'Inside, they are fighting with themselves daily': Aussie family's shared diagnosis

Kristine and Ben Godfrey's son Liam was a toddler when their family day care educator noticed he was displaying "autistic traits."

"The family day care educator, who is also a teacher, said, 'Liam is definitely autistic, he lines cars up, walks on his tip toes and is very routine-orientated'," Kristine, 32, tells 9Honey.

It wasn't until Liam began attending kindergarten that she noticed just how different her son's behaviours were.

"When he tried to socialise, he'd go up to children and roar at them," she recalls.

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Kristine and her sister-in-law, who is a social worker, brainstormed some ideas to help Liam make friends.

"We told him to say, 'Hi, my name is Liam' instead of roaring at them and scaring them away. It was a six-month proces,s but eventually he was able to engage with children his own age," she recalls.

"When he started prep, his teacher said, 'We need to get some support for Liam because we have noticed that he is different from other children his age.'"

After the initial meeting with his teacher, Liam went onto a waitlist to see the school's allied health team.

Twelve months later, he was diagnosed with Sensory Processing Disorder (SPD) and the occupational therapist recommended Liam to see the clinical psychologist for Autism Spectrum Disorder (ASD) assessment.

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Strategies were put in place for Liam at school and at home. At school he had a sensory room where he could go and be alone if he was overwhelmed or anxious, which reduced perceived naughty behaviours in the classroom.

"I had no understanding of what autism was until I was a year into our NDIS [National Disability Insurance Scheme] journey. That's when I began to understand what autism can look like, because there are so many different representations," Kristine says.

She admits that before her son was diagnosed, when thinking of autism, the stereotype was a child who is "non verbal" and "unable to care" for themselves.

Now, having gone through diagnosis, her understanding of autism has significantly changed.

"You don't typically think of someone who is able-bodied who can participate in the community, but inside they are fighting with themselves daily."

It took another 12 months after Liam's SPD diagnosis for autism to be officially diagnosed, specifically ASD-2 and social anxiety. Eighteen months later, Liam would be diagnosed with dyslexia.

"We applied for NDIS funding in February 2020, and didn't find it to be such a bad process," Kristine shares.

"Initially I found the discourse hard. They use language that you have to get used to."

The couple's second child, Cooper, presented very differently to his brother, experiencing none of the social challenges Liam initially faced.

"Cooper has a great social life and he's waiting for an ADHD [Attention Deficit Hyperactivity Disorder] diagnosis.

"We don't necessarily think he is autistic, but we do think he has ADHD."

Third child Ryan flew under their radar for a while, owing to the accommodations that had already been set up for his brothers.

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"Ryan's day care met with us and discussed that his speech was delayed. He was two and he wasn't talking and he was not engaging," Kristine says.

"He'd never really been chatty. He would say a few things like 'Mum' and 'Dad' but he'd lead us to what he wanted and pointed to it.

"I didn't realise each child has a different language they use. It wasn't until day care had trouble understanding him that I thought I'd look further into it."

She visited the family GP, who told her about the NDIS Early Childhood Early Intervention (ECEI) Program, which would provide funding for early childhood specialists, including speech therapy and occupational therapy to assist with determining if Ryan needed to be assessed for ASD.

Daughter Madison is only 18 months old, but Kristine does notice she is very auditory-seeking, walks on her tip toes and flaps her arms when overwhelmed, and will keep careful watch for other autistic traits in her daughter.

With three neurodivergent children in the mix, Kristine and Ben turned to each other and asked the question: "Is one of us neurodivergent too?'"

"After having Madi, I went to the doctor. I wasn't depressed, but I told them I just don't feel like I've ever fit in anywhere. I just don't feel like I've found my tribe of people," she recalls.

"It was hard, and I was just fighting in myself. The way I connected to people was just so different."

She was referred for assessment and diagnosed with ADHD in October and autism in January.

"It's a sense of relief. You are different. And it's OK to be different," she says.

"Now I can understand why my behavours are the way they are and understand the ways I view friendships.

"Since I was a teenager, I was always exhausted. I had told many doctors over the years and they always said that I led a busy lifestyle and that I could do with a bit more iron. I couldn't understand why everyone else seemed to have so much energy.

"I'd think, 'What am I doing wrong?' I couldn't figure it out."

Following her children's diagnoses, Kristine sat down with her GP and filled in a questionnaire which suggested ADHD and autism, and then sought an official diagnosis.

"My husband said he's not surprised. He's always said to me I'm always the smartest person in the room and I understand so much more than the average person," she says.

"He's always been in awe of me, and me with him equally. My husband was in the military. We met as teenagers."

Kristine doesn't feel daunted by raising neurodivergent children as a neurodivergent parent.

"Now being diagnosed, I have been able to identify my neurodivergent attributes and relate to my children," she says.

"To me, at the end of the day, if I can be as proactive as I can be, they're going to benefit from it. And that's what I try to do, as much as I can when I can."

Parents of additional needs children quickly learn how much paperwork is involved in caring for their children and managing their care, which led Kristine to create a platform that would manage all of this for them.

It is called Carefully Planned and it launches later this year, with families able to join the waiting list via the website.

The web-based platform streamlines healthcare action plans, goals, notes, documents, reviews, and comments for parents and carers of children with additional needs and the health providers they work with, both in and out of the NDIS system.

It will provide families with the peace of mind that their health professionals will be able to collaborate in a safe and secure platform that will ensure their child will get the best possible care.

"I decided I really wanted to help families," she says. "We talk to so many different people about our children, about the services we are accessing, trying to explain it, but we are parents, not trained professionals.

"With Carefully Planned everyone can talk to each other using this software."

April is Autism Awareness (Acceptance) Month. Find out more by visiting the Autism Awareness Australia website.