According to Autism Speaks and research from the Centers for Disease Control and Prevention (CDC) 1 in 68 children in the United States, (1 in 42 boys and 1 in 189 girls), are diagnosed with autism spectrum disorder (ASD). The term “spectrum” is used because of the wide ranging strengths and challenges of each individual with the diagnosis. It is commonly stated within the autism community, “If you know a kid with autism, you know a kid with autism.” There is no specific cause, nor is there a cure but this does not mean there are no interventions or treatment plans available.
Because autism is a spectrum disorder related to complex combinations of genetics and environmental elements, two individuals with the same diagnosis can present very different characteristics and skill sets, meaning no two treatment plans are alike. Some will struggle academically while others will graduate high school and continue on to university. Some will struggle in social situations while others will thrive and have a large circle of friends. Milestones reached by typically developing children may be delayed in a child with autism, while others may be met early, and therapies that work for one may not be effective for another. This video from Special Education in the Philippines does an excellent job of explaining how the autistic brain processes information and how overwhelming and overstimulating life can be for someone with ASD. All this translates to a life of extraordinary highs and lows. Rob Gorski, otherwise known as The Autism Dad, shares his story of raising his three children, each with ASD on his blog. All three have cognitive and behavioral challenges. His blog posts are frank and honest, discussing everything from the impact autism has had on his marriage to how frustrated he sometimes feels when even the simplest plans fall through because one of the children is in a meltdown.
Back in 2005, Jane Kim wrote Top of the Class: How Asian Parents Raise High Achievers — and How You Can Too. However, when her own son was born and subsequently diagnosed with autism, Kim realized many of the parenting techniques she planned to implement would be thrown out the window. In a recent blog post, Kim discusses the ways she’s taken the principles from her book and adapted them to best meet her son’s needs. As a result, she’s been able to find ways to engage her son in learning and maximize those teachable moments.
Because processing information can be a challenge for individuals with ASD, traditional parenting, discipline and educational models are sometimes ineffective. Ann Speidel, Career and Transition Teacher for special needs students at Centreville High School in Centreville, VA, says, “Our students need to be taught things that other people just naturally learn. Sometimes the breakdown in behavior is because they simply aren’t sure what they’re supposed to do.”
In her role as Director of Advocacy at The ARC of Northern Virginia, Lucy Beadnell focuses on grassroots advocacy for individuals with special needs. Through their Facebook and Twitter accounts, Lucy and other ARC team members provide access to free webinars, one on one training, as well as a variety of resources for families and individuals. These resources are invaluable to parents like Brenda Boose, single parent to two boys, Taylor and Brady who is on the autism spectrum. Without the support of organizations like The ARC, Jill’s House, Special Olympics, and Best Buddies, parents like Brenda, Jane, and Rob would have little respite from the rigors of parenting.
It’s important to remember that life for these individuals and their families and caregivers is not all darkness and despair. Just as parents of typically developed children have good days and bad days, parents of children on the autism spectrum have days with highs and lows too. Colleen Berge recently wrote a beautiful piece on the pure joy she finds in her autistic son and the lessons he has taught her. She describes their life together as an adventurous journey, taking her down paths and in directions she’d never have thought of going on her own.
Furthermore, it’s important to note that parents and children with ASD don’t want your pity. Megan Howard, Work Awareness and Transition (WAT) at Centreville High School, says, “I get very frustrated when I talk to people who feel sorry for our students. Our students and our families don’t want you to feel sorry for them. These students have so many abilities and so many skills and they want you to be in their corner. They want you to believe in them and tell them they’re going to be successful because they are. When you see somebody with a disability you should be looking at all they can do, and make sure they know that because all they want is support.” Howard has seen many of her former students graduate high school and go on to college or find a fulfilling, empowering job within the community.
For more information or to learn where you can offer your time or services to those with autism, check out Autism Speaks, Autism Empowerment, Network for Good, or Global Autism Project for a list of volunteer opportunities around the country and around the world.