Most Kiwi parents of kids with autism spectrum disorder suffering 'clinical levels of psychiatric distress' - study

Most Kiwi parents of children with autism spectrum disorder (ASD) are suffering "clinical levels of psychiatric distress", according to a new study that hasn't surprised advocates for the community. 

As many as two-thirds of parents of ASD kids are affected, regardless of their age, income, education or relationship status, researchers at the Auckland University of Technology found, with anxiety leading the way.

The researchers quizzed more than 650 Kiwi parents of kids with ASD. It's estimated between 1 and 1.5 percent of children are on the spectrum, which can range from high-functioning forms such as Asperger syndrome to people who need close supervision and care for their entire lives. 

They found between 66 and 72 percent of parents of ASD children scored above the threshold for a psychiatric disorder - mostly anxiety, followed by somatic disorders (fixation on physical symptoms and pain that have no clear cause), social dysfunction and depression.

"The negative effects that come with raising a child with ASD are largely universal and the disorder does not privilege one group over another," the study read. "ASD does not discriminate across parents when it comes to its negative effects on psychological wellbeing." 

Dane Dougan, chief executive of Autism NZ, told Newshub finding out two-thirds of parents raising kids on the spectrum were struggling with their mental health didn't come as a shock.

"A lot of the focus for those people lucky enough to have support is focused on the child themselves, not the support environment around the child. It's not a surprise, not really." 

There was only a small link found between the severity of a child's ASD symptoms and parental mental health - parental stress being a much bigger indicator. Dougan said that's because children with high needs tend to get higher amounts of support, offsetting some of the stress, while parents of ASD kids with lower needs get correspondingly less assistance. 

But services are stretched. Altogether Autism national manager Catherine Trezona told Newshub there is presently minimal support for both children with ASD or their parents. Since 2014 there have been disability support services offered through the Ministry of Health, which received no extra funding to provide them. 

"Unfortunately we are under-resourced no matter which way they turn. There are waitlists to get diagnosed, waitlists to get assessed for what your support needs might be, then there's a shortage of appropriate support right throughout Aotearoa/New Zealand, particularly in rural and more isolated places." 

Dane Dougan.
Dane Dougan. Photo credit: File

The researchers said targeting parents for assistance could be a good use of limited resources rather than focusing exclusively on services aimed at moderating and accommodating the child's symptoms, described as "time-consuming and expensive" and contributing to parents' stress and anxiety - which can negatively impact on their parenting, resulting in spiralling worse outcomes.

"These findings... argue for a holistic approach to interventions by acknowledging a likely bi-directional relationship between parent mental health and both child symptoms and problem behaviours."

Parents the researchers spoke to backed that up. 

"Parents should be offered free counselling services to help them talk and cope - this has never been offered to our family and has been wanted for many years," one parent said. 

Trezona said helping parents would be an effective way of minimising stress for both them and their child.

"Over 70 percent of autistic children experience mental health concerns... that impact their parents, and parents' mental health concerns are going to impact their children."

Time heals?

If there was a silver lining for parents in the study, it's that it might get less stressful as time goes on. While some previous research has found "wear-and-tear" can cause parents to "become more fatigued and dispirited, and accompanying support sources begin to reduce, leading to poorer mental health", the AUT findings suggest instead parents "adapt and learn better coping strategies, including the recruitment of formal and informal social support agencies".

Dougan said Autism NZ's research had also highlighted the importance of helping parents cope with the stress of raising ASD children.

"It's no different to when we train up teachers - we expect teachers to know how to interact best with their community, but don't necessarily provide them the tools to do it. Teachers want to do a great job as well, but if we don't give them the tools to do it, it makes it far more difficult." 

But it's not just a funding issue, with Dougan saying there was still a shortage of trained professionals who understand ASD. 

Trezona says every Kiwi can help simply by being aware of the struggles children with ASD and their families face every day. 

"If we see a child we think is behaving badly and we give that judgmental look at the parent, just hold on a minute - there could be some differences going on there such as autism. Hold [your] judgement at bay." 

The AUT study was published in February in journal Research in Developmental Disabilities