The average age of diagnosis in New Zealand was between six and seven years.
“We know that it’s a much better prognosis and life course for them if they’re diagnosed before they start school,” Thabrew said.
Early identification is vital
Autism NZ chief executive Dane Dougan said earlier diagnosis and support was critical for autistic children.
“These statistics are horrendous, but something Autism NZ has been conscious of for some time.
“What we do know is the earlier we identify, diagnose and support our autistic tamariki, the less at-risk they are, and the more likely they are to live the life they choose.”
The health system, especially the mental health system, was not designed for the autistic and there was often a lack of training among health professionals about the disorder.
“Access is a problem, and if you do have access, if you don’t get somebody who understands autism very well it can at times make things worse.”
Autism NZ had been involved in training health professionals about autism and it was pushing for a distinct pathway for autistic people to improve access and health outcomes.
Seven years old was “far too late” for a child to receive an autism diagnosis, Dougan said.
“Because you can start to actually pick up signs of autism at about 12 months, and there’s even research going on now that it can be earlier than that.”
Autistic people were also more likely to suffer from anxiety and depression and have neurodevelopmental issues like ADHD and intellectual disability, while about a third had epilepsy which could be fatal if not treated.
The much higher mortality risk among autistic girls identified in the Otago study may be due to their “long-term under-diagnosis” which limited their access to early help, Thabrew said.
Study co-author Joanne Dacombe, who is herself autistic, said getting an early diagnosis was currently “very challenging”.
“There are long waitlists…and even if you do get a diagnosis, then the process for a follow up is long and there’s not necessarily the support in place for the family. There is not a lot of speech therapy publicly available, for example, and private is unaffordable for many families.”
Dougan said there needed to be not only early support, but ongoing peer-to-peer support throughout an autistic person’s life.
“The earlier we identify, diagnose and support our autistic tamariki, the less at-risk they are, and the more likely they are to live the life they choose.
“To see the results of almost twice the amount of mortality rates in our autistic community, and particularly females and those with comorbid diagnosis, is a scary, scary stat.
“To have the information is helpful. The key part is what do we do with it moving forward? And how do we ensure that figure goes down?”
The study was done in collaboration with researchers from Victoria University of Wellington, University of Canterbury, Auckland University and Canada’s Memorial University of Newfoundland and Labrador.