Well it’s 2013 and exciting things are in store, not least of them a new, completely updated and revised edition of the Australian Autism Handbook, which should be in stores April.  The following month, May, sees the release of another publication, which admittedly has received much more press than the Handbook, if not all of it good.  I’m talking, of course, of the Diagnostic and Statistical Manual of Mental Disorders, 5th edition, better known as the DSM-5, with its new diagnostic criteria for autism spectrum disorder (ASD) and the disappearance, at least from its lexicon, of Asperger’s disorder and PDD-NOS. Naturally, we cover the DSM-5 changes in detail in the new edition of the Handbook.

But what of 2012? Two august American bodies — Autism Speaks and the National Institute of Mental Health (NIMH) —have provided us with their assessments of the most significant breakthroughs in ASD research in 2012.

In the NIMH summary, Director, Thomas Insel, covers all bases: early detection, early intervention, genetic developments and environmental research, pondering whether the current 1 in 88 prevalence figure simply reflects better ascertainment or whether environmental factors are driving a real increase in the disorder.

He also alludes to the ever increasing wave of autism research, noting that there were over 1,000 ASD papers related to genetics or brain imaging published in the 2-year period from January 2011 – more than three times the number of papers from the same interval ten years earlier. You can read  the NIMH summary here.

Autism Speaks’ Top 10 Autism Research Achievements of 2012 covers largely similar ground, but adds promising new pharmaceutical developments surrounding the drug, arbaclofen, and much-needed research examining the neglected topic of adult transition support.

Interestingly both reviews, as well as TIME magazine’s Top 10 Medical Breakthroughs, included the study which most piqued my interest last year: the Early Start Denver Model (ESDM) research that was the first to demonstrate that intensive early intervention could bring about changes in brain ‘wiring’, producing brain activity patterns in study subjects that were virtually identical to those of children without autism.  Importantly this normalised brain activity was associated with improved social behaviours, too. Follow-up studies are of course necessary but this is groundbreaking stuff.

I’ll leave the last word to Insel:

…the surge of investments made in ASD research over the past decade, are paying off by deepening our understanding of this complex disorder and laying the groundwork for future advances that will ultimately improve the lives of people with ASD and their families

All good news. I wonder what we’ll learn in 2013.

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Joe is now 11, almost 12. His lack of social understanding means he can occasionally be insensitive; he embarrassed me the other day by loudly pointing out the “fat lady” at the supermarket. He’s also the sweetest kid in the world, who greets me each day with a cuddle. My son is socially naive, a babe in the wood; much more likely to experience hurt than to hurt others.

In the lead up to Christmas, when the dreadful news of the Sandy Hook massacre in Newtown, Connecticut, came through, I crossed my fingers and hoped the words ‘autistic’ or ‘Asperger’s’ would not enter the equation, as they had after the 2007 Virginia Tech shootings.

It didn’t take long.  Salon reported that Adam Lanza’s older brother, Ryan, ‘told authorities that his brother was believed to suffer from a personality disorder and be “somewhat autistic”’. Other media outlets reported that Lanza, a socially aloof loner, suffered from Asperger’s syndrome. Personality disorders are a difficult concept for the lay public to get its collective head around; Asperger’s on the other hand is a more familiar concept and was immediately latched on to.  Many news reports dropped any reference to personality disorders to focus completely on Asperger’s, some going as far as to suggest the empathy deficits associated with autism/Asperger’s could offer an ‘explanation’ of Lanza’s behaviour.  Thanks guys.

The irony of this is that the personality disorders (PDs) — there are several listed in the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disordershave as one of their defining characteristics ‘significant impairments’ in empathy and /or intimacy.  In fact, it’s at the extreme end of one of the PDs, antisocial personality disorder, that the psychopaths sit. British studies have found that half the male prison population fit the diagnostic criteria for antisocial personality disorder, although only about one-tenth of these would be considered bone fide psychopaths. My husband, in his capacity as a doctor, has met the occasional psychopath and can testify that they are very scary human beings.

Asperger’s syndrome, on the other hand, is an autism spectrum disorder (ASD), associated with social and communication deficits. People with autism can misread body language and the other emotional cues that most of us pick up naturally. This means they can struggle to get inside someone else’s head, what autism experts such as Simon Baron-Cohen have termed a theory of mind deficit or mindblindedness. So yes, technically they may lack empathy, but this usually leads tactless remarks, not premeditated violence.

In a 2011 article in Research in Developmental Disabilities, Lorna Wing, one of the world’s leading autism researchers, characterised the empathy deficits of ASD:

‘…the anti-social psychopath usually has full understanding of what goes on in his/her own and other people’s minds. However he/she uses this knowledge to manipulate other people to achieve his/her own ends. He/she has empathy but no sympathy.  A person with an autism spectrum disorder lacks empathy but may have sympathy in other situations where they can perceive another’s distress.  When they do understand, they respond.’

The difference is subtle but important.  Someone with ASD may not always completely understand (empathy), but that doesn’t mean they’re incapable of caring (sympathy).

In the aftermath of Sandy Hook much has been written on the topic of autism and violence. Science writer and autism mum, Emily Willingham, also addressed the empathy issue, differentiating between cognitive (reading people) and emotional (feeling the emotion) empathy, noting that people with Asperger’s ‘aren’t great’ at the former but are unimpaired in the latter, the reverse pattern to the one we observe in psychopaths.   I suspect Willingham and Lorna Wing are probably talking about the same thing, just using different terminology.

All this fits with my experience, not only with my son but with my friends’ children. In fact, one of the words parents frequently use to describe their child on the autism spectrum is ‘kind.’

It’s true that people with autism are occasionally violent  They can lash out physically when overwhelmed, frustrated and anxious; without good communication skills they often have trouble expressing their frustration in more appropriate ways. But the evidence is clear that people on the autism spectrum are no more likely to commit violent crime than those without autism; instead they are much more likely to be victims of violence.

Interestingly, in the above-mentioned article, Wing refers to British research which found that psychopathy and ASD can very occasionally occur in the same individual; however researchers found that ‘callous/psychopathic acts…probably reflect a “double hit” involving an additional impairment of empathic response…which is not part and parcel of ASD itself [emphasis my own].’

Does this explain Adam Lanza? Only the psychiatrist who diagnosed him has any proper understanding of the young man’s mind and until he or she speaks I suppose we’re all just engaging in speculation. Adam Lanza may well have had Asperger’s but I’ll go out a limb and say it’s pretty clear he also had something else, whether a personality disorder, an as-yet undiagnosed psychosis or some other form of mental illness that tipped his behaviour over into the unimaginable.

In the meantime, the media needs to report the facts responsibly so that vulnerable groups aren’t stigmatised by association. The real problem here is that a seriously disturbed young man had an arsenal of legally-acquired assault weapons, ready and waiting for when that tipping point came.

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Help with going to the dentists

November 30, 2012

I took Joe to the dentists this morning for his 6-month check-up. Realising he’d require a really good clean, I primed him up: ‘Let the dentist clean your teeth with the buzzy thing and you’ll get a new toy when you get home from school this afternoon.’ It did the trick — Joe’s pearly whites [...]

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Book review — ‘My Life in a Pea Soup’ by Lisa Nops

November 12, 2012

There’s an essay that’s probably familiar to many parents of special needs children, called ‘Welcome to Holland’ by Emily Perl Kingsley.  It likens the experience of raising a disabled child to booking a holiday in Italy, but somehow ending up in Holland by mistake.  At first the parent is resentful—while they’re stuck smelling the tulips, [...]

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The media reporting of science – reflections on ‘The Autism Enigma’

September 10, 2012

A recent analysis found that scientific journal articles on autism increased a staggering twelve-fold in the years 1980–2010, with a particular spike from 2005.  No wonder I feel exhausted trying to keep track. I’m currently hard at work on the second edition of the Australian Autism Handbook. It’s only five years since I sat at [...]

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Autism, working memory and Cogmed Working Memory Training™

July 19, 2012

I don’t know if many people saw the recent article in Time Healthland, reporting on a study of eight child prodigies: kids who displayed amazing virtuosity at music, maths or art from an early age.   Here’s a taster: The authors found that prodigies scored high in autistic traits, most notably in their ferocious attention to [...]

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Living with Max by Chloe Maxwell-a book review

June 24, 2012

My first encounter with autism, or at least the first encounter I was conscious of, was twenty years ago. It was at a family gathering to celebrate my engagement to James, hosted by my cousin and bridesmaid, Pippa, at her house in Bondi. I was sipping champagne in the backyard, decked out in  my Sunday [...]

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Let me tell you about the birds and the bees—Special Boys’ Business book review.

May 21, 2012

The Saturday before last I caught the bus to the city with Joe to go to Paddy’s Markets (his favourite and my least favourite place in the world).  We went with the express purpose of visiting the stalls which sell Super Mario Bros plastic crap…I mean toys— his reward for completing Cogmed (which, incidentally he [...]

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April 28, 2012

I was in touch with the blogger Silly Mummy recently.  Like me she has a son with autism spectrum disorder and used to work in TV. Silly Mummy was an outside broadcast producer/director, something I never did. I did some single camera directing and editing of short items, but mainly lots of producing. Anyway, when my [...]

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Important announcement from the Australian Autism Handbook

April 13, 2012

First the good news, then some not-so-good news, then some more good news to finish. The autism world has changed a great deal since the first edition of the Australian Autism Handbook was published in May 2008.  Locally, we’ve had greater awareness and some long-overdue federal funding through the Helping Children with Autism package, overseas [...]

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