Starting with the Man in the Mirror: Repetitive Behaviors and Ethics of Research

man in the mirror

Little brothers aren’t always easy to have around. Needless to say, my relationship with my brother was always very different from my friends.

In a sense, our friendship really started because of the music of a moonwalking man, who wears a single glitter glove.

My brother, Justin, has autism. But if you met him in person, you might just think he was a pretty impressive super-fan of the King of Pop. While most sisters try to prevent little brothers from making any sort of contact with their friends, my friends and I love to come to my house because of Justin. One day, Justin even walked in with Michael Jackson’s “Beat It” costume.

My friends tried to simulate strobe lights with their phones, and we tried our best to be his crazed audience.

So how does Justin do it? He practices, like any other superstar. Some of his favorite pastimes involve researching details on Michael Jackson’s life and dancing along with old MJ music videos over and over again until he got the routine down to a T.

It wasn’t until recently that I realized that his passion for all things Michael Jackson was a normal behavior associated with autism. Researchers are currently conducting studies on this lesser-analyzed aspect of autism, formally called “repetitive, restricted behavior”, or RRB.

“What is really defining about the behavior is that it is unusual, appears non-functional, and occurs over and over again,” explained Ericka Wodka Ph.D., a pediatric neuropsychologist in the Center for Autism and Related Disorders and the Department of Neuropsychology at the Kennedy Krieger Institute.

Interested by how researchers viewed behaviors like my brother’s, I delved into more articles. And the more articles I read, the more apparent it became that people can exploit such research to force people with autism to act less like they have autism. That issue led me to wonder: Is the research conducted with ethical motivations and goals?

“If the objective of an intervention is simply to reduce autistic traits, it is possible to do real harm to the individual,” says Ari Ne’emen, who has autism himself, and works as  director of the Autistic Self Advocacy Network, a Washington-based advocacy group that applies the raises awareness of disability rights.

Luckily, researchers and advocates agree that the studies are meant purely for forming a greater understanding of RRB, and how to use the behavior to tap into individuals’ full potentials.

An important aspect of treating a behavior is understanding the purpose of it, Dr. Wodka explained. “Something that is pleasing is not going to be responsive to the same kind of intervention as something that is a response to anxiety,” she said.

Research should be geared more towards the positive aspects of RRB. More creative approaches to learning can be developed. I know that my brother’s motor skills have significantly improved after hours of pops, locks, and moonwalks.

If you ever meet my little brother, the six-foot-tall Filipino Michael Jackson impersonator, you might never detect his autism. He’ll jump right in and ask you what your favorite Michael Jackson song is, and if you reply with anything at all, he’ll continue to educate you on the King’s favorite foods, and he’ll instantly become your friend.

Yes, understanding how to tone down these obsessions would help out my family during times when we can’t buy the MJ album that Justin wants so badly. But, I believe that the greatest advantage to this research is that it teaches others that behaviors don’t make individuals with autism any less valuable as human beings. A lot of them can still learn the same material as everyone else, if we just recognize and respect that they learn in different ways.

My brother’s love for Michael Jackson is not an error on his behavioral report card that needs to be corrected. In truth, it is the passion that allows him to face the world while being proud of himself. And, it is the reason why I’ll always feel proud to be his sister.

By Samantha Mallari

This entry was posted in Autism Action Alerts, Autism Advocacy, Autism Awareness, Autism Diagnosis, Autism Education, Personal Essay and tagged , . Bookmark the permalink. Post a comment or leave a trackback: Trackback URL.

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    … – The findings more reliable, the larger issues that might astonish a parent takes into consideration at all you have it. The drug companies are getting if you do not have in the … Starting with the Man in the Mirror: Repetitive Behaviors …

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