By Andrea Dressel
Earlier this spring, I got the chance to sit down with Elizabeth Hitchens and her parents, Janet and Ralph, to talk to them about Elizabeth’s journey as an adult living with FASD. Elizabeth is currently 28, and her parents adopted her from Russia when she was 5. They didn’t know at the time that she had FASD, and they will never know the extent to which she was prenatally exposed to alcohol. But as she grew up, cognitive and learning differences led them to believe that she may have a disability. It wasn’t until Elizabeth was eight years old that a geneticist informed Ralph and Janet that she may have FASD, which at the time was called fetal alcohol effect (FAE).
Talking with Elizabeth and hearing her tell her life story was a pleasure; she is articulate, honest, kind, and has a great sense of humor. The first thing we discussed was her education, and she was not shy to inform me that it had its ups and downs. FASD makes learning in a traditional classroom environment much more difficult, and she described to me the frustration she experienced trying to understand what the teacher was saying, “Being in the classroom with the teacher speaking… it was like a foreign language. They thought I understood but I didn’t, and that is why it’s hard for people like us with disabilities.” She went on to say that the bullying she faced in public school led her to attend a private middle school for children with disabilities, which was a much more positive experience. She graduated from a similar private high school in 2009.
Next, Elizabeth shared her employment experiences with me, and she explained that her FASD made it hard to hold a job. She said, “The boss would yell at me- or get very frustrated and I would say, “I’m sorry; I just didn’t realize.” Her time as a cashier in a convenience store, an employee in a fast food chain, and as a restaurant hostess all came to an end due to short-tempered bosses that didn’t take the time to understand Elizabeth’s differences. Typically, she only required a bit more explanation and training, but she wasn’t able to find such compassion in a mainstream work environment.
However, Elizabeth loves animals. She finds joy in them and is very good with them; she used to volunteer at an animal sanctuary and also helped care for farm animals when she lived in a group home for adults with disabilities in Montana. Janet echoed how much Elizabeth is drawn to animals and how much they are drawn to her: “They seem to sense something in her that they like.”
In addition to her care of animals, Elizabeth is also a dancer and actress. She has been an extra in a few productions, including the Disney Channel Movie Step Up 2. Although her FASD sometimes affects her memory, she has a knack for performing and memorization. Janet added, “Reading and math were hard for her [in school]. And yet the first time she got a script, when she was seven years old, for a summer theater program, she had her part memorized almost immediately, before anyone else.”
Elizabeth’s FASD continues to affect her day to day life, and in the past has affected her decision-making skills and led her to sneak out, steal from her parents, and enter into manipulative and harmful relationships. The most difficult part about FASD, according to Elizabeth, is that it is a hidden disability. “I don’t look like I have a disability” she said, “So people assume that I can do everything. When I try to explain it [to others], it’s hard, because I want to go out and do fun stuff like regular people my age.” Yet her experiences growing up and living with a disability have made her extraordinarily compassionate and understanding: “I have a strength that is empathy for people with disabilities and I don’t judge them. I like to hangout more with people with disabilities because I relate to them more.”
Later in life, Elizabeth would like to become a spokesperson for FASD and give a voice to everyone with FASD that doesn’t have support. She has begun to vocally advocate for a group home for adults living with FASD. Ralph added that an organization in Wisconsin is opening up an FASD-specific group home, but it is strictly for men. Elizabeth and her parents believe that a co-ed, adult group-home that specializes in caring for those with FASD is an immediate need, because it can be difficult for people with FASD to function in a group home that includes adults with many different disabilities. Elizabeth described that, in her experiences in Montana, the staff was generally uneducated about FASD and frequently confused the symptoms with those of Autism. Moreover, such a group home would help people like Elizabeth form deeper social connections. Elizabeth says that “People like us who have FASD, we like to relate to each other.” She sincerely hopes that a co-ed, FASD group home comes to fruition by the time her parents are too elderly to care for her, so she is able to move there and lead a happy and purposeful life.
When asked what advice that Ralph and Janet have for other parents who have just found out that their child has FASD, they advised to “Get a formal diagnosis as soon as you can… Make sure the school knows what the diagnosis means and educate everybody.” In general, the public is widely uneducated about this disorder. Stories like Elizabeth’s can help people understand some of the issues caused by FASD, and how important prevention is as well as support services for those with FASD.
FASDs are 100% preventable. To learn more, visit nofas.org, and please consider making a donation. A gift to NOFAS will help raise awareness as well as support individuals and families living with FASD.