One of my favorite college professors once remarked that sometimes good intentions are not enough. Last week’s Communication Shutdown, which encouraged people not to use Twitter or Facebook for one day, was an example of how good intentions may not always be enough. Sponsored by several autism groups around the world, including the National Autism Association, the idea behind this social network blackout day was to make people realize how difficult communication is for those with autism. Moreover, two goals of this effort were to raise funds and to increase awareness for autism, both of which I heartily applaud and greatly appreciate. However, I read several comments and blogs from adults on the autism spectrum who noted that refraining from using online communication posed a significant hardship because the Internet allows them to socialize comfortably. Having raised a child with autism for nearly nineteen years, I believe that silence is not the answer when it comes to making people aware of the challenges autism presents. Rather, we need to shout from the rooftops how this autism epidemic has gone from 1 in 10,000 children to 1 in 91 children in a reasonably short period of time, and yet significant progress is not being made as to how to help these children. Limiting access on the Internet no more makes one aware of what it is like to struggle with the communication issues autism presents than driving a car fast makes one a NASCAR driver. Consequently, I opted not to participate in Communication Shutdown Day and continued to keep contact with my Facebook friends, several of whom are fellow autism moms.
As a parent of a special needs child, when I have read about disability awareness activities at schools, I have found them condescending and even offensive. Often the newspaper depicts healthy, typical teenagers riding in wheelchairs, having their eyes blindfolded, and/or wearing headphones to simulate mobility issues, blindness, and hearing impairment. Usually, the teenagers participating in these activities are smiling and laughing, seeing the experience as fun. However, having a disability is neither fun nor funny. Certainly, many individuals with disabilities learn to overcome the issues that make their lives challenging and often do so with positive attitudes. Nonetheless, pretending to have special needs for a few hours does not make one truly aware of what living with a disability entails, nor does it create empathy toward students who are different, in my opinion. If schools and organizations really want to make students aware and sympathetic toward those with disabilities, they should instead invite speakers to talk with the students about what life with a disability is truly like. For example, they should know that their sharpening pencils and erasing errors on paper sound much louder to a fellow student with sensory issues; perhaps fingernails scratched on a chalkboard would make them appreciate how this feels. Similarly, the blinking of fluorescent lights may be imperceptible to them, but for a child with autism, the flashing may be like that of a strobe light, complete with a buzzing noise. I could tell of how I watched Alex as a preschooler desperately trying to tell me something but was unable to find the words, his mouth open in a soundless cry as his eyes and mine filled with tears of helplessness. Of course, riding around in a wheelchair one doesn’t really need probably appeals more to most teens than any of my suggestions would.
Certainly we need to give those with autism a voice. Temple Grandin and other adults with autism who have shared their experiences have provided valuable resources so that others can understand how these unique minds function. We feel blessed that Alex, unlike many children with autism, can verbalize what he’s thinking and feeling so that we have a glimpse of what is going on in his mind. Other children with autism cannot tell others when they are scared, in pain, or angry; only their cries can suggest their distress. Until our children with autism can express their needs, we parents must advocate for them, to be their voices until they can speak. The Internet provides the perfect vehicle to share our voices, to tell others what life with autism is and is not. Until Alex can tell his own story—and someday I believe he will—we will keep telling it for him so that others can understand the challenges he has faced and the triumphs he has experienced as he has overcome the obstacles autism put in his path.
“Listen to my voice in the morning, Lord. Each morning I bring my requests to you and wait expectantly.” Psalm 5:3