written January 10, 2016
Autism, 1989: There was institutional living for grown-ups unless parents could offer all of the familial support necessary for the entire life of their autistic child. There was no Internet for parents of newly-diagnosed children to research autism and find programs of treatment. I went to Villanova's library to look it up. When our pediatrician realized Greg might be autistic, he said that the time for treatment was between the ages of three and four. Antiquated belief, we know now. Another doctor asked ME to tell her about autism. Medications were not readily prescribed to control symptoms. We rarely slept because we could not be that horrible parent who gave sleeping pills to a toddler. Behavior modification was a new treatment with some success...not widely used. Sensory difficulties were well-known with some valid therapies used to remediate symptoms. Some people still believed that deficits existed in parents thus causing autism. I was the refrigerator mother who didn't love her child.
Inclusion was a new word and a new program used to describe educating special children in the same classroom as normal children. Parents who had more financial resources could find schools for their children with price tags of thousands per year, but parents of more limited resources had special education classes in the public education system in which our children could not receive the specialized, one on one services they needed. Some teachers believed that our children would never talk. They believed that our children would retain their diagnosis of mentally challenged for life. Classes to teach parents how to interact with their autistic children had just begun to appear.
Consolidated WAIVER funding was not available to help families cope with the expenses of hiring therapists. Or, if it was available, I certainly had no one to advise me about how to get it for my son. Insurance companies covered bills for medical issues only. Services for autistic children which included music therapy, sensory therapy, speech therapy and behavioral modification sessions were not covered. There were no state agencies to support beleaguered families. Divorce rates were high in families with an autistic child.
Autism was considered to be a lifelong disorder with little hope for change. "Rainman" was our teacher. My pediatric neurologist couldn't even say the word, " autism" to me at my first visit with Greg. Greg's first speech therapist used this expression repeatedly with me, " Children who present like Greg...." She couldn't say the word, either. We did not take our son to places where others might not understand or accept Greg's tantrums as he tried to find his place in a normal world. We had to advocate for our son alone because we had no idea that case managers existed for families who needed help.
We navigated our way through the newness of raising our special son, of coping with decisions that we had to make without a guidebook, of finding a place for our son that would ensure that he became a happy, productive adult.
Autism, 2016. Group homes support families whose reality does not include the ability to provide lifelong care for their child. Internet offers hundreds of treatment plans for parents to research and utilize. Physicians know how to communicate with autistic children. They know what questions to ask and what advice to give weary parents. Behavioral modification is offered as a degree at many universities. Its value in instructing and changing the lives of children with autism is now documented. We know that autism has many causes. The accused parent is finally off the hook. Phew.
Schools must now provide appropriate educational programs for our children. It's the law. Miraculously, our children can begin to communicate at an age! I have seen this. I cannot even count the nmber of workshops, seminars, courses and tutorials I have completed to learn more about how to help my son.
Funding is now more readily available. Insurance companies pay for behavioral therapies and more. Agencies abound! The incidence of autism is scaring everyone. We are rallying as a society to do something proactive now.
There is great potential for change in our children as they grow. Our son is a new man now that he is nearly thirty years of age. He does his own laundry. He bathes himself without verbal prompt. He even talks sometimes, limited, but he gets his meaning across, especially when there is chocolate around.
We fly with Greg. Last year, when we took him to the Grand Canyon, when he was about to break into his " I need to get home right now," tantrum, the attendant allowed us to board with the first class passengers! Society has changed for certain. We take him to restaurants, and if he blows out all the candles, the patrons or waiters just light them again. Today, I took him bowling and when he broke into his chant, the family of sixteen getting bowling shoes ahead of us did not even glance our way! We are accepted wherever we go. People smile at us. We still have to advocate for our son, but all parents do that. It's a new world.
If Jay can't find it, Greg does, in a flash! Autism might be lifelong, but the moments of joy in this life are priceless.