By Amy Smith
Recently, The State Journal published a piece about autism and the hope of one family (“Finding hope, help for those with autism,” March 17-18). It highlighted resources and an upcoming local event.
As I read the article, I began to think of the many stories inside the world of autism and, yet, we often hear or read the same story year after year.
As a parent of a child on the autism spectrum, I wish people could read and hear the diverse stories of individuals with autism and their families. As autism rates skyrocket, we need to address the fact that autism isn’t just savants and high-functioning individuals who can work in Silicon Valley one day.
The truth is that many parents work full-time jobs and more to fund therapies that come with astronomical costs. Lunch breaks are often spent on the phone with insurance companies — fighting for coverage of basic services such as applied behavior analysis, speech, occupational and physical therapy. Parents may rely on one income to support their family because one must be a full-time caregiver, which can be isolating. We constantly collaborate with medical specialists and experts in the field of autism. These services are often not covered by insurance, adding to out-of-pocket expenses.
Often, we must choose whether to brave school systems or homeschool, advocating for the best possible outcomes for our children. In traditional schools, we advocate for our kids with individualized education plans and by developing relationships with teachers and staff.
After work, it’s a race to therapy appointments for which we had to wait months. We had to read the evaluations talking about what our children cannot do (and may never be able to). We hear the naysayers and defy their truths. It takes time for professionals to see what we see, the funny and kind child behind diverted eyes. Often, we observe and learn during therapy sessions or we research while we sit in cold, quiet waiting rooms. Sometimes, we meet another parent who shares a valuable resource and we make a friend who gets the struggle to save our child.
The truth is that we never rest.
Therapies can range from basic services to lesser-known services such as vision therapy, social groups and music, equine and aquatic therapies (this doesn’t come close to a comprehensive list). We take what we learn and make it a part of our daily routines. Are we doing too much? Too little? The right things for our child?
Outside of therapies, we also have sports to navigate, demonstrating to others the value in our children’s contributions. We root for our children as they earn their blue belts in taekwondo and swim their hearts out in the Special Olympics. We also watch them as they play on the playground, struggling to make friends and find acceptance. Now, add the occasional play date that we hope they can navigate because they have worked so hard to have friends.
We follow specific diets and strict regimens. We also maintain sensory diets daily to nourish our children’s nervous system and create sensory rooms out of spare bedrooms and living rooms. Siblings make sacrifices and parents balance multiple schedules. They make it look easy, but it feels like they walk a tightrope without a net beneath them. We won’t even talk about the strain it can sometimes put on relationships.
Some individuals on the autism spectrum experience sensory overload, meltdowns and self-injurious behavior. Individuals with autism may sleep very little for days or become easily lethargic. Some have superior language skills while others are non-verbal. Most of our kids love water and can easily elope, causing an autism parent to be on alert constantly.
Roughly 30 percent of individuals with autism suffer from seizures. They may also suffer from comorbid conditions associated with autism, such as Fragile X, gastrointestinal issues and neuroinflammation. While some kids will go to college or join the workforce, others will always be in the care of a loved one or in a group home. As individuals with autism age, resources dwindle and families ask themselves, “What will happen to my child when I die?”
This is our reality and the reality of many parents raising an individual with special needs.
As we continue this journey, we find support through organizations and families in local support groups. Every day, we advocate for our children. We are resilient and tireless in our efforts. We are researchers and problem solvers. We handle meltdowns and the stares from strangers who think we are bad parents because our child had a meltdown in a public place. We also find compassion and the kindness of strangers when we least expect it.
The story of autism cannot be confined to one story or a single definition explained through the latest Diagnostic and Statistical Manual of Mental Disorders (DSM-5).
Famed writer Chimamanda Ngozi Adichie has spoken of the danger of a single story. She states: “The single story creates stereotypes, and the problem with stereotypes is not that they are untrue, but that they are incomplete. They make one story become the only story.”
Autism is not just one story. Autism is a million stories. If we ever hope to have understanding and acceptance, they need to be heard.
Amy Smith lives in Frankfort and has a child with autism. She is co-founder of Capital Area Autism Parents. Contact her at email@example.com.