The Autism Avalanche

A Melbourne paediatrician told me today that 70% of her clients present with an autism spectrum condition, including autistic disorder, Asperger Syndrome and PDD-NOS.  She makes new diagnoses of ASC at least 2-3 times a day.  Where are they coming from?  Why the avalanche of new cases now, and what effect will the DSM5 have?

According to a report released last month by the US Government's Centers for Disease Control and Prevention (CDC) up to 1 in every 88 children has an autism spectrum condition.  This prevalence has increased by 78% since 2000, from 1 in every 150 children.  

Why such an increase?  The jury is still out, but it could be largely because of increased awareness - that is parents teachers and health care professionals are more aware of what to look for, and are referring ever younger children to professionals for diagnosis.

Of course, scientists the world over are examining a number of potential environmental and genetic reasons for the increase, and deserve more funding to continue their important work.

The Big Issue with DSM 5

On February 18th 2012 Asperger Syndrome Support Network Victoria (ASSN) hosted a party to celebrate 21 years of providing support and information services to the Victorian Asperger community.  International Aspergers Day was chosen to honour Dr Hans Asperger's birthday, the Austrian paediatrician who first described the syndrome in 1944.  

ASSN Vic patron, clinical psychologist and ASD specialist Dr Richard Eisenmajer gave a brief talk on the history of Asperger Syndrome, and likely changes the new version of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) will bring.  Due for release in May 2013 DSM 5 is expected to subsume Asperger's Disorder within the Autism Spectrum, meaning it will no longer exist as a diagnosis in its own right.  Instead a person who would currently be diagnosed as having Asperger Syndrome will receive a diagnosis of 'Autism Spectrum Disorder, Asperger type' with a rating of mild, moderate or severe.  

An recent article at USA Today News discusses various viewpoints on what this change will bring - here

The American Psychiatric Society has responded to recent criticism and explained their aims regarding Aspergers and autism via their latest news release:

The Work Group has proposed that autism, Asperger‘s disorder, pervasive developmental disorder (not otherwise specified) and childhood disintegrative disorder be consolidated within the overarching category of ASD. The change signals how symptoms of these disorders represent a continuum from mild to severe, rather than being distinct disorders. The new category is expected to help clinicians more accurately diagnose people with relevant symptoms and behaviors by recognizing the differences from person to person, instead of providing general labels that tend not to be consistently applied across different clinics and centers.

Developing more useful diagnostic criteria for clinicians and individuals with ASD has been the core objective of the Work Group‘s efforts. For example, the proposed measures indicate increased sensitivity in regard to age of onset. DSM-IV requires functioning delays to be present prior to age 3; DSM-5 criteria would extend this until ―social demands exceed limited capacities,‖ as long as symptoms were present in early childhood. Despite what some critics have suggested, the issue of containing autism rates was not considered by the Work Group, nor was it a factor in revising the criteria.

 To read the full article, click here

Definition of Asperger Syndrome set to change

In case you've not been following this issue, here's a quick link to the latest New York Times article on how the removal of Asperger Syndrome as a separate diagnosis to autism spectrum disorders is expected to affect our community.  While this is an American article discussing American issues, it will affect us here in Australia as the American Psychiatric Association Diagnostic and Statistics Manual, DSM, is the main tool used by Australian helath professionals to diagnose Asperger Syndrome and autism.

If you'd like to read about the proposed changes to the DSM V in detail, click here to go to the American Psychiatric Association's own website pages discussing the rationale behind the proposed change.


Behavioural Intervention Therapies really do work

Scientific research has finally confirmed what parents and practitioners already know - behavioural intervention therapies really do work with children and adolescents on the autism spectrum.  As reported by Autism Speaks in their latest newsletter, five types of behavioural therapies were covered:

  1. early intensive behavioural intervention of 25+ hours per week for 2 years or more
  2. briefer, targeted behavioural intervention for 6 months
  3. parent delivered early interventions
  4. group social skills programs for teens
  5. cognitive behavioural therapy for anxiety and aggression

To read more about this, click here to go to Autism Speaks Science News page or here to go to the orignal report in December 2011 issue of Current Opinion in Pediatrics


A Spirit of Certainty

Talking to my 13 year old son a while back about the joys of travel, I discovered a fundamental divide in our attitudes.  After rabitting on about the wonders of new places and faces, beautiful landscapes, ancient cities and exotic food, I proclaimed, in my best cliched form, that successful travel required a spirit of adventure.

To which my wise one replied, "A spirit of adventure?  Yuck!  I much prefer to have a spirit of certainty."

Well, you can't argue with that.

In my Hidden Diffability chapter on travel, I cover some road-tested ways in which you can ensure your travels work for ALL members of the family.

If you have any suggestions of your own, I'd love to hear them.  Use the comment button just below, or email me.

Happy wanderings!

Tis Done!

Well, only a few months behind (my self imposed) schedule, but what a great feeling!

Yesterday I delivered my completed Hidden Diffability manuscript to my writing tutor/mentor/friend Hazel Edwards for a full manuscript assessment.  All 174,000 words of it.  That'll make about 580 pages in printed form.

I'm sure parts will need re-drafting, but I'm hoping to get it to market in e-book form over the next 2-3 months.  Traditional print publishing options are also being investigated.  Watch this space.

To the 15 families who shared their story with me, I give my most heartfelt thanks.  Your courage and generosity will be of enormous benefit, comfort and solace to the many families following in your footsteps, and I'm sure the wisdom you are sharing through this book will help them progress faster and with less heart ache along the way.

To the members of our First Friday Parents & Carers Support Group at ASSN Vic, I also offer you my thanks, for sharing your tips and strategies, for supporting each other and celebrating together, and for bearing with me as I've rabbited on about my ideas!

To my family and friends who have helped, and are still helping, in so many practical ways after my spinal fracture in January, and then Aidan's bilateral foot/ankle correction surgery in September, what can I say?  Thank you is nowhere near enough.  While this year has been harder than I could ever have imagined, the blessings of true friendship, courage and inspiration have helped sustain us all.  I am forever indebted.



"normal" is a cycle on your washing machine

I just had to share this quote with you!  

It's from Nelle Francis, Australian author, blogger and parent of a child with Asperger Syndrome.  You can read more about her titles at  She also produces a regular email newsletter which you can subscribe to from her website.

I'm still under house arrest, as my spinal fracture is taking the full 12 weeks to heal, not the six I was originally hoping for.  The immobilisation sure makes parenting a more interesting challenge than usual!  And my Hidden Diff ability book is still struggling along.  Once I can sit at my desk for longer periods I will be giving it my full attention.

As usual, see the latest news for seminars, events and AS friendly products at our ASSN website,


Up to Date Information about AS

Hi everyone,

sorry I've been away so long.  Building and maintaining the ASSN Vic. website over the last year has been a lot more involving (and rewarding) than I'd expected, so my book still isn't finished yet.  And then nearly three weeks ago I went and injured myself - a fractured sacrum no less.  So I'm under house / bed arrest for 6 weeks, and relying on a wonderful team of family and friends to help with the children and chores.  

If you're looking for current information about courses, seminars, books, support groups, or frequently asked questions about living with Aspergers Syndrome, please go to the ASSN Vic website at

Just One More Interview

Hidden Diffability - the book - needs your help.  The interview process has been going really well, and I now need to conduct just one more interview.  

If you are a young adult and have a diagnosis of Asperger Syndrome, I would love to spend an hour or two talking with you about your life experiences.  This can be done in person in the greater Melbourne area, via phone or email.  Just click on the Email Me button on the left if you have any questions.

As for all previous participants, your privacy and confidentiality is assured.  Pseudonyms will be used and no individuals, schools or organisations will be identified.  

Here's your chance to help the Asperger community, and the wider community, gain a little insight and understanding into the wonderful ways of the Aspergian mind.  

Here's your chance to add to the Australian knowledge base for Asperger Syndrome.

Here's your chance to tell your story.  

How Big Is The AS Community?

How many people with Asperger Syndrome do you think there are in Victoria, in Australia, or indeed in the world?  It's a question that's been niggling away at me of late, as I've been working on the website for the ASSN Victoria.  Studies show the prevalence of autism spectrum disorders amongst children to be in the order of 1 in 166, to as many as 1 in 90.  

But this does not differentiate between the degrees of autism.  Studies showing prevalence rates of Asperger Syndrome are much harder to find (and if you do find one in your travels, please let me know).  

Speaking with a psychologist who specialises in autism spectrum recently, she confirmed that of the studies she knew of, 70% of study participants had an IQ level of  70 or below, and would thus qualify as having an intellectual disability.  

By definition Aspergers (and High Functioning Autism) requires an IQ of normal or above, which means 30% of those study participants have HFA or AS.  If we extrapolate this out, using Australia's population of 22 million (according to the Australia Bureau of Statistics) we get the following:

If 1 in 166 people have an autism spectrum disorder, and 30% have no intellectual disability, we could be looking at a High Functioning Autism and/or Aspergers population of just under 40,000 in Australia, and 10,000 in Victoria.  If you take the less conservative estimate of 1 in 90 people, that number grows to over 73,000 Aspies in Australia, with over 18,000 living in Victoria.

That's quite a community we've got here.

I'd love to hear your thoughts on what we should be doing with this information.

New Scientist on the Advantages of Autism

New Scientist Magazine has published an article on research into the advantages of having autism.  Creating quite a stir in the autism community is Canadian researcher Michelle Dawson, who has autism herself.  Read the comments at the end of the article to see some diverse reactions.

Go to  to see the full article.

New Website for ASSN Vic

Over the last two months I've been co-ordinating the development of a new website for the Asperger Syndrome Support Network of Victoria, and writing much of the new content therein.  You can read about Aspergers, how to get and share a diagnosis, find out about support groups, social skills classes, seminars, frequently asked questions and much more at

Now that the ASSN Vic site is up and running, I plan to get back to creating more interesting articles for you here.


Inside the Asperger Brain

Dan Coulter, author and DVD producer, has written a great new article about the physiological differences of the Aspie brain.  I hope it aids your understanding of this fascinating area.  Enjoy.


By Dan Coulter

   How does your brain work?

   If you’re like most of us, you haven’t got a clue.  Brain scientists have a clue, but that’s about all they have.  In the grand scheme of things, we only have the basics figured out.  We still have a lot to learn about the more complex aspects of the human brain.

   I’m interested in how Asperger Syndrome, a high functioning form of autism, makes my brain work differently than someone who doesn’t have Asperger Syndrome.  I saw a scan of Temple Grandin’s brain in one of her online lectures.  Ms. Grandin, who also has Asperger Syndrome, wrote a book called, "Thinking in Pictures and Other Reports from my Life with Autism."  The brain scan she displayed supported the title of that book.  It showed that she had dramatically wider pathways in her brain to process graphic images than could be seen in a typical sex and age-matched control brain.

    Here was evidence that Asperger Syndrome and autism are associated with physical differences in brains, but it’s a very coarse glimpse at something I want to see and understand in exquisite detail.  I want a "Star Trek" brain scan.  One that shows not just how one Asperger brain is different from the norm, but also how Asperger brains differ from each other -- and why.  Maybe in ten or 100 years, we’ll be able to see a lot more.

   In the meantime, there’s a lot of observational evidence that our brains work differently.  This explains why we can be so good at some things and so "not good" at others.  I saw a report on CNN today about intelligence tests.  One part of the report said that IQ tests only measure 25 percent of what it takes to be successful. Boy, did that ring a bell.

   It really helped me understand part of my career in corporate America. Early in corporate life, I was confused that managers who were levels above me didn’t see some of the solutions that I saw.  I just figured I didn’t really understand the issues.  They were my "superiors." They must know best.  Turns out that, frequently, they didn’t.  As I look back, I see now that there were meetings at which I could have been the smartest person in the room and didn’t speak up.  That’s because, in some of those same meetings, I was probably also the most clueless person in the room.

   It was the way my brain functioned. It didn’t work in my favor to have innovative ideas if I didn’t have the social intelligence to suggest them in politically savvy ways.  In hindsight, it was probably best that I kept my mouth shut and observed instead of pointing out what seemed obvious to me.  I just applied my ideas to my work.  I came to understand that there are different ways to be smart.  Three people can be the smartest person in the room in different areas.  It usually takes a combination of smarts to be successful.

   After about a year, I’d gained enough corporate social smarts to make suggestions diplomatically to executives with very healthy egos.  I found that social skills were as important as good ideas in helping me move up the corporate ladder.  I’m not talking about broad social skills.  I’m talking about interpreting facial expressions, reading subtle body language and understanding motives and hidden agendas.

   As frustrating as it was to have to take the time to learn these skills, it’s a bit of a relief now to understand there was no short-cut.  I had to rewire my brain.

   I saw another online lecture by Harvard-trained neuroanatomist Dr. Jill Bolte Taylor.  This brain scientist had the good fortune, and rotten luck, to observe a stroke from the inside out. She suffered a brain hemorrhage in 1996.  It was fascinating to hear her walk through her recollections step-by-step.  She explained that the hemorrhage occurred in the left side of her brain, where, among other things, we plan for the future.  So while the right hemisphere of her brain was thinking it was cool for a brain scientist to experience a stroke first hand, messages from the left side of her brain were sporadically getting through and screaming at her to get help.  Eventually, she was able to phone a colleague and get rushed to a hospital.

   Calling for help just wasn’t a priority for her when her left-brain signals were partially blocked.  It made me think of how frustrated we get with our children who have Asperger Syndrome when they don’t show an interest in keeping calendars and planning ahead.

    I am not saying that having Asperger Syndrome is like having a stroke.

   I am saying that if your brain is wired to focus on what’s in front of you and has fewer "preparing and planning" connections, it’s not a simple thing to rewire your brain to routinely think ahead. The ability to plan and organize is also known as "executive function."  Not all of us are born executives.

   The good news is, most of us can rewire our brains to some extent.  The CNN story about intelligence noted that, "A mental exercise can help raise your IQ score by about five points in a relatively short amount of time: 30 minutes a day, five times a week, for about a month."  The story went on to say it’s a significant finding that adult brains can change, and that an increase of a few IQ points could change your life.

   If you have Asperger Syndrome, it’s easy to beat yourself up for your deficits in light of your abilities.  Understanding that’s the way your brain works is tremendously helpful.  It’s also helpful to set realistic goals and work to improve your executive function, social, or other skills. And being open about both your strengths and challenges can help you enlist your teachers, classmates, bosses, and coworkers to be patient, supportive and helpful.

   Afraid they’ll look down on you? In my experience, they’re more likely to respect you for being straight with them.  Especially if that gives you the opportunity to use your abilities to excel.  I recently interviewed a number of highly productive employees with Asperger Syndrome. Some are even more productive than coworkers with typical brains in the same jobs.  Their coworkers accept and respect them.

   Ultimately, succeeding with Asperger Syndrome comes down to doing something parents and teachers have been telling us forever.

   "Use your brain."


   ABOUT THE AUTHOR -- Dan Coulter is the producer of ten DVDs about Asperger Syndrome and autism, including "Manners for the Real World: Basic Social Skills" and "Asperger Syndrome at Work."  You can find more articles on his

Copyright 2010 Dan Coulter      All Rights Reserved.       Used by Permission.

A Teacher's Perspective

Model Me Kids, makers of social skills training videos, have posted a 9 minute documentary on YouTube, featuring an American teacher working with 12-14 year old kids with high functioning autism at the Kennedy Krieger Institute in Baltimore.

It's a very heartwarming display of the difference a great teacher can make to the self esteem of the kids in their care.  Click here to view the YouTube clip.

Model Me Kids make videos for children anywhere on the autism spectrum aged from 2 to 17.    Click here to go to their website.  

International Aspergers Day

Happy Birthday Hans Asperger!  February 18th is international Aspergers Day, in honour of the Austrian paediatrician who first identified the group of traits that became known as Aspergers Syndrome.  

Australia's own Asperger Services organisation, previously known as Aspergers Syndrome Support Network QLD Inc, began the tradition of celebrating Hans Asperger's birth annually, after the Asperger Adults of Greater Washington created the International Year of Aspergers in 2006, marking the centenary since Hans Asperger's birth in 1906.

As societal knowledge and understanding of the Aspies among us grows, here's hoping this event becomes more widely celebrated.


Diagnosis of the Month?

Why are so many people being diagnosed with Aspergers Syndrome these days?

ABC Local Radio 774's Lindy Burns posed this question to Dr Cheryl Dissanayake, Director of the Olga Tennison Autism Research Centre (OTARC) at La Trobe University, on Monday 15th February 2010.

Dr Dissanayake spoke about the changes in definition of ASD, and increased understanding and awareness of what the spectrum contains, as being possible factors in the increased rate of diagnosis.  She also discussed the fine grey line between the diagnoses of high functioning autism and Aspergers Syndrome.  She feels strongly that it is not being over-diagnosed, rather that their research is showing 1 in 100 individuals are affected by the condition.  

Another theory for the increasing rate of diagnosis I'd like to put forward is the dramatic change in the way we structure the provision of education to our children.   In generations past, classrooms tended to be quiet and well ordered places, where front-facing rows of children sat mostly in silence, receiving instruction from their teacher.  Copying from the blackboard, rote learning, silent reading, and obedience were highly valued.  Social skills were required in the playground, but not as much in the classroom. 

Contrast to today, where classrooms are busy, noisy places were active group-based learning is prized. Children are sat around tables facing each other, eye contact is expected frequently, and advanced social skills are required in order to 'work together on inquiry based topics'.  The Aspie child is easily overwhelmed by the requirement to deal with a multitude of personalities and expectations, in a noisy and at times chaotic environment.  Instructions are given verbally, and creativity-based mini-tasks follow one another other quickly.  For a child who needs written or visual instructions, and time to process them, it can all get too much.  

The response?  An internal shutdown, with mental withdrawal to a calmer place, or an aggressive outburst to the child or request that 'pushes them over the edge'.

Does any of this fit with your own, or your child's experiences?  

To hear the ABC Radio interview with Dr Cheryl Dissanayake, click here

Solving Sleeping Problems

Does your Aspie have trouble settling down to sleep, or staying asleep overnight?  If so, you might want to ask your GP or paediatrician about Melatonin, a naturally occurring hormone produced in the pineal gland in the brain. Most people produce sufficient quantities to ensure regular sleeping patterns.  

Melatonin works as part of the body's sleep-wake cycle, and is affected by light.  As the day fades, and darkness increases, the body naturally increases melatonin levels, causing drowsiness and lowering body temperature.  Exposure to light, particularly up close, inhibits this process, which is why you should turn off the PC well before bedtime!

Some studies are showing that individuals on the autism spectrum may not produce enough of this "hormone of darkness", thus resulting in poor sleep habits.  Unfortunately there is no blood test for this at present, so a trial approach is required.  If abnormally low levels of Melatonin are NOT the problem, you will quickly be able to tell.  If they are, then you should see an immediate improvement.

While available over-the-counter in the US & Canada, in Australia & UK you will need a prescription.  While some Australian health funds may provide rebates for it on top cover, there are no Medicare rebates.

Make a note to ask your doctor next time - it could be worth a discussion, at least.