What we wish we’d known when our son was diagnosed on the autism spectrum

What we wish we'd known when our son was diagnosed on the autism spectrum
Posted on Mon 18 Mar 2019

Originally written by By Michael Dulaney for The Parenting Spectrum, published on ABC News March 2019

 

As he has grown, Fiona Churchman and Travis Saunders have learned so much about their nine-year-old son, Patch.

They know that Patch loves exploring, that he is always on the move, and that music, swimming and bushwalking are his favourite things.

"Patch has a unique ability to connect with people and the world and it is the most beautiful experience to get to know him and how [he] experiences the world," Travis said.

It feels a world away from when Patch was diagnosed on the autism spectrum at 21-months-old.

They said they will never forget the feeling of sitting in their car out the front of the paediatricians, being scared and confused about what Patch's future would look like and what to do next.

"Nothing had changed, and I had that going around in my head. He was the same child he was an hour ago. Our little boy who we love more than anything," Fiona recalled.

Fiona and Travis got stuck into early intervention involving many hours of therapy for Patch each week.

It was an anxious and often stressful time for the whole family as they tried to work out the best way to support him.

With so many different types of therapy on offer, evidence-based and otherwise, it was hard to know which offered the most help.

"You're really vulnerable," Travis explained.

Since then Fiona and Travis have learnt so much from autistic people, other parents and professionals about how to help Patch.

They began a process of re-thinking what they had been told about autism and learning what they wished they had known in those early years.

Listen to The Parenting Spectrum podcast. You're invited into the home of Fiona and Travis, and their son Patch as they discover what an autism diagnosis means and what happens next. 

https://www.abc.net.au/radio/programs/the-parenting-spectrum/

 

The starting point

Flinders University Psychologist Professor Robyn Young said she still remembers when her son was diagnosed with a language disorder when he was two.

"I went home, crawled up in the foetal position and cried — even though I knew the diagnosis was coming it didn't help," she said.

That experience has informed her work with parents after their children receive an autism diagnosis.

"I explain to parents this is the starting point," she said.

Autism is a lifelong developmental condition and no two people on the autism spectrum are the same.

Autism Spectrum Australia (Aspect) estimates one in 70 Australians are on the autism spectrum.

Autistic people have their own strengths, interests and capabilities and may experience challenges in areas including communication, socialising, behavioural patterns and sensory perception.

Professor Young said this makes each situation unique.

"We now know if we've got the child early enough, the intervention can be great. We can do the best possible we can for this child to get him or her the best we possibly can," she said.

"So we want to make that a happy environment for everyone in the home."

In the seven years since Patch was diagnosed, Fiona and Travis have learned the early intervention window can come and go and still be followed by incredible growth.

Professor Young said she tells parents that outcomes are different for everybody.

"I try to tell them about other cases I have of adults that have been successful and doing degrees in archaeology or computer science.

"For other children it could be they will be at home probably and need support for the rest of their life but we want to make it a happy environment," she said.

"[I tell them] now we know what's happening, we can move forward. This isn't the end."

 

'I'm happy to own it'

Yenn Purkis was one of the first people in Australia to get an Asperger's diagnosis.

Yenn — who identifies with the gender pronouns they or them — said the diagnosis came at the end of a difficult time in their life.

Yenn told Fiona and Travis that parents should be wary of making quick decisions.

"I would like them to have the message that this is something to learn, this is an experience, this is a journey. Don't make any hard and fast decisions now," they said.

One of the strongest things Yenn imparted on Fiona and Travis was how harmful it is to think of autistic people as "broken neuro-typical people."

"[Parents need] to focus on supporting that child to be them, and to be the absolute best them they can be, and that autism is not a curse or a tragedy or a burden, it is a difference," they said.

"Autism is an integral part of who we are. We're valuable, we're who we are, and we're fine as we are.

"I'm not ashamed of it, I'm happy to own it."

Yenn was diagnosed in 1994 when they were 20-years-old.

Soon after they went to university and now work as a public servant, autism advocate and author.

They said accepting the truth of their autism diagnosis was an important moment in their life.

"The point at which I accepted it was really the point which I accepted myself," they said.

 

'You are not wrong or broken'

One of the most important lessons for Fiona and Travis in the years since Patch's diagnosis was to presume competence in their son and all autistic people.

This was reinforced through reading a blog written by a mother and her daughter in New York.

Emma Zurcher-Long and her mum Ariane Zurcher have challenged the assumption that not talking means having nothing to say.

"Emma is a speaker but not able to completely answer all questions through spoken language," Ariane explained.

Emma works hard at her speech, but it is still a work in progress.

However, where speech fails, Emma types.

"Spoken language by those who find it natural to speak is thought of as of greater importance than any other form of communication," Emma wrote.

"But for those of us who do not fall into that category, there are many ways in which we communicate all the time.

"It's getting speaking people to become more aware of those ways that is a good goal to have."

Ariane said she was very proud of her daughter.

"Emma is one of the happiest people I've ever met, she is just lovely to be around, a contagious kind of bliss — it's so joyous and wonderful to witness," she said.

"I've never heard Emma say a mean or negative thing about another human being.

"[She is] one of the most beautiful human beings I've ever been in contact with."

Emma had a message for Patch and other children who have difficulty expressing themselves through talking.

"Keep going, and remember we all continue to learn and grow," she wrote.

"You are not wrong or broken. Do not let those messages become embedded in your brain."

And she answered one final question put by Fiona and Travis: 'How do you describe being autistic?'

"How do you describe being human?" Emma replied.

 

If your child struggles with making friends or has been diagnosed on the autism spectrum they may benefit from our expertise. Contact us on 1300 888 378 or ask@cerebralpalsy.org.au to find out which program may be suitable.

Cerebral Palsy Alliance response to ABC 7.30 Report story

CPA had the pleasure of talking to RJ Mitte while he was in Sydney to launch the world premiere of Standing up For Sunny at the Sydney Film Festival.


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