My son Joseph was born in 2005. By the time he was one, it was clear that his developmental milestones were not being met. Soon after, he was diagnosed with autism.
Like me at that age, he fixated on certain aspects of life and struggled to interract.
Being born into arguably the most exciting age of almost monthly technical innovation, he was able to immerse himself in his interest of-the-day using the first iPhone, Internet connected TV and iPad. I soon found a curly haired little boy shunning Teletubbies and Balamory in favour of seemingly random YouTube videos.
These included mildly inebriated frat boys on American college campuses joyriding slow wheel chair lifts; promotional videos for stairlifts; street sweeping cars in Canada and — a particular favourite to this day — buses being driven around city centres all over the world. The same videos would be played repeatedly, in the same order, several times a day. He’d jump up and down on cue, as if wired into the timeline of the video.
It was clear that the fixed outcome made him happy. The comforting repetition covered him like a warm blanket.
You might say I was a bad, indulgent parent for letting him watch such drivel on YouTube and for not forcing him to socialise and interact in a more traditional sense. Those things are undoubtedly important.
But that’s the thing about bringing up a child on the autistic spectrum. There is no typical approach or order. There is no right or wrong. You can guide but you cannot force. Perhaps the same could be said for all children — every child is different, but kids on the spectrum even more so. You certainly cannot apply a one-size-fits-all approach.
In a world that is filled with so many unknowns, unpredictable people and a seeming lack of logic and order — knowing what is around the corner provided a sanctuary for him. It still does.
Now he is nine, he has moved on to Minecraft build videos, football matches with own goals and WWE fights (but not the girl wrestlers). Google (with Safe Search and content filtering) and Wikipedia are a god send for the 1001 questions that Joseph’s brain produces on an hourly basis.
I can see parallels with a recent article in the New York Times where a parent thanks Apple for Siri, the speech recognition and digital assistant software built into iOS devices, for the pseudo companionship that it has given her autistic child. Siri’s calm, unflappable and logical demeanour may irritate us — but for him it soothes by providing much needed interaction on his terms. This was a heartwarming (and emotional) story to many, but equally you can imagine the detractors. “You cannot let your son grow up speaking to a computer program! That’s unnatural! Send him outside to climb a tree, for God’s sake.”
One (of many) quandries that parents with children like Joseph face is — do we view access to the Internet and iPads as a luxury pastime, or is it so much more to them? To me it is their lifeline, their sanctuary, their happy place — are we really doing them damage by allowing them to explore, learn and interact in their own way?
Is restricting access by way of punishment really a suitable thing to do? Is it melodramatic to compare it to cutting off their oxygen supply?
The truth is, I don’t know. Nobody does. Even I change my mind regularly.
There has to be a balance. I am not saying we let the little darlings play Minecraft until 3AM. It is not healthy to spend every waking hour connected. The climbing-tree-brigade would tell us “there’s a whole wide world out there to explore”. They’re not wrong. I do want him to grow into a well-rounded adult with a life beyond an iPad screen. Obviously.
But it isn’t as simple as that.
Saying, with increasing insistence-turning-to-anger “come in — the water is lovely!” to someone who has a fear of water is ridiculous, as is saying “cheer up, moody” to a person with depression.
“Your child is so badly behaved — why are you doing nothing about it?”
Parents of autistic children are not failing their children with what may be perceived by outsiders as inaction. We do not give in and spoil them.
Dragging an autistic child up to behave in a certain way, or to fit a certain blueprint, will not work. They cannot be trained like a dog.
I cannot search for a cure on the Internet. Google will probably suggest 32518 articles, like this one, written by Mothers and Fathers — all with the common goal of making life better for their children. How they can help them and set them in the right direction. How they can reach their children.
These posts show many kind, caring and open-minded parents and families who understand, accept and embrace their children and their quirks, continually striving to do the best they can for them. Whatever it takes.
This is anything but inaction.
For every uninformed or emotionally shallow person, there is at least one who is understanding and compassionate. Maybe the world isn’t so bad, after all.
I did experiment with Joseph whilst we were captive on a train journey yesterday. As a change to YouTube, we spent some computer time writing a Pontoon game. Joseph’s Pontoon has some wacky rules such as a variable BUST value that is configurable on-the-fly (97! you are bust!) as well as an infinite deck of cards. This makes the game more fun, he says.
Seeing him control and modify the code I had setup for him was an incredibly proud moment for me. It was clear to see what a confidence boost this was for him. To him, all of a sudden, previously irrelevant skills such as mental arithmetic suddenly became relevant. Writing code simply provided the context.
Familiar themes came to the fore. Repetition and the predictability of outcome all fitted into his head perfectly. Although fleeting, he was completely engaged.
I often wonder what children like Joseph would have done had they not been born into the age of iPads and the Internet. Would they have given up and been lost? Misunderstood, given up on or simply categorised by society (or worse, their families) as simple and not quite right?
I dread to think of the waste of the brilliant, analytical minds that might have been squandered and lost through the generations.
Not all children go on to change the world. Not all will care about technology. Not all will write or understand code. Why should they? I am not saying that buying an iPad or teaching your autistic child to write code is the missing piece. That’d be ludicrious.
It is however clear to me that technology does have the potential to change the world for a possibly bewildered, confused or disorientated little boy or girl. Who knows what can be unlocked in other parts of their world by the confidence that it brings.
Now that’s what I call world changing. And the best thing? It has already happened.
