Writing About Autism
By Karole Cozzo, Author
Writing has always been both a passion and hobby of mine, and I penned my debut novel, How to Say I Love You Out Loud in the wee hours of the morning, in ten-minute unexpected snippets of free time, and in part when I was on maternity leave with my son. But my day job, my work as a school psychologist, is another passion of mine, one that has inspired and influenced my writing. About 70% of the population at my school has a diagnosis on the autism spectrum, many with co-morbid conditions. As more research is being done in the area of autism and more information is shared in the media, the general public is becoming more aware and understanding of what it means to live with autism.
However, in speaking with those who don’t work with children or in education, I often find there is still a great deal of misinformation circulating or false assumptions made. This is in part due to the fact that typically, people affected by autism don’t “look” disabled – often times children with autism are perceived as difficult or naughty, and adults living with autism are woefully misunderstood. A recent news article from the San Jose area documents one neighborhood’s attempt to proceed with a lawsuit following claims that an autistic child living within it was a public nuisance. While I firmly believe there are two sides to every story, this represents a dangerous precedent and a step backward in understanding and tolerance at a time when we’d like to believe we’re moving forward in these areas.
It’s my belief that inclusive stories are a phenomenal way to provide a snapshot of what life for families living with disabilities is actually like. My passions merging, I was inspired to write How to Say I Love You Out Loud to recognize, honor, and share with the world, not only the individuals who face challenges every day, but their support systems as well: the parents, grandparents, aunts and uncles, siblings, neighbors, and friends —the many unsung heroes who pull together to meet the multiple needs of a child with a disability. And as an author, I felt a huge responsibility to create an authentic representation of the experience of living with autism. In doing so, I faced several challenges in creating Phillip’s character in particular.
First, I was faced with the realization that we have limited opportunities to hear firsthand what living with autism is like. The communication and social deficits associated with the disorder make it extremely difficult for those living with autism to relay their personal experiences to others. I believe this is one reason why Temple Grandin, author, autism advocate, and speaker, is guaranteed to draw a crowd. She is one of very few examples of individuals with autism who are capable of and willing to try to capture their experience in words and share it with others. Otherwise, we are left to speculate, make conjectures, and try to relate a pattern of often inexplicable behavior to possible emotions, anxieties, fears, and frustrations. We put the puzzle pieces together the best we can, but it is hard to be certain we have obtained a clear understanding of the other person’s experience at that moment.
Second, the “spectrum” aspect of autism spectrum disorder posed another challenge in bringing a fictional character with autism to life. While all people with autism share the same “types” of difficulties (namely in the areas of language, social interactions, and social imagination), the condition affects individuals in different ways. Some may present with low intelligence levels, while some may be capable of performing within the significantly-advanced range. Some may be incredibly sensitive to sound, while others may be bothered by tactile sensations or have extreme food aversions or preferences. Some may develop average-range language skills, while others may rely on assistive technology to communicate their wants and needs. In writing one character with autism, it was difficult to acknowledge that I could in no way adequately capture the experience. The character of Phillip is the embodiment of autism as it affects one person, and the reality is that Phillip may look very different from a person with autism a reader knows in the real world.
Lastly, I was faced with the challenge, when writing about life with a disability, any disability, of trying to find a balance between my portrayal of his challenges and successes. It was important to me not to misrepresent how extremely difficult and taxing it can be to live with a disability that may never be “cured.” In some cases, every single day is difficult, and I wanted to capture that nature of the disorder – that there is never a break, never a day off, never a reprieve from its challenges. However, it was also incredibly important to me that I did not dehumanize Phillip or reduce him to his condition. Individuals with autism are capable of great successes, and many demonstrate one or more splinter skills (a particular skill above his or her overall performance level). Individuals with autism do exhibit breakthrough moments, however rare, however impacted by communication challenges, in which they show a desire and joy in connecting with family members or friends. There are good days and bad days, close days and far away days. There are tears…and there is joy and laughter. It is my sincere hope that my story captures all of these.
Karole Cozzo is a school psychologist by day, a wife and mother of two by night, and a writer of YA romance in the wee hours of the morning. She loves camping out at Starbucks, breakfast cereal at all hours, and watching every movie made from her favorite YA books. How to Say I Love You Out Loud is her debut novel. Her next book, How to Keep Rolling After a Fall, will be available in August 2016.