World Autism Awareness Day hits me like a ton of bricks every year. As the mother of a child with autism, there isn't another day I loathe like April 2nd. Autism Speaks proudly proclaims on their website: "Every year, autism organizations around the world celebrate the day with unique fundraising and awareness-raising events. How will you celebrate?"
Awareness is one thing, but I recoil at the assumption that my son and I will be celebrating the immense suffering he has endured since autism came into our lives. Each year, I mark the day by cringing as I drive past blue porch lights and pulling my blinds closed as neighborhood kids hop off the school bus in blue shirts. I know one thing for sure: the celebratory tone of April 2nd directly contrasts the reality of day-to-day life for many with autism. It doesn’t feel like a day that supports my son and those like him. It feels like a kick in the face.
A small sliver of the autism spectrum works happily in Silicon Valley, comfortable in their own skin, able to overcome their challenges and function successfully in the world. Some have genius IQs and special talents. They celebrate their abilities. I celebrate them too. Those at this end of the autism spectrum however, are not reflective of the entire autism community by any stretch of the imagination.
At the opposite end of the autism spectrum, parents are diapering their teenagers. Distressed children are literally banging their heads against walls. Parents are cleaning feces from furniture, carpet, and fingernails daily. Families are trying to function despite extreme sleep deprivation. Hyper-vigilant parents are turning their backs for a second and losing their beloved children to drowning.
I have a real beef with the notion of celebrating autism when 22% of children with autism develop epilepsy [1] and 70% experience gastrointestinal problems [2]. In a recent study in the Lancet, two-thirds of adults with Asperger Syndrome, now part of the autism spectrum, reported considering suicide. 35% had made specific plans or an attempt [3]. Another study showed children with autism were three times more likely than their typically developing siblings to be bullied [4]. Children with developmental disabilities have a substantially increased risk of becoming victims of sexual abuse [5]. Which of these grim statistics are we called to celebrate?
The subtype of autism that is acknowledged April 2nd is quirky, brilliant, and content, but that isn’t the reality of autism for a large portion of the autism spectrum and it isn't a reality for my son. In fact, it isn’t even a reality by formal diagnostic standards.
Autism as defined by the Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-5), is characterized by deficits and impairments. Deficits must be present in the areas of social communication and social interaction across all contexts. Furthermore, individuals must show evidence of restricted, repetitive patterns of behavior, interests, or activities. “Quirky” individuals don’t meet criteria for an autism spectrum diagnosis. The DSM-5 is clear that diagnosis of autism strictly requires symptoms that limit and impair everyday functioning. Looking line by line through the DSM, one is hard pressed to find anything to celebrate. Nowhere in the DSM is autism defined by any savant-like abilities and talents nor a unique way of looking at the world. Though individuals with autism certainly have unique positive attributes just like anyone else, autism itself is formally defined by deficits and impairment alone.
The false constructs celebrated on World Autism Awareness Day are stereotypes that apply only to a small fraction of the autism community. Meanwhile, the experiences of a large portion of the autism spectrum are ignored and marginalized. Those with autism deserve better than to have their challenges invalidated by celebration and their unique abilities and talents as individual human beings trivialized under the umbrella of autism.
Awareness days serve to educate the public on diabetes, multiple sclerosis, rheumatoid arthritis, maternal depression, and AIDS. It is understood that suffering and challenges are an inherent part of these conditions. A call to celebrate depression would be dismissed as cruel. Annual multiple sclerosis walks raise funds for research but certainly nobody is delusional enough to suggest we celebrate it.
On April 2nd, I won’t wake up and celebrate autism. I will honor the truth that autism has been a tremendous burden for my son. I will acknowledge how hard it has been for our family. I will not perpetuate the myth that autism is a gift. What I will do is celebrate my son for who he is. I’ll page through his artwork, amazed by his ability to capture action and nuance. I’ll sneak out of his room when he falls asleep, but not without giving him a kiss and marveling at what a beautiful and sensitive soul he is. I’ll watch in awe of his determination as he exhausts himself to accomplish things that come naturally to most. I'll celebrate my firstborn son and I'll celebrate my love for him. But I won't celebrate the struggles we call autism.
References:
1. Bolton, Patrick F., et al. "Epilepsy in autism: features and correlates." The British Journal of Psychiatry 198.4 (2011): 289-294.
2. Valicenti-McDermott M, McVicar K, Rapin I, Wershil BK, Cohen H, Shinnar S. “Frequency of gastrointestinal symptoms in children with autistic spectrum disorders and association with family history of autoimmune disease.” J Dev Behav Pediatr. 2006;27(2 Suppl):S128–136.
3. Cassidy, Sarah, et al. "Suicidal ideation and suicide plans or attempts in adults with Asperger's syndrome attending a specialist diagnostic clinic: a clinical cohort study." The Lancet Psychiatry 1.2 (2014): 142-147.
4. Zablotsky, Benjamin, et al. "Involvement in bullying among children with Autism Spectrum Disorders: Parents' perspectives on the influence of school factors." Behavioral Disorders (2012): 179-191.
5. Mansell, Sheila, Dick Sobsey, and Rosemary Moskal. "Clinical findings among sexually abused children with and without developmental disabilities." Mental Retardation 36.1 (1998): 12-22.