By Kim Stagliano (She has 3 autistic daughters)
Kim Stagliano has authored a novel and two books on parenting daughters with autism. She is managing editor of Age of Autism.
Today, you’ll be seeing a lot of blue: World monuments will be cast in blue lights, your co-workers will be wearing blue clothes, and companies will be hawking blue products. Why? April 2 is World Autism Awareness Day, when advocacy group Autism Speaks “celebrates” its international Light It Up Blue Campaign. But while you’ll be seeing blue everywhere, I’ll be seeing RED. The feel-good frippery of Light It Up Blue cloaks an often debilitating disorder in an air of festivity, with balloons, sparkling lights and pep rallies. The campaign implies autism is a party, rather than a crisis. For families living with autism, reality is far more sober, and their needs extend far beyond “awareness.”
I dread April, which has been designated as Autism Awareness Month. As mom to three young women with autism – ages 20, 18 and 14 – I eat, sleep and live autism every day. My youngest daughter, Bella, can’t speak a word and was abused on a school bus, leading to a criminal case. My oldest, Mia, had hundreds of grand mal seizures a year from ages 6 to 10. My middle child is wracked with anxiety. For all three, I have to cut their food, tend to their monthly feminine needs, and bathe them. They will need that daily living assistance forever; when I die, a stranger will have to do those things for them. That is why I bristle at the festive tone of April, the suggestion that the circumstances of my daughters’ existences are to be celebrated. For me, this should be a month of solemn acknowledgement and education about a global crisis. Yet, Autism Speaks talks about World Autism Awareness Day as an event that “celebrates the unique talents and skills of persons with autism.” I’m all for honoring the achievements of people with autism, but the term “unique talents and skills” hardly connotes a global crisis. That’s the tone increasingly used in conversations about this disorder. Some advocates suggest autism is advantageous – even a gift. Before backtracking on his comments last year, Jerry Seinfeld said he believed he was on the autism spectrum, casting it not as a disorder, but “an alternative mindset.” It made me angrier than the Soup Nazi. Let’s be clear: Autism is no walk in the park for those who have it, nor for their loved ones. The National Autism Association, the leader in autism safety information, reports that 48 percent of autistic children wander or run away from a safe environment, a rate nearly four times higher than their non-autistic siblings. Accidental drowning accounts for about 91 percent of deaths of autistic children under 14 years old after those wanderings. These children also face horrific bullying and teasing. For instance, an Ohio high school student with Asperger’s Syndrome, a type of autism, was the victim of an Ice Bucket Challenge “prank” (really, an assault) last year when three teens dumped a mixture of urine, tobacco and spit on his head. Even after high school, young adults with autism face a bleak quality of life, with lower employment rates than those with other disabilities. One study found that just 35 percent of autistic young adults had attended college and just 55 percent had been employed during their first six years after high school. I understand the impetus to raise awareness about autism. Much of the world does not think about autism 24-7 – at least not yet. Today, about one in 68 children is diagnosed with autism spectrum disorder, a sharp increase from the autism rate just a decade ago. It is the fastest growing developmental disorder, and MIT scientist Stephanie Seneff predicts half of children born in 2025 will be autistic. Certainly, a disorder so common deserves at least a month dedicated to educating people about its effects and raising money for critical social programs that can make autistic people’s lives happier, healthier and safer. But illuminating the Eiffel Tower in blue does more to promote an organization than to improve the lives of autistic people and their caretakers. Celebrating talents does little to educate the public on the intense challenges of the diagnosis and the tough aspects of living with the disability. What the autism community needs isn’t a party, but a sense of urgency and true crisis. They need advocates committed not only to getting them the acceptance they deserve, but also the critical help they require to survive, in the form of social programs, education, safety and employment opportunities.
If you’re compelled to contribute to Autism Awareness Month, I suggest you make a donation to a local organization that is actively helping families in your area. Instead of attending pep rallies and wearing blue bracelets, give to an organization that provides service dogs for autistic children orvolunteer as an autism buddy. If your child has a classmate on the spectrum, invite that classmate to your child’s next birthday party. You know that cashier at the grocery store who doesn’t look at you as she takes care of your order? Smile at her, even if she does not smile back. The best way we can support Autism Awareness Month is to turn it into AutismAction Month. People with autism deserve a bright – not just a blue – future.
Should Autism be Celebrated?
By Kim Stagliano (She has 3 autistic daughters)