It feels like a distant memory today, but two and a half years ago I feared my life was about to negatively change forever. After weeks of agonizingly reading psychology articles and searching every video I could find on YouTube of children exhibiting the same symptoms, I mustered up enough courage to tell my husband that I believed our son had autism. He dismissed my fears as an overzealous mom, but I pressed for early intervention anyway. After over a year of appointments with specialists, we had a diagnosis of classic autism. Every person I met from that day on reluctantly apologized for this unfortunate twist in fate. People who used to greet us with smiles no longer acknowledged his presence. It was as if I packed him into a bubble—containing his cooties because the outside world feared his awful disease. Left spinning in a world of somber stories of crying children, self-help books listing instructions on how to fix your newly broken life, and surrounded by mothers pressing for controversial cures, I stumbled across a concept that mirrored my feelings about our diagnosis: Neurodiversity. Although the internet told me that our life was over, I still woke every day to the same loving boy that always greeted me. By age two, he hadn’t yet spoken my name, but he undoubtedly knew me. I quickly realized that intolerance of his differences was the root of our anguish, not autism itself.
What is Neurodiversity?
Neurodiversity is the idea that individuals with developmental differences should be accepted as they are, rather than cured or trained to act as typical people do. Parents today are subjecting their young autistic children to hyperbaric chambers, anti-psychotic medications, chauffeuring them to behavioral therapists designed to teach them how to act “normal,” and modifying their diets in hopes of unlocking the real soul that occupies their child. As controversial as Neurodiversity and acceptance of the disorder may be, it is gaining momentum as a social movement within special needs communities. (2.) Is there really anything wrong with being different?
Neurodiversity is a new concept, pushing against the norm of doctors finding ways to rewire the brain of your child in hopes of making him your average Joe. The actual word neurodiversity wasn’t even seen in print until 1997. (1.) As autism rates continue to grow at skyrocketing numbers, about one in eighty-eight children, parents who receive this diagnosis for their off-beat child are led to believe that they will amount to nothing more than a friendly Wal-Mart door greeter handing out smiley face stickers to children for minimum wage. This stigma is untrue, and harmful to those who carry the diagnosis. Individuals with autism are capable of anything, and they are capable of it just the way they are, no magic cure necessary.
The neurodiversity movement is thought to have been started by Jim Sinclair, an autistic man who spoke to families living with the disorder at a Toronto conference in 1993, urging parents to accept their children. (1.) He stated that “Autism is a way of being. It is pervasive; it colors every experience, every sensation, perception, thought, emotion, and encounter. It is not possible to separate the person from the autism.” (5.) Only recently have autistic communities and groups been led by individuals with the diagnosis, and they are speaking out for acceptance and a fair chance at life as everyone else knows it.
Why it's Important
The media in America describes autism as an epidemic—snatching the soul of your child and leaving you to raise a hollow shell of a human being who is void of emotion. A child who won’t hug, kiss, or ever love you. Government websites describe autism as devastating, and it has been compared to both September 11th and AIDS. (1.) A Canadian “advocate” for the disorder once stated that autism is worse than cancer, but only because people with autism have normal lifespans. (1) We wouldn’t stand for such hate speech in reference to people with disabilities like Down Syndrome or Cerebral Palsy, yet we stand silent alongside our autistic counterparts and pump money into research to rid ourselves of it based on the false idea that they are robotic and meaningless beings.
The advocacy group Autism Speaks promotes the idea that autistic individuals need a cure to be contributing members of society. In a video on their website, used as a resource for parents coping with the diagnosis, they feature a somber story of a mother who contemplates killing herself and her autistic daughter. She eventually decides against murder-suicide, but only after thinking of how this decision would impact her other living non-autistic child. Autism Speaks is arguably the most well-known group “advocating” for people with autism, yet not a single member of their executive board is autistic, or has a family member with the disorder. (6.) Another popular video featured on their website titled “I am Autism” states “I am Autism. I know where you live, I live there too. I work faster than pediatric AIDS, cancer and diabetes combined, and if you are happily married, I will make sure that your marriage fails.” (6.) These messages demonize and harm families and individuals on the autism spectrum. Eradicating the autism in everyone with its diagnosis is not a solution that leads to a meaningful life.
"A Canadian “advocate” for the disorder once stated that autism is worse than cancer, but only because people with autism have normal lifespans."
If Autism Speaks had their way, great minds like Temple Grandin would no longer exist. Grandin, a Ph.D. and autistic adult, outspokenly embraces her diagnosis. At the age of two, Grandin was considered a low functioning child with no language ability and severe pervasive developmental delays. Her parents fought against having her institutionalized, embracing her as she was and helping her gain language ability through speech therapy. As an adult, Grandin works to provide humane treatment and handling of livestock. She insists that her autism is part of who she is, and if given the choice, she would not take it away. She encourages people to not get hung up on labels of a diagnosis and to accept the individual within. She continually advocates for people with autism and is the Associate Professor of Animal Sciences at Colorado State University. (3.)
The idea of neurodiversity has caused an inner-divide within the autism community, but the growing number of advocacy groups are rallying behind it. Ari Ne’eman, director of The Autistic Self-Advocacy Network (ASAN), released this mission statement:
“ASAN seeks to advance the idea of neurological diversity, putting forward the concept that the goal of autism advocacy should not be a world without Autistic people. Instead, it should be a world in which Autistic people enjoy the same access, rights and opportunities as all other citizens. Working in fields such as public policy, media representation, research and systems change, ASAN hopes to empower Autistic people across the world to take control of their own lives and the future of our common community. Nothing About Us, Without Us!” (4.)
Ne’eman, a twenty-two year old on the autism spectrum, was appointed to the National Council of Disability by Barack Obama in 2009. The idea that autism needs to be cured essentially means that people like Ari Ne’eman cannot live meaningful lives as they are, an idea that he proves to be false every day. Although his confirmation to the Senate is a great step forward in the civil rights movement for people with disabilities, Ne’eman has been harassed and his life was even threatened for his stance on neurodiversity upon being appointed to serve. (4.)
Those who continue to push for a cure feel that neurodiversity cannot exist without impending on research. Although there is no known cause, research is offering the ability to identify genetic markers, leading us down a path where parents may one day have a choice to not take a chance and abort a fetus showing predisposition. (4.) We cannot contribute as a society to the prevention the next Ari Ne’eman or Temple Grandin because of our fear and intolerance of differences.
People who are diagnosed with autism can make great strides and improve their lives if given the right opportunities through support, acceptance and encouragement. More importantly, why do we feel the need to put restrictions on the abilities and quality of life that autistic adults lead based on a label that we have given them in the first place? Rather than limit the autistic community, we should be lifting them up, encouraging them to achieve their goals, even if their greatest goal is to one day live without the assistance of their parents, or to drive a car. Maybe they strive to be a doctor or an author. How can we restrict them on the basis of our stigmas? Who are we to judge such a life?
When new people meet us and learn of my son’s diagnosis, that immediate shift to a negative feeling of pity begins, even if up until that point they viewed him as a normal boy. This is the mindset we have created in America. Anyone who deviates from the All-American standard that we have set for ourselves is a freak in dire need of modification. Sure, parents are usually overwhelmed and confused by a diagnosis of autism, but how beneficial would it be to their children if internet searches as they are reaching for support shed light on positive stories of families embracing their loved ones instead of wishing they did not exist at all? Neurodiversity doesn’t mean that people with autism never get a chance to improve; it means that we accept them as they are on their journey.
"Nothing About Us, Without Us!”
1.) Gernsbacher, Morton Ann. “Autistics Need Acceptance, Not Cure.” autistics.org. Wisconsin State Journal, 24 2004. Web. 25 Nov 2012. <http://archive.autistics.org/library/acceptance.html>.
2.) Harmon, Amy. “Neurodiversity Forever; The Disability Movement Turns to Brains.” Week in Review. The New York Times, 9 May 2004. Web. 29 Nov. 2012. <http://www.nytimes.com/2004/05/09/weekinreview/neurodiversity-forever-the disability-movement-turns-to-brains.html?sec=health>.
3.) Grandin, Temple. “Temple Grandin, Ph.D.” grandin.com. N.p. Web. 25 Nov 2012. <http://www.grandin.com/temple.html>.
3.) Mofitt, Susan. “Neurodiversity vs Disorder: The Other Great Autism Divide.” autismkey.com. N.p., 23 2011. Web. 25 Nov 2012. <http://www.autismkey.com/neurodiversity-vs-disorder-the-other-great-divide-of- autism/>.
4.) Sinclair, Jim. “Don’t Mourn for Us.” autreat.com. N.p., 26 2001. Web. 25 Nov 2012. <http://www.autreat.com/dont_mourn.html>.
5.) Zide, Jeffery. “Autism Speaks Does Not Represent the Voices of Autistic People.” http://sundial.csun.edu. N.p., 23 2012. Web. 25 Nov 2012. <http://sundial.csun.edu/2012/04/autism-speaks-does-not-represent-the-voices-of- autistic-people/>.