Autism typically involves serious and permanent disability, not fame and fortune.
We must not allow pipe dreams of “special talents” to blind society to the hard reality of autistic disability, writes the author.
By Rosanna Armendariz
Over the past several years I’ve noticed an increase in Facebook memes, social media posts and other media-driven conversations surrounding “special talents” of autistic people. The emphasis is usually on those who excel in math, science, technology or who possess exceptional artistic talent such as Stephen Wiltshire, a frequently profiled autistic savant known for his ability to draw a landscape from memory after seeing it just once. Social media goes so far as to diagnose as autistic many of history’s great scientists and musicians, such as Albert Einstein and Mozart. There is endless speculation on the spectrum-like qualities of billionaires like Bill Gates and Mark Zuckerberg. In fame and fortune-obsessed American culture, autism is rebranded as a money making superpower.
I briefly jumped on the superpower bandwagon when my now 11 year-old son was diagnosed with moderate-severe autism at age 2 ½ (a few years later I was diagnosed with Asperger’s Disorder at age 40, a topic I will return to later). You see, my son does have a special talent. I first discovered this a few weeks after his autism diagnosis. Years into reading to him with no response, I was flipping through a colorfully illustrated ABC book when not only did he respond but he said every letter, its phonetic sound, and read the word under each picture. My heart nearly stopped. I googled “Autism early reading” and discovered “hyperlexia” or the precocious ability to read without formal instruction, typically before the age of 5.
If I were a money-minded person I could have probably made a tidy sum uploading YouTube videos of my autistic toddler reading and typing words on the computer. Instead my focus was on cultivating my child’s “special talent” with the hope that he would someday become independent and accomplished. I eagerly devoured When Babies Read (Jessica Kingsley Publishers 2005), a book by Audra Jensen, a mom who detailed her success story with her son. Like my son, Audra’s boy was an early reader with autism. Audra’s son went on to gifted and honors classes. Excelling academically, a teenager at the time of the book’s publication, he appeared a bit socially awkward but otherwise fit in with his peers. I eagerly implemented many of the learning strategies included.
Nevertheless, my son is on a different trajectory. At age 11 he’s plateaued at a third grade reading level with the comprehension of a kindergartner. Math, science, and social studies are around kindergarten level as well. He is able to type sentences on a computer but rather than deep thoughts from the hidden recesses of his brain, he types out line after line from Blue’s Clues and other preschool cartoons that he still watches and enjoys. He speaks mostly in echolalia, repeating lines from TV shows, movies and YouTube videos continuously throughout the day. He expresses basic wants and needs in simple 3-5 word sentences, but can’t discuss thoughts, feelings, ideas, or have a conversation.
“My recognition of the limitations of his disability doesn’t mean I love him any less. Rather I’m angry that society has turned its back on people like my son. ”
I’m not angry my son hasn’t turned out like Audra Jenson’s boy. And my recognition of the limitations of his disability doesn’t mean I love him any less. Rather I’m angry that society has turned its back on people like my son.
I’m angry that autism has been rebranded as a superpower while special education remains grossly underfunded, Medicaid is continually slashed, waitlists for waiver programs are decades long in many states, and residential placements for individuals in crisis are in short supply. I’m angry that according to a 2016 Ruderman Family Foundation report, half of people killed by the police have a disability. Yet we are unlikely to see these incidents blasted across cable news and little has been done to prevent future deaths. Instead we are told to take solace in the success of Dan Akroyd, Susan Boyle, Daryl Hannah and others who use their unique gifts to become rich and famous.
I think it’s worth mentioning that in addition to my role as an autism parent, I’m also an autistic adult. After a lifetime of struggles with sensory issues, motor issues, gastrointestinal problems, chronic fatigue, an abysmal employment history and serious problems with social interaction I was finally diagnosed with Asperger’s Disorder at age 40. I thought my diagnosis might add credibility to my views on autism-- since I am living it every day. Yet, when I say that autism is a disability and not a gift, “woke” hashtag warriors on social media tell me that I have “internalized ableism.” When I say that although I have an above average IQ and a Master’s degree, I failed the road test to get my driver’s license so many times the staff at the DPS asked me not to come back and I’m unable to drive to this day -- the chorus calls me “negative” and “self-hating.” Online strangers assure me that my son will be an independent adult despite the fact that at age 11 he still needs help bathing, dressing and brushing his teeth.
Why do “woke” so-called “#actuallyautistic” hashtag warriors whom I’ve never met think they know more about my life than I do? Why do they get to speak for me and my son? Aren’t we “actually autistic” too? And while it may be fun to celebrate the famous actors, artists, scientists and tech wizards we need to get real that they don’t represent the majority of autistics. I can tell you that while my son can read and type on a computer and I am thankful for that, he is unlikely to ever be competitively employed or live independently.
We must not allow pipe dreams of “special talents” to blind society to the realities of autistic disability. The policies and programs serving many disabled persons depend on this.
Rosanna Armendariz is a middle-aged Aspie raising a young son with moderate-severe autism in El Paso, Texas. She worries about his future every day.