Alexander and Autism: One Mom's Fight for Inclusion and Acceptance
One local mom is making sure that individuals in Arkansas who are diagnosed with autism receive the care and respect they deserve. Veronica Tess Myers is a staunch advocate for her 21-year-old son Alexander Myers, who was diagnosed with autism in 1995. As a single mom, she raised her son on her own and continues to be his sole support.
The Myers are heavily involved in their community, volunteering with a number of local organizations, including CHI St. Vincent, Arkansas Walk Now for Autism Speaks and more. She is also currently an advisory member of the Arkansas Legislative Task Force of Autism—the first African-American to sit on the committee. As part of the committee, she helped enact the Autism Insurance Bill in 2011, which requires health insurance companies to provide coverage of screening, diagnosis and treatment. Myers took time to answer a few questions about life with Alexander and how others can become advocates for those with autism.
Little Rock Family: When was Alexander diagnosed?
Veronica Tess Myers: Alexander met all of his developmental benchmarks on target until about 14-16 months, when out of nowhere he stopped responding to his name and his sensory system went haywire. At the time, I felt like autism had taken my son away from me. I watched that sparkle gradually leave his eyes. He was initially diagnosed in December 1995. The second “confirmation” diagnosis was in July 1996: High Moderate to Severe Autism accompanied by Severe Sensory Processing Dysfunction. When Alexander was diagnosed, there was no Asperger’s nor autism-related disorder—you either had autism or you didn’t. Alexander’s case was considered to be a very profound one with absolutely no hope and no expectation for a positive outcome.
How old is your son now and what are his interests?
Alexander is 21 years old. He graduated from Hall High School in May 2011, decked out in Awards/Honors cords. Alexander is a predominately happy individual, despite his autism diagnosis, with his bright eyes and big smile. Some of Alexander’s interests include Hot Wheels cars and NASCAR, shooting pool, hip-hop and R&B, eating out—his favorite spots are Buffalo Wild Wings, Wingstop, KFC, Chili’s, Applebee’s. He still likes going for long drives, loves traveling and seeing new places, and makes verbal requests to get on the airplane.
Tell us about life with Alexander.
Life with Alexander is indeed a very challenging one. Not necessarily because of the autism diagnosis, but because we have to constantly deal with Alexander being mistreated and underserved by an endless line of federally-funded systems that are supposed to protect his rights. Alexander has never really gotten a “fair shake.” His rights to due process have always been and continue to be violated on a regular basis. The lack of an individualized Plan of Care to assist with appropriated supports and services for Alexander’s needs is ongoing. It’s an uphill battle—hence the tenacity and determination of my advocacy efforts.
What is the common misconception about autism that you try to combat?
A common misconception that I battle is that autism can be cured with a cookie cutter method of intervention. Everyone with autism is different; every child is different and should be treated as such. What works for one will not work for the next. One must approach with methods that address how autism is affecting the individual.
What is your ultimate goal?
My ultimate goal is absolute and total inclusion in all aspects of Alexander’s life. As the only constant in Alexander’s life, I am determined to make it happen—not just for Alexander but for ALL individuals with autism. For me, it is not an option to put Alexander in a developmental center of any institution. Not to downplay the parents who make that decision—trust me, I do indeed understand. But as a parent that has made the choice to keep my loved one with me and promote full inclusion, I deserve as much respect for doing so. I have always encouraged Alexander to “move forward without hesitation and despite discrimination” and I will continue to do so.
How can others help and become advocates?
By continuing to increase Autism Awareness but keep moving forward towards full inclusion with autism acceptance. Don’t stare with ignorance and stupidity if you see a child or adult in your community that has special needs. It’s okay to ask questions. It’s better to ask questions than to pass judgment.
Walk Now for Autism Speaks at the Clinton Presidential Center
Oct. 18, 8:30 a.m.-12:30 p.m.
This signature event for Autism Speaks generates funds for autism research, raises awareness and connects local families. There is no fee to walk in the event, but each participant who raises at least $150 will receive a commemorative t-shirt. The one-mile family fun walk begins at 10:25 a.m. This year, runners can also participate in the 2nd Annual Arkansas 5K, held in conjunction with the walk event. The run begins at 7 a.m.; registration is $20, plus an option $5 for a 5K t-shirt. For info: WalkNowForAutismSpeaks.org.
(Also see: 5 Things Parents of Children with Autism Want You To Know)