Each day presents an opportunity and a challenge for Colleen McFarland. The 22-year-old has Asperger’s syndrome, an autism spectrum disorder. But she dreams of becoming more independent.
Individuals with autism spectrum disorders find it difficult to form the friendships and social relationships necessary to hold jobs and live independently in today’s world.
With the help of her family and the Massachusetts General Hospital Lurie Center for Autism, Colleen is working on better managing her emotions and developing crucial skills that may someday help her to live apart from her parents.Through the center’s programs and resources, she is opening herself to new possibilities.
Individuals with autism spectrum disorders find it difficult to form the friendships and social relationships necessary to hold jobs and live independently in today’s world. They have trouble communicating and can get waylaid by intense preoccupations with objects. As a child, Colleen was fascinated by sticks. Now, she is interested in musical theatre and longs to live in New York City near Broadway.
Colleen has a quick smile and affable personality. She is modest. She downplays her accomplishments, which include graduating from high school and taking a class at a local community college.
She has the drive to push herself into situations that are uncomfortable for her. But after a long day of commuting to college, attending class and interacting with other students and the professor, Colleen often needs to retreat to the order of her own inner world. She shuts the door to her bedroom and sketches pictures of famous ballerinas. She takes comfort in isolation, knowing that her mother, Robin, and father, Peter, are just outside.
How the Lurie Center Helps Colleen
Robin is Colleen’s closest confidant because Colleen has trouble connecting with peers her age, who have moved on to college, careers and starting families. Colleen knows she faces obstacles that other young adults do not.
For Colleen and the growing number of young people with an autism spectrum disorder transitioning to adulthood, the experience can be emotional and difficult — for both them and their families. There are so many question marks and not many places to turn for guidance, medical care and support.
Robin and Peter must contend with finding the right path for Colleen, even as an autism spectrum disorder throws up unpredictable roadblocks.
The McFarlands have relied on the Lurie Center since they first brought Colleen, at age 10, to Mass General to see Katherine Martien, MD, a developmental pediatrician. As Colleen grew up, physicians and family support clinicians, alongside neuropsychologists at Mass General LEAP (Learning and Emotional Assessment Program) helped her handle anxiety and address challenges at home and school. As a teen, Colleen participated in the Lurie Center’s Aspire program summer transition skills programs. Through Aspire she also helped at an art camp and senior center. These experiences guided Colleen in developing her self-esteem and strengthening her social skills.
The Lurie Center is expanding its clinical care and services for adults. The center is one of a few offering more adult services.
Autism Spectrum Disorders and Adulthood
But as Colleen approached adulthood, the McFarlands found themselves navigating complicated service networks, many of which would no longer be available to their daughter after age 22. With the help of Lurie Center staff, advocates and education consultants, Colleen was able to continue her education at the Ivy Street School in Brookline.
To meet the needs of the growing number of children with autism spectrum disorders entering adulthood, the Lurie Center is expanding its clinical care and services for adults. Through Aspire, the center is one of a few offering more adult services including college boot camps, job training courses and support groups. And the staff provides support, guidance and advocacy services to parents who want to find appropriate education, skill training, housing and work for their children with autism spectrum disorders.
“We know the transition to adulthood can be challenging because services are limited, so at the Lurie Center, we strive to do everything possible to help our patients and their families,” says Christopher McDougle, MD, the Lurie Center’s director. “We conduct innovative research because we want to better understand the disorder and improve treatments. And, we advocate for public policy changes because we know families cannot do it alone.”
Facing an Autism Spectrum Disorder as a Family
Facing an autism spectrum disorder as a family, with Colleen’s older siblings, Lauren and Andrew, has changed their lives in so many ways, Robin says. She values the expertise and compassionate care that the Lurie Center staff has provided to help Colleen and her family overcome the hurdles.
“We realized Colleen’s great strengths were born from facing challenges every day,” says Robin McFarland, Colleen’s mother.
Colleen says the doctors at the Lurie Center and staff at Aspire respect her. She appreciates that they always talk to her first about treatment plans, then, include her parents. She is participating on a patient advisory group to provide important feedback. “I’m one of the few people who actually likes going to the doctor,” Colleen says.
On a warm, sunny June day, Colleen, in an emerald cap and gown, stood at a podium. She shared what she had learned at the Ivy School with her six fellow graduates, classmates and their families.
That day defined success for the McFarlands. “We realized Colleen’s great strengths were born from facing challenges every day,” Robin says. “We know, with time, she will find her place. Brave, creative and resilient people are just what the world needs.”