Autism spectrum disorder (ASD) is a lifelong neurodevelopmental disorder, one which profoundly affects every aspect of an individual’s capacity to navigate the larger world. It is characterized by fundamental differences in communication and socialization in conjunction with the presence of restrictive, repetitive patterns of thought and behavior (American Psychiatric Association, 2013). Over time, understanding of autism has greatly evolved to its current paradigm of existing as a spectrum of abilities and traits. Recognizing autism as a spectrum – and acknowledging its complexities – is paramount to supporting the estimated one individual in 59 across the United States identified as autistic (Baio et al., 2018).
“If you’ve met one person with autism, you’ve met one person with autism.” Neatly expressed by autistic self-advocate Dr. Stephen Shore, this famous phrase underscores the great diversity of the spectrum: every autistic individual has an utterly unique profile of strengths, challenges, and specific autism characteristics (Shore, 2018). This diversity makes it impossible to develop truly universal policies and support strategies, and it can contribute to misunderstanding and division both within and outside of the autism community. Autism occurs across all racial, ethnic, and socioeconomic groups and is roughly four times more common among males than females (Centers for Disease Control and Prevention, 2018). However, there is ongoing debate about the accuracy of this male-to-female ratio; it is unclear the extent of biological differences between the sexes or how autism is defined and diagnosed influence these figures (Zeliadt, 2018). Regardless of such heterogeneity, the diagnostic criteria for autism recognizes certain commonalities shared by all those on the spectrum.
These criteria, as defined in the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), highlight significant challenges with communication and social interaction. These challenges include difficulty with social reciprocity, deficits in understanding nonverbal behavior, and issues recognizing unwritten social “rules” and nuances of relationships. Some individuals on the spectrum (up to one-third of the overall population) never develop functional speech and require alternative modes of communication, while others may be fully fluent conversationalists (Autism Speaks, 2018). Similarly, some individuals with autism may have a variety of fulfilling familial, social, professional, and romantic relationships, while others experience extreme isolation; most fall somewhere in between.
These differences in communication and socialization are influenced by and inextricable from autism’s other diagnostic criteria of restrictive, repetitive patterns of thought and behavior. Many on the spectrum exhibit repetitive behaviors (physical, vocal, or otherwise), also known as “stims”; these behaviors typically serve as tools for self-calming or self-regulation. Unfortunately, such behaviors may make one stand out from one’s peers or can be misinterpreted as manifestations of mental illness or drug intoxication (Smith, 2018). Individuals with autism also often have intense interests in a particular topic or topics. They may only want to talk about their special interests, and may not recognize when others do not share their fascinations.
Furthermore, those with autism tend to think in highly concrete, literal, and often inflexible ways; inferring meaning beyond what is explicitly expressed can be incredibly difficult. Individuals with autism generally rely on routines and prefer familiar schedules and may fear new experiences or find changes in routine deeply distressing. This preference for sameness relates to said difficulty with inference – it is a challenge to predict what will happen in a given context, especially when the environment or activities therein are unstructured or open-ended.
Issues with sensory processing can compound autistic inflexibility. Many individuals with autism experience significant sensitivities to sensory stimuli; some may be overly aware of or hypersensitive to the sensory nature of an environment, while others may seek out or are hyposensitive to sensory input. When over- or underwhelmed with sensory input, those on the spectrum can experience a diminished capacity to regulate their emotions, maintain focus, and communicate effectively with others. Environments with unpredictable sensory input may exacerbate the preexisting anxiety associated with new experiences, which can in turn limit opportunities for meaningful community participation and social interaction.
The complexities of the autism spectrum extend well beyond its diagnostic criteria. Autism rarely occurs in a vacuum – many with autism experience co-occurring physical conditions, such as seizure disorders, gastrointestinal problems, and motor difficulties. Likewise, comorbid mental health issues, particularly anxiety and depression, are incredibly common. Though there have been vast gains made in understanding autism and its many intersecting complications, much work yet remains in better fostering self-determination and improved quality of life for those on the spectrum.
Robyn DeCourcy has been working with individuals on the autism spectrum for over 11 years. She specializes in early intervention for children with autism, having spent eight years as an early childhood autism educator for ISD 196 (Apple Valley, Minn.). In addition to a self-designed Bachelor of Science degree in Liberal Arts and Autism Studies, Robyn also obtained a Certificate in Autism Spectrum Disorders from the University of Minnesota – Twin Cities. She currently serves as an Education Specialist for the Autism Society of Minnesota, where her duties include leading community trainings, developing social skills curricula, and consulting about sensory-friendly and inclusive spaces.