I have been pondering the nature of fear, particularly in a behavioural and anthropological context.
I wrote in my book “… other children stare at [Ian] in the supermarket with a deep intensity, aware of his strangeness and unsure whether he’s to be trusted or feared.”
We fear what we don’t know. We fear what is unpredictable. We fear the strange and the unusual.
“People with a mental illness are typically perceived as being dangerous, unpredictable and different.” https://www.tandfonline.com/doi/abs/10.1080/09585189508409874
And you don’t get more ‘unpredictable and different’ than the behaviour of an autistic person. I mean a profoundly autistic one, not someone on the spectrum who has worked hard at it and managed to control their autistic behaviours and mannerisms, and found a workable niche in society. Good for them. I admire that enormously.
Ian’s behaviour is not predictable. Frequently, it is simply odd. And sometimes, when he gets alarmed, it could – and has been – perceived as threatening. It isn’t. But it has been perceived as such. (See my blog entitled “Autism : Listening to the people who matter”).
Anthropologically, fear has kept us alive, and it takes a lot of nerve to get beyond it.
I’m the kind of person who steps into the strangeness. I’m the one who walks into the dog fight to break it up – call it courage or call it foolishness, your choice – and I’m sure it’s no accident that I ended up with one of the strangest kids on the block, but it has definitely made being Ian’s parent easier. His weirdness doesn’t phase me. If he gets pushy, I’m the one in his face asking him what’s going on and defusing the situation as best I possibly can.
But other people don’t necessarily have the advantages (or craziness) that I have.
“Kids (and adults) with autism behave differently from other people. And if there’s one thing experience teaches us, it’s the fact that differences can be scary. Children with autism are taught to avoid “unexpected” responses to others—not because they are in any way harmful, but because the “unexpected” (rocking, flapping, asking the wrong question, repeating the same words, etc.) frightens people.” https://www.verywellhealth.com/why-is-autism-so-scary-260604
The behaviour of some autistic children can be very, very challenging, and it frightens us because we’re meant to be afraid.
“At the basic level fear guides our fight or flight responses and helps to keep us safe and alive. Fear heightens your senses and awareness; it keeps you alert and helps in better preparation.” https://www.thriveyard.com/the-positive-side-of-fear-15-benefits-of-fear/
Wikipedia has a very good dissection of fear at https://en.wikipedia.org/wiki/Fear and I found this interesting, too — https://www.healthline.com/health/understanding-and-overcoming-fear-of-the-unknown#overcoming-fear
So how do we combat it? How do we encourage our unpredictable ‘frightening’ children to stop scaring people? And – perhaps the most important question – should we?
In some ways, it’s like owning a dog. Bear with me here, it will make sense, I promise …
Imagine you have a big dog. He’s yours; you’ve had him since he was very small. You know he has a heart of gold; you know he loves people and he would never hurt anyone. He might pull on the lead to say hello to someone when you’re out for a walk. He’s strong. You hold him back because it’s polite. You try not to let him just bulldoze his way into that person’s space.
A stranger sees that dog, the size of its teeth, the length of its tongue, and they see you pulling him back. All they can wonder at that moment is: Are you strong enough to hold him?
It doesn’t matter if you say “He’s fine! He’s friendly!” because in the absence of further knowledge (or instinct) that stranger can’t read the dog’s body language. All they are conscious of is unpredictability, and all they hear is their amygdala screaming at them to run.
Now transfer that situation to my child. He’s an adult now. He’s taller than me. He’s slender but he’s a grown-up. That much is obvious – and I have encouraged that notion by helping him cultivate a beard. It’s harder to treat him like a child when he definitely doesn’t look like one, no matter how he behaves.
We are in the supermarket together, Ian and I. Ian decides he wants a particular type of bread. He makes a bee-line for it, regardless of who may be in his way. Social space and autism do not go hand in hand – see https://iancommunity.org/ssc/personal-space-autism. I happen to be holding his arm, and I try to control his forward movement so he doesn’t just push past a stranger.
The stranger turns, and sees Ian lunge towards her. There is a flash of fear in her eyes. It’s quick, there and gone – she’s seen me and she controls the fear in the space of a blink – but I have seen it. And I cannot unsee it. This woman, this stranger, was afraid, even for the merest moment, of my son. Because his behaviour is unpredictable. Because he was behaving outside the socially accepted norm.
Of course, the stranger carries her own history, her own baggage. She may be afraid of men generally. I would never know. The fact remains that in that moment my son engendered a fear response, and all I can do is apologise.
We worked hard, when Ian was in his intensive therapy programme, to modify his behaviour. We reduced the oddities; we encouraged the ‘normal’; we moulded him as best we could – rightly or wrongly – into a socially acceptable human being. For many years, it worked. Ian was as ‘normal’ as he could possibly be.
“Normal is also used to describe individual behavior that conforms to the most common behavior in society (known as conformity). However, normal behavior is often only recognized in contrast to abnormality. In its simplest form, normality is seen as good while abnormality is seen as bad. Someone being seen as normal or not normal can have social ramifications, such as being included, excluded or stigmatized by wider society.” https://en.wikipedia.org/wiki/Normality_(behavior)
But in the absence of continued pressure – no matter how gentle – to behave this way, Ian reverted to type. Like a turtle, he stuck his head out of his autistic ‘shell’, and played in the real world for a while. But when there were no checks on his behaviour; when he was surrounded by people who – their best intentions aside – accepted however he behaved because he’s autistic and that’s how autistic people behave – he regressed to his personal lowest common denominator, profoundly autistic, and retreated into his carapace once again.
And so I am left with a young man who scares people who don’t know him. People who see him as ‘unpredictable’, and therefore as potentially dangerous.
As I wrote in my book “I see this and my heart is squeezed. How could they know my angel has a gentle soul and wouldn’t hurt a fly?”
It’s a tough one. We know our sons and daughters. We know the limits and nuances of their behaviour. Other people don’t. Perhaps we just have to accept that on some level, our children’s unpredictability will always flick that fear response in strangers.
It’s no fun, but it is one more challenge that we, as the parents of people with autism, have to face.