Michael lived with his mother, father, brother and sister in a rural area of southern New Jersey surrounded by farmland. Everyone in his neighborhood knew him. Life was peaceful and safe and full of love.
Michael liked nothing better than spending hours in the swimming pool in his family’s backyard. When the weather was less conducive to swimming, he enjoyed seeking out a snack from the kitchen cupboard and a soda from the garage refrigerator, then following a well-worn trail in his yard or through the hallways of his home. He found great contentment in familiar routines, and as a result, his family knew pretty much where he was at any given point in time.
Michael had autism. Age 20 on his last birthday, he was a handsome young man with fair features and a contented, almost angelic aura about him. There were no surprises in Michael’s behavior, and Michael preferred his world to have no surprises, either.
Indeed, to make sense of this world, he created rituals. There was, for example, his return from school, which was to exit the school bus, enter his home through the front door, head down the hallway and through the kitchen, deposit school supplies in the living room and return to the kitchen for a snack. One day, however, Michael found the front door locked.
After a few moments of consternation, he circled the house and entered through the garage. Passing through the kitchen, he headed down the hallway to the front door, which he unlocked. He then retraced his steps— up the hallway, through the kitchen and garage, around to the front of the house. Retrieving the school supplies he’d left behind, he picked up where he’d left off, opening the front door, entering his house and ultimately completing the routine he’d performed for years. Minutes later he was enjoying his snack, a look of contentment revealing that his world was once again right. And safe.
I came to know Michael over the past year as his parents began to seek help in identifying and obtaining quality residential services for him. Both spoke sensitively and eloquently about the importance of their son having a safe haven outside of their home as he reached adulthood and they grew less capable of managing his daily needs. Their concern was for Michael’s health and safety after they are gone; their hope was that he would have a quality of life that would continue to stimulate, challenging him to greater and greater heights.
My role was to evaluate Michael’s current educational placement as well as his home situation and to make recommendations regarding residential services for him. I subsequently determined that Michael was an excellent candidate for residential placement and that in order for him to continue to receive an appropriate educational experience, such a placement must be in a program that provided consistency between day and residential settings. After much deliberation, the courts concurred. That ruling came on a Friday.
On the following Monday, Michael was traveling to school when his bus driver became distracted and passed through a stop sign. Michael’s minibus was hit broadside by a full-sized school bus. His bus driver was critically injured and approximately 20 students on the full-sized bus were also injured. Michael died instantly.
At his funeral, hundreds of family members, teachers, fellow students and friends came to bid him farewell. The room was filled with photographs depicting Michael’s brief life; family and friends alike spoke of their love for this remarkable young man.
Michael’s family chose to donate his brain tissue to the Autism Tissue Program (ATP) as a way of ensuring that his passing would help future generations of children who may develop autism. The ATP supports critical research into the causes of autism in order that we might reduce — and eventually eradicate — this serious developmental disorder that affects over 500,000 individuals like Michael in this country alone.
Michael’s life touched many people, including me. Michael’s death has the potential to impact many more. This gentle young man is now in a much safer place, and his legacy here continues. Goodbye, Michael, and thank you.
“The fact that we could do something right away helped. It is our hope that Michael’s life will benefit others.”
— Margeret, Michael’s Mother