When parents walk out of the building in which their child was just diagnosed with autism they have a million things racing through their minds. How did this happen? What did I do wrong? How can I fix this?
Slowly the realisation creeps over them that the answers to those questions are: It just did; you didn’t do anything wrong; and you can’t fix it.
They spend night after night trawling the internet for a cure, only to find there isn’t one.
And when reality sets in, they start doing what is best for their child: getting them in to an early intervention program.
When people ask Kathryn Wicks why she helped write the Australian Autism Handbook, which is launched today, that is why. Because on 29th February 2008, she was that mother.
‘’My battle with autism – and let’s not pretend it is anything other than a battle – began almost a year earlier, when I feared there was something wrong with my son Darcy,’’ she said.
‘’He wasn’t responding like his brother had done. He didn’t say much – he didn’t say ‘mum’. He didn’t look when you called his name. I gave him a few more months but nothing changed. I knew what it was. I didn’t need a piece of paper.’’
But that was when she needed help.
How on earth do you decide what to do when you barely know what autism is? It isn’t taught in school. It’s not in the baby books.
‘’It is the greatest ‘WTF’ moment there is,’’ she says.
Wicks says she “lucked upon” the right people. But that doesn’t happen to everyone.
‘’If I could stop just one mother having that ‘WTF moment’, or one mother blaming herself or wasting time trying to find a cure, then I will have done what I set out to achieve. To pay back for the help I was given. I wanted to take the stress out of answering the ‘What do I do now’ question. And this book does that spectacularly.’’
Darcy did well in early intervention and went on to mainstream school. But early intensive behavioural intervention for 20 hours a week, as the federal government recommends as world best practice, isn’t funded to that level. In fact, before 2008, there was no funding at all.
It took Wicks six months of occupational therapists, speech therapists, paediatricians and GPs to even get a referral for diagnosis for he son. She said they would say things like “You’re comparing him to a very bright boy’’ and ‘’some boys don’t speak until they are three’’.
Dismissal of parents’ concerns by some medical professionals happens, and it is not a new phenomenon.
A decade ago rugby league coach Ricky Stuart and his wife Kaylie also did the rounds with professionals when his daughter, Emma, was little. But Emma did not receive a diagnosis until she was 12, missing out on vital early intervention.
Kristen Callow took her daughter to the US to get an Asperger’s diagnosis, yet at home in Sydney, Kristen got a lot of dismissal of her concerns about her daughter Juliet. The fact Juliet was gifted – she could read at two – proved a hindrance. Her diagnosis at three was early enough for Juliet to get into early intervention and now she is thriving.
It’s like any other condition: if the mother thinks there is something wrong, there probably is.
And this is where the problems can start for families: mothers respond as if preparing for war focusing entirely on the child; and dads just don’t know what to do.
Says Mick Heaney, who counsels dads in Queensland: “Dads go away to work every day but mums tend to go into the playground a drop the kids off and they know about every ailment and condition a child can have. Dads know none of that. They are totally out of their depth with this.”
Heaney is an engineer whose 14-year-old daughter has ASD. He speaks to a group of dads annually at the AEIOU Foundation conference. He starts by handing them a beer.
“I had never been presented with something I couldn’t fix,’’ he tells the room. “I’ve always found a logical way to fix anything. With autism it was the first time I came up against a barrier. And all the guys in the room nod. When they see a room full of people in the same boat they have a collective confidence to act. You can actually emerge at the other end happy.”
Stuart’s advice in the handbook is also worth noting: ‘’Do everything you possibly can to ensure your other children are getting a decent crack at their own lives as well. That’s really something that we work hard on.’’
For siblings of children with autism it can be baffling and isolating; and it affects their friendships. Says Darcy’s brother John: ‘’Sometimes my friends say ’I feel sorry for you’. That makes me a bit sad, it’s a bit of an insult.’’
Siblings Australia cautions: “Siblings can often be overlooked, which can lead to feelings of isolation. If this continues, children can become vulnerable to a range of emotional and mental health problems. However, if siblings are acknowledged, and connected to sources of support, they are likely to become more resilient.”
And that is fairly handy, because the child with autism continues to grow at the normal rate while their behaviour can continue, in some cases, to resemble that of a two-year-old.
In high school, that often leads to bullying. Children and teens with autism are frequent targets of bullying. A recent US study found that about 46% of teens with ASDs told their parents they’d been bullied or picked on at school, or on the way to or from school, within the previous year, compared with just over 10% of children in the general population. It is the thing that often frightens parents the most as they pack their children with autism off to high school.
Joel Tippett started high school in Strahan in western Tasmania but would dread the daily wait at the bus stop and hour-long ride to school.
“He was petrified of the kids at the bus stop and on the bus,” says his mother, Anna Crocker. “They picked on him and called him stupid. He suffered that a lot through the years, being called names and being picked on.”
Joel left school and participated in distance education. It was the most successful period of his schooling, Anna said.
The Red Flags
If any of these signs are apparent in your child, it is recommended you get a referral from your GP 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.
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The Australian Autism Handbook by Benison O’Reilly and Kathryn Wicks, features large amounts of practical information interspersed with parents’ stories. One-quarter of the book is dedicated to resources: every website and phone number parents need from getting a diagnosis, accessing funding, finding providers to looking after themselves. Every approved service provider In Australia, their therapy and phone number is listed. The iBook version contains hotlinks for further reading.
- Print book at Booktopia or Dymocks RRP $39.95
- iBook at iBooks $22.95:
- Publisher: Jane Curry
You can contribute to raising community awareness about autism by donating to Autism Awareness.
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