When Sean Tobin and his wife Alison took their son Oliver to a doctor to try to figure out why he wasn’t talking, they were told, “Don’t worry, he’ll be OK.”
“We could see him regressing very quickly,” Mr Tobin said in The Australian Autism Handbook (second edition). “We went to all the doctors and all the specialists and they said he might just be a late developer.”
Sure that it wasn’t just a development issue, the Tobins continued their search for answers.
“Finally you get in front of a paediatrician who says ‘Yes, I think it’s Asperger’s or autism’. You go through the assessment and get the diagnosis. Then you go back to the paediatrician, who says, ‘Yeah, I was right’,” Mr Tobin said.
“And you shake hands, pay the bill … and good luck.”
What happened to Oliver happens to an estimated one in 100 children in Australia. Diagnosis rates of autism are increasing – so much so that the latest American research found that one in 54 boys is on the autism spectrum.
“Autism doesn’t announce itself in the delivery room,” the expression goes. Like any other, the parent of a child with autism celebrates the arrival of an apparently healthy baby, and starts to make the usual plans and dreams for their future.
But then slowly, ever so slowly, the realisation strikes them that something is just not right. It can be unspeakably hard to face up to this to let go of those cherished hopes and dreams, but it’s necessary if their child is going to receive the help they need.
In the first year of a baby’s life there are usually no obvious pointers to autism. It’s at about 15–18 months that most parents start worrying, usually because speech isn’t developing. But researchers have discovered that subtle social deficits are often present much earlier. A typical one-year-old will be able to follow their parents’ gaze or point (for example, if their parent shows them an aeroplane in the sky), and will show enjoyment in a toy by looking back and forth between it and the person who gave it to them. In a young child with autism, these behaviours are often missing or at least reduced.
Autism spectrum disorder (ASD) is strongly genetic. We know this because families with one child on the autism spectrum have a high chance (almost 20 per cent, according to a recent study) of having another child with ASD.
Indeed, the Tobins’ daughter, Tayla, also has autism spectrum disorder.
Twin studies also point to a genetic factor; when one of a pair of identical twins - who have the same genetic makeup - is affected by autism, the other has a high chance of developing ASD (77 per cent of identical male twins in a recent large study). With fraternal twins (who don’t share the same DNA) the risk is less, but both will have ASD in up to 35 per cent of cases.
Other factors, such as prematurity or low-birth weight, or infections and fever during pregnancy, seem to also slightly increase the risk of a child developing autism. What we do know is that autism is never caused by bad parenting.
While we do not yet have the knowledge to prevent autism, improved research around treatment has given parents who are quick to recognise the symptoms a better guide to act accordingly. Recent research suggests that behavioural and social interventions, when commenced early, can dramatically reduce symptoms in many children, even ‘rewiring’ the brains of these children so they more closely resemble that of a typical child.
With federal funding, which has been in place since 2008, we now have a rating system for approved therapies. Yet parents still have to make a judgement based on the evidence, available feedback from professionals and other parents, their own personal philosophies and – regrettably – availability and economics; even with government support some interventions can be difficult to access and extremely expensive.
The red flags: what to look for
If any of these signs are apparent in your child, it is recommended you get a referral from your doctor for a diagnostic assessment.
1. Lack of babbling, pointing or other gestures, such as waving, by 12 months.
2. No sharing of interest in objects or activities with another person.
3. No single words 16 months, or no two-word phrases (that are not echoed) by 24 months.
4. Loss of language or social skills at any age.
5. Not turning when his or her name is called.
6. Lack of appropriate eye gaze.
The Australian Autism Handbook contains a detailed resources section which helps parents navigate their way through diagnosis, funding, therapies, service providers, school choices, support groups and respite care. It's available now. (Jane Curry Publishing, $40.)