I have always been a great communicator. Sometimes excessively so.
My first report card – in kindy - said “Josie talks too much.” I am known to like a good chat.
I even studied “Communications” at uni and my job demands constant interaction with people.
Social networking sites were made for me: Facebook and Twitter are my daily friends. So when I heard about a “Communication Shutdown” day on November 1 – a chance for silence online for 24 hours – I was intrigued. I read about the cause and then – well, I was completely in.
You see, the special day is designed to raise awareness for autism. And as my son was recently diagnosed with autism spectrum disorder, I knew it was not only a chance to support a cause I believe in, it was the opportunity for me to tell the world what’s happening with my son – it would only benefit us both by demystifying what autism is and widening my support network.
My son Rafael is a twin. He and his sister Estella will celebrate their third birthday this December. But I knew something was up before he turned two.
He said “mamma” plenty before he was one, and then, he just stopped talking. His sister was doing all the usual chatty stuff, but Rafael - not interested. When I got the diagnosis for Rafael, I cried.
My tears were all about the fear of the unknown and the thoughts I had surrounding his future – would he go to a “normal” school, would he be bullied – and overwhelmingly, the sadness tapped into my intense guilt. This was mother guilt, amplified by ten.
Ever since the twins were just newborns, I have always worked from home, timing my work around naptimes. In awake times, we play, paint, Plasticine, read, run, try to break stuff (them, not me) and yes, sometimes I will answer emails, finish a story, and whack on a Brainy Baby DVD or Hi-5 to help calm and entertain the rambunctious twosome.
As soon as I got the diagnosis, I wasted no time in blaming myself. Perhaps I hadn’t spent enough time with him, I thought. This self reproach consumed me, in the midst of my daily work and marriage and life. Deep in my heart, I knew this was untrue: we have structured playtimes and outdoor play and random, spontaneous play.
We’ve been going to playgroups since before they were two and my husband has always been heavily involved in parenting and fun interaction.
I didn’t cry for long; it was off to a special, weekly playgroup held by the amazingly dedicated people at Learning Links, weekly speech therapy, a dedicated teacher at daycare, local council “speechie” fortnightly sessions, and continuing the reading and playtime in earnest.
Rafael was – and is – making incredible progress. Me, not so much.
I cried again – right there in the bookstore in front of the shop assistant – when I finally read in The Australian Autism Handbook that my son’s diagnosis was unequivocally not “my fault”.
If you are not a parent (and even if you are) you may think this whole thought process – how it affects me – incredibly selfish. But if you are a mother, always seeking ways to develop your child’s brain and helping reach their milestones, knowing that you did, and continue to do, the best you can in your child’s crucial first years, it is somehow reassuring. It is what it is.
We’ve come a long way in understanding autism since Temple Grandin – the woman characterised by actress Claire Danes in the 2010 telemovie - was diagnosed as a child with autism at age four.
Temple’s doctor referred to her as “infantile schizophrenic” and recommended institutionalistion, telling her mother she would never speak. Temple went on to become a doctor of animal science and a university professor, bestselling author, and consultant to the livestock industry on animal behavior.
According to Dr James Morton, the founder of Communication Shutdown, there is still much work to do on preconceived ideas on autism.
“The world is certainly more aware of autism; however, in terms of providing support services to children and adults with this condition, and their families, there is still a long way to go.”
According to Dr Morton, the first step towards for children with autism is “investment in early childhood programs that provide them with the skills to go to school and to integrate is the first step. For school-age children and adults an understanding and acceptance of difference, and an end to intolerance and bullying is needed.”
Says Marianne Harvey, senior writer for SapientNitro, the advertising agency responsible for conceptualising Communication Shutdown:
“When we learnt that social communication is one of the biggest challenges for people with autism, we saw the immediate link to social networks. Face book and Twitter dependence is also very topical and we thought we could use this to create empathy before asking for a donation. We like the irony of using social networks to shutdown social networks but it was also the best way to maximise our budget and avoid spending donations on advertising.”
Dr Morton shares his hopes for Communication Shutdown:
“Firstly, it will provide much-needed funds to assist in the provision of services for people with autism globally. Secondly, it will create a wider awareness of people with autism and their families, and the barriers that they face every day.”
Communication Shutdown was initiated by the AEIOU Foundation, a not-for-profit organisation that provides early intervention therapy for children with autism in Australia.
When they were presented with a fundraising idea using social networks, they realised it was much bigger than just Australia. So AEIOU decided to create the first global fundraiser for autism and established F.A.N. Worldwide (also a not-for-profit organisation) for the purpose of managing Communication Shutdown.
By shutting down social networks for one day on November 1, they hope to encourage a greater understanding of people with autism who find social communication a challenge.
To join, all you need to do is make a donation to receive a CHAPP (charity app). The CHAPP spreads the word, gives a shutdown badge to wear online and adds your picture to a global mosaic of supporters, next to the celebs.
For more about this fantastic initiative see, Communication Shutdown
I am joining today - and hugging my beautiful son extra tight.
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