There's a lag time of about two years when it comes to getting an autism diagnosis, and the support that follows isn't sufficient.
That's the key findings of new research from Autism New Zealand, which is calling on the Ministry of Health for more leadership, funding and resources.
Done alongside research group Autism CRC, the new research saw over 600 people complete a survey.
Its found parents typically make a first approach to health professionals to ask about autism when their child is four and a half years old. On average a diagnosis is reached almost two years later, at 6.4 years of age.
Autism NZ Chief Executive Dane Dougan told 1 NEWS: “We hoped we were hearing the wrong things but we weren’t”.
He says the worst case he’s heard of was a 3 and half year lag between first queries and a diagnosis.
“If we support that child earlier, research is super super clear that most kids will need little support as they head into adulthood and even as they transition to school," he said.
He believes the demand is too high for the resources available.
The research found for children, the average time on a waiting list alone, is 10.9 months.
Wellington mum Angela Williams said she started asking questions about her son Jaxon, when he was about two years old.
“At that point we were told there wasn't much to worry about, he'd grow out of it," she said.
“We had a year feeling really uncertain and a little lost because we didn't know where to go for help.”
“At age three we got recommended for a diagnosis and we feel lucky we only had to wait six months."
She said she would have liked it to be a quicker and clearer pathway so Jaxon could get support sooner.
“It's really hard to watch your child struggling and not know what to do about it," she said.
The research has also highlighted a need to develop a better pathway in the public system for adults, with autistic adult respondents reporting an average of four years between first queries and a diagnosis.
“Only about 20 per cent of adults got diagnosed through the public system, so most had to go private and there's a cost to that," said Mr Dougan.
“It's very alarming… we believe there's 70-80 thousand people in New Zealand who would be diagnosed with autism we know only 10 per cent are getting any type of government support.”
Survey responses also show that more than half of those who followed the diagnostic pathway, found it unclear.
One respondent wrote, “it is very confusing - there are a number of different pathways that can be taken, both public and private."
Mr Dougan says the process needs to be simplified and better co-ordinated.
Additionally, concerns have been raised about post diagnostic support, with only a quarter indicating they were satisfied.
Ms Williams says when she received Jaxon’s diagnosis, she was “shell shocked with a stack of papers and a whole lot of reading”.
“It was hard to wade through what services were there.”
Mr Dougan says "a lot of the time we'll hear families will say 'yup, here's a diagnosis of autism', get a pat on the back, a couple of brochures and that's about it”.
In a statement the Health Ministry acknowledges that waiting for a diagnosis can be a difficult time.
Deputy Director-General for Disability, Adri Isbister, said, “early identification of children with autism is essential, with outcomes considerably better following early intervention”.
“Having to wait two years for a diagnosis is less than ideal and I would encourage anyone in that situation to contact the Ministry."
She says children thought to have autism can get support before a formal assessment, adding, “improving access to child development services and reducing waiting lists are priorities for the ministry, which is why we have invested more money in child development services”.
“For instance, Budget 2020 saw disability support services receive an additional $833 million over five years to take pressure off services and ensure better access to them.”
Mr Dougan said, “to be fair we've spoken to the ministry about this as well and they've received the findings positively so far, so we're hopeful this will create some change.”
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