Autism Research Clinic will seek answers from genes

A new Autism Research Clinic, which will offer cutting-edge genetic diagnosis for autism, is being launched by the Waipapa Taumata Rau, University of Auckland Centre for Brain Research.

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 and University 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 , paediatric neurologist and senior lecturer Dr Hannah Jones, and honorary academic 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. Read more.

The analysis 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 to enable the Autism Research Clinic to start its journey. The Centre for Brain Research is seeking further philanthropic partners to help. To establish the clinic fully $1 million a year is required for the next five years. Enrolment in the new clinic will open soon and is currently through specialist referrals only. Clinicians can email ARC@auckland.ac.nz.