school

"My son has autism, and I want to shout it from the rooftops."

I want to shout it from the rooftops. MY SON HAS AUTISM. In fact I do everything but shout it from the rooftops. I write about it, I talk about it, I share stories about it on social media and still there are those who think I shouldn’t talk about it at all.

It’s not my news to share.

It’s something I should hide.

He will be embarrassed I’ve told everyone.

Autism is something that needs to be hidden.

At my dad’s recent 80th birthday party my uncle came up to me and waving his finger in my face he said, “Stop telling everyone about Giovanni!”

"No, I won't stop," I said, more defiantly than I felt. He's a bit scary.

"When he goes to get a job they will know, and he won't get a job," my uncle continued.

At this I rolled my eyes and walked away. It wasn't the time or the place to explain why I want to speak openly about Giovanni. I am happy with my decision to be so open about it, except from time-to-time when little seeds of doubt start to form.

There are so many books and movies I watched before my son Giovanni was diagnosed with Autism Spectrum Disorder. I'd watch them and read them and think, "How sad, it must be hard," and now people think that about me. Yes it is sad, yes it is hard, but it just is.

Just because I cry about it sometimes and struggle with it often, doesn't mean I'm ashamed about it or him. I love Giovanni just the way he is, his beautiful autistic self, but he's damn hard work.

Ever had to remove nits from an autistic child's head? Not good.

One of the books I read before Giovanni's diagnosis was The Boy Who Fell To Earth by the wonderful Kathy Lette and she has just finished writing a sequel. It's about an autistic boy and when it was released everyone immediately speculated that Kathy Lette's son Julian was autistic.

Lette spoke with Mia Freedman on the Mamamia podcast No Filter about that time. A journalist asked her directly and she didn't want to lie. Why should she?

So she spoke to her autistic son Julian about it.

Author Kathy Lette spoke with Mia Freedman on Mamamia podcast No Filter about her decision to go public with her son's autism diagnosis. 

When my son was diagnosed he was seven and I told him straight away that he had autism. We talk about it openly in my house. It's not a secret. It's just Giovanni. My close friends and family talk to me about it. However in slightly wider friendship and family circles it's still treated like a shameful secret.

I wish they'd ask about him more. They ask about Philip and how he's feeling about high school. They ask about Caterina and her cute dimples. However Giovanni - who at the time is either glued to my hip or sitting in the corner playing on his tablet - is treated like a shameful secret.

If only they knew how much he would love it if they reached out to him. If only they knew how much I would love to see them even try and reach out to him.

Kathy Lette and her son Julian, 25, who has autism.
ADVERTISEMENT

My son has autism. One in 63 Australian school children does. He is special needs. I always say he is "extra needs" but really, he is special needs. As the spectrum goes he is mild or "high functioning" as it is officially referred to.

However the fact he is "high functioning" doesn't make it any easier.

I re-read Chloe Maxwell's book about her son with autism called Living With Max. She and husband, footballer Mat Rogers, struggled with his diagnosis as well, in particular with how people respond and react to him when he is having one of his sensory episodes.

Parents of autistic children are writing about it, talking about it, making movies and documentaries about it and still autism is treated like a shameful secret.

Autism Spectrum Disorder isn't going anywhere. It's here to stay and as Lette explains in No Filter it's a gift. People with autism have specific gifts and talents that contribute to society from the invention of major innovations to the solving of small yet significant issues.

I want autism to be discussed in the same way as food allergies and other childhood conditions but for this utopian world to develop, five things need to happen:

  1. Parents need to speak openly about their children's autism diagnosis;
  2. Autistic children need to be told they are on the spectrum;
  3. Parent's of autistic children need to be open to being asked about their child's condition;
  4. Other parents need to stop being afraid to talk about it;
  5. Self-appointed authoritics of political correctness need to stop commenting on our choice to discuss our children and the way in which we choose to discuss it.

I want Giovanni to live in a world where autism is recognised, discussed and accepted. That's the world Kathy Lette wants her son Julian to live in. That's what Giovanni will want and it's certainly what Julian wants.

Julian, 25, is a working actor and as Lette explains, acting came naturally to him because autistic people are acting all the time. When she said this it articulated for me something I have been struggling with when it comes to my son.

Normal things exhaust him because they take so much effort. He gets home from school where he is in therapy to act normal, learn normally and play with others normally, or "neurotypically" as Lette correctly refers to it as however when he comes home he just collapses with relief.

At home he is free to be himself. He's free to be as autistic as he likes. And isn't that what home should be for all of our children? The place they get to be themselves?

One day the world will be like this for people with autism too. One day the world won't require him to conform. Autism will just be autism and it will be recognised, it will be accepted and it will just be.

Autism, autism, autism, autism. It's just a word.

To find out more about Autism Spectrum Disorder (ASD) visit the "AEIOU Foundation: for children with autism" website.

FROM OUR NETWORK
00:00 / ???