There’s no shortage of interest in the day-to-day lives of the millions of people who live with autism and autism spectrum disorder (ASD). To get a sense of just how deep that interest runs, one only need look at the eye-popping sum paid for Autism.Rocks, a top-level domain now owned by Dubai-based philanthropist and autism advocate Sanjay Shah. People directly affected by autism desperately want answers to the often vexing and painful questions that inform their lives—and members of the general public are increasingly curious about exactly what it’s like to live with autism.
First-person narratives like this one help answer these questions. While it’s true that every individual with autism has a unique set of perspectives and life experiences, it’s equally true that autism and ASD present key challenges that people who don’t have these conditions don’t have to face.
If you or a loved one has been diagnosed with autism, these are some of the challenges, considerations and opportunities you can expect to face in your day-to-day.
People with autism frequently exhibit obsessive tendencies. In many cases, these shade into tendencies that meet the formal definition of obsessive compulsivity; in fact, some individuals who live with ASD have also been diagnosed with obsessive-compulsive disorder (OCD).
Obsessive tendencies aren’t “bad,” but they can interfere with daily life—for instance, when routine becomes compulsion. On the other hand, obsessive or compulsive tendencies can be a boon for individuals who thrive in organized environments—a trait shared by many ASD individuals. If you know someone with autism, think about how you can benefit from their organizational abilities and what you can do to support their proclivities.
Difficulty Communicating With Peers, Colleagues and Family Members
Starting in early childhood, individuals with autism may experience difficulty communicating verbally and nonverbally with peers, colleagues and family members. These difficulties can manifest in many different ways, but the outcome often follows a predictable pattern: avoidance of eye contact, difficult or halting conversation, difficulty expressing thoughts or ideas in unambiguous fashion, miscommunication and more. It’s important for non-ASD individuals to understand how individuals with ASD prefer to communicate—with the caveat that these preferences may differ from person to person—and accommodate within their abilities.
Difficulty Living Independently
Many adults with ASD have difficulty living independently. These struggles can be tied back to multiple factors, including problems communicating and difficulty with relationship-building (discussed below). Due to the financial, logistical and emotional cost of supporting adults in a group care or private residential setting, this is an intensely private and often fraught consideration for ASD individuals and their families.
That said, it’s important for everyone involved to act in the best interest of the individual whose care and well-being is at issue—and to recognize that individuals who are not suited to independent living right now may not remain so forever.
Difficulty Forming Close Relationships
Beginning in childhood, when the issue manifests in struggles with game play and group interaction, individuals with autism may have difficulty forming close relationships within their peer groups. For instance, in the narrative referenced earlier in this piece, the writer states matter-of-factly: “[A]t the age of 25 I still don’t know how to have a romantic relationship.”
Some individuals with ASD are more extroverted and empathetic than others. Caregivers and family members need to be attuned to these preferences—and know when to refrain from encouraging social behaviors (like dating or socializing) that these individuals may prefer not to engage in.
Diligence and Persistence in Goal-Oriented Settings
People with ASD tend to be highly goal-oriented. This may be an outgrowth of their preference for routine and organization. When you have obsessive tendencies, you’re more likely to pursue a pattern of action to its logical conclusion. In the workplace, this may manifest in the dogged pursuit of leads or hunches that produce tangible, verifiable results—in some cases, long after less persistent colleagues give up.
Strong Preference for Literalism
Individuals with ASD tend to take statements and other information literally. This is one of the earlier signs of ASD; it often manifests during childhood language development, when children with autism struggle to interpret figures of speech and colloquialisms whose accepted meanings diverge from their literal meanings. In older children and adults, the preference for literalism compels colleagues and loved ones to choose their words carefully, knowing that a careless statement could be misinterpreted in a way that negates its meaning (or not interpreted at all).
Pressure To Be “Normal”
Of all the stereotypes about autism, the idea that people with ASD somehow aren’t “normal” is the most painful. After all, what is “normalcy”? Is anyone “normal”? These reductive labels can have real-world consequences.
If you know someone with autism, do them and yourself a favor: Don’t ask them what it’s like to be “different” or why it’s so challenging for them to “fit in.” Flip the script and ask yourself why it’s difficult for you to see things from their perspective. You’ll both be better off for it.
We’re All Cut From the Same Cloth
Millions of individuals, from all walks of life, have been diagnosed with autism. Millions more live with autism but don’t even know it.
Of course, far more live without autism. Despite its prominence in the global health conversation and a growing body of evidence that the disorder is becoming more common, autism affects a small minority of the world’s population.
Nor is autism the only social disorder that deserves our attention. In its near-endless diversity, humanity faces countless conditions that impact individuals’ and families’ abilities to interact with and benefit from “mainstream” society and the political economy.
When we think about the conditions that challenge some of our fellow humans, we’d do well to remember that we’re all cut from the same cloth. We all come from the same place, and we’re all marching to the same end. We all deserve the same respect and empathy we’d want to be shown ourselves—no matter what we look like, how we speak (or don’t speak), what we believe or how we choose to live our lives.