It is a common refrain among parents of newborns that “babies don’t come with instructions.” Similarly, there is certainly no handbook given to parents when their child receives a diagnosis of autism.
My son Connor was diagnosed on the autism spectrum at age three. After his diagnosis, when our grief and anger began to subside, my husband and I simply did the best we could. We visited doctors and neurologists, had tests performed and enrolled him in an Early Intervention program, followed by an Integrated Preschool.
When Connor was five years old, I insisted that he be enrolled in a typical kindergarten class with support, which proved disastrous. He began destroying materials, crying, and screaming to “get out.” We removed Connor from kindergarten and placed him in a Learning Center, a small class of students with a specialized staff who could focus on his needs. Although it was often frightening and intimidating to hear of Connor’s challenges and behaviors, we knew Connor would one day need to survive in society, not in a special educational bubble.
As Connor grew, his negative behaviors increased. We tried new doctors, new medications, and new reward systems at home and in school. Some strategies worked. Many did not. However, we came to understand that if he was busy, he was happy, so we kept him involved in Friday night dances and Saturday outings to movies and bowling. We were firm in our belief that he would succeed to the best of his abilities.
But there is a harsh reality every parent of an autistic child faces when their son or daughter approaches the age of 22. That’s when all the educational supports and services received under the federal Individuals with Disabilities Education Act (IDEA) vanishes. We worried what the next phase of Connor’s care would look like.
As Connor’s 22nd birthday approached, we began the daunting process of looking at adult programs. We ultimately had one nonnegotiable goal: Connor would be a productive member of society. We would find a program that gave his life meaning and purpose.
This journey led us to the Bridgewell Day program at Rosewood Drive in Danvers. Immediately, we could tell that specific needs of transitioning adults on the autism spectrum were being addressed, from the color-specific chairs used to distinguish one room from another, to the technology, including SMART Boards in each classroom and work opportunities. Once enrolled, Connor started to work on soft skills, such as waiting patiently, taking turns, and even cleaning the kitchen. These are skills he will need at every juncture of his life; these things are simple for many of us, but they are not for my son.
These new skills also offered him new opportunities. Connor successfully works part of each day, five days a week. Bridgewell has been proactive in finding employment opportunities for adults with autism, including recycling, delivering Meals on Wheels, filling vending machines, and more. These jobs give my son confidence, self-esteem, and a purpose in life.
Things recently changed again for Connor. He now lives in a supported Bridgewell home with four other young men with autism. He has learned to cook, do laundry, get along with roommates, advocate for himself with staff, and manage his money. Does he do these things alone? No. Bridgewell staff supports him every step of the way. But with that support, our son is happily living the independent life he should be.
Supporting individuals with special challenges is not easy. With an estimated 50,000 disabled children “aging out of the system” every year, this issue requires the focus and support of not just the government, but help from individuals and businesses. We need assistance providing programs, jobs, and homes for these young adults, and the funding to enable more programs like Rosewood Drive to provide caring and supportive staff.
By 2034, a million individuals with autism will have aged out and the demand for services will only increase. But right now, there are simply not enough Rosewoods to go around. Connor may have a disability, but he also has many abilities. Doesn’t every adult with autism deserve the same opportunity?
Cathy Johnson resides in Danvers, Massachusetts. She is a teacher and member of the Board of Directors of Bridgewell, a Lynnfield-based nonprofit dedicated to supporting individuals with developmental disabilities and other life challenges to direct their own lives, achieve personal and professional success, and remain active participants in society.
This article was featured in Issue 53 – Working Toward The Future