AUT Associate Professor of Psychology and
Neuroscience Daniel Shepherd, who led the study, said he and his team had known from international studies that parents of children with ASD tend to report greater stress than children not only without disorders, but even parents of children with other disorders such as downs syndrome and intellectual disabilities.
"What we sought out here was to really get a feel for what was going on in New Zealand with New Zealand parents."
The study was done in conjunction with Autism New Zealand and the Children's Autism Foundation. The results, he says, were slightly disturbing.
"We were expecting to see in New Zealand, where we just assume a publicly funded health system, that we've got formal support networks and that, if anything, in New Zealand the situation may not be as bad as some of the more international situations."
Shepherd says they used a World Health Organisation measure for stress levels, which has a threshold of no intervention at one end and clinical intervention at the other.
"For parents [of children] on the spectrum here, well over two-thirds were in a stress zone where they needed clinical interventions to assist them with their experience and the stress that they're feeling."
He says there are categories for children with autism.
"We have the core symptoms of autism, where the child lines up objects, they might avoid certain smells or textures and sounds, they're very resistant to change, they have communication problems, made-up languages, repetitive movements, hands flapping, lack of eye contact and lack of shared interest.
"Then, we have another group called the problem behaviours and these seem to be the ones that really predict the parental stress. This is aggressive behaviour like hitting, scratching, biting, some rather nasty self-harm, destruction, eating of inedible objects, running away, ongoing tantrums and screaming."
There's also a higher prevalence in that group of ADHD, childhood anxiety and sleep problems.
"This is what the parent is facing on a day-to-day level."
He says parents find that getting an autism diagnosis for their child is a traumatic journey in itself and, from there, they're sent of to parenting courses.
"They're left with a child who's got a severe range of behaviour problems and core symptoms. They may go to courses for 10 weeks, then they're actually expected to come back into the home, implement this therapy and treat their children.
"From a family perspective where you're trying to hold down a job, there may be other children in the house, there's relationships to uphold, and you have this on top of it, you can see how the stress would accumulate."
One parent he talked to described autism as the "destroyer of all things".
"That includes marriages, relationships, friendships, your work life."
However, he says there's a lot of love between parents and children with ASD.
"You'll often see in the media and social media the bad side of raising a child with autism, but when you actually speak to the parents it's a real Jekyll and Hyde life. At one point, they've got a beautiful child they love and they're doing the best they can like any parent, then the next minute one of these behaviours will arise and they're pulling their hair out."
