Book examines ethics in research

Deborah Barnbaum, associate professor of philosophy holds her book, “The Ethics of Autism”, in her office in Bowman Hall. Brittany Ankrom | Daily Kent Stater

Credit: DKS Editors

Deborah Barnbaum has taken a look at autism in a new way. Barnbaum, an associate professor of philosophy, studies the ethical questions facing research in autism today.

Her book on the subject, “The Ethics of Autism: Among Them, but Not of Them” won a bronze IPPY award from the Independent Publisher Book Awards in the category of Health, Medicine and Nutrition this summer.

“It meant a lot because it meant that there were other people out there who read and took notice of what I was saying, even if they didn’t agree with it, that they nonetheless took the time to consider it seriously,” Barnbaum said.

Barnbaum said many experts speculate people with autism lack what psychologists call a theory of mind, which is the awareness that other human beings have a separate mental life from their own.

“From the perspective of someone with autism, the whole world is different than the way you experience it if you didn’t see other people as the way you see them right now,” Barnbaum said.

This claim that theory of mind is what people with autism fundamentally lack is the focus of Barnbaum’s book. She uses it as a starting point to jump into other questions about the ethics of medical research on autistic people and what makes an autistic life a good life.

She also questions whether or not autistic people should be cured.

“The idea that you shouldn’t make a point of curing absolutely everybody who has autism – maybe they’re very happy the way they are – is something that I think that a lot of clinicians find really difficult to wrap their mind around,” Barnbaum said.

While she believes certain conditions, such as an oversensitivity to light and noise, should be cured, Barnbaum feels that completely curing autistic people and drastically changing their view points would be disrespectful to them as human beings.

“I think that for adults who have autism, to try to give them back theory of mind – if that’s what we mean by curing them – would really be failing to respect them as people,” Barnbaum said. “But if you’re talking about changing somebody irreparably and saying with a pat on the head ‘Trust me, you’ll like it so much better when we’ve fixed you,’ I think that that’s not really very respectful.”

While many books discuss the genetic, psychological, and physiological aspects of autism, Barnbaum’s book takes steps to branch out from that.

Professor Simon Baron-Cohen, director of the Autism Research Centre at the University of Cambridge in England, notes the importance of ethics when discussing autism.

“Although there are many books about autism, in the 66 years since the condition was first described, none has tackled the ethics of autism head on in the way that Barnbaum does,” Baron-Cohen wrote in a review for The Lancet last May. “This book kick-starts the ethical debate that I think we need.”

Barnbaum’s inspiration for writing the book comes from both her training in philosophy and her personal background; her brother is autistic.

“It’s always been important for me and the rest of my family to try to understand why he is the way he is so that we can better understand and appreciate him,” Barnbaum said.

She hopes to give readers insight into how an autistic person sees the world.

“One thing I hope that people get out of it is to appreciate from the point of view of people who are autistic,” Barnbaum said.

She does this by bringing the perspective of autistic people into the book. Throughout the book there are sections called Voices of Autism in which famous people with autism talk about their lives. All of the artwork found in the book is by a local artist in Cleveland who has autism.

“I hope that people who don’t have autism come to appreciate the complexity and the diversity of the disorder in such a way that they’re able to maybe better able to interact and respect people who have autism,” she said.

This new understanding is not limited to her readers.

“After having written this book, I really understand (my brother) a lot more,” Barnbaum said. “I know why he does the things he does in some cases, or I know why he says the things he says in some cases, and so I can sort of understand him, and I’m able to be a lot more patient with him.”

Contact news correspondent Lydia Coutre at [email protected].