Hepingting, Flickr CC
Hepingting, Flickr CC

Autism and Autism Spectrum Disorder (ASD) are the umbrella terms for a broad range of complex disorders of brain development. They have been the center of national concern and even political debate as diagnoses become more frequent. Since the symptoms of autism and ASD are based on a range of behavioral indicators, diagnosis is not straightforward. Instead, ASD is a clear example of how social factors shape the way we understand disease and medicine. The cause of autism remains unknown, but diagnosis has risen with changes in diagnostic criteria, increased awareness, and more reliance on families for treatment.

Gil Eyal argues that autism was a rare disorder in the era of mental institutions, where children were simply deemed “mentally retarded” and separated from families. Changes since the ‘70s have meant mental healthcare is no longer mostly addressed in large, hospital-like institutions, but through a network of local therapeutic services that have created new opportunities for parents to interact with therapists and take part in diagnosis and treatment. This new social arrangement has increased practitioners’ trust in parents’ experiences and helped create a new category of mental illness.
Increased visibility and information about autism comes with more and more diagnosed cases. Parents have become “experts” at identifying symptoms of autism in their own children when they see other kids with a diagnosis. Thus children living in wealthy communities or very close to a child diagnosed with autism are more likely to be diagnosed with autism or ASD. Children can’t “catch” autism, but the diffusion of information about symptoms through social networks increases the chances of diagnosis.
The ambiguity of identifying, diagnosing, and treating autism often takes a toll on parents. As if on a perpetual rollercoaster, they feel stressed not knowing what to expect from a child’s day-to-day behavior. Mothers sometimes blame themselves for their child’s disorder.

…mothers were experiencing feelings associated with ambiguous loss [which] revealed frequent expressions of conflicting or contradictory emotions and ideas about the child and about ASDs, confusion about the child’s and their own future, and alterations between hope and hopelessness, feeling in control and feeling helpless. (O’Brien 140)

Although genetic studies of autism are inconclusive, genetic testing for autism in embryos is often framed as essential for responsible parenting. As a result, mothers carry great responsibility for birthing children with autism and risk considering their children “disabled” before they even enter the world. Much of the autism and ASD advocacy revolves around curing autism, rather than promoting the well-being of affected families and children, and this marginalizes autistic individuals by presuming that genetic material measures a person’s potential value to society by indicating whether they are “normal” or “disabled.” Not all people with autism appreciate the framing of autism as a disease that needs a cure, and instead these people advocate for respect of neurodiversity.

For more, see “Learning to See the Spectrum,” about Eyal’s AJS article and Girl w/ Pen’s “Autism and Neurodiversity.”