- Personal Narratives: Parenting Children With Autism Spectrum Disorders Through the Transition to Adulthood
- Transition years: From Learning, Living and Loving to Maintenance and Mediocrity
What does every parent of an autistic child worry about the most? For those of us with severely affected children, the answer to that question is: “Who will care for my child and keep her safe when I am gone?”
I drove my daughter back to her “group home” for a scheduled drop off on Saturday. There was only one car in the driveway and the house van was gone. Lily was not happy about returning “home.” Agitated, she opened the door to the car, almost before it was stopped, ran to the back of the house, and up the fire escape stairs to the door of her third floor bathroom, as if she was avoiding going through the main living rooms of the house. I called up to her that there was no one at home and she came back down and pushed through the unlocked door. Racing ahead of me, she was already shed of her clothes and in the shower: her self–calming method that she used whenever returning to the house. Thirty minutes later, after three attempts to leave the shower and throwing up in the shower, she dressed and ran back out to our car. I played her favorite music, attempting to calm her anxiety. This transition, from home to “group home,” was increasingly difficult due to recent changes in staff and housemates. Having no one there to greet her was ratcheting up the anxiety level for both of us.
When the on–call manager came, Lily was so distraught that I asked for her medications and took her back home with me. Two days later she was calm enough and I was reassured enough to return her to the house. Somehow the house manager made the incident my fault. Perhaps I did react strongly, but on reflection, what triggered the strong reaction in me was the insecurity I felt at finding no one home. It seemed like a breach of trust. Like we were left, abandoned, our plans shattered and at the mercy of fate. Strong emotions for a little mix–up in communications (if that is what it was) but, nevertheless, there it is—how I felt and more to the point how my daughter felt.
I relate this story because it illustrates what has changed the most about our lives since Lily left her school and entered the world of adult services: missing is the feeling of trust and security that responsible caring people would keep Lily safe when my husband and I cannot.
My 25–year–old daughter Lily has severe autism. She was the most beautiful and easy baby imaginable and appeared to develop normally until she began to lose speech and have night terrors at 15 months of age. She was diagnosed initially with atypical autism, then pervasive developmental disorder not otherwise specified, and finally with autism at age four.
From age four to twenty–two, she attended a specialized school for autism where she received age level academics, therapies for speech, and training in self–care and independent living. She did not do well in academics nor did she regain her lost speech. She did learn to care for herself with assistance and, as important, she gained social and behavioral skills and learned to live with others in a social way. She [End Page E1] also learned recreational and vocational skills that would be transferrable to the community, such as bicycle riding, rollerblading, swimming and jogging. The philosophy of her school was to build self–esteem and confidence by teaching music, art and physical skills—in small steps, ensuring success, and then building on those skills.
In her last year at school, Lily was a happy and well–adjusted member of her small group of five young women living in a town house with support from trained school staff. She participated in job programs, earning money by recycling and working for Meals–On–Wheels. She went out into the community with her group...