Our first project at Frankl focuses on autism research. And so we’re delighted to welcome Jac den Houting (soon to be Dr Jac den Houting) on board the Frankl team as an advisor and a voice for the autism community.

Last week we had a great chat to Jac about their views on many aspects of autism research – including research priorities and misconceptions, what can be done to improve cognitive testing, and ethical considerations for open science.

Here are some videos from our conversation, and a few major insights that they shared with us.

First, a bit of background

Jac is an autism researcher and a proud member of the autistic community. After being diagnosed with Asperger’s syndrome at age 25, Jac pursued a PhD studying the effects of anxiety on academic performance in people with autism. They are now working on a postdoc at Macquarie University, looking closely at how people with autism can be more effectively involved in research.

Jac didn’t know they were autistic until they reached adulthood. With an autistic brother in the family, they grew up with a particular understanding of what it meant to be autistic. Only later in life did Jac discover that autism presents very differently in different people, and came across a description that was not unlike their own experience.

“This was the early nineties, so it was a little bit different — the idea of what autism was, compared to how we understand autism to be now…Although I had grown up always feeling a little bit different and always recognising that I had a few autistic traits, I had also always grown up with the understanding that I couldn’t possibly be autistic because that was what autism was — that very, sort of ‘male’ presentation.”

Jac spoke about their personal experiences with autism and autism research, and what it means to them to be an advocate for the autistic community. Here are six key points from the conversation.