INLAND EMPIRE, CA. What is autism?
That was the first question I asked myself after I was invited by the TCB Flash Band to attend the 2013 Walk & Rock Autism. It is an annual event where the band plays with ETA, Chris Luna, to help raise funds for the local Southern California society. The band will be donating their time and talent again for the event.
I’ve learned autism covers a spectrum of “complex disorders of brain development” redefining the term to autism spectrum disorder or ASD. ASD includes the following disorders: Rett syndrome, childhood disintegrative disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger syndrome (http://www.autismspeaks.org/what-autism).
My interest in autism began after seeing a documentary about Carly Fleischmann. Like many folks unaffected by autism I was unaware of the disorder. My exposure to and knowledge regarding autism was limited to the fact Jenny McCarthy‘s son, Evan, is autistic, or rather was autistic. Moreover, autism seemed like the latest, trendy, celebrity social disorder Hollywood latched onto for its own superficial, altruistic purposes. Purposes I tend to ignore because I do not believe the motivations of the celebrity spokespersons are truly altruistic.
Carly Fleischmann made me pay closer attention to the fact she is a contradiction to what we see and know about autistic children/adults. For years, doctors, behaviorists, therapists, and her own parents relying on the diagnosis of these experts, believed she was mentally disabled or moderately retarded. Her behaviors of banging her head, rocking back and forth, slapping/hitting were presumably outside indicators of Carly’s supposed mental retardation.
People look at me and assume I am dumb, because I can’t talk…
What other conclusion could the experts and her family make since Carly could not speak? Her inner voice was silenced by the disconnect of her brain to her body keeping her mute until she sat in front of a computer and typed: HURT. HELP. Those few words were the beginning of a significant breakthrough to the mysteries of autism and a new beginning for Carly.
It turns out Carly is neither retarded, mute, or stupid. She is an intelligent, normal teen age girl whose body does not always cooperate with her brain. Her natural senses are heightened to uncomfortable levels for which she must find ways to drown out the exaggerations, otherwise it will drive her nuts. Carly is simply another human being dealing with life and its challenges, with a few added extraordinary challenges, as she travels along the road to adulthood.
Each individual with autism is unique. Many of those on the autism spectrum have exceptional abilities in visual skills, music and academic skills. About 40 percent have average to above average intellectual abilities. Indeed, many persons on the spectrum take deserved pride in their distinctive abilities and “atypical” ways of viewing the world. What Does It Mean to Be “On the Spectrum”?
Carly has a unique way of viewing the world, understanding it, then communicating it with the rest of us. Carly not only found her voice, but she has become the voice for every autistic child and adult. Carly doesn’t want pity. She wants understanding and to educate everyone about the mysteries of the autistic mind, body, and spirit. Her voice is being heard all over the world with the recent publication of her book: Carly’s Voice: Breaking Through Autism.
Kodi Lee is another unique teen. His challenges began at six days after his birth with emergency surgery to remove an intestinal obstruction known as Meckles Diverticulum. At age three months Kodi was diagnosed with Optic Nerve Hypoplasia (ONH) and declared legally blind. Then, at age 4½, Kodi is diagnosed with autism.
Like Carly, inside of Kodi was his inner voice of music. Unlike Carly, he is able to sing and play music because Kodi is an extremely rare prodigious savant in musical expression.
“There are probably fewer than 50 prodigious savants living worldwide at the present time…a prodigious savant is a person who manifests abilities that would be considered extraordinary even in a person who is not autistic,” said Darold Treffert, a Wisconsin psychiatrist who has studied savant syndrome for over 40 years. Plus, after a visit with Dr. Treffert, he was amazed by Kodi’s level of expertise in musical emotion and expression. He says he has never seen this before, making Kodi the only one in the world with this ability. (http://www.kodileerocks.com/kodi-music.html)
The word is, Kodi rocks! Chris Luna and the TCB Flash Band witnessed his unique musical talent at last year’s fundraiser. Kodi is appearing again at the 2013 Walk & Rock Autism fundraiser for the Inland Empire Autism Society.
What is autism? It’s a label for a population of children, men, and women with complex disorders of brain development. It’s a diagnosis to define the signs and symptoms of ASD and develop methods to assist with daily living, research the causes, and the hopeful prevention of autism for future generations. However, autism does not define who they are and their unique individuality. Like Carly and Kodi, the autistic child and adult have something to contribute to the world and only need to be given a way to share their voice.
The Walk & Rock Autism is September 21st at the Yucaipa Regional Park with events beginning at 8:00 a.m. Visit the Inland Society for Autism’s website or the Walk & Rock Autism website for more details. Come out and show your support, then rock it like Elvis with Chris Luna and the TCB Flash Band and jam with Kodi Lee.