By Natalie Palumbo
As a younger sibling of a 21 year old young man with autism, I was recently asked to give my perspective on a story about services for people with autism beyond high school in Vermont, as shown in this story from April 27, 2012.
First of all, I think it’s wonderful that programs are being developed beyond high school to further train and improve quality of life. But, my family lives in South Carolina and I can tell you that unless more states adopt this philosophy, the rest of the country remains at a standstill. People with low and non-verbal autism, like my brother, will age out of high school without any services available to them. In addition, the increased occurrence of autism will place an exceptional burden on those states with services as more and more families seeking support move where they can access them.
It bothered me that in the article, the increase in autism is mentioned with no concern. The writers at the Brattleboro (VT) Reformer talked about the expectation that services will increase along with the numbers, but there are no guarantees.
I would have liked to know more about Ben Davis and his mother, Lora Barrows, who were talked about in the article. It seemed that the piece was too brief for me to make a personal connection. I wanted to identify with their story, but I didn’t get enough information to relate my life to their experience.
I was struck by the inference that an autism diagnosis brought relief. “Before Lora Barrows' son received his diagnosis of autism spectrum disorder, the family's life was filled with confusion, frustration and uncertainty.”
My brother was diagnosed with "severe communicative disorder with autistic tendencies" at age three and officially given an autism diagnosis at age five. When my mother first heard the word “autism,” only three references came to mind, the Who’s Rock Opera “Tommy,” the little boy Tommy from St. Elsewhere, and Rain Man. My brother Anthony didn’t resemble any of these characters. I witnessed doctors being blasé about their lack of knowledge, some weren’t interested in helping, and only an exceptional few let my parents bring them research. We never felt like we had any real understanding of what the future held.
In our experience, the confusion, frustration, and uncertainty lasted long after my brother’s diagnosis. We struggled to help him with daily living, and we never stopped trying to improve our quality of life as a family. Fitting in was never possible, and faking it was never easy. We put on our best face, and did our best job.
The article further stated that, “The diagnosis was a relief, in a way, Barrows said, because it at least allowed her to begin lining up services for her son and the diagnosis helped her get a better understanding of what the near future held.“
Getting services for my brother wasn’t easy. They expected Anthony to behave like someone “speech delayed” rather than someone with low verbal autism. They expected him to understand language receptively, yet not able to talk. What they got was an energetic boy who had sensory integration issues along with expressive and receptive language severely and equally delayed.
Anthony has always been beautiful. Because he looked “normal,” they expected him to act normal. Many people in and out of school accused our family of making excuses for Anthony because he was physically perfect. They did not see a disability, so they did not expect a disability. We had to prove our credibility all the time, so we did.
The story from Vermont doesn’t give us enough personal information. The strife of the family is minimized to only a few sentences. I can’t determine if progress towards low and non-verbal people with autism are even being addressed when I know so little about Ben, the person mentioned in the story.
It makes me question if needs for people like my brother are actually being addressed. Although, I have to say I am encouraged that Vermont recognizes a need for services beyond high school. As Anthony’s only sibling, it makes me more hopeful.
However, why isn’t anyone asking the big question, WHY?!
Why is autism on the rise? What are the common symptoms among kids with autism? What do they mirror? What are the possible connections? Why is there more emphasis on trying to disprove a cause than find a cause? Why is there this increasing need for services for a disorder that keeps growing?
If autism was food poisoning, people would DEMAND to know!
The article mentions “more and more public schools have developed programs to address the growing public health challenge, and high schools now are developing programs to help teenagers with autism spectrum disorders get ready for life beyond high school.”
What about the cases of low and non-verbal autism who can’t work or live independently? How will these families cope? Who will tell their story? The article also refers to “society’s growing acceptance and understanding of the disorder.”
For us, growing acceptance and understanding completely depended on the circumstances. When Anthony was unable to comply with socially acceptable behavior, society complained. Growing acceptance was not what I observed growing up. Friends, family, medical professionals, and teachers depended on my parents and me to help them understand Anthony.
Teachers could be nice, but they didn’t always understand what motivated Anthony. Sometimes they couldn’t grasp it. It wasn’t until Anthony got to high school that we found teachers and administrators that were helpful and understanding. We still needed to explain Anthony to them, but they supported our efforts at home. We worked like a team.
The article closes with an ominous quote regarding students aging out of services. "Sometimes families are not prepared for the transition and they go out in the morning to catch the bus, but the bus isn't coming anymore."
What if the bus passed you by?
This quote trivializes our lives. My heart just sank. So, ready or not, in the end the schools, just like the medical community, leave families like ours behind. How can that be acceptable with the number of people diagnosed with autism increasing exponentially? What happens tomorrow? Buses won’t be the only things disappearing. There will have to be family members who will need to become fulltime caregivers. First it will be the parents, and eventually siblings, should they be lucky enough to have siblings. I can only say, I’m grateful I exist for my parents, and especially for Anthony.
Natalie Palumbo is a high school student, younger sister to a brother with autism, and Contributing Editor for Age of Autism. Visit her art website at Deviant Art.