Today is World Health Day, and so I thought I’d share our experiences as a family with mental health, autism and my incredible son Noah.
My knowledge of autism was really very limited until, after a long process of seeking a diagnosis, it was confirmed that my son Noah is autistic. Then I made it my business to understand a lot more about this fascinating and frequently misunderstood condition.
With the benefit of informed hindsight, many of the tell-tale signs were identifiable for a long time, and I have since played Autism Bingo with other parents of autistic children: highly focused on specific subjects, very particular about what he wears, uncomfortable mixing outside his tight circle of family and friends. But I think it is the natural position of all parents to assume that their kids are ‘normal’ until experience suggests otherwise.
For us, things came to a head when Noah started running away at school, or trying to hide in his classroom or even while in large cities. Imagine trying to chase after your primary aged child as they run out from behind cars and buses, trying to find a place to hide from all the noise. At this point there were daily occurrences of being called into school for one thing or another. Some trivial, some not so trivial. Like the times he would escape the classroom and run as fast as he could – and that is very fast let me tell you – out onto the busy dual carriageway that his school is next to. Terrifying. Or the times they had to evacuate his classroom because he was throwing furniture around.
Then there was the time – almost funny, but not really – that the school had organised a Chinook helicopter to fly onto the playing fields so the children could learn about the military, and my son had escaped out and was hiding on the field. The helicopter had to keep circling around above the school as health and safety meant they couldn’t land while people were outside the designated area, and there we all are trying to coax a seven year old schoolboy away from the landing point.
He got suspended from school twice, missed more school than he attended, and eventually punched a classmate so hard the poor boy’s parents chose another school for him to attend. That was definitely the lowest point. We started to notice a pattern of behaviour and it seemed that when things didn’t go right during the school day, or the general chaos of a busy classroom or cafeteria got too much for him, he would seek to run. The school really tried to do what they could, but there was no getting away from the fact that they needed as much support as we did.
He couldn’t articulate exactly why he was doing it, but clearly he was really distressed each time it happened, and there were a few incidences at home too where he just got overwhelmed and lost it. We sought out help, and over about two years went through the laborious process of diagnosis, to finally come out with a conclusion. He is at the pretty mild end of the spectrum, in terms of how it affects his behaviour and his personality.
As I say, I think most parents take any suggestion that there’s something wrong with their children as an affront, and are uncomfortable with labelling their child with conditions, especially ones where a stigma is sometimes also attached. I certainly struggled to put his diagnosis into place within my own mind at first. Then I started seeing how it was helping Noah make sense of his confusion and distress, and I tried to get past my own concerns and focus on what worked for him.
Looking back several years later, Noah is totally happy at school, performing really well and with a supportive group of friends. His emotions are much more under his control. We’re not so unrealistic to expect there might not be further bumps along the road. He is now a teenager and we are aware of the complications that hormones might add to the mix.
We’ve all had time to adjust to the diagnosis and to accept what it means for him to be autistic. Now that the connection has long since been made with a number of his personality traits, my association with the label ‘autism’ is an entirely positive one, recognising the unique ways in which it shapes him. Of course, what matters most is his happiness and well-being.
Nowadays, you wouldn’t really know that Noah is autistic. He rarely ‘presents’ the traits some might expect of an autistic child. And that is the point isn’t it, about mental health. So often it is unseen. Noah is a kind, thoughtful, helpful, funny, clever joy to be around. But that might not always be the case, and certainly in the past there have been some distressing and troubling public displays of upset, violence and trauma.
So what I ask of you is this. Please, show some compassion and don’t make assumptions based on what you can see. Don’t assume that just because someone seems ‘together’ that they are. And don’t assume if someone is mouthing off in the street, it’s just because they’re being a dick. Be kind, for everyone you meet is fighting a battle you know nothing about.
I want to add one point as a post-script. Autism is often seen as something that can be caught, for instance from vaccines, and is brought into play as a risk factor in these situations. This fundamentally misunderstands the nature of autism as a genetic condition, and really drives me crazy. I also think it’s deeply insulting to people with autism, who are often struggling to fit their own ways of thinking into the ‘normal’ world around them. More knowledge and more compassion are most definitely needed!
I would like to thank my husband and my son, who have both contributed to this article, in their own special way.