Elisabeth’s Story

Stephanie Loo, M.Ed.

Elizabeth Avery was born in 1965 in Mineola, New York (on Long Island), but grew up in Kentucky. Her father was from England, and her mother from Germany. She had a younger sister and a younger brother. Elizabeth knew from early childhood that she was in some way different from other children in Louisville—and not only because of her atypical clothes and her European accent.

She was uncomfortable in noisy environments, and hated tight clothes—especially shoes. She liked the deep pressure of a firm hug, but a light touch made her skin feel “sore.” (This problem has lessened over the years.) She preferred firm and crunchy foods, disliking the mushy textures of egg whites, hot cereal, mashed potatoes, and apple sauce. She enjoyed studying an object, such as a bottle of liquid soap, from different angles, getting visual stimulation from the subtle changes in the object’s appearance. She found swinging comforting, and enjoyed the way swimming and jumping enabled her to feel her whole body. As early as preschool, live TV footage of the manned moon landings, space probes, etc. inspired Elizabeth’s enduring interest in astronomy.

Elizabeth played with her sister a lot, enjoying the freedom of the neighborhood’s contiguous backyards and woods. She remembers that she didn’t want to start school. The elementary school building looked “big and not all that friendly,” with only a few small windows. It felt strange to sit in a room with 25 other kids. It did not help that these kids lacked exposure to people from other parts of the world, and so made fun of Elizabeth’s accent. (Even her more outgoing sister got teased.) Still, Elizabeth enjoyed reading, and showed a talent for math and spelling. Gym was another story: there she felt like the slowest and clumsiest, and was last to be chosen for a team. She had trouble starting conversations and making friends, and sometimes—unintentionally—she offended people. Once she brought a photo album to school. Kids were interested—so she brought it in again the next year—and the next—not realizing that the other kids had seen enough of that “same old tired album.”

“No one could explain me at the time,” says Elizabeth. Beginning in 2nd grade, Elizabeth saw various therapists. One, a woman Elizabeth liked, did tell Elizabeth’s parents that the child “looks autistic.” However, no one followed up on the therapist’s hint, and Elizabeth continued to be misunderstood and to struggle.

On the first day of 6th grade, Elizabeth was laughed at because she arrived wearing Mary Jane shoes and a dress with puffed sleeves. She did not know that such an outfit, while o.k. for elementary school, was not considered appropriate for junior high. “How did all those other girls learn the junior high dress code?” Elizabeth wondered. Having grown up in war time Germany under conditions of war time deprivation, Elizabeth’s mother did not know the rules either.

In 8th grade Elizabeth and three friends used to sit in their own special corner of the English teacher’s room. The “emotional piece” was still hard, though. As a teenager, it was no longer just a question of joining in an activity or game, the way younger kids can—other teens expected her to be able to chit chat and share their interest in movie stars, fan magazines, and boys. Elizabeth had no interest in these subjects; she also preferred country music to the overwhelming cacophony of heavy metal.

Elizabeth now realizes that she was not as mature as other girls in junior high school. Sex education in her health class was another mystery—what were those “feelings” the teacher talked about? “Boys were o.k.,” in her eyes, but Elizabeth had no desire to date. By 9th grade, some boys were starting to pursue her, but they just made her feel confused and uncomfortable. Wisely, she chose to wait until she did feel ready.

In high school she liked math, did o.k. in German, and struggled with chemistry. Reading non-fiction was no problem, but she had a hard time with creative writing and with analyzing literature. Her English teacher complained that Elizabeth could not create convincing characters whom the reader could believe had a past and a future—a concept that seemed totally unreasonable to Elizabeth. She could not relate to the people described in her American history text book, either. For one thing, since her parents had not lived in America, this history did not seem relevant to her family’s life—nor could her parents help her learn about American history, since they had not learned about themselves. (Nowadays, Elizabeth feels more interest in history, as well as in current events.)

She participated in the German club, and sang in the chorus. She remembers: “A math bee in my 10th grade geometry class ended in a three-way tie between two boys and myself. It ended that way because the bell rang. There was one particular question that stumped a whole string of kids. I came up with the correct answer—to the relief of the kids whose turns came after mine. I no longer remember that question, but the answer was ‘the square root of two divided by two.’” Kids did not pick on her as much as before. Still, she was the “strange” girl who dwelt at the margins, talking little, and wondering how it was that other students seemed able to converse with one another so naturally. Other kids knew she was smart, but at times she processed her ideas slowly, and could not express what she knew and get full credit for her intelligence. Slang was a mystery to her; sometimes her sister would clue her in, with the dig, “Under what rock have you been living?!”

After graduating from high school, Elizabeth studied biology at Jefferson Community College while living at home. She went by bus because she was afraid of learning to drive. She later continued her studies at the University of Louisville, taking a total of six years to complete her bachelor’s degree. One of her classes was in genetics. The lighter class load in college enabled her to concentrate her efforts and earn better grades. She made a couple of neurotypical friends, with whom she could go to the movies or enjoy other activities. One friend (not from college) was blind. At her mom’s insistence, Elizabeth had finally gotten her driver’s license, so she was able to drive her friend to their destinations.

After earning her college degree, Elizabeth continued to live at home, “not doing much of anything.” She tried working in a Wendy’s restaurant, but could not keep up the pace. A vocational rehab counselor helped her get a library job, which was o.k. She decided to train as an occupational therapist, based on a positive volunteer experience in a rehab center. She took some foundation courses at Spaulding University, but was not accepted into their OT program.

Elizabeth wanted to leave Louisville. Before Elizabeth was born, her mother had worked as a nanny in Cohasset, and she showed the young Elizabeth pictures of those years. “I was fascinated with the photos from that time in my mother’s life, and I knew I wanted to go to the place in the pictures.” In 1993, at age 28, she finally got to visit Massachusetts on a family vacation, and liked what she saw. In 1998, Elizabeth, her mother, and her sister moved up and settled in Quincy. Later, her mother returned to Louisville, but the two sisters stayed on in Quincy.

During her twenties Elizabeth began to date a little, but felt uncomfortable, as if she had to constantly pretend to be someone she was not. It felt like participating in a “masquerade.” She now realizes that she was still not quite ready for a relationship with a man.

Elizabeth enrolled at Bay State College to study for an OT assistant’s certificate. One of her classes was on developmental disabilities; her professor was familiar with autism spectrum disorders. Reading and hearing this material, Elizabeth thought, “That’s a ‘condition’? That sounds like me!” She read more, and asked her teacher what an adult with AS would look like. The teacher referred her to AANE. Dr. Rosenn did her neuropsychological evaluation, and confirmed her hunch that she did indeed have Asperger Syndrome.

Getting the AS diagnosis “made things make much more sense” to Elizabeth. She felt relief. Knowing she had AS explained so much about her life—and made it so much easier to explain herself to other people. Now she could tell them she was not deliberately acting aloof—that she did not intend to come across as inconsiderate or stuck up.

She also experienced sadness. She realized that she would have to give up her dream of becoming an occupational therapist. An OT needs to be able to “read” a patient and interact accordingly; during her clinical placements, Elizabeth found that she was struggling too hard with the social dimensions of the job. A kind academic dean in the Allied Health School ensured that, in place of the OT assistant’s degree, Elizabeth earned a degree in general medical studies. Another dream, of becoming a “big sister” to a young girl in need of a friend, also seemed out of reach (although AANE may be able to help her realize that dream one day).

On the balance, Elizabeth found that the diagnosis was a tool for making positive changes in her life. Understanding about AS “really helps so much,” Elizabeth says. Nowadays she has a better sense of what is realistic for her, both professionally and personally. She can better understand and accept herself, and thus feel more comfortable with other people.

Through the Massachusetts Rehabilitation Commission, she met rehab counselor Kim Lapine at Triangle, Inc. Kim found Elizabeth a temporary job reading material to Marie, a blind case worker at Triangle. This temp job led to a permanent job, and Elizabeth’s hours were recently increased to 30 per week. She has learned new skills and taken on additional responsibilities, including filing, faxing, mailings, and typing up documents on her new computer. Using a script, she also makes phone calls to invites people to attend special events at the Vision Center each month. She keeps the RSVP list and arranges rides for guests.

She gets along well with her colleagues; she appreciates that they are sensitive to each other’s differences. In a work environment where many people have various disabilities, she feels “no need to be perfect.” This is the first job Elizabeth has ever had where she feels she is “part of things.” She lets her colleagues know that she “may not always talk a lot” because of her mild autism. Her co-workers can understand and accept this explanation and behavior without judging or rejecting Elizabeth. The job—and her long commute—can be tiring. For the future, Elizabeth would like to earn more money. Health care, in particular, is a big expense. Overall, however, work is now a very positive part of Elizabeth’s life.

Another positive change is that Elizabeth finally felt ready to form a close relationship with a man. She first met James at an AANE event. Later, they got to spend more time together in a social skills group run by psychologist Barbara Rosenn and speech therapist Elsa Abele. Elizabeth noticed that James is a “sharp dresser,” something she appreciates.

Elsa used to pick up Elizabeth, James, and another student in Coolidge Corner, and give them a ride to class. One day, James surprised Elizabeth by asking her if she would like to go to a movie with him. She accepted. That first date led to many others.

Can two people with AS succeed as a couple? Well, there are actually certain advantages. For example, if either James or Elizabeth needs “a little bit of space”—some time to be alone—the other person understands and does not feel offended or wonder, “Doesn’t he like me any more?”

What is Elizabeth’s advice about relationships to other adults with AS? First of all, wait until you feel ready. Then, “Communicate, communicate, communicate!” It’s important not to make assumptions, since “it’s easy for us to misinterpret things.” Also: If you hurt the other person, be sure to say you are sorry.

Being part of a couple took some getting used to—Elizabeth found she had to expand her consciousness to think about James: “It’s not just about me any more—it’s about us.” Although this new way of thinking is not always easy, Elizabeth says it feels so good to know that James also “loves me and wants me to know it.” A bonus is how much she enjoys his warm family, who have welcomed her into their home on many occasions.

Even though it may not come naturally to you, or may go against the grain, Elizabeth advises that you tell your partner that you love him (or her)—don’t leave it unsaid or make your partner guess. Say “I’m glad you’re in my life.” Say “ ‘I love you’—how important those three words can be!” Even though communication may continue to require an extra effort for a person with AS, it is worth it to Elizabeth because “I want him to feel good, not feel hurt or neglected.”

What Elizabeth has learned from her relationship with James has also affected her other relationships. For example, she has become closer with her father. She wonders if he may be on the spectrum. While Elizabeth’s mother and brother—a successful salesman—are very much “people people,” her father is a man who needs more space, and has trouble connecting emotionally.

Elizabeth now says “I love you” to other people she cares about, such as her mother and her sister (to whom she has always felt really close). All through their lives, the sisters have helped one another, using their complementary skills. Today, thanks to Elizabeth’s increased ability to express herself, their relationship is closer than ever.