In our family, we have now experienced 80 years of autism related disorders. Three generations have tried to figure out why their child, brother, sister, niece, or grandchild seemed to miss things that came naturally to other children their age. Three generations have struggled to connect, worked with an ever-shifting knowledge base and resources, and shared the frustrations and joys that come with special needs parenting.
The current generation is fortunate both in terms of resources and in being the most mildly impacted. There is so much hope. Yet this child, my nephew, still struggles. He will enter middle school with a high I.Q., yet lacking an understanding of some important and nuanced social interactions. He is highly verbal, yet struggles in the back and forth of conversation. He is ‘on the spectrum,’ but most people have no idea. He is strong in sports, he is seen as a fun kid, and he has always had one close friend. Doctors are supportive and informed and offer social therapies and language therapies and occupational therapies to help him succeed. I have every hope that he will.
My brother stands as the most severely impacted, in the generation before my nephew. He was my mother’s firstborn. Doctors dismissed her reports of him not wanting to be held and mimicking exact phrases as the neuroses of a first time mother. When he stopped speaking altogether at 27 months, she moved from being neurotic to being called a ‘refrigerator mother.’ I can assure you, she was anything but. He was finally diagnosed at age 4 with profound autism. He does not speak. His behavior is very challenging both for him and with him. He cannot live independently, but he received supportive services throughout his life. Though institutions dominated the landscape in the previous generation, by the time my brother was an adult, there were group homes that allowed him to live more as a neurotypical adult would. It was there that he learned to type to speak those words that had been trapped inside for so many years. He uses an Ipad. The keyboard allows us to hear his voice and proves to others that he has one.
The first generation where we can trace these issues back, occurred only 5 years after Hans Asperger reported on the distinct pattern in boy patients he’d seen. My uncle did not speak until he was 7 years old, and when he did, he spoke in full British-accented sentences, despite being fully American. He received no services. He went to regular Catholic School. He did live independently as an adult. He drove a taxi and had his own apartment, yet he never married and has no friends outside of family members. He was never officially diagnosed, not even as an adult, but you can spend minutes listening to him recall his last ten rounds of golf in intricate detail, and it’s a pretty compelling case for Asperger’s Disorder. He is now in the late stages of cancer. Looking back at his life and how he never received the supports and services the younger generations did, it’s tough not to wonder how different his path would have been had we understood what made his mind work differently. Although services are certainly not a magic wand, for some they are a ctirical bridge.
April is Autism Awareness Month. Acording to the newest CDC estimates, 1 child in 88 is now diagnosed with an autism-related disorder. To have high-quality services for these children is an excellent start. To be thoughtful as to how they will enter adulthood is absolutely critical. And to harness resources and research and work towards a world of acceptance and understanding of autism? Well, that would chart a new course for future generations.
Northwest Philly Parents is a partnership between Newsworks and Germantown Avenue Parents.