Finding Asperger Land - Our Journey

When the Australian Government announced their $190 million Helping Children With Autism (HCWA) initiative in June 2008, our hopes were high.  At last, the challenges faced by families affected by an Autism Spectrum Disorder (ASD) were to be recognised.   This impacts more people than you’d expect - a recent UK study has shown prevalence rates are closer to 1 in 100, rather than the 1 in 160 people previously thought to be affected.

However, most of the HCWA assistance is focussed on early intervention services for children aged 0-6.  Up to $12,000 is available to help these children and their families.  This is great, and obviously essential.  But, for those children too old to access this funding, the remaining options require detective skills and a degree in quantum physics to navigate. 

Given the usual age of diagnosis for Aspergers Syndrome is at least 7 years of age, these children miss out on the bulk of the Government's Autism funding.  Tellingly, it is when these kids start school that their differences and difficulties with social contexts becomes most apparent.

Our path to diagnosis for our son was almost comical in hindsight.  We certainly came the long way round, and made costly mistakes as a result.  As the victim of ongoing playground bullying in prep, we asked the school psychologist for help.  Month-long waits between very brief appointments motivated us to seek help from a private psychologist specialising in bullying.  Her assertive style of communication made him more timid, and  after a few visits, he was reluctant to go.  We read her book, and tried to bolster his social skills ourselves.

Concerned by his lack of engagement in class, our son’s grade one teacher asked us to see an audiologist.  Verdict - significant auditory processing problems.  We read literature on short term memory functioning and auditory processing, and tried to change the way we communicated with him.

When that didn’t help much, and his isolation and classroom disengagement grew, we took him to another psychologist for counselling and assertiveness skills training.  We spent thousands of dollars and countless hours on assessments, tests, and anti-bullying coaching.  Unfortunately, none of the professionals we saw specialised in ASD, and we didn’t know enough to be asking the right questions.

At my request, this last psychologist tested him for Aspergers Syndrome (AS), using the CARS test.  At the time we thought it was testing for AS, but we later found out that CARS stands for Childhood Autism Rating Scale, and is not a test for AS.  At the time, she said the results were inconclusive.  We talked about how all of us have some Aspergian traits, and that our son did seem to have a lot of them.  But she felt that many of his issues were caused by his very high - yet uneven - intelligence, and a resultant inability to relate to his peers. 

The focus of our 10 sessions was very much on communication and how to protect him from the bullying behaviour of others.  Walking us out to the car after our final session, she said it wouldn’t hurt to read Tony Attwood’s The Complete Guide to Asperger’s Syndrome, and that things would probably never work out at his current school.  So we focussed on finding the right school for our highly sensitive, clever but odd little boy, while researching more into AS.  We held on tight to the psychologist’s words that while he had some traits, he did NOT have AS. 

A new school, new hopes, and first term’s honeymoon soon came crashing down when his Grade 4 teacher asked us to apply for an integration aide.  He was completely adrift in the classroom still, even though she was experienced in teaching children with AS.  In order to apply for funding, the school needed a diagnosis.  Autism Victoria put me in touch with a psychologist specialising in ASD, and finally (and another $600 later), we received confirmation that he did indeed have AS.  He was nine years old.   We still didn’t get funding for an integration aide, as he was deemed to be ‘coping sufficiently’.   I joined Autism Victoria, and read many more texts.

After a particularly harrowing period of bullying when he was 10, I rang the Aspergers Syndrome Support Network (ASSN) help-line for advice.  There, I learnt about avenues of help I never knew existed.  That same day I asked my GP for a referral to a paediatrician, and the world of rebates and funded support for allied health professionals opened up before us. 

If I knew then what I know now, I would have taken a very different route to getting my son the help he needs.  I try not to regret the four years it took us to reach - and come to terms with - his diagnosis, and the number of professionals it took to diagnose him.  We are here now, and we are doing the best we can. 

Previously published in ASSN Victoria's Spring 2009 Update