In October 2013, a young man named Scott Lentine reached out to me to share his poetry, which examines his life with autism. The subject line was, “Possible comments from Marcia on my poems.” His writing delved into his deepest feelings expressing a yearning for acceptance and appreciation. (His poems can be found online at his blog.)
At the beginning of 2014, I put Scott’s story on my to-do list. With April as the official National Autism Awareness Month, I made a date to reconnect with him.
In a series of e-mails, Scott wrote to me about his quest to bring recognition to the obstacles facing those on the autistic spectrum. He informed me about his outreach efforts, and the fact that he has received support for his poetry from Boston journalists, celebrities, and autism advocates such as Dr. Margaret Bauman and John Elder Robison.
Scott described himself as a “26-year-old man with high-functioning autism (PDD-NOS/Asperger’s) from Billerica, Massachusetts.” He related that he had graduated from Merrimack College, magna cum laude. He received a Bachelor’s Degree in Religious Studies—with a minor in Biology.
Presently, Scott is working as an office intern at The Arc of Massachusetts in Waltham, which “provides services and supports to individuals with intellectual and developmental disabilities and their families on a case-by-case basis.” In his position, Scott is striving to inform and persuade lawmakers to pass “key disability resources legislation.” In addition, he is a clerical assistant in his father’s general law practice.
I interviewed Scott both by phone and e-mail. I was also able to speak with his mother, Maryanne Lentine, who gave me background information on her son’s path.
Ms. Lentine, an obstetric nurse, told me that at 18 months Scott lost eye contact and the twenty-five words that comprised his vocabulary. He became hyperactive, started spinning objects, and flapping. She said that it was not uncommon for boys to have their brains “grow dramatically in the first 18 months—and then regress.”
Scott received a complete evaluation at 21 months at the Boston Children’s Hospital, where he was diagnosed as being on the spectrum. Ms. Lentine said, “It was obvious that with no language, he was experiencing a clear cut regression.” Scott was immediately enrolled in an Early Intervention program. At that time, insurance companies were balking at paying for many of the services diagnosed children needed. So the Lentine family paid out-of-pocket for addition modalities like Applied Behavior Analysis (ABA), Speech, and later Occupational Therapy for Sensory Processing.
Scott’s language reemerged at 5 years 7 months. At that time he was enrolled in public school where he attended classes with a “shadow” aide, while being pulled out for “special ed” classes. Scott gravitated to numbers and the alphabet—and other subjects that he could classify. Disney movies, states, geography, and history were some of his favorite topics. His sensory challenges included dealing with changing clothes when the weather turned at each season, or only eating yellow or beige foods.
Remaining in public school with the assistance of an aide, he continued his homes services until the age of 14. In high school, he attended classes independently, making use of the “resource room.” A tremendous advantage for Scott was having his older brother, Brian, in the same school.
I asked Scott what he thought were the toughest obstacles facing young people on the spectrum today. He replied, “Some of the biggest challenges young people face include not being able to hold on to a long-term job, having few friends, and not always getting the help they need in high school and college.” He also pointed to a denial of health care coverage and insurance.
I inquired about the kind of job Scott was hoping to secure in the future. He said, “I would like to have a job in a hospital, lab setting, university or college setting, or with a non-profit organization that involves autism and disability causes.” Scott specifically seemed motivated to advocate on behalf of people with autism.
Already doing activist lobbying to educate and inform elected officials to pass key disability resources legislation, Scott gave me a run down on his most current accomplishments. He outlined:
“In terms of persuading legislators to pass legislation relating to autism and other developmental disabilities, I try to convince them to revise the “Turning 22” law in Massachusetts, which means that people with disabilities must phase out of the public educational system and move in to the real world. They often do not have adequate living conditions once they enter the real world. I also just convinced my State Senator Ken Donnelly, who represents my district, to pass the Autism Omnibus Bill when it is voted on the Senate. It passed overwhelmingly in the House. This bill would allow people with autism to get DDS (Disability Determination Services) housing and funding, as the current law only allows people with an under-70 IQ get to get housing. It would also expand employment training programs, and health care insurance access.”
Clearly, Scott has a multitude of talents to offer to society. Now it is up to society to perceive what he—and others on the autistic spectrum—can contribute.
Just a Normal Day
Just a Normal Day
Never knowing what to say
Never knowing what to do
Always looking for clues
Just a normal day
Totally perplexed with everyday life
Always on edge never certain
I wish I could lift this curtain
Needing to constantly satisfy my need for information
Always online searching for new revelations
Going from site to site
Obtaining new insights every night
Trying to connect with people my age
Attempting to reveal my unique vision
But ending up alone and unengaged
Feeling like my life needs a total revision
Just a normal day
Photos: Courtesy of Scott Lentine