We never knew if Robin could develop beyond what we saw at infancy. Our first goal was simple- we just wanted to stop the wild screaming, rocking, and self-injurious behaviors.
Determined, we made a commitment. As long as she's progressing, regardless how slow, we'd keep pushing her forward. With this attitude, we began to recognize light bulb moments that stood out from her unusual behaviors. As an example, she would scream louder and harder when placed in “time out” for behavior safety (usually running). Robin wanted what she wanted, and she did not want confinement behind a baby gate at her bedroom doorway. Actually, getting mad was a positive thing for us. At least she was showing some sort of awareness, even if she was showing anger. During this same time period, we also began to realize that some days were actually worse than other days. We kept asking ourselves, why?
It wasn't until Robin was ten years old that we finally found forward-thinking professionals to help us help Robin. In addition to quality education and therapies, they emphasized self-image and socialization. Our family became Robin's case managers, and these professionals encouraged and directed Robin's program through her remaining school years.
At 22 years old, Robin's language was minimal and she was appropriate in public most of the time, with our family as her guide. We felt very successful, and we assumed Robin had reached her potential. My husband, Bob, retired and we moved to Florida as a three-some. This transition for Robin wasn't easy, and we watched, in disbelief, as she slowly regressed. Staying positive as her case managers, she joined a social group for challenged adults and became a bagger at our local grocery store.
At 28 years old, Robin started biological interventions, with three hours of language therapy a week, including many of the recent technology-based programs. Within two years, she was on her way to independence in adulthood. She was promoted to cashier, driving her own car, moving into her own condominium, and developing an active social life in her community. Three years ago, she started a second job as an assistant membership receptionist at our local YMCA. She's had a boyfriend for almost two years. Now 39 years old, she continues to amaze us.
Parents today must believe in the future for all of their children. Do not let anyone tell you that your child with autism will not be employed and a part of their community. Teaching everyday life lessons that include responsibility, assertiveness, friendship, and academics are critical. I believe that we cannot continually excuse inappropriate behaviors in individuals with autism. I believe that inappropriate behaviors are unacceptable in society and can limit a person's independence. Every school plan must have employment, community socialization and self-image as a goal, along with therapies and academics, starting at or before ten years old, not at sixteen years old. Yes, I know it's difficult, but the reward far outweighs the alternatives.
I hope readers of our book, Autism-Believe in the Future, from Infancy to Independence, will be energized by our family's autism roadmap, and your successful autism journey will not be as long!
Author of "Autism-Believe in the Future: From Infancy to Independence"
This is a modified version of an article published on the Autism-Believe in the Future website.
The views expressed in this story are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.