New Zealand study finds parents of children with autism have lower quality of life

The story discusses suicide and family harm.

Parents raising children with autism have significantly worse physical and mental health than other parents, a new study finds.

The study’s lead researcher said a lack of awareness of autism spectrum disorder (ASD) and a lack of support for children and their parents were the main reasons.

Auckland University of Technology associate professor Daniel Sheppard said some of the stories parents shared with researchers were “heartbreaking”.

“We did hear things like, ‘I’ve thought about killing myself and my children.’ Many participants lamented that their child’s autism had actually broken up the family because other family members didn’t know how to view or accept autism.

“It doesn’t mean that parents don’t love their children, because they do, but there are certainly challenges in raising a child who doesn’t have autism.”

Research, Recently published In the journal Developmental Disabilities Research It’s the first study of its kind in New Zealand and one of only a handful of similar studies worldwide.

investigated stress levels and health-related quality of life in more than 470 parents of children with autism and found that a significant proportion of parents reported lower quality of life scores than the general population.

The study found that factors such as gender and number of siblings, as well as parents’ gender, age, education and relationship status, did not significantly affect quality of life.

This suggests that the challenges of raising a child with autism are universal and impactful regardless of a parent’s individual circumstances.

Sheppard said many parents worry about their children’s futures and have to deal with the social stigma of having a child with autism because people often don’t understand the disorder.

“Therefore, we need to realize that children with autism are different from normal children, and sometimes their behavior is not just a reflection of their parents’ bad behavior.”

Sheppard, who is a parent of a child with autism himself, said the findings were not surprising, but showed the importance of taking a holistic approach to supporting children and their parents, especially considering the prevalence of autism now stands at around 1% of the population.

He said greater cohesion between government agencies such as health and education would help ensure children and parents got the support they needed.

“Parenting stress and the consequences of poor mental health can affect children’s well-being and behaviour, while children’s well-being and behaviour can affect parenting stress and parent well-being.

“So it’s useful to have a two-pronged support strategy in place, one for the parents and one for the child, in the best interests of the child.”

Shepherd said the UK’s 2009 Autism Act created a clear pathway for autism diagnosis and improved access to services and support, and New Zealand could learn from this model to ensure services were linked.

Autism New Zealand chief executive Dane Dougan believes there is currently insufficient support for children with autism and their families, and insufficient awareness of the condition, leading to a strained situation.

“The problem is not the children themselves, but the environment around them and the lack of awareness among the public,” Dougan said.

“Combined treatment will have a huge impact. If we can identify these children early and then provide better early support to these families, many children will be able to live the lives they want.”

Autism New Zealand is calling on multiple government agencies including health, education, social development and justice to raise awareness of autism.

“We’re starting to make some progress. This could be a very helpful model for other conditions, like ADHD or other neurological conditions where currently you don’t know where to go or who to talk to.”

“If we can support these families early on, it creates a completely different mindset.”

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