Why do people think they can judge my parenting because my child is ASD?

Unedited version of post I guest wrote for mumsnet.com

It’s Autism Awareness Day, and I’d like to caveat this piece with the understanding I only have an echo of the experience many of you Autism parents will have. My son is diagnosed ASD, an umbrella term which describes a spectrum of social and emotional disorders with autism being at the more extreme end. My son is diagnosed Asperger’s, although these days, all autism spectrum disorders are grouped together under the ASD umbrella. One in 100 people classify as Asperger’s, and many people see it not as a disorder, per se, but as a type of neurodiversity – having particular skills that mean he is gifted at certain things – in Jonah’s case, numbers, computers, Minecraft.

However you view the condition, Asperger’s is at the more “high functioning” end of the spectrum. My son will, with luck, live a more or less normal life, but the condition will nonetheless affect him for the rest of it. It means he has social and emotional problems that mean sometimes, his behaviour can be hard to control. Don’t get me wrong – compared to what some ASD parents are managing, it is minor, and I salute any of you who are dealing with more complex cases. But this doesn’t mean it hasn’t been without its challenges.

Raising Jonah has been hard, and perhaps the hardest part of it has been other people. When Jonah has a meltdown, and in his toddler years, these were frequent, epic and generally over something small, it was hard not to feel the acute sting of social judgement when they happened in public.

When he went through his hitting stage – a common enough symptom of ASD, along with lining things up, talking at tangents and walking on tiptoes, it culminated in him giving another child in his nursery class a black eye and bloodied lip. Thankfully, the parent a doctor and mother of 8 was pretty relaxed about it. Yet, I felt the hot shame of embarrassment every time some incident happened, which was with monotonous regularity. I don’t blame people for judging. As caring for him took its toll, my patience dissolved. I became depressed, my self-control dissipated. I became withdrawn as social interactions became increasingly fraught and stressful.

Seeking help for my own problems, I learned one thing. The reason I felt so judged about my parenting was because I frequently judged others. I felt that if people were calmer, more consistent, gave in less, and ensured their child had enough sleep, then they would have fewer problems with their children too. Yet, here was I doing all these things as reliably as you can when you haven’t had a good night’s sleep in god knows when, and yet my son’s behaviour at times felt like it was spiralling out of control. No wonder I felt powerless and angry.

Getting a diagnosis, which we finally managed, when Jonah was six, did much to alleviate my frustration. It felt like a green card after all the years of feeling like I was failing as a parent – when my son would go loopy after eating bread, or took years to toilet train or seemed withdrawn and highly strung when we had a nice day out. It absolved me from the judgement I felt I was under because my methods – routine, positive reinforcement, healthy food, plenty of sleep – which I truly believed in, weren’t always as successful as I hoped.

I genuinely believed mistakes I made as a first time mum contributed to some of the behaviour we got and still sometimes get from Jonah. I think feeding him on demand set his default to “shriek” when he wanted something. I think getting him into a routine sooner would have saved our sanity, and eased up on the tiredness that set in like dry rot. But once we’d climbed a steep learning curve, things evened out, and my fears for him as a terrible toddler haven’t come to fruition.

Jonah is now a mostly charming nine year old, who takes the bus to school on his own in the morning, devours books, crafts impressive things in Minecraft and is top of his class in maths. At home, his behaviour, while not perfect, is pretty darn close. He engages with me before bedtime, remembers to say hello and goodbye, takes an interest in how my day has been, empties the dishwasher (although not always without a few grumbles) and has an offbeat sense of humour that, thankfully, has moved on from its prurient stage.

The tantrums have eased, although a late night can send him spinning into hysteria with little provocation. But I have stuck to my guns, with calm, measured, no-buts, consistent positive reinforcement, ruthlessly ignoring the stuff I don’t like – most of the time, although I fall short, like anyone would, from time to time. In practise, it’s is not always easy – I too have my own set of behaviour quirks. I struggle with OCD, have a tendency to look on the darker side of life and have my own demons to battle. I tend to lose it as we’re heading out the door, the dilly dallying and delays wind me up as I rush to get to work, but it’s a play to my reactions, which I have defintely given over the years.

With Jonah, my reactions worked like a computer algorithm. If I lost control and got angry, the behaviour would increase. Sometimes, on the odd occasion I shouted, he would appear to short circuit. When Jonah had a phase getting ticky – he still slips into the odd loop, twitch, grunt or saying, drawing attention to it would inevitably make it worse. I remember losing it when he was a toddler when he swiped a made-from-scratch meal off the table. The next week’s meals were also eaten off the floor. It takes the resolve of a saint to ignore regular bad behaviour, particularly when you know they’re doing it to get a reaction – especially hitting – and recently, swearing (I caught Jonah saying a fairly choice phrase in the bath today. All I did was ask him if he knew what it meant and left him to it.) But I have to say, by and large, my parenting methods have proved successful.

Perhaps they’ve been too successful. I think a lot of people who don’t know Jonah will struggle to see him as anything but normal. And that is where it is getting tricky. These days, he’s often just seen as naughty.

Over the past few terms, Jonah has increasingly been getting in trouble at school. A change to his routine can cause his behaviour to spiral, and his school is going through a raft of changes. New rules are being brought in, his teacher has left (along with the head and upper management) and he has had a steady flow of supply teachers who, I feel, aren’t getting adequate support or information about individuals within the class, part of a mainstream school, takes SEN pupils as a priority.

Last week a supply teacher couldn’t handle his class at all, and wrote a letter to the new head to say she would never teach at the school again. She listed the names of children who had been misbehaving – in particular, answering back. Jonah’s name was on the list. The head read the letter out to the class, in the hope it would shame those involved into self-awareness about their behaviour. Jonah was left seething, as was I. He hadn’t felt he had answered back.

The point about autism is things are black and white. Jonah is almost incapable of lying, although he is learning slowly to be diplomatically silent if he can’t say something nice. But he often just doesn’t know when to shut up. I felt the incident was unfair, and brought it up with the head, but he gave me a stiff, non-committal response.

There have been other incidents. For months, Jonah was getting picked on in the playground. He finds it hard to interact with his peers, often talking ad nauseum about subjects that might not be all that interesting for the listener. He gets too close to people, and the conversation is often one sided. His bi-lateral coordination issues means he is not so great at football (although he is an epic climber). Where other kids are told “unlucky” by their peers if they fluff a pass, Jonah gets laughed at. Unfortunately, he has not yet learned from my techniques to ignore things he doesn’t like, and he gives pretty spectacular reactions. Sometimes he sees red. One day he lost his shit, and the teacher who tried to manage it – not his regular one, who is excellent – but whoever was on duty in the playground, got in the firing line. Jonah kicked them, and I got a phone call that day from Jonah’s SENCO. The subtext was serious.

We know Jonah has additional challenges, she said, but this is unacceptable. I agreed, but suggested a more low-key approach might have been more successful in handling the situation, allowing him to cool off before being asked to explain himself. She suggested Circle of Friends, a buddy system for introducing the idea of Jonah’s challenges to his peers. I felt instinctively that by drawing attention to his difficulties, it could make him more of a target.

But it bothers me that Jonah is being marked out as a troublemaker. I truly believe that poor handling by me over the years could have brutalised my son. When I hear of crimes committed by men on the autism spectrum, my blood runs cold. I see it in the drawings he brings home – Jonah, drawn as a computer figure, armed to the teeth and battling his demons in pools of blood. These aren’t the drawings of a happy child. But left to his own devices (and given time on them too) at home, he’s a happy confident kid, who has learned to make working machines with circuits made from red stone, coding them with a circle of online friends with whom he interacts from the safety of Facetime and iMessenger – and I’m proud to say so.

The real world isn’t so understanding and I worry about his future – what happens if he gets the wrong end of the stick with a girl, refuses to sit an exam, has a temper tantrum with his boss? As these social perils await him, I will be there fighting his corner, just as I always have been, knowing that Jonah’s behaviour is entirely predictable, when all this are equal.

In the meantime, I try really hard not to judge the parenting styles of my friends, but I still find it hard. I really believe that parents are responsible for their child’s behaviour – even though there have been times when Jonah’s additional challenges have made it much harder for me to manage his. Because Jonah’s behaviour still isn’t perfect, I feel as though I’m not really in a position to get on my soapbox, but I know the leaps and bounds he has come on through calm consistency and letting him do what he likes, within the confines of a good routine.

In some ways,the more Jonah can “pass” for normal, the more likely it is that he will end up in trouble. This is why Autism awareness is so important. It’s not like he wears a wristband to tell everyone he is Asperger’s, and you certainly can’t tell by looking at him – the odd gurny smile, a pigeon step to his walk perhaps, a refusal to cut his hair – and the black mist that descends when he is angry – but most of the time he is just gorgeous. Although, as it stands, he is comfortable enough telling people – so comfortable, in fact, we have to ensure he doesn’t use it as an excuse.

But it is an excuse a lot of the time, and until the rest of the world understands that it is harder for him – to get the right end of the stick, deal with situations, smells, emotions, conversations he finds uncomfortable, he will have to be ready to cope with whatever battles lie ahead. Raising Jonah has, at least, enabled me to understand other parents might be dealing with children with challenges of their own. And while I still believe parents are responsible for managing their own child’s behaviour, that’s not to say they are always responsible for their own.