New Autism Clinic Offers Answers From Genes

Opening the Autism Research Clinic on 27 November is a major step toward making genetic diagnosis for autism widely available in New Zealand, says new clinic director University of Auckland Senior Lecturer Dr. Jessie Jacobsen.

In the first year, the clinic will work alongside hospital specialists to enrol at least 50 children and their parents, says Dr Jacobsen.

Over the past 10 years, Dr Jacobsen has led a multi-disciplinary team of researchers, who have become New Zealand’s foremost experts on the genetic underpinnings of autism. The new Autism Research Clinic team will include geneticists Professor Russell Snell and Associate Professor Klaus Lehnert from the University of Auckland, paediatric neurologist Hannah Jones, and clinical geneticist Juliet Taylor.

In 2013, Dr Jacobsen co-founded the Minds for Minds Autism Research Network, which recently published results from its genetic analysis of 201 New Zealanders who had been diagnosed with autism. This provided a clear genetic answer for about 13 percent of participants - their DNA contained a variation in a gene known to cause autism. In about another 16 percent of cases, the tests revealed variant genes likely to cause autism.

At present, genome-wide sequencing to identify the genetic basis of autism is not routinely funded by the New Zealand public health system. The clinic will offer genetic sequencing for autism, then help whanau access individually tailored care and support.

“Initially we will be working with people who already have an autism diagnosis. The genetic tests provide an opportunity to refine that diagnosis, which is important, so care can be tailored to their individual needs. It also allows people to plan for their futures and can help them qualify for support from other agencies,” says Dr Jacobsen.

She expects that in five years, with sufficient funding, the new Autism Research Clinic will be able to meet the demand for genetic diagnosis for autism across New Zealand.

“We need to improve early and accurate diagnosis, because it helps people have far better long-term outcomes.

“For some people, genetic testing provides an answer after a lengthy, drawn-out diagnostic journey and that can be a real relief,” says Dr Jacobsen.

While some people in the autism community have low support needs, some autistic children are non-verbal or have co-occurring conditions such as seizures or intellectual disability – leaving families desperate for support, Dr Jacobsen says.

“The new clinic is all about making it easier for families to give their tamariki a great start, so they have the best outcomes in life,” says Dr Jacobsen.

The Freemasons Foundation has provided significant funding for the Autism Research Clinic. The Centre for Brain Research is seeking further philanthropic partners to help fund the clinic, which will cost about $1 million a year for the next five years to establish.

The Autism Research Clinic will be officially launched by the University of Auckland Centre for Brain Research director Distinguished Professor Sir Richard Faull on Wednesday 27 November.

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