Health check: NZ children with autism wait half their life for diagnosis, and wait again for help

Girls with autism spectrum disorder are diagnosed later than boys because they are better at masking it. According to one source, the average diagnosis age is 14 compared to 8 for boys. Photo / 123rf

Parents are able to detect if their child has autism at about 2 or 3 years old.

It might be that they don't coo or babble away when they're an infant, or that they can't string a couple of words together at age 2.

Despite this ability to pick up signs of autism spectrum disorder early, children are often not diagnosed until after they've begun school in New Zealand. For girls, the wait is likely to be even longer.

"It is really late," says child and adolescent psychiatrist Hiran Thabrew. "You really want to pick these kids up before school age, to get them some therapy."

It means they can lack the language or social skills of their peers - a problem which can contribute to further problems like anxiety in later years.

SEE MORE: How an Auckland family overcame child anxiety

Even once children are diagnosed, they often face another wait to get support in New Zealand - up to three months in some cities.

There are reasons for hope on the diagnosis front. New technological developments could help earlier diagnosis and lead to children getting support earlier in life.

Autism and all of the main behavioural problems - depression, ADHD and anxiety - have become more prevalent among New Zealand children in the past 10 years.

The fastest-rising problem is anxiety. An estimated 3.9 per cent, or 32,000 were diagnosed with anxiety disorder in 2017/18, up from 0.4 per cent a decade earlier. Experts believe this is probably a significant underestimate.

This article focuses on anxiety, because it is the most common disorder, and autism, because it is the least understood.

'It is half their life'

Children with autism spectrum disorder typically struggle with language, social behaviour and cognitive skills, usually to varying degrees. They are also more likely to have anxiety, depression, or psychosis, and are more likely to turn up in the criminal justice system later in life.

Research published in February found that on average, New Zealand parents of autistic children first suspected they were on the spectrum at age 3. The average age of diagnosis was 6.6 years. That was comparable with other developed countries.

"But it's still bad," said Thabrew, who works at Starship hospital. "We'd love to get the age down to 2 or 3 ideally.

"The earlier they can be socialised into communicating properly, and managing their behaviour, the easier it is for them to be in a mainstream school."

Child psychiatrist Hiran Thabrew says most parents can detect whether their child has autism at age two or three, but they are typically not diagnosed until they are six or seven. Photo / Youtube

If a child's autism is undiagnosed, it is difficult for them and their family and can be disruptive to their school classes. The gap between a GP consultation and a confirmed diagnosis is usually between 10 months and three years.

"That's a long time for a 4- or 5 year-old," said Altogether Autism national manager Catherine Trezona. "For many of them, it is half their life."

The delay was crucial because a diagnosis was "the ticket" to funded support, she said.

There was also a gender imbalance in diagnosing autism. According to Altogether Autism's data, boys were diagnosed on average at age 8 while girls were diagnosed at age 14.

"Girls are particularly good at camouflaging their autism," said Trezona.

"So they can mask it, they can watch other girls around them and learn that this is what you say in that situation."

One potential breakthrough on the diagnosis front is a new Australian-made app called AS Detect. The app shows parents a series of clips of children with typical autism traits and asks them if they have observed such traits in their own child.

Around 81 per cent of children who identified as positive in the app went on to have a positive diagnosis. Thabrew said researchers were now trying to get a group together to investigate whether the app would work in a New Zealand context.

He said it was also important to remember that while autism spectrum disorder made life more difficult or uncertain, children with autism were also capable of looking at the world in different and useful ways.

Greta Thunberg, the 16-year-old Swedish climate change activist, was a good example.

"She is a classic example of someone who is using her autism for amazing things, in terms of her ability to sympathise with and understand environmental issues. So it's not all about weakness," said Thabrew.

Swedish activist Greta Thunberg, 16, has shown that autism can be a strength rather than a weakness. Photo / Getty Images

More waiting

The wait for support is not over for families once they get an autism diagnosis. There is also a long waiting list for early intervention services like speech and language therapy.

Despite the Government promising to reduce waiting lists last year, they have actually increased. Most preschoolers are waiting more than 100 days to get help, and the list has grown to 2650 children, up from 2500 last year.

The backlog will take some time to clear. New Zealand has a shortage of specialists. This is being addressed by the Government, but it takes three years to train new psychologists and five years to train new speech language therapists.

"We put in $21.5 million last year," said Children's Minister Tracey Martin said in April. "It just hasn't worked. It hasn't been enough. We need system change as well as more money."

Children's Minister Tracey Martin has conceded that new funding for early intervention has not done enough. Photo / Mark Mitchell

'Children used to play in trees'

Anxiety is a normal feeling that all children experience. It is only when that anxiety begins disrupting their life that it becomes a disorder. That might mean being too anxious to go to school or to catch up with friends, when they had previously been happy to do these things.

"Most of us know Winnie the Pooh," said clinical psychologist Kirsty Dempster-Rivett. "If our kids are becoming more Eeyore when they used to be Tigger - that change is a warning sign that something is going on."

Anxious parents are more likely to have anxious kids. And behavioural or learning difficulties such as dyslexia can often lead to anxiety disorders.

A child's anxiety can present itself in many different ways. It can be physical, such as complaining of a sore tummy or headache before going to school or to somewhere new.
In boys, it is often masked behind anger or irritability.

There are several factors behind the increase of such disorders in New Zealand. Community paediatrician Alison Leversha said there was now more social and academic pressure on New Zealand children.

"Children used to run around and play in trees and didn't need to worry about anything. But we are getting protective about what children can or cannot do.

"There is also the impression that society is more dangerous than it used to be. So people are generally more protective."

Social media platforms like Instagram were seem as a contributor to rising anxiety rates in teenagers.

"All they see are these perfect, created images which are not like them," Leversha said.

And traumatic events have also contributed to higher anxiety rates. Experts said they would expect a rise in problems following the Christchurch mosque attacks.

"Kids are very aware of what's going on in the world," said psychologist Elaine West, who specialises in child anxiety. "I had one young child who was really, really worried that Donald Trump would climb in her window one night and kidnap her."

BEVAVIOUR

'It can be dreadful'

Early intervention is key to preventing anxiety from becoming debilitating or leading to further illness. There is a strong link between untreated anxiety in childhood and depression in adulthood.

But parents of children with mild or moderate anxiety problems can find it difficult to get support within the public health system. GPs can refer anyone under 19 years old to Child and Adolescent Mental Health Services, but underfunding means this is limited to the most severe cases.

"It can be dreadful," said West. "Many wait a long time only to be told it is not their core business. And they are told it is a parenting issue and sent away.

"It's a funding issue. Once the child is suicidal, then they will take them. But before then, they are left to their own devices."

The gap in the system for mild to moderate mental health patients was identified in the Government's Mental Health Inquiry. The coalition Government is now considering the inquiry's recommendations.

A lesser-known free counselling service is offered to children through district health boards, but it is limited to children aged 12 and up. Parents can or also go private, or look to NGOs like the Salvation Army or Anglican Action for counselling services for young people.

The absence of accessible, timely support for child anxiety has meant teachers have been playing a growing role in identifying children with disorders and managing them. There is no nationwide training programme but some schools are holding workshops for teachers to upskill.

However, this is mostly designed to prevent children from being disruptive in the classroom, rather than preventing anxiety in the first place.

"It's ambulance at the bottom of the cliff stuff," West said.

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