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-Image by Nick Youngson CC BY-SA 3.0 Alpha Stock Images |
Autism is a neurological and developmental condition which affects how people interact with their environment and others. It’s estimated that around 5.4 million people are affected globally, or around one in 54 children. In Europe it’s around 59 people per 10,000. In North America its around 86 per 10,000. and there are an estimated 370,000 autistic people in Australia. Although numbers have certainly increased since the first diagnoses began appearing in 1966, much of this is attributable to better diagnoses, more services and greater awareness and because the stigma about being ‘different’ is diminishing.
Not all children will display the same symptoms or to the same degree and there are quite distinct differences between girls and boys and between adults and younger people. Early diagnosis and recognition are important because they enable such children to receive the right help and support to reach their full potential. Depending on how severe their symptoms are, they are described as being “on the Autism spectrum,” which covers a broad range of behaviours and attributes. Autism is distinct from other differences such as ADHD (Attention Deficit Disorder) or learning disorders such as Dyslexia through they may well co -exist and collectively fall under the broader term Neurodivergent, meaning thinking differently.
While it takes a team of professionals to determine whether someone is Autistic or has autistic traits, typical behaviours and attributes often include poor motor skills, repetitive behaviour, delayed speech or other developmental milestones, difficulties with logic and difficulty with interpreting social cues. The following clip explains it better.
Although autistic children may process information differently, they are neither lazy, stupid nor deliberately disobedient. Nor does it mean you are a bad parent if your autistic child seems to ignore your instructions or throws a tantrum at the supermarket. It is now recognised that despite having some difficulties, many such children also have unique talents and gifts which should be nurtured. For example, that intense focus and maths ability have proven to be invaluable in IT and my son’s maths abilities and obsession with detail are appreciated at work, though he needs noise -cancelling headphones in order to be able to concentrate.
The Early Years
I knew almost from the beginning that this child was different. Unlike my other children, he couldn’t stand being hugged or held closely. If he was crying -and he did that quite often, he was more likely to calm down if I ignored him and read a book or got on with the housework. Then, while I was say, doing the dishes, he would crawl over, put his head on my feet and his thumb in his mouth and drop off to sleep. I put it down to the fact that he’d had a difficult birth and had had to spend his first weeks in intensive care. “He’ll have a terrible headache,” the doctors said, when they finally let him come home. “We won’t know if he’ll have any after effects until he’s about five or six and starts developing his fine motor skills.” I wonder if, after all these years he still has that headache.
In Kindergarten he drew very detailed pictures. When asked to draw a tree he would focus on the roots rather than the branches and draw in all sorts of little creatures like worms and beetles. He really enjoyed watching David Attenborough videos and had a special affinity with animals. He had a little First Aid kit in the car and if he saw an injured animal on the road, we ‘d have to stop and to see if we could rescue it and make sure there were no joeys in its pouch. He was unfortunately especially taken with insects, snakes and lizards. We were fairly OK with the giant stick insects, katydids and the odd bat with which we occasionally shared our home, but every now and then he would stroll into the tea room with a whip snake around his arm.
“These are poisonous,” he’d explain to anyone who’d listen, “But see, their mouths are so small they can’t bite anyone unless they have really tiny fingers.” Or, waving a less than enthusiastic Blue Tongue Lizard, he’d say, “You can tell this is a girl because see how her belly is quite light and round.” Visitors would look on with amazement and most likely mild terror. Somewhere down the back of a filing cabinet at the Museum in Launceston there is an unusual wolf spider which was supposed to have been named after him.
Lack of situational and social awareness
This child certainly understood animals much better than humans. At the tender age of 3, he was the last one still on the play gym when older children pushed it over a bank. At the supermarket when he and other children were playing on the chains around the carpark, my son let go and ended up at the hospital again. When he was about seven, he was being a bit disruptive while a man was offering me a job. Looking sideways at my son, he mentioned that children might be a problem, so I quietly gave my son the car keys and told him to wait in the car. Suddenly, there was the sound of the motor running and then an awful thump. My son who could barely reach the steering wheel had managed to drive across the parking lot and over a bank. Fortunately, he wasn’t hurt and the car still worked so we kept right on going. For his ninth birthday, we organised a big pirate party – something he’d wished for and looked forward to. He invited his whole class, but when the big day came, he retreated to his bedroom and played with his Legos.
A Primary School Dropout
He was easily overwhelmed by too many people and too much noise and occasionally had a meltdown. When he was in Grade 3, the headmistress rang and told me to pick up my child because he was unteachable. We saw two different psychologists then, but neither was much help. The first couldn't see a problem and the second one thought he might grow out of it. In Grade 5 at another school, he simply walked out and announced that he was never going back.
One of the things he hated was that as soon as he was involved in a topic, the bell would ring and he’d have to change subjects. On the plus side, he was very good at science and maths, but much to the annoyance of his teachers he could never show his workings. He loved anything factual and had a great memory for details, but disliked books about imaginary things like “The Lion the Witch and the Wardrobe.” He was very literal. One example comes to mind. When we were at King Solomon’s Cave and the guide was saying, “Now if you use your imagination, you’ll see the queen enjoying her eggs and bacon.” Son, then aged about 9 or 10 piped up saying, “No she’s not. They are just stalactites and the ground moved while they were growing.”
This time he was tested by a team from the Education Department. They told me that he was very bright but had ‘gaps.’ They were pretty sure that he had Asperger’s Syndrome* -a milder form of Autism which has since been subsumed under the general title of being on the Autism spectrum. However, they didn’t want to label him as such as it would just mark him out as being different, but be of little benefit as there wasn’t much which could be done about it.
*[The term Asperger’s
syndrome fell out of favour in the 1990’s because of the association of the
name with the Nazi doctor who first identified it].
Here's how the world looks to many Autistic people
Home School
Now that his father worked interstate most of the time, I
closed the tea room and we moved to an empty Hydro house. There were no furnishings
other than a desk and a chair for each of us, no decorations and no pictures on
the walls. Above all, there were no children talking all at once or constant comings
and goings. We got the curriculum and educational materials from the Correspondence
School and began home schooling, which was almost unheard of at the time.
Once my son was allowed to work at his own pace he quickly caught up to his peers in most subjects. We’d spend a whole day on Maths for example, and the next doing the required work for Science or English. Only his writing still lagged behind.
Language and Communication
We tried recording orally but it wasn’t much of an
improvement, nor was buying a computer, though he did like drawing with it. He
was much happier building models than explaining things. With the academic work
usually finished by Wednesday or Thursday we spent the rest of the week visiting
farms, a factory, national parks or the planetarium or we travelled to Hobart for the Dinosaur Exhibition. With his big brother now with his sister in Hobart, I still wanted him to have some interaction with his peers, so he went on camping trips with the Lone Scouts, was a devoted member of the Double Helix Science Club and occasionally joined in with others
doing remote learning for a music lesson.
One of the happiest times was when he was allowed to help with the seabird rescue after the Iron Baron ran aground in the Tamar River. He patiently cleaned and washed oiled penguins and later float tested them to make sure that they had enough oil (their own) in their feathers before being released back into the sea. Having met and worked with rangers and vets, he really wanted to become a vet but that would mean going to High School the following year and then on to University.
The Teenage Years
Once more we packed everything up and moved to Hobart. There still wasn’t much help available, but he did have a chance to spend more time with his older siblings and he also made a few friends. His Maths and Science were still good but essay writing and getting work done on time continued to be problematic.
I was studying too. At the end of that year, I accepted a student exchange in Canada and he and his brother went as well. This disrupted his progress a bit though he did have a bit of coaching afterwards to make up for it. I too had an additional four units to catch up on but I'd occasionally catch a glimpse of him constructing a flowerpot furnace for sand casting in the backyard or building a spider robot. He made biodiesel with his friends in the garage and launched a rocket at the football field. He loved rock climbing and caving and sailed his little Sabot across the Derwent or up to Wrest Point which was a big hit with his friends.
Things seemed to be going quite well until both boys started at the much larger senior college, some distance away. I’d drop them at the bus stop each morning on my way to Uni and it wasn’t until quite late in the year that I discovered both of them had been wagging most of the time. I was under quite a lot of pressure myself both financially and otherwise. Although I got my degree I had a breakdown shortly after. Then the whole family fell apart. My older son moved into a flat and the youngest moved in with his sister who now lived interstate.
Young Adult Years
From then on I only heard snippets about his life. He finished his last two years of college and then almost completed an apprenticeship which ended abruptly when the company shut down. Some time later he was accepted into Engineering on the basis of work he’d done. He took to Physics like a duck to water and the University even helped with note taking, but he struggled with group work and schedules. Completely distraught after breaking up with his long time girlfriend, he dropped out and tried his hand at running his own business. Although very capable when it came to web design, he perhaps wasn’t so good at hustling for contracts or getting work done within time and budget constraints.
Fortunately, he has now found a niche where he is appreciated, but I also know that he finds interacting with people all day totally exhausting. As Elon Musk – also diagnosed with Asperger’s, put it on Saturday Night Live “I won’t make a lot of eye contact with the cast tonight. But don’t worry, I’m pretty good at running human in emulation mode.”
Many autistic people complain how hard it is to act normal all day. “Masking” or camouflaging as it’s called, takes enormous effort and vigilance on the part of an autistic person. Staying calm, not overreacting when when people tease or interrupt, not taking it personally if a job needs to be redone and having to engage in good -natured banter about the weather or what the local football team is up to, when he'd rather be working on his own. Steve Silberman described it thus:
"People on the Spectrum experience the neurotypical world as relentlessly unpredictable and chaotic, perpetually turned up too loud, and full of people who have little respect for personal space."
We text each other a lot, even if we’re in the same house. That way he can control the input and give a considered response. Those things aside, he is one of the kindest, and most creative people I know. There is no guile or malice about him and he’s painfully honest. Don't ask him if you look fat in this. He'll tell you quite bluntly. He is always designing things and his eyes will light up if you ask him a question like, “Do wind turbines change wind patterns,” but brace yourself, you may find out a lot more than you bargained for.
He is loyal to his friends, though most of them are online and don’t necessarily share his passions beyond surfing, gaming or computing. Sadly, he's had to give up most of his other hobbies. He loathes shopping and being roped into family commitments. He’s much more likely to be thinking about terra -forming Mars or how to improve the Titan submersible, than getting himself something for dinner. If you are lucky enough to get a hand written birthday card from him, you should know that he has spent a lot of time crafting a special message just for you, not just any old greeting. It will be a few days or weeks late, but that’s probably the highest compliment you can get.
Though his story has found a reasonably happy ending and there are many success stories – see for example Elon Musk, Greta Thunberg, Bill Gates and most likely Steve Jobs, Tesla, Einstein and others, many more autistic people fall through the cracks. Would we have electric light and mobile phones today if Tesla had not had an Edison to spruik them? In my son's case, I mourn the lost time and false starts and the lost potential of others like him who did not get the help they needed. It also came at great emotional cost, not only to him personally but also to the rest of the family who didn’t get the attention they deserved. I take comfort from this quote by Greta Thunberg:
"I have Asperger's Syndrome and that means I am sometimes a bit different from the norm. And - given the right circumstances - being different is a superpower."
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