By Donald H. Harrison
SAN DIEGO – At 18, Ethan Hirschberg has become a recognized authority on autism.
He has a blog on which he posts about the condition every two weeks or so; has authored a book on sale on Amazon, in which 20 of his most trenchant columns about autism are included; and he lectures to a variety of groups, commanding a speaking fee of $175 an hour.
Recently, the Helen Diller Family Foundation conferred upon him a $36,000 Diller Teen Tikkun Olam Award in recognition of the work he has been doing—and hopes to continue—to demystify autism not only among his peer group, but also among educators, parents and siblings of autistic children, and the general public.
How did he acquire such knowledge? He replies that he, himself, is on the high-functioning end of the autism spectrum. While today he is a composed young man, comfortable being interviewed, and relaxed while giving speeches at schools, therapists’ gatherings, civic groups, and to law enforcement agencies, it was not always thus.
“I was diagnosed when I was 2 ½, and my parents first tried to tell me when I was 8,” he related to me over coffee at the Trails Eatery in San Diego. However, at age 8, he wasn’t ready to deal with the issue. As his parents, Barry and Shelly Hirschberg of Carlsbad, read to him the book, Blue Bottle Mystery: An Asperger Adventure by Kathy Hoopmann, “I immediately began to fuss, scream, and cry, and begged my mother to stop because that character was too similar to me.”
His parents waited two more years, until after young Hirschberg began seeing a therapist, to bring up the issue again. On separate pieces of paper, his mother had him write down his strengths and his weaknesses. Then his mother told him that people with similar strengths and weaknesses have a condition known as autism.
Autism is defined in the Merriam-Webster dictionary as a “variable developmental disorder that appears by age three and is characterized especially by difficulties in forming and maintaining social relationships, by impairment of the ability to communicate verbally or nonverbally, and by repetitive behavior patterns and restricted interests and activities.”
“I’ve grown a lot,” Hirschberg said. “When I was younger, I verbally could not be understood. My parents had to be around me all the time to translate what I was saying. No one could understand my speech. I still have issues articulating my thoughts into concepts that others may understand. Getting it from my brain out my mouth can still be an issue.”
In elementary and middle school, he confided, he was frequently bullied. He suffered many kinds of bullying, ranging from people calling him names to pushing, punching, hitting, and tripping him. They taunted him that he was a “retard,” that he made weird movements, and that he didn’t deserve to have friends.
“I started to believe that I was all these names that they called me, and that I wasn’t worth anything,” Hirschberg said. “I was depressed.”
What changed?
At Temple Solel, there is a well-respected youth-and-song leader by name of Craig Parks, who related to him a theory that can be found on the web, to the effect that people have a choice whether to be a victim or a creator.
“That really struck a chord, that I needed to make a change,” Hirschberg said. Incorporating the “creator” approach into his mind set, he has come to “believe that there is a silver lining in every single situation that occurs,” he said. “There is something positive to be learned from it—even if it is a horrible incident … and I truly believe everything happens for a reason.”
Rather than passively submitting to abuse from his school mates, Hirschberg told them that what they were saying wasn’t okay; that it was hurtful, and he wanted it to stop. If the taunts and bullying persisted, he said, made a formal complaint to a counselor or a teacher.
Standing up for himself was one step toward reconstructing his self-image. Another was enrolling at the San Dieguito Academy, which he said is known for its inclusiveness. As counselors came to know and admire him, they referred to him younger students on the high-functioning end of the autism spectrum. He became their mentor, meeting with them over lunch a few days a week to discuss such issues as “hanging out with the right crowd” and “even though someone is cruel to you, that doesn’t mean you have to be cruel back.”
Further, he said, “if they were arguing with their siblings or friends, I’d let them vent to me.”
He told me that there are three common misconceptions about autism that he would like to clear up. One is that “people on the spectrum don’t have emotions,” he said. “Sometimes, in fact, they (emotions) can be felt a lot stronger!”
Another is that “people on the spectrum don’t want to make friends.” In fact, he said, “Human connection is the most important part of life. It’s not that someone on the spectrum doesn’t want to make friends; it’s just that it’s harder to do so.”
Hirschberg believes these and similar misconceptions develop because people are “too quick to judge and assume.”
Others can be quick to assume that person doesn’t have emotions and doesn’t want friends “if they see someone who is without a friend, or someone who is having trouble expressing emotions in the typical way that someone else would.”
And the third misconception?
“Some people think that people on the spectrum are geniuses,” he said. “The media definitely portrays that with television shows like Criminal Minds and The Good Doctor. In the latter, actor Freddie Highmore portrays Dr. Shaun Murphy, a surgeon who is a genius-level diagnostician who can picture a patient’s anatomy and deduce his or her arcane ailment. At the same time, his character has tremendous difficulties interacting with other people.
It’s true that some autistic people are also “savants,” with amazing abilities such as the fictional Dr. Murphy’s but they constitute no more than 10 percent of the autistic population, Hirschberg said. More typical of autism is the part about the “good doctor” having difficulty relating to others. “That’s a fairly common thing: a majority of the people on the spectrum face that challenge.”
On Hirschberg’s blog, thejourneythroughautism.com, he offers thoughts and advice about a variety of issues surrounding autism.
I asked what advice he would give to the parents of an autistic child. “Start the child’s ADA (Americans with Disabilities Act) therapy early,” he said. “It will be crucial to success later in life. It can be extremely expensive, but there are government agencies that can subsidize these costs.”
For dealing with siblings, his advice to other people on the spectrum is to try to react appropriately. “If something is annoying, don’t get crazy upset,” he said. And to the typically developing sibling, he says, “if you know someone’s trigger, don’t do it.”
He speaks from experience, he says. He and his younger brother, Peyton, have their share of arguments.
For friends and peers of people with autism, he counsels, “if you became a friend, it was for a reason, so try to be understanding. If I say something hard to understand, be patient and understanding.”
Now in his senior year of high school, Hirschberg has made a list of colleges he would like to attend, topped by the Wharton School of Business at the University of Pennsylvania. The “creator” in him would like to expand his lecturing, blogging, and book-writing about autism into a business career, if possible. Other colleges on his list include New York University, Cal Poly-San Luis Obipo, Illinois Institute of Technology, and San Diego State University. He says he expects to put between $25,000 to $30,000 of his prize money toward college, with the balance toward maintaining and expanding his blog.
The Diller Teen Award is given to 15 teenagers across the country each year. Three this year came from San Diego County. Besides Hirschberg they were Beatriz de Oliveira, who has been establishing preschool reading programs in her native Brazil; and John Finkelman, who has been actively aiding refugees in this country.
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Harrison is editor of San Diego Jewish World. He may be contacted via donald.harrison@sdjewishworld.com