I recently received an email from a high school student in Lexington, SC. Natalie Palumbo, 17, is a person we can all learn something from. Her life experience is both a wakeup call and example of what love and support really mean. Natalie came across my name when she read my story, "Autistic: Different vs. Disabled and Media Portrayal", about the image the public often gets of autism from the news-stories about high functioning kids who seem pretty normal.
Natalie's brother Anthony, 21, has autism and of course, it's had a dramatic impact on her life too. Natalie wrote to tell me about an art project that she did entitled, NOT Born This Way. The quality of her work speaks for itself and there is a chilling quotation from Beth Arky of the Child Mind Institute:
"For parents whose children were among the first wave diagnosed with Autism, the pressing issues have gone well beyond awareness. These parents face the harsh reality that when their children reach 21 or 22, alll the educational supports and services under the federal Individuals with Disabilities Education Act will vanish. This forced transition pushes them into the woefully lacking system for disabled adults."
This is the side of autism that no one is talking about. The experts and health officials who happily tell us that all the disabled children everywhere are the result of "better diagnosing," never have to prove it. No one has ever been able to show us a significant population of adults with autism-especially severe autism, whose symptoms are easily recognizable. It seems that doctors aren't doing "better diagnosing" when it comes to the adults. Officials and experts also don't have to show us where all these children will end up someday. If it's really "better diagnosing," young adults with autism will go where autistic adults have always gone—but no one knows where that is.
I was so impressed with Natalie's work that I asked to interview her about her life and her views on autism. Here's what she had to say.
Question: Your brother is obviously a big part of life. How has autism affected him?
My brother has low verbal autism. Anthony's speech is limited to short phrases to communicate his needs and desires. He is extremely echolalic, which for him is the rote repeating of dialogue from television, movies, and video games complete with gestures. The echolalia can go on for hours, and he will choose dialogue to match his mood. If he's angry, he might choose dialogue where someone is screaming. He has obsessive compulsive disorder, and can make the same request every few minutes for several hours. Anthony is lovable with a sense of humor. The challenge comes from his extremely repetitive and obsessive nature. Extreme patience must be applied to everyday life every minute of every day.
Question: What do you see ahead for Anthony?
Anthony does not grasp concepts. The idea of working a job, even when you don't feel like it, is beyond his thought process. He feels no social pressure to comply with authority. Anthony is good natured, which is the very quality that makes him vulnerable. He can't interpret intent or be wary of danger. With such limited language capability, he needs constant supervision. Anthony will not be able to live independently. My parents will take care of him, and when they can't, I will take over.
Question: What services are available?
Anthony is aging out of Special Education in June 2012. While services and programs were discussed, the consensus was that none of them were appropriate for someone with low verbal autism who needs constant supervision. There were no programs that met his specific needs. Anthony can be agreeable, but only when you can match his thought process, which takes lots of dedication. None of the programs were structured for individuals who needed constant mediation and supervision.
Question: On your work are the words, "NOT BORN THIS WAY." What do you mean by that?
Anthony was not born with autism. He was born healthy, and met all developmental milestones until 15 months when there were no words. Anthony suffered a severe allergic reaction to penicillin at 12 months. He had head to toe nickel sized hives, swollen joints, and high fever for four days. In spite of this, his vaccination schedule was adhered to without waiver. All of Anthony's vaccinations had the mercury preservative thimerosal. Anthony exhibited many mercury poisoning symptoms for years, only to be told that "many children with autism share these characteristics" and his symptoms were dismissed. This forced my parents to research on their own. As Anthony got older, fewer and fewer specialists wanted to help.
I wanted to discuss media portrayal of autism and how it differs from reality. I found that most people's perception of autism differed greatly from my experience. Many had never heard of a person with low or non verbal autism. The reality of meeting my brother would shock some and drive away others. Only a precious few asked questions and wanted to learn about him. As a sibling, I was often frustrated when a lesson plan included an "inspirational story" of a child with autism. The stories presented were always focused on someone who was functioning at the highest end of the spectrum and didn't resemble my brother at all. It frustrated me that high functioning autism was their understanding of the condition. The same students who were moved to tears over these stories showed no sympathy for my brother and me. Research guidelines required fact driven reporting. I could share my observations, but not present opinion as fact. For me, I wanted to be more educated about autism so I could be a more effective advocate for my brother.
Question: How has your life been different from the lives of your friends?
I've been raised my whole life to be a caregiver. My mother always said, "The autism doesn't care about being fair or whose turn it is, it just needs to be managed." She always made sure I was rewarded for accommodating my brother so we could have family time. Anthony had problems transitioning from one activity to another. He needed coaxing and transition items to feel comfortable. I thought all of this was normal until I was older and watched friends interacting with their siblings. At that point, I knew my life was different. I began drawing to cope with my loneliness. Anthony has his own way of speaking. We call them "Anthonyisms". He began asking me to draw for him by saying "getting drawing" and the name of the character. Drawing became a way we could communicate. My teachers recommended me to fine art programs, and I want to make visual arts in film and animation my career. Anthony inspires me to look at the world visually. The hardest part for me is deciding who to let in my life. I will meet someone I believe to be nice, and wonder about pursuing a friendship. Then I start thinking about preparing them for Anthony, and wondering if they'll be accepting of his autism. What if I let them into my life only to find out they have no compassion for my brother? What if they're not worth it? Before I make a friend, I have to expose all my pain. By the time I contemplate all this, I am exhausted. I want to protect my brother by surrounding him with understanding people. They are hard to find.
Question: What message do you have for people reading this?
The world is more expansive than the media. Not everything you see is the whole story. The media is a business, and they want to tell stories that fascinate and intrigue. The savant skills of high functioning autism can be compelling, but the high end of the spectrum is just one facet. Ignoring moderate and severe cases hinders medical progress, and much needed research. The counter campaigns against a cure for autism breaks my heart. They believe their high functioning status in the spectrum defines the condition. It would be like focusing on only the mildest forms of any illness, condition, or disease because they seem more media friendly, and ignore the fate of those more intensely affected. It would be shameful for its neglect. If you can argue against a cure, you obviously don't need one. For those who can't fight for themselves, they need us to never give up.
What Natalie talks about here is what life is like for countless thousands of families in America. The media, the medical community, and health officials are content to abandon all these children as victims of a mysterious disorder they can't understand, and therefore nothing is being done.
Imagine what this country will be like in 10 years. Stories about autism awareness and the latest genetic study will disappear. By then, the focus will be on what autism is doing to social services and the unimaginable cost. The demands of a generation of young adults with autism will vastly overshadow the impact of the retiring baby boomers. The truth is, you can't drastically change the demographics of a nation and just learn to live with it. It isn't normal and acceptable to lose a million children to a disorder no one heard about 25 years ago. Anthony is every child with autism aging out of the school system. There is nothing for them.
Anne Dachel is Media Editor for Age of Autism. You can subscribe to her news feed at www.AnneDachel.com