When you think of Mozart, Michelangelo, Thomas Jefferson, Albert Einstein, James Joyce, and Emily Dickenson, you envision a world of rich genius and incredible things of beauty and usefulness that the world would be lessened without; but, did you think of Austism? All of these people demonstrated characteristics and traits that would have placed them on the spectrum, had such a thing been conceived during their lifetimes. Add to that very long and illustrious list accomplished people like Dan Akroyd, Daryl Hannah, Bill Gate, and Steve Jobs, and a layer of the fog surrounding this mysterious disorder begins to lift – autism is not a disease. It may very well be a portal into a brand new and very beautiful, but very different one. April is Autism Awareness Month: you are cordially invited to step outside your comfort zone and onto the spectrum, to see and explore through alternative means of expression with the 1% of the human race today living with a diagnosis of autism.
The symbol for autism awareness is the puzzle piece: to most people, it represents the pieces “missing” from those who have been diagnosed with autism, and the puzzle of life with the disorder that they and their families must put together within the communities of home, school, work, and medicine that reflect a whole life. Others, such as Marge Pamintuan, a parent of an autistic child, view the symbol from a different angle. “It’s a symbol – perhaps to some, it’s a ‘missing’ piece. I’d like to think our kiddos are the COMPLETING PIECE of the human puzzle.” And still others, like Erin Clemens, who is on the spectrum herself, like the symbol because “it’s not about the end result, but the PROCESS of putting the pieces together. I also like it because it reminds us that each person, even though all grouped in as being on the spectrum, is still unique and has their own way of fitting in.” It is a puzzle, not only to recognize and understand autism itself, but also to detect and treat the facets of mental health issues that develop more frequently among those with autism than in those who do not.
Autism is labeled primarily as a social and communication disorder with consistently identifiable but not exclusive characteristics and symptoms, and some of the 1 in 59 in America diagnosed with autism will also deal with a myriad of physical challenges affecting sensory, cognitive, digestive, and motor issues. At present, there is no definitive medical means of diagnosing the disorder, no racial, ethnic, or socioeconomic group untouched by it, and there is no cure. What may seem surprising to many is that the families of children diagnosed with the disorder aren’t seeking a cure – something that would take away the unique characteristics and gifts of their loved one – so much as they are seeking deeper understanding and acceptance for their uniqueness. Without that acceptance, more than half of children with autism will be bullied; twice more often than their neurologically typical counterparts, a reality that exacerbates the already high levels of anxiety disorders experienced by no less than 40% of young people on the spectrum.
Combined with the biological differences in brain structure and function, those with autism navigate a sea of social difficulties and the challenge of identifying and integrating flexibility in their responses to what may be perceived as an imminent and overwhelming threat. Because each person with autism experiences their autism differently, it can be immensely difficult to spot the symptoms of anxiety disorders and depression as different from typical behaviors. It is also common for young people with the disorder to struggle to describe what they are feeling to others, which leads to further isolation, frustration, and the potential for a heightened crisis situation. Even on the path to diagnosing autism, misdiagnoses that can include, but are not limited to, Attention Deficit/Hyperactivity Disorder (ADHD), Major Depressive Disorder, Bipolar Disorder, Obsessive-Compulsive Disorder (OCD), Generalized Anxiety Disorder, Post-Traumatic Stress Disorder (PTSD), Schizoaffective Disorder, Borderline Personality Disorder and Narcissistic Personality Disorderare not uncommon..Obsessive-Compulsive Disorder (OCD), Depression, ADHD, and even suicidal tendencies rank highest among the additional disorders autistic youth battle and balance with a kaleidoscopic toolkit of medication, behavioral therapy, and the relatively new concept of wrap-around services delivered by a team which may include a physician, psychologist and service coordinator, working together to make sure the person’s needs are met in all areas of life, from the home to school or work setting.
It is undeniable that there are more questions than obvious answers when exploring the spectrum, and very real dangers for those who are on it. Families, schools, and communities struggle to find resources and programs to support awareness, acceptance, and integration of differently-abled children, and the often unemployed or underemployed adults that many autistic children become. Before all else, these children, youth, and adults are people, with feelings and abilities, and radically beautiful, meaningful contributions to make to every level of society. These are our missing pieces, those visionaries whose “normal” may look different, and may require looking and listening with expanded consciousness, but whose existence completes the puzzle that is Us.
You can make a difference. Learn about Autism today at https://www.autismspeaks.org, and be part of the reason that we have more Tim Burtons, Temple Grandins, and Charles Darwins in the world of tomorrow. Because “Autism is not the end of the world; it is the beginning of a new one”.