"Autism-Believe in the Future, from Infancy to Independence" is a positive comprehensive springboard to help everyone recognize the importance of meeting the unique needs and learning styles required for a person with autism to become a productive part of society. They cannot do it alone! I share with the reader HOW education, therapies, and socialization worked for our daughter, HOW we tackled adulthood, and HOW we survived as a family. It is not easy and a very long journey.
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.
We were threatened by doctors to institutionalize Robin, saying that was the only place she could get help. We ignored them! We made a commitment (to God actually), 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). Actually, this 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 consistent education and quality 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, we felt very successful and assumed Robin had reached her potential. Her initiating language was minimal, with one–and–two word sentences, but she did have language. She was appropriate in public most of the time, with me by her side. 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 advocates, she joined a social group for challenged adults and became a bagger at our local grocery store. We were moving forward again.
At 28 years old, Robin started biological interventions and 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. We could barely keep up with her dramatic changes. We removed my full guardianship and restore all her ‘rights’. She was promoted to cashier, driving her own car, moving into her own condominium, and developing a real social life in her community, that included mainstream CrossFit. She’s had a boyfriend, her best friend, for over nine years. She is now 46 years old and has been in her condo 16 years.
Continually moving forward, Robin went off Social Security Disability (SSDI) in 2015 so she could work more hours and be a true part of her workforce. She does not qualify for full-time employment, which she could do, but she feels much more successful with this simple change. This year she qualified and purchased employee health insurance. With all this independence, she has been able to keep her Home and Community Based Services (HCBS) waiver in our state. They provide a supported living coach and language therapy, both critical for her success.
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 often need to come from the home environment. Inappropriate behaviors are unacceptable in society and limit a person's opportunities. We cannot continually excuse inappropriate behaviors in individuals with autism. Every school IEP (Individual Education 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 the reader of this book will be energized by Robin’s autism story, and your successful autism journey will not be as long!