about Jonah’s friends and how he copes at school while getting bashed on the head by his toddler-scarf wielding a spoon.

Rach’s right of course. All children present their challenges. But if my friends ever  wanted to talk to me about a problem, I would be all ears, rather than putting up a conversational barrier about it.
But it’s been the same, with my mum friends throughout Jonah’s life – a general unwillingness to talk about it. Perhaps it’s embarrassment, discomfort with an unfamiliar topic, the fear that by commenting on Jonah’s behaviour they may in some way be offending me. Perhaps it’s that mothers, by default are never supposed to say anything negative about their children. Perhaps its just that Jonah’s basically fine. He’ll be fine, but he hasn’t always been fine, he’s been a challenge and bringing him up, I’ve definitely not been fine, coming to terms with who he is and how I feel about it.

But I’m sure that’s true of all parents. I just wish sometimes, I didn’t feel, when I’m talking to my friends, as if I’m complaining about nothing, or worse, making it up; as if, Asperger’s, like ADHD, dyslexia or some other spurious modern malady now being queried by health professional, though lung into by sufferers, exists only in the head of the parent trying to excuse their offspring, and by default themselves, for some flaw of nature or nurture. But anyone who deals with Jonah daily will know exactly what I’m talking about, and exactly why, sometimes,  I just need someone to listen.