When a child is diagnosed with autism, a family is changed forever. Everything is different. Everyone is learning to live a “new normal” that can take years to adjust to, and decades to master.
Careers, relationships, travel, goals: everything is put on hold while the child — their treatment, progress and needs — comes first, as most would agree they should.
But to raise a child with autism spectrum disorder (ASD), parents too must consider their own happiness.
I realised he was unhappy not because he had autism, but because the people around him didn’t have a clue about autism
That may start with a long walk, an exercise class or a cup of tea with an understanding friend. Taking some time for themselves may not feel important — or as important — as other things but, according to experts, it is.
The topic of happiness after an autism diagnosis, for both parents and young people, is the centre of UK author Jessie Hewitson’s new book Autism: How To Raise A Happy Autistic Child.
Having raised a child with autism, Hewitson’s book offers personal experience, insight and information on how to best navigate the condition and manage its effects on the family.
Anna Stamatatos with her sons Tashan and Christopher
But as she explains, it wasn’t autism making her son unhappy.
“I thought autism was the reason he wasn’t happy and I hated it,” she writes.
“I felt it had robbed my child of the life I wanted for him.
“Gradually, though, I realised he was unhappy not because he had autism, but because the people around him didn’t have a clue about autism.”
The Stamatatos family from Sydney’s south were similarly mystified when their two-year-old son Christopher was diagnosed a decade ago.
Parents Anna and Spiro knew nothing about autism. They were shocked. Scared. Filled with disbelief and fearing what the future held for their boy, they left the doctor’s office in tears, imagining the worst.
Author Jessie Hewitson with her son as a baby.
“In our naive heads, autism was Dustin Hoffman in Rain Man. So we argued with the paediatrician a little, requested a second and third opinion,” Anna tells Saturday Extra.
“We left in tears, uncertainty, disbelief. We were … absolutely lost.”
But they have spent the last decade learning, asking questions, seeking help and doing everything in their power to raise a happy child.
And that, he is.
“We always wanted Christopher to fulfil his potential, whatever level or ceiling that may be — we became realists very early on in the piece and never put any undue pressure on him, our family, or ourselves,” she says.
“We always wanted him to be comfortable and happy — happy at school, happy at home, happy around people, happy with his life.”
Anna Stamatatos with her boys Tashan, 14, and Christopher, 12. Picture: Toby Zerna.
In Australia, autism effects one in 100 people and three out of every four children with autism are boys.
ASD affects how people communicate and interact with others. It is a developmental condition that makes it difficult for individuals to have social interaction and also creates behavioural challenges and sensory issues.
Christopher, or CJ as the family call him, is now 12. A decade after diagnosis, he’s happy. But it’s been a long road and one they painstakingly walked together, every step of the way.
“Parents in general feel overwhelmed with parenthood. Throw in special needs and your world is temporarily turned upside down,” Anna says.
“In the beginning, it was hard to imagine doing things without Christopher or leaving him, but this changed once we saw the improvements in his behaviour.
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“We would reward ourselves with regular date nights alone and I joined a gym and trained for a half-marathon and a triathlon — things I thought I would never achieve.
“But in the beginning, it’s hard to imagine doing anything other than learning, researching, trying new therapies. You almost feel guilty for having a life outside of autism.” She says the journey was, and continues to be “hard and immediate”.
The couple joined an Autism Spectrum Australia (Aspect) group, underwent occupational and speech therapy, as well as an intensive Connect Therapy course to help then interact with CJ, who preferred to play alone.
“I also met with a biomedical doctor who assessed CJ’s health (because) he did not eat anything other than bread, hot chips and milk,” she says.
Leila Doull and her son Broc, seven.
How to raise a Happy Autistic Child by Jessie Hewitson.
“We moved him to a gluten and dairy-free diet, which helped him. It was difficult but we persevered as his health, speech and attention was improving.”
She says it was hard for CJ to maintain a mainstream friendship.
“Most times CJ prefers alone time, a walk around the school oval or a visit to the school library to play on the computer,” she says.
“He has formed some friendships in high school, which we are pleased about, but between the ages of two and seven it was difficult for us to go shopping — the people, the noises, the lights. It was torture for him.
“We couldn’t really go anywhere that was loud.
“We avoided birthday parties as he had an obsession with candles and would fixate on the flame and then cry when it was blown out.
Living with severe autism
“We eased him into life with the help of our therapists and family.”
CJ loves to dance, spend time with his family and, once he gets to know you, his autistic “guard” comes down.
“He is the perfect kid — kind, generous, loving and very happy,” she says.
“He has made us, and everyone he comes into contact with, better people. We are all more patient, more understanding and definitely more aware of autism and the world we live in.”
Hewitson tells Saturday Extra it is important that parents don’t “lose themselves” after discovering their child has autism.
“Dedication to the support of your child 100 per cent of the time isn’t healthy and can lead to depressed parents,” she says.
“All children ideally need their parents to be happy — and I feel that for many kids with autism, who are hypersensitive to the emotions of people around them, this is especially true.
“For me, working part-time is essential, as is therapy, pilates and yoga classes — and seeing my friends.
Author Jessie Hewitson interviewed professionals and adults with autism.
“Not everyone has the money to do these things, but I would advise people to accept every offer of help going.
“Don’t feel that to be a good parent, you have to be there all the time.”
She adds that parents of children with autism should try to regulate their child’s environment — and not the child — to help them and the family.
“If having a happy child is your goal, try to reduce anxiety by taking your child out of a bad situation, and build up from there,” she says, adding it is important to learn about sensory differences. “People with autism process sound, sight, touch, smell and taste differently.
“They get too much or too little feedback from these things compared with people who don’t have autism — which is why a trip to the supermarket or a music group can be hell if you have autism.
“The modern world wasn’t designed with your child in mind, so adapt it to their needs.
“Don’t expect them to join you at noisy get-togethers. If they don’t enjoy such occasions, let them wear noise-reducing earphones. Same if you are going to the supermarket, or just shop online.”
She also encourages struggling parents to go to therapy for their own issues, and structure their lives — using visual timetables, creating routines and writing a day’s plan — to help their children.
Brothers Christoper and Tashan Stamatatos. Picture: Toby Zerna
“Speak to adults with autism and learn about it through them,” she says.
“Through researching my book, I spoke to more than 30 adults suffering autism and the experience was life-changing.
“I learnt more in those conversations than I had in the previous five years of speaking with professionals who didn’t have it, and it has made me think about difference in an entirely new way.”
Sydney mum Leila Doull cried with relief when her now seven-year-old son Broc was diagnosed as having autism at the age of three.
“I cried with relief because now I’d get help — I had a path I could follow,” she says.
“Now Broc laughs and laughs … he is always happy.
“It is hard to raise a happy autistic child, though.
“The society we live in, where there is a perfect world and such high expectations are put on everyone, makes it hard.
“I have always looked to empower him and provide him with the tools to get ahead.
“You need to love life, love your kid’s uniqueness, develop a tough skin and make yourself different.”
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Nicole Rogerson, chief executive of Autism Awareness Australia, says all parents want to raise happy and healthy children, but parents of children with autism have to “think outside the square” to achieve it.
“It is graduate level parenting that requires a lot of patience and determination,” Rogerson says.
“You are your child’s advocate, teacher and are best placed to get them the support they need.
“It is a marathon, not a sprint, so be kind to yourself along the way.
“Often our happiness as parents is wrapped up in our child’s happiness.
“If they aren’t doing well, it is hard for us.”
She says it is important for parents to look after themselves, to “take care of the carer”.
“In order to keep going, you need to carve some time out for self-care, and that is absolutely an individual choice,” she adds.
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“Some might choose exercise, meditation, time away from the kids or spending time with friends.
“But most families don’t do that.
“I want to be the ‘old’ autism mother telling the younger ones to take care of themselves. The reality is, when you are that concerned about your child and want to help them in any and every way you can, it becomes all-pervasive.
“Mother love is a pretty strong force of nature so use it to positively help your child.
“Watching their skills grow and helping them become happier was all the happiness I needed during those years.
“It can be all-consuming at times, so take a step back, take a deep breath and try to laugh at the funnier times.”