"It's supposed to be worse than being blind, not being able to communicate," said my mom, Debbie Hastings. I wouldn't know because my older brother, William, can't tell me what it's like to be on the spectrum.
National Autism Awareness Month has come to a close, but families of people with autism are aware of this pervasive disorder 24/7, 365 days a year.
William was diagnosed when he was six years old in 1990, the year I was born. At that time, one in every 10,000 people was diagnosed with autism, according to the Centers for Disease Control and Prevention. The huge leap to one in every 110 can be, at least partially, attributed to a 1992 manual released by the American Psychiatric Association that refined the diagnostic criteria for autism disorder, creating the autism spectrum. An individual could be mildly autistic or severely autistic according to variations in a set of symptom: poor social skills, repetitive behavior and language impairment.
My brother? Severely autistic. He's what professionals call "classic" autism.
But, classic autism isn't what people always think of when they think of the disorder. When I tell people about my brother, they ask if he is a savant and has Asperger's syndrome, a form of high-functioning autism. People with high-functioning autism can go on to do great things. They star in Blade Runner (Daryl Hannah), invent Pokémon (Satoshi Tajiri), become Nobel Laureates in economics (Vernon Smith) and design animal handling systems (Temple Grandin).
I don't know my brother's full potential. The great things he's done are subtle: having a hearty laugh and making people think before they speak. So far he hasn't mastered life goals others find simple to achieve, such as writing his name, crossing the street by himself or cooking his own meals. For my parents, they feel William's problems are made more challenging by mental retardation, violence, depression, overeating and sensory problems - all much more pervasive in low-functioning individuals such as my brother. Surrounded by support, he is 26 and lives at home.
But my dad, David Hastings, thinks the spectrum has become too broad, that anyone with a little social deficit can earn the label.
Mary Betz, executive director of the Autism Society of Illinois, says the diagnosis for Asperger's is entirely different from autism. Autism sometimes can be diagnosed as young as 12 months, according to a University of California-San Diego study released last month.
Asperger's can't be diagnosed until later in life, because Asperger's doesn't deal with language development. Individuals with Asperger's are characterized by social problems; they are self-absorbed.
"The diagnosis is devastating in itself whether it's high- or low-functioning autism," Betz says.
Autism is more prevalent because of environmental triggers, she says. Our food and water change the way our brain functions. Ultimately, the cause is unknown, but Betz is certain that autism is increasing - not just the diagnosis. She adds that other developmental disabilities are on the rise: 15 million children and adults in the U.S. have a learning disability.
When I entered school and started realizing that my brother was different from me, the questions from my peers started flooding in. What's wrong with your brother? Why does he act like that?
Usually, they didn't have to ask any questions. I could see in their eyes they thought something was off. I would tell them "his brain is different" and that was all I could muster.
My understanding of autism and my brother has become more sophisticated. It can be difficult going through the different types of autism, and explaining to people that William won't live independently during his lifetime or become a frontrunner on American Idol, like other, higher-functioning individuals. (Even though William does have an excellent memory and enthusiasm for kitschy songs.)
I lived with it and didn't understand it myself. The moment when I "passed" William in terms of maturity - and I was only six - gave me an eerie feeling I can't shake off, years later. Even when I'm standing next to William, I still feel as though I've left him behind.
"When you have a disease at some point there comes a closure. That's not the case with autism," Betz says. "The grieving process continually goes in a circle."
No matter where people lie on the autism spectrum, they receive education services until they turn 21. And afterwards?
"Abandoned, totally abandoned," Dad says.
Lower functioning individuals need continuous support in order to lead fulfilling lives. The problem is, those services aren't readily available.
Illinois has a 14-and-a-half year waiting list for adults with disabilities to receive services, Betz says.
No cure, no help, no full understanding. Am I hasty in saying that autism is one of the scariest disabilities out there? Regardless of whether the numbers are accurate, this group of people with special needs is suffering from a debilitating disease.
I will always see my brother as one in a million. As for the stats on the spectrum - who knows?
- blog by Patty Hastings, graduate student reporter, Medill School of Journalism, Northwestern University