The term “autism” has been commonplace in the public sphere for several decades, though in all likelihood relatively few could clearly define the learning disability and what it can entail. In the past several months in particular, politicians, parents of typically developing children, flight passengers and theater-goers are the latest to lack a clear concept of what it means to have autism, as well as what parenting a child with autism truly signifies.
Part of this is due to a lack of education on the subject, sparse inclusion of children on the spectrum, the propagation of misinformation and sensationalism of the diagnosis in the media. The National Institutes of Health (NIH) defines autism as the following:
Autism spectrum disorder (ASD) is a range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties, and restricted, repetitive, and stereotyped patterns of behavior. Autistic disorder, sometimes called autism or classical ASD, is the most severe form of ASD, while other conditions along the spectrum include a milder form known as Asperger syndrome, and childhood disintegrative disorder and pervasive developmental disorder not otherwise specified (usually referred to as PDD-NOS). Although ASD varies significantly in character and severity, it occurs in all ethnic and socioeconomic groups and affects every age group.
If a typical layman were to come across this definition and was subsequently asked to summarize the diagnosis and identify someone with or without the diagnosis, they would be hard-pressed to do so with any modicum of accuracy. And part of this is credit to, or blamed upon, the very nature of the autism spectrum. By definition, those diagnosed on the autism spectrum will vary in presentation, symptoms and severity from person to person.
However, “autism” in pop culture now connotes the “high-functioning” mathematician or virtuoso who possesses a few awkward social quirks, but is able to integrate into society with relative ease, which in reality only represents one portion of the autism spectrum. The only attention the media provides those on the “low-functioning” end of the spectrum are those that are the subject of a lawsuit in an affluent neighborhood, are removed from a flight or who interrupt a Broadway show. Not the child who learned how to sign for juice instead of hitting themselves on the head, not the child who was able to sit in their preschool classroom without having a tantrum and not the child who held his mother’s hand when walking down the sidewalk instead of running into the street.
This lack of awareness and education is no surprise given the enigmatic, broad nature of autism. Therefore, when the more severe behaviors of the autism spectrum are presented in a public setting, such as aggression, self-injury and pica, there is a visceral reaction comprised of a combination of outrage and confusion. Sometimes the child is directly blamed, occasionally it’s their vaccination schedule, but too often it is their parents that are the subject of scorn. This may inadvertently lead to further isolation of the child from public settings for their protection, and thereby isolation of their parent. This only exacerbates the situation because when the child does eventually have to go out into their community, whether in a school setting or the local grocery store, it will be a very challenging transition for both the child and their parent.
The solution is not simple or instantaneous, but must be approached from three separate angles:
- The child, ideally diagnosed at a young age, must receive early intervention, in the form of behavioral, speech and occupational therapies, among others.
- The caregivers of that child must accept their child’s diagnosis, become educated about their child’s diagnosis and learn how to help their child with their areas of need in the home and in the community in collaboration with their child’s educators.
- The public at large, from teachers to parents of typically developing children to presidential candidates to members of the media, must gain a greater understanding of the diagnosis and its range of symptoms.
Once public awareness and education are ameliorated, programs and legislation to more effectively aid those diagnosed on the autism spectrum will be developed and implemented with greater potency and facility. This, in the end, will be for the benefit of the individual, their families and society at-large.