In order to support my petition for a government sponsored autism awareness campaign, I have mailed letters to Richard Sorian, Assistant Secretary of the U.S. Department of Health & Human Services (HSS), and to Thomas R. Frieden, Director, Centers for Disease Control and Prevention (CDC). If you have already signed the petition, but would like to do more, I encourage you to address your own letter to both HSS and the CDC. Your personal journey is important, and we all deserve to be heard.
Here is a copy of my letter:
December 15, 2011
My name is Paula C* and I am the parent of a four-year old boy who has autism. I have created an online petition at www.change.org where I ask that you and your respective departments take the initiative to lead a national autism awareness campaign. The misconception in our society regarding autism disorders often results in delayed diagnosis, families restricted to enjoy public life, and employment discrimination. The time has come for our government to take responsibility in spreading awareness. This difficult task has been left for too long to parents and non-profit organizations, both groups with the most wonderful intentions, but with very limited resources to achieve such an important goal. This is how this lack of public awareness and education has affected my family.
My son AJ has a mild form of autism which affects his ability to speak, to socialize with children his age, and to tolerate public environments. Sensory integration challenges keep him from eating a varied diet, as he rejects certain food textures, and his limited communication skills keep him from telling me or my husband how he feels, what bothers him, and how we can make it better. Even with all these challenges, my son is perceived as “normal” to random people who briefly meet him each day, people who are not aware that autism is a spectrum disorder. My son is intelligent, and whenever others hear from his diagnosis, the information comes as a complete shock. I understand their feelings, because that’s how I felt when my son first started showing signs and symptoms. His diagnosis was delayed by nine months, because I waited for his speech development to “catch up,” and because he did not “look” autistic. The mistake was that my perception of autism symptoms was wrong. By doing that, I wasted valuable time in getting him the services he desperately needed.
Similar misconceptions make other people believe that my son’s public tantrums are the result of poor discipline and education at home. Nothing could be further away from the truth. Kids on the autism spectrum lack the skills to communicate what bothers them, and they rely on crying and yelling to attract their parents’ attention, and to ask for help. In addition to that, many kids on the spectrum are hyper sensitive to smell, noises, and sights, which overwhelms them in public to the point of a meltdown, no matter how old they are, or how they are supposed to be behaving. This issue affects my family life and the lives of many parents of kids with autism, as we often feel unwelcome in our society. Our families are spurned in restaurants, airports, airplanes, malls, and even in places of worship. We are left to either stay at home, dealing with our kids’ disabilities, or to suffer in public in a society that has no tolerance for kids like my own. As a parent, I worry endlessly about my son’s chances to be accepted in our society.
Our society’s lack of acceptance to neuro-diversity reduces my child opportunities and those of others like him to thrive as he grows older, to be accepted, and even to gain employment. When most people in our country think of autism, the first thought that crosses their minds is the image of Dustin Hoffman and the movie “Rain Man.” This misconception is both wrong and unacceptable, as it creates a wrong idea regarding what a person with autism can and cannot do. Members in our society need to know that individuals with autism can perform meaningful work with small and appropriate accommodations. As a matter of fact, many of them have valuable skills that people without autism do not have. They may have great skills such as, good memory, meticulous organization, and the ability to follow a plan to completion, among others. Our society needs to be educated and made aware of the realities of autism. I understand that the U.S. Department is currently working with important campaigns such as health coverage, bullying, and food safety. Please add autism awareness and tolerance to this list. It is extremely necessary.
The text of the online petition, which includes text from this letter, is listed below. I hope that by now you have received many more e-mails from people who have pledged their support to this necessary cause. We are all counting on you.
Please do not hesitate to contact me with any questions or comments. I look forward to your feedback.