The Feast of Difference

I don’t read many children’s books anymore -my own children have long since had children of their own- but every so often I am reminded of how important books can be for them.

Whatever you may think of political correctness and its enthusiastic exhortations for sensitivity, or its celebration of differences, there are times when it can have demonstrably beneficial consequences. Sometimes it is helpful to advertise a spade as a spade -helpful to celebrate disparity and variation. Children’s literature is one example. https://theconversation.com/why-there-need-to-be-more-autistic-characters-in-childrens-books-90054?

The article discusses the importance of the depiction of children with differences so they can see and recognize themselves in familiar situations -in this case, autism and autism spectrum disorder. ‘Fiction plays a significant role in shaping how people understand and respond to autism. And in this way, books are often used by both schools and parents to help children and young people understand more about autism.

‘But the limited and skewed portrayal of autism means it is often misrepresented rather than represented in fiction. For an autistic child or young person this can be extremely isolating and they are often unable to find a version of “themselves” in a book.’

‘Ultimately, every story – whether in life or fiction – has characters, and all characters are different. So given that autism affects more than one in 100 people, there needs to be more done to represent the outside world inside story books.’

The more I thought about autistic children seeing themselves as valid characters in books, the more I realized that the same applies to all children of difference -autistic, or with other challenges. We’re beginning to see more of this on TV and in movies now; books are merely an additional venue, a more portable and perhaps more easily referable source for a child to self-identify.

*

I had some time to kill between flights in the Sydney airport a while back. There never seem to be any seats where you can find solitude in an airport -no seats where you can simply sit and process your journey so far. Of course, an airport is not made for thinking -it is a temporary storage facility, a slowly moving conveyor belt that discourages sequestration whenever possible. Like a drain, it is designed to empty its contents.

But even in a warehouse, there are token concessions to personhood, albethey profit driven, and after what seemed an eternity of peregrination, I found myself in one of those ersatz stores that sell candies and bottled water next to the pop magazines and a derisory collection of books. It was relatively quiet in there, though, and I amused myself by thumbing through a few of the more promising titles. In this particular outlet, there seemed to be no particular order in their placement, however -although I suppose the alphabetic one by author that they chose made as much sense as anything else to the owners. But a Fiction was as likely to be shoulder to shoulder with a Biography or a History, as long as the author names were similar enough. It was quite an adventure, really -I could never figure out what to expect as I moved along the shelf, quietly mouthing my ABC’s.

Only Children’s books had their own section, and it was along the bottom row -no doubt a pragmatically commercial decision. I probably wouldn’t even have noticed, had it not been for bumping into an excited little boy with a book in his arms and a kneeling mother with a backpack.

I bent over and apologized to the child and smiled at the mother. But I don’t think the boy even noticed -he was so excited about the book.

“I’m in this book, mister,” he said to me with an enchanting Australian flavour to his voice.

“Are you?” I said, delighted both with his accent and the sparkle in his eyes.

I’ve never been very good at guessing ages, but he was very young -maybe three or four- and wearing his own version of his mother’s backpack.

She looked up at me but returned an embarrassed smile. I could see the obvious resemblance between the two of them, and yet her skin was a few shades lighter.

“Want to see…?” He said, still holding me in his gaze.

“Of course I do,” I said, and knelt down beside him so he could show me.

The book was one of those large, hard-covered children’s books that is made to be indestructible, but he had no difficulty manipulating the big, thick pages and opened it to one with a drawing of a little dark-skinned boy smiling as if somebody was tickling him. The resemblance to the little boy beside me was quite remarkable.

I turned to his mother. “Did you…?”

Her smile grew and her expression immediately warmed. “No… His aunt -my sister-in-law- is an illustrator for children’s books. We have this one at home, and Jorry saw it on the shelf here…”

We both stood up while little Jorry held the book proudly against his chest.

“He just loves the picture,” she explained. “We’re a mixed family in a white neighbourhood, and he doesn’t see drawings of aboriginal kids in books very often. But he feels special now and shows it to all his friends when they come over to visit.” She rested her eyes on my face for a moment. “It’s amazing what that picture does for him, you know…”

She immediately blushed, as if she’d said too much -disclosed too much- and then glanced at her watch. “We’ll be boarding soon, so we’d better go,” she said and touched my sleeve gently.

Jorry carefully replaced the book on the shelf and looked up at me. “It’s a good drawing of me, isn’t it?” he said in a very adult voice and grasped his mother’s waiting hand. “We have to catch a plane,” he added, turning his head away like someone who needed to help his mother to the proper gate.

We are all stories, in the process of being told, aren’t we?

 

 

Advertisements

Autism and Obstetrics

I’m an obstetrician caring for worried mothers. They’re worried about things that might put their developing foetuses at risk for a whole range of issues and ask me for advice. Obviously I’m neither a paediatrician nor a child psychologist, so questions about autism leave me alone in troubled waters. There are so many rumours of risk, so many studies that seem to implicate everything from diet to anaerobic exercise in pregnancy, vaccinations to mercury in calcium supplements.

I wish I knew more about autism; I wish I knew anything indisputable about it… Well, that’s probably a bit harsh. I know that it’s now referred to as ASD (Autism Spectrum Disorder) and that it’s a neurodevelopmental disorder with problems in at least two areas: social impairments –things like communication and interaction- and behaviour abnormalities like repetitive patterns of  activities and that sort of thing. But it all seems rather vague. Especially the social components. At the severe end of the spectrum it’s an unmistakable impairment, and yet at the milder end…

http://www.ninds.nih.gov/disorders/autism/detail_autism.htm#268283082

It may be a sensitive set of criteria that bundles all the right things in it, and yet it’s rather spotty on the specificity. An example might help. Let’s say you’re a fisher and you want to improve your ability to catch salmon so you’ve designed a special net. You pull it up and there are a hundred fish in it, so it works –it catches lots of fish, but only one salmon. But, it did catch a salmon so it’s sensitive for salmon, but not very specific for them.

I also know the DSM-5 criteria of ASD –I’ll quote them from a more readable source: the 2014 UpToDate data base we have in our hospital. ‘ASD is characterized by 1. persistent deficits in social communication and interaction (eg. deficits in social reciprocity; nonverbal communicative behaviors; and skills in developing, maintaining, and understanding relationships) and 2. restricted, repetitive patterns of behavior, interests, or activities.’ They also say that the symptoms must be present early in childhood development, but may not become manifest until social demands exceed limited capacities. And there are three levels of severity rated separately for social and behavioral characteristics.

Okay, I understand those criteria –sort of- but coming from a medical specialty that is used to more concrete, objectively provable, and investigatable symptoms, they still seem rather vague. And there remain the difficulties that I have with including the milder, vaguer, less impaired end of that Bell curve distribution of characteristics –the end that may include variations of normal, idiosyncratic behaviors which may represent other issues –parental, social, even poverty-related stresses that might impinge on the child’s behavior.

I suppose it’s the boundaries that trouble me. There seems to be a wide variability of the reported prevalence of ASD and some indication that it is increasing of late, perhaps related to changes in definition as well as increased awareness. But how valid is that?

I’m all for increased awareness of ASD, just as long as we can be sure it is ASD that we’re aware of. This is important for interpreting the studies that purport to assess various causes of autism. For example, a BBC article reported a study from the Harvard School of Public Health which implicated air pollution as yet another cause. But, as the article suggests: ‘Experts said pregnant women should minimize their exposure, although the link had still to be proven.’

http://www.bbc.com/news/health-30521255

Good advice, I’m sure –pollution likely has many adverse effects on a developing foetus. One more wouldn’t be much of a surprise. Avoid pollution when you are pregnant by all means. But place that in the context of a pregnant woman who lives in a city where she cannot avoid it, and then add the additional worry of a possible link to autism in her unborn baby and you have sewn the seeds of an intractable anxiety. Helplessness. Despair. The fact that it is as yet unproven gets buried in the message; the statement that it is biologically possible does not.

As the aforementioned UpToDate 2014 data concludes: ‘The pathogenesis for ASD is incompletely understood. The general consensus is that ASD has a genetic etiology, which leads to altered brain development, resulting in the neurobehavioral genotype. Epidemiologic studies indicate that environmental factors account for few cases.’

I realize that there is a fine line between informing the public, and frightening them unnecessarily (or inadvertently), and I recognize and accept that we should all have the right to know what is being said in scientific circles about topics that affect us. Clearly it is difficult to balance whether or not to publicize information that is still in the process of being assessed and integrated into a coherent and testable theory, versus information that has been collated into a more accepted and validated model, but I think it would be a sensible, albeit challenging, step. It is a serpent’s egg, and reminds me of the warning of Brutus in Shakespeare’s Julius Caesar: ‘a serpent’s egg, which, hatch’d, would as his kind grow mischievous.

I’m certainly not advocating censorship –maybe just awareness. Prudence… Judgment.