Understanding autism differently

Dr Liz Pellicano doing research differently

Image from Macquarie University

Dr Liz Pellicano doing research differently

Edith Cowan University, Sarsha Tombides

“I don’t understanding what ‘normal’ is, but I can walk past a thousand people and then the thousand and first I will be like, he’s like me, he has autism,” explained 16-year-old Kale.

Dr Liz Pellicano from Macquarie University is changing the way scientists think about autism. To truly understand autism, Pellicano is of the belief that we must close the gap between knowledge and practice.

“Autism has always been this complex puzzle, and the theories always seem to fall short of truly explaining  autism,” she said.

People with autism fundamentally have a different way of seeing the world. Pellicano believes that to make advances in autism, scientists must do what scientists are not trained to do and think subjectively.

“Science is objective, but for autistic research to be taken to the next level, and really change lives it needs to be taken from the lab to the community and then back [to the lab] be reassessed,” she added.

“It’s about applied research, at the moment lab to community research with no backwards transition to lab again falls short and doesn’t allow for researchers to see autism in context and how it truly affects lives.”

Pellicano’s research is ground breaking because it is so close to breaking scientific rules.

“Ordinarily scientific research is directed purely through what the funders and academics are after. Nowhere has it been noted that research is done where autistic people and those living with autistic people are a part of the decision making process, ” she said.

According to Kale’s mum, Sabrina: “It is like cooking a delicious piece of meat for a vegetarian, it’s pointless … We have filled out countless surveys about caring for a child with autism, but there is little to no research in the areas that parents of autistic children are crying out for.”

While many living with autism are thankful for Pellicano’s approach to her new research, it hasn’t gone without criticism by many in her field.

“I get it,” said Pellicano, “Many researchers feel that allowing autistic people’s subjective opinions into research is like allowing a parent to operate on their child, it just shouldn’t happen. But I’m at the point with my research that I understand it’s missing the next step, and that next step and deeper understanding can’t be done with scans and machines, it needs a deeper understanding, that can only be achieved by inclusion.”

Backward translation from the community back to the lab challenges the misconceptions of research data.

“The problem with most of the research out there is that it is too perfect and made neat to fit into this ideal understanding. This is not beneficial at all to those living with or around those with autism.”

Most data from autism research is misinterpreted as a negative.

“A prime example is fake laughter versus real laughter which is known as voiced laughter,” she explained. “Most autistic children are unable to convey fake laughter like a neuro-typical child can. This is construed to be a negative for those with autism, as autistic children are unable to use laughter in a socially acceptable manner. But when did not faking a laugh become a deficit in a person?”

From the age of five, Kale was diagnosed with autism.

“He was much smaller than his classmates but could read about five years above his year level. He would take Harry Potter to kindy, it wasn’t worth the battle telling him he couldn’t,” said Sabrina.

Kale was diagnosed to be deficit in so many areas from such a young age.

“At no point did any doctor or therapist say hey, this a positive of autism. It was all very sombre as we put in place ways to make Kale’s life as ‘normal’ as possible.

Autistic children like neuro-typical children grow up with genuine difficulties in some areas of learning and like any child will need assistance. However when autistic children have incredible strengths it is often seen as a result of a greater ‘disability’, which to a neuro-typical child would be seen as an invaluable asset.

Pellicano’s inclusive research is enabling those who are living with autism to feel their own sense of normal.

“I don’t think I have to try and be the same as the other kids at school, I don’t like being bullied but I have a close friend in my class and that’s more important” explained Kale.

Up until now most data reflects people living with autistic to struggle making bonds and communicating with people.

“My shift in research has allowed us to see the positives of autistic communication and the strong bonds that can been formed when there is a sense of trust over extended periods of time, and how the individuals flourish in these positive environments,” Pellicano said.

Her research has found that people with autism may be able to read the emotions of those with autism much better than a neuro-typical person.

“A neuro-typical person struggles to read an autistic person’s facial expressions, interpret their behaviour and are overall less willing to interact with autistic people based on their first impressions and their inability to connect immediately.”

The importance of inclusion in Pellicano’s research doesn’t end at those living with autism, it involves family members, teachers, and friends to help get a greater overall understand.

“As a scientist, of course I am cautious when making assumptions, it’s not about allowing people to decide what autism is, it’s about being aware of how autism is affecting individuals and how we can tailor our research and gather more information to fill the gap.”

Scientific research is represented by observation, theoretical arguments and the objective truth. Parent’s however have the unique experience of their child’s development and day to day living which scientific research to date has been unable to measure. This making those living with and around those with autism essentially experts by experience.

Longitudinal studies have suggested that those living with autism generally have bleak futures as adults. However these studies have always looked at neuro-typical defined norms – meaning what a neuro-typical person would define as a positive outcome versus what someone living with autism would define as a positive outcome.

“I don’t want to have 10 or 20 friends, I’m happy having two friends and being close to my uncle, cousins, brother and mum,” said Kale, “the friends I do have understand who I am.”

Pellicano added: “Neuro-typical people have very different ideals to autistic people, so why would we give autistic people a set of criteria which is created by neuro-typical people? It’s absurd.”

“It is clear that there is a clear lack of alignment between the minds of an autistic person and the minds or a neuro-typical person. We have to bring together the objective and subjective truths of autism, we have to grasp the particularities to have a clear understanding of autism in the real world to be able to create a positive change.”

Unlike neuro-typical researchers, autistic people have the practical wisdom of what living with autism actually is, and essentially knows what living with autism actually is. It’s not a matter of turning our back on all the research that has been done for decades, but rather integrating it into the real world, so we can understand the reality of autism.

This article first appeared on NewsVineWA.com.au