"I would be extremely embarrassed if I was his mother."
Someone sent me this message this week about my son. Someone I know, not overly well, committed those words to a message.
I know why she did it; she was looking to weaponise my child to hurt me. And it worked.
I was devastated.
I was devastated for him, and I was devastated for me. It made me second guess every parenting decision I had ever made in my 10 years as his mother. Had I failed him?
My son has autism and ADHD. Autism is a neurological developmental difference that changes the way someone relates to their environment. He was diagnosed five years ago, and I am still learning, every day, as all parents do.
But as you can imagine, my parenting journey is a little bit different to others.
Autism is a spectrum; there’s not a less severe or more severe autistic child. You may've heard the phrase from autism advocate Dr Stephen Shore:
"If you've met one person with autism, you've met one person with autism."
That’s because it presents differently in each person.
In my son's case, he is verbal (extremely verbal… to the point where he doesn’t stop talking sometimes!), and he has the most incredible brain for maths, facts, Lego and technology. He has a beautiful affinity with animals, he loves cooking, his imagination opens up on bush walks, and he deeply loves his family.
But he struggles with emotional regulation, social skills, sensory overstimulation and dysgraphia.
It means I plan our days with what I know he can handle, I am constantly on the lookout for triggers, and that our schooling journey has been tough. I’ve been called to the school more times than I can count because he’s absconded, or he’s vocalising to manage auditory input, or he’s running in and out of the classroom, or he’s not listening to teachers.
Watch: Kathy Lette talks about parenting an autistic child. Post continues after video.
These aren’t tantrums – they are meltdowns that can happen when an autistic child cannot cope with their surroundings.
We’ve had really tough days. Tough days where we’ve both cried ourselves to sleep. I assure you though, no one is harder on him, than he is – desperate to fit in, not understanding why people get angry at him or he’s not allowed to do what other kids are.
This isn’t about me making excuses or trying to justify myself or my child – I completely understand (more than most) the complexities of having a child with autism in the classroom. But he has a right to an education and he has a right to people respecting him.
Thankfully there are teachers who care, recognise the challenges and incorporate inclusivity into their classrooms, using it as an opportunity to instil social justice and compassion in their whole class.
More than 200,000 Australians have autism, and one in four Australians has a family member with autism. Fear and prejudice have no place here. Education and awareness do.
South Australia is leading the way in this field with Autism Inclusion Teachers now in every South Australian primary school. It’s a wonderful opportunity to support those who need it most, and to teach our young people about diversity and representation. This means they’ll grow into compassionate adults.
Things such as quiet times at shopping centres, or sensory-friendly spaces, or social stories can make the world of difference to families and go a long way in supporting access and equity. How wonderful it is to see representation on our screens in shows like Love on the Spectrum or through neurodiverse Australian actors like Chloe Hayden.
Children need to feel a sense of belonging, trusted people to connect with, and an opportunity to feel good about themselves. Constant negative reinforcements and exclusion are incredibly damaging and it’s our role as adults to foster understanding and commitment. To support those who look to us for guidance; not to judge others or fear difference.
I assure you, I’ve heard it all before:
"He needs to be loved more."
"You need to tell him ‘no’ more often."
"It’s your bad parenting, it’s because he was vaccinated, it’s because of something you ate or did when you were pregnant, he needs a good smack’..."
It’s these misrepresentations and lack of education that have driven me to advocate fiercely for him and other families in similar situations.
It’s through this advocacy that I’ve been able to secure NDIS funding without which we wouldn’t have had the opportunity to learn from experts such as SA Senior Australian of the Year Mark Le Messurier or to meet Dino Minnello and incorporate OT into my son's therapy.
To be able to take part in specialised social groups through Autism SA.
He also has access to additional funding for support at school, through the many wonderful counsellors, autism specialists and psychologists that have been part of his journey. And not just his, but also mine, as his parent. The strategies I’ve learnt are just as important for my daughter as they are for my son.
His younger sister is neurotypical (although her tantrums about what to wear each day are legendary!) and she is fiercely protective of her big brother. She can set up a calming sensory corner with the best of them and is the most caring and compassionate sister and friend. I get teary when I see her help a friend who’s upset or when she asks her big brother for advice on a maths equation, knowing he loves to help her.
I am also immensely proud of my son. He is one of the most inquisitive people I’ve ever met and he loves to ask questions because he’s genuinely interested in the world around him. He’s also thoughtful and inclusive of others. He knows what it’s like to miss out on being invited to birthday parties or be excluded from games. So his mantra is to include everyone.
Being his mother, and his sister’s, is one of my life’s greatest joys. It has opened my eyes in ways I could have never imagined. Both are exceptional children and will grow into exceptional adults – and I’ll be there, every step of the way, in whatever way they need.
I’ve been worried at times for my son, or sad, or frustrated – like any parent – and also proud, hopeful and extremely happy. But never embarrassed.
The only embarrassment here is the woman who sent me that message.
Feature image: Supplied.
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