Autism: Not difficult, just differently wired


Autism: Not difficult, just differently wired

PIETER VAN DER LUGT has learned a lot about life on the spectrum — his child's, and probably his own.


THE child psychologist last year had a pretty mouth. Perfect Cupid's bow, a matte raspberry pout. I don't remember her eyes because I tend to focus on lips when someone speaks.

Our child, she said, is neurodiverse. Previously Asperger's, informally high-functioning autism, officially autism spectrum disorder (ASD) level 1. Autism disorder (AD) for short. Such people like to call themselves Aspies.

Are we bad parents? The mouth said no, it can be hereditary. From whom? A smile in my direction.

It hardly helps to discover this after 60. You can feel sorry for your young self, dazed and confused, a walking misunderstanding. Some historical puzzles are finally solved, but you can't rewrite your history or apologise to everyone about everything.

To be absolutely sure, I take some of the few ASD tests for adults. Sacha Baron-Cohen's brother Simon (he probably hates being described like that) is autistic and helped to create a respected questionnaire.

I score high, but this test, like the others, warns that the result is an indication and not a diagnosis. It's frustrating because Aspies like certainty and clarity.

But not for nothing is the most famous quote in spectrum circles, “If you've met one person with autism, you've met one person with autism". Said by Dr Stephen Shore, an expert and himself autistic.

A shifting landscape

The world of spectrum people is fluid and relative. There are plenty of books on the subject. One batch is written by people who feel their story can help others, as journalists sometimes say to people who don't want to speak to the media. The other batch is encyclopaedically academic, with more qualifications and disclaimers than a lawyer's letter.

Books about a spectrum parent and child are a niche market, and what you get out of them is at most a few guidelines and suggestions. The only way to understand your child is to learn to understand your child.

Ours regularly does something new, different or potentially dangerous. We react incorrectly at least once a day. There are outbursts over pills, food, school, V-Bucks, showers, haircuts, bedtime, wearing shoes, dressing neatly. If you give orders or raise your voice, the pathological demand avoidance (PDA) kicks in, yelling, refusing or ignoring. You have to suggest, propose, provide logical reasons and accept that it may not work. He will do what he wants, or later do what you want as if it was his idea.

Aspies learn social behaviour through observation and repetition. The vicarage was my training ground. Hold the door open for the lady, show the strange kids your toys, say Merry Christmas to the elderly at Huis Uitvlucht.

Our child doesn't have something like that. He has us. No pressure.

Because they listen carefully, AD children are often good with accents. I explained that you can make fun of Afrikaans people (everyone does it), but better not with anyone else. When he discovered the Western Cape's official abusive phrase, I had to warn him that the p-word is disrespectful towards women. But it sounds funny, he says. Bold logic, always.

He and I both enjoy playing with words, have a sideways sense of humour, and often have a completely different perspective which can infuriate people in authority (teachers, professors, bosses, traffic cops). Then it's, “What did I say? What did I do?" or shocked silence over intense negative reactions. We're not deliberately different. I was built different, he says.

Aspies often struggle with additional languages, perhaps because they are traditionally learned through rules. These rules are full of exceptions, which feel illogical. Therefore, our child speaks only English (his mother tongue).

One morning a week, he goes to a cottage school, but he rushes in through the back door to avoid the other spectrum children. The rest is homeschooling, following the Cambridge curriculum. No second language, thankfully.

His test scores are good, but he progresses slowly because he can work for barely half an hour a day and easily gets discouraged. Then he beats himself up.

I’m a loser, baby

Low self-esteem is a thing. “I'm an idiot," my child says easily. “I'm a loser, baby," I regularly sing along with Beck.

Every disappointment, embarrassment, misunderstanding or insult confirms what you think of yourself. My skeletons aren't in a closet; they wander around butt naked in my head.  At night they have a party.

And they force me off course. I wanted to become a writer until one review made me feel rejected as a person. Right there, I stopped. At first, I didn't want to write, later I couldn't any more.

A good 20 years later I'm trying again, but my inner critic pens everything.

Here, our child draws a beautiful picture on his tablet. “It's trash," he decides. “Delete."

Fortunately, he already understands quite a lot about Aspies. We look at mouths when we concentrate on spoken words because eye contact becomes uncomfortable. In any case, we can't read faces. If you want something from us, you have to spell it out. We don't catch hints.

We detest sarcasm because we easily miss it and understand less about irony than Alanis. He cuts all the labels out of his clothes, I can't stand anything on my hands (I don't even wear a wedding ring). He grimaces at cooked vegetables and cheese, I'm bothered by loud sounds, like when he plays Roblox online with his friends. We often don't know what we're supposed to say and how loud or when to speak.

Anything that triggers anxiety messes with our heads. That's why we either overreact or under react to strong emotions. We prefer stories, music, and objects with clean lines, clear ideas and patterns.

Daily desperation

Everyone has advice, everyone can see what you're doing wrong. The SUV knights of the English-speaking Cape say, “You gotta set boundaries, bro." Strict parents preach to you about discipline. Or insist on routines, although PDA experts say these usually lead to more uncertainty and greater resistance.

On this side of the fence, it looks different. Many parents and children live with much greater spectrum problems. We follow a WhatsApp group where there is a flood of new crises and desperation every day. Later, you'd rather not know: there are 482 unread messages since the last time I checked a week ago.

A friend tells me he lies awake worrying about his two spectrum sons and wonders if they will ever be self-sufficient and independent. Especially later, without parents.

Every evening, either I or his mother have to lie with our son until he falls asleep. In the darkness, he sometimes opens his heart. “Daddy, some nights I cry because I think you and Mom will die. Why didn't you have me when you were 40? Then you would be 50 now. Sorry, 52."

You can spend so much time reading, thinking and talking about the challenges that you almost forget to live. But if we can only alleviate his fears so he can have a fulfilling life...

Another ADHD friend with an autistic son gave the best advice so far: “You shouldn't get angry, you should listen patiently… Just give all the love you can manage."

That's how a mouth should speak.

♦ VWB ♦

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