VIDEO: Giving a voice to autistic people in autism research
We talk to Frankl advisor Jac den Houting
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.
1. There’s huge diversity within autism, so advocacy is about bringing may different experiences to the table.
“Every autistic person is different,” says Jac. But they believe there are shared experiences as well. So when Jac is advocating, they are careful to include a broad range of perspectives based on their knowledge and research of the wider community.
“I do my best to make sure that when I am advocating, that I’m not just speaking on behalf of my own experiences, but that I’m also giving voice to the experience of people who either aren’t able to give voice to their own experiences — or just people who aren’t in that conversation.”
2. The autistic community needs to be involved in autism research from the very beginning.
Participatory research is important for a number of reasons: empowering the community, ensuring quality data, and making sure that the studies carried out have real potential to improve the lives of people with autism. Jac has been an advisor for several different research projects but says that their involvement is sometimes tokenistic, and that it’s rare to find a truly inclusive project that seeks to involve the community from the get-go.
“It’s really important that autistic people have a say at all stages of the research process — but particularly at that very beginning stage, in terms of deciding which research projects are happening, which research projects are answered, where the funding goes. That’s where we need to be the ones driving the conversation.”
3. Cognitive tests need to be more adaptable to the different strengths and difficulties of people with autism.
In Jac’s experience, cognitive tests are highly ‘neuronormative’. “They’re designed for neurotypical people; they’re designed by neurotypical people,” they explain. To Jac, this means that they don’t take into account the different ways that autistic people communicate and interpret information.
“It would be really helpful to have assessments that are designed more with autistic abilities and skills and strengths and also autistic difficulties in mind, so that we can get assessments that are a more accurate reflection of what our true abilities are.”
4. Autistic children seem to perform better on iPads.
The approach we’re taking in the Frankl autism project is to build cognitive assessments as iPad apps. Jac mentioned that in one study in their PhD, half of the tests were carried out on pen and paper and half were carried out on iPads. They found an unusual pattern of results consistent with iPads leading to improved performance for autistic kids.
“The children were doing better in areas that we wouldn’t expect them to do well in and they were doing less well in areas where we would expect them to do well in, compared with their overall performance. So we went away and did the stats on it and we found that the children were doing significantly better on the iPad administered tests than the paper and pencil tests. And that was the only explanation that we could come up with.”
5. There is a need for more research to be carried out on autistic adults and the senior population.
We asked Jac whether there were areas of autism research they thought were lacking. Their view was that there’s a significant focus on autistic children but not nearly enough on adults and the ageing population.
“We’ve got a whole population of people entering older age who may or may not know that they’re autistic and there’s absolutely nothing out there about those people.”
Jac identified three other areas that also require greater focus: mental health, gender identity and qualitative research that draws on the existing knowledge of the autism community. They pointed out that research could help to shed light on public misconceptions of autistic people regarding their level of empathy, social skills and natural behaviours.
6. Open science presents ethical challenges and involvement from the autistic community will be vital in overcoming them.
When it comes to open science in autism, Jac is wary of contributing their own data to research projects that don’t align with their ethics. They see conflicting agendas in autism science and believes every individual needs to be able to control how their data might be used in the future.
“We need to remember the people who the data belongs to at the end of the day and make sure the data is only used in ways that they’re comfortable with.”
We hope you got as much out of Jac’s story and insights as we did. We greatly appreciate their involvement in the project and we’re very much looking forward to their input as Frankl develops.
At Frankl, our mission is to make open science easy and rewarding for scientists. If you’d like to know more, the best place to start is our Medium page.
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