One Southland family had to wait 13 months to talk to a psychologist about their son's suspected autism and ADHD.
Josie Dyer from Wyndham says they went to their GP after their son Sam, who's now 10, became fixated on things, fell behind at school academically, was having meltdowns and trashing the house.
She says they were told by a public paediatrician his issues were due to a to parental discipline problem.
Dyer says it was very hard and the family felt let down, especially when they were told it was their fault.
She says they paid to go to another paediatrician privately, who referred them to a public psychologist, who they finally spoke to over the phone a couple of times before lockdown.
Dyer says their son is now on medication which has helped his behaviour.
She says they're waiting for the Dunedin-based psychologist to observe him at school and make a final diagnosis.
Official Information Act data shows it takes up to four months for a child to be seen by a paediatrician about autism, under the Waitemata District Health Board.
However, the Southern District Health Board says the wait time for autism or ADHD assessment at Child Health Clinical Psychology Services is 12 months.
Children's health general manager Simon Donlevy says says the Ministry of Health has recently provided extra funding and hopes waiting times will be reduced.
He says the wait time at Invercargill's Child and Adolescent Family Service is up to two months but that's mainly just for suspected Attention Deficit Hyperactivity Disorder, which can overlap with autism.
Donlevy says it has been longer recently because of staff vacancies, which have now been filled.
Autism New Zealand says families are waiting around two years from the first signs of the disorder until their child is diagnosed.
It's about to release research on the topic, and says many families feel frustrated with the referral process.
CEO Dane Dougan says as soon as children show signs of autism, they should be referred to an organisation like his.
He says the referral process needs to be clear and simple.
Dougan says it's not acceptable the way it is and families feel like they're in a dark room without any light.
He says it can be very difficult for families without support and says a two-year wait is not acceptable.
Dougan says the long waits for autism diagnoses are due to systemic issues in the health system and the organisation's been working with Plunket on an early identification tool.
Dougan says signs of autism start to show at 12-18 months so this tool can pick them out early and families and children can be given support sooner.
He says the earlier autism's identified, the better chance the child goes on to live to their full potential.