By Kristie Bowie-Young
For as far back as I can recall, April has always been deemed "Autism Awareness Month" with April 2nd being “World Autism Awareness Day”. Throughout the month, you are presented with statistics, facts, advocacy for early intervention and pictures of cute elementary-aged children affected by autism and their families. Making individuals aware of our community is great! Understanding breaks down barriers and makes you feel less alone in this world. But what do we do when awareness is not enough? Awareness is not enough. It can only take Autism so far. Awareness is an amazing concept when paired with Action to take it further.
You must be thinking, “Kristie, how can you say such a thing?”. I can say this because I am on this journey that does not end when the kids are no longer elementary-aged. Quick resume of my experience: I have taught children with disabilities, including autism, at the high school level for 17 years. I am a proud mother of three teenaged sons, two of which have the diagnosis of Autism. With my boys, the cuteness has worn off, their needs continue to change as they grow and the true work has begun as we prepare for their adult years. Come take a walk with me as I show you how awareness, when paired with action for the long term, becomes a powerful and helpful tool.
Most children with Autism receive special education services to support their public-school education from the ages of 2 to 22 as mandated by federal law. During that time, the student, and their family, receives a multitude of interventions and supports in order to achieve their individualized educational goals. Once the student graduates from public school, those interventions and supports that they have had for 20 years do not accompany them into the real world. Life outside of that comfortable microcosm becomes a rude awakening for many of the families. Autism is a spectrum that lasts across the lifespan. It doesn’t end when public school ends. As adults, the individual with autism now requires employment, housing, and continued support for not only themselves but their caregivers. These are important aspects that require Action.
Employment is not easy for an individual with Autism to acquire. They can encounter a potential employer that can’t see past the Autism or they cannot/will not tailor the position for the individual with Autism to succeed. Many individuals with Autism have amazing skills and talents that are a huge benefit to any organization. All they require, along with accommodations/modifications, is the opportunity to shine. Making employers aware of the strengths of individuals with Autism and then acting on this to make employment a reality is an action item that is needed.
Housing can be a challenge for those that still require some type of support and/or supervision to live as independently as possible in their own community. If a person with Autism cannot maintain a home on their own, the only options they have for housing are either to live in a group home or to live at home with their parents. The demand for group home housing slots is higher than slots that are available. There are organizations, like Hope House Foundation in Hampton Roads, that provides that support for independent living that should be duplicated everywhere. It is what is truly needed.
Caregiving is a long-term reality for many parents of adults with Autism. They never get to experience Empty Nest syndrome. Being a caregiver is rewarding but it can also be lonely and exhausting. Families need support and help. It takes a village to care for an individual with autism.
Thank you for taking this walk with me. As you can see, Autism is life-long aspect that doesn’t end at age 18. Now that you are Aware, what Action will you take as an Autism Ally today?
Ms. Kristie Bowie-Young, former Special Education reacher, currently assists in, and advocates for the disability community. She has three handsome sons, two of which have autism diagnoses.