Date Published: September 11, 2019
When Trudi Sullivan was being evaluated for an autism spectrum disorder, she was ushered into a room that included a child-sized chair. That chair was a reminder that she was getting her diagnosis later than most people — decades later.
Sullivan was in her 50s when she was diagnosed by a specialist who usually saw children. Now 64, she grew up at a time when milder forms of autism, such as Asperger syndrome, did not exist as diagnoses. As a result, she did not receive the help or services available to children and teens now. She is part of what some researchers have called "the lost generation: those who today would receive their diagnosis by 6 or 8 years old, if they were a 21st century child."1
Sullivan joined SPARK, the largest study of autism, to help scientists find answers. "I don't think autism should be a big mystery," she says. And she wants research to include older adults who, because their autism was missed in childhood, have been "invisible."
A Long Road to Autism Diagnosis
Sullivan recalls a childhood made difficult by a condition no one knew she had, and by intolerance. "I went to school, and I was bullied," she says. "I never had a boyfriend. I didn't go to junior prom. I never met anyone to marry. I never had any children." She did not understand the social cues that govern relationships, she says.
And she did not get help for her challenges. At that time, only children with severe developmental delays received an autism diagnosis.2 Even her learning disability, which affects reading and spelling, went undetected in childhood.
"I got it [bullied] on the schoolyard because of not picking up on social cues, and I got slammed in the classroom because I had this learning disability," she recalls. Sullivan had graduated by the time U.S. law began requiring public schools to evaluate and educate all children who have disabilities.
Sullivan enrolled at the University of California, Berkeley. Her parents helped proofread her college papers. After graduating from Berkeley, she discovered she has an auditory perceptual disorder, for which she received help. The condition affects the brain's processing of words. Although spelling is challenging, "I've always been a writer," Sullivan says. She drafted an unpublished science fiction novel for children, "Tanzelnalian In Flight," in college. Later on, she sold magazine articles to the religious press.
Getting a Diagnosis
Almost a decade ago, as awareness of the spectrum grew, Sullivan's sister researched Asperger syndrome and how adults could be evaluated for the condition. Asperger syndrome became an accepted diagnosis in the United States in 1994. In 2012, it and other forms of autism all became known as autism spectrum disorder (ASD). The sister, who is Sullivan's fraternal twin, does not have ASD but thought Sullivan might.
Sullivan was evaluated at the University of California Davis MIND Institute, a research center that specializes in autism and developmental conditions. "I never heard of Asperger's syndrome until I was diagnosed with it," she says. To learn more, she read The Complete Guide to Asperger's Syndrome by psychologist Tony Attwood. "Then I started putting the pieces together."
Learning Social Cues Later in Life
Sullivan wanted to improve her conversational skills and relationships. "Some of my symptoms were upsetting people in the family," she says. She would talk in long monologues or "hijack" a conversation. Or she might repeat the same question, she recalls.
With advice from an autism specialist, she designed a program to help herself have back-and-forth conversations. She created instructions and enlisted relatives and friends to help her practice over many months.
As she did so, she says, "I started to pick up on things that I never did before." She began noticing clues — a glance or a change in someone's tone — that indicated whether they wanted the conversation to be brief or long.
"That was the awakening. I really began to understand how the fine art of conversation and communication works," she says. She recently received an email from a friend about choir practice. The friend noted that she had to pick up her son from basketball practice. Sullivan read between the lines, a difficult skill for someone who used to take language literally. She realized the friend wanted choir members to arrive and leave on time, so she would not be late getting her son. "There was just a wealth of information given in a very few words," she marvels.
She also began to understand why she had trouble managing emotions. With the help of a doctor and medication, she was able to improve her abilities in this area.
Raising ASD Awareness as an Author
Sullivan wants to teach others about autism and the therapies she uses to improve social skills and regulate emotions. To do so, she returned to a past-time she began in college: writing books for children. In 2017, she self-published her first book in a series, Gold Falls: Joey's Friends. In it, 12-year-old Joey Callahan learns about ASD symptoms in children and adults during the course of his adventures. The book focuses on mild ASD, Sullivan says, because "the only thing I know about is where I am on the spectrum."
The second book in the series, which she is drafting, will focus on characters trying therapies she has used. But one character, a woman named Delores, sees no reason to treat her autism traits. "One of my favorite characters, she has a lot of attitude. She wears her ASD like a badge of honor," says Sullivan, who considers her own ASD to be a blessing.
A Place at the Table
Besides the Gold Falls series, Sullivan is working on her autobiography.
She also serves on SPARK's Community Advisory Council. She hopes to advocate for adults who spent decades without an autism diagnosis or services. She would like to see more studies of older adults, who could shed light on aging in autism, for example. "Adults like me need a place at the table,” she says.
Photo provided by Trudi Sullivan