Patient Voice, Reflections

Beyond Bright Lights and Friendless Confines: Increasing Awareness of the Breadth of Autism

In awareness of Autism Awareness Week, April 26th to May 7th, The MindReset appreciates Mark Huntsman for sharing his experiences as an individual with autism.

It took me seven years, from the first time I recall someone suggesting to me that I “might have Asperger’s Syndrome” to the time I received my formal diagnosis of “Autism Spectrum Disorder, Level 1 (Needs Support).” At first, I was dismissive of the possibility– autistic people, even those whom society considered “high functioning,” struggled to make friends, were bothered by human touch, and liked to do the same thing in the same way every day, or so I believed.  If anything, I was at the opposite end of the spectrum: I had many friends and loved bonding with people, so much so that I was willing to share intimate details with strangers. I loved long, deep hugs, and I believed that I couldn’t stomach the inflexibility of being tied to a routine like eating the same thing every day. (In fact, it seemed, every time I would discuss which restaurant my friends and I should eat at, I would argue insistently that it be somewhere that at least one of us has never visited).  

These fundamentals– I am social, I am not always overwhelmed by sensory stimuli, and I can adapt– remained sticking points as more friends tried to suggest that my behaviors were indicative of someone on the spectrum.  I remained reluctant to accept their suggestions that just because it wasn’t morally wrong to eat my meat with hunks of bread like they did in other cultures doesn’t mean it is okay in this one. Or, even if I was right about there being several high school French language immersion programs in the state of Louisiana when the teacher insisted there weren’t any, my belief that an educator should not diffuse false information to unwitting students did not justify me walking out of class, printing a list of said schools from the internet, and mic-dropping them on her desk.  All the while, I was becoming more self-aware of social and sensory weaknesses and situations in which I was on a different page than others. I didn’t understand why people engaged in small talk when there were so many interesting things to talk about. I struggled with body language and nonverbal cues–not only recognizing them but understanding when they should take precedence over what a person says. Other people didn’t seem to react as suddenly and dramatically as I did to eating food they disliked, and they certainly didn’t feel the need to chew the tags off of their clothing.

I would occasionally take quizzes about Asperger’s Syndrome and would always test in the borderline range, but I knew not to take online quizzes too seriously, as a person could convince themselves that they had almost any condition if the questions were phrased in a certain way (“Do you get nervous in social situations?” Who doesn’t, at least occasionally?). Still, some of the questions on these quizzes seemed uncanny in their accuracy, and didn’t seem connected intuitively.  Why yes, I did make a lot of lists as a child, and I did love to collect and categorize things. Now that you mention it, I do seem to place a greater emphasis on honesty and loyalty than most people I know. I am, in fact, a less-than-perfect driver. Alone, any one of these questions could be easily dismissed, but together they seemed too apt to be random. However, if not for the persistent efforts of an ex-girlfriend to convince me that the autism spectrum was much more vast than I had imagined and that I did indeed belong on it, I might never have connected the dots.  She introduced me to literature far outside the DSM that American mental health institutions used to diagnose neurological and psychiatric conditions. In reading literature written by, rather than simply about, people on the spectrum, including female authors and authors from foreign cultures, I began to understand how I fit into a more nuanced and less stereotypical view of autism, one where sensory challenges can be present one day or absent the next, where social deficits extend beyond the ability to connect with people, and where repetitive and restricted behaviors don’t preclude an individual from having adventurous tastes and flexible attitudes in certain contexts. These authors also showed that the challenges of autism extend far beyond these categories into realms such as emotional regulation, executive dysfunction, and susceptibility to comorbid mental illnesses. Had I been armed with this knowledge the first time I attempted to speak with a psychiatrist about the possibility that I might be on the autism spectrum, I might not have been dismissed for having a natural affect and being able to engage in reciprocal conversation. Rather than dwelling on one obscure topic, I would have pointed out to that doctor that while some autistic people struggle to speak about more than a couple subjects, for many of us, a deep engagement with specific topics can mean devoting extraordinary amounts of time learning these topics, but possessing a variety of other interests as well. As it is, I came armed with knowledge to a meeting with a second psychiatrist who went from being skeptical to diagnosing me in just two sessions.

It is not uncommon during Autism Awareness Month to read articles about children or adults who struggle to connect with other individuals and businesses who offer sensory-friendly activities with low lighting and little sound. While these  address some of the most prevalent difficulties facing those on the spectrum, they fail to give the reader a sense of the myriad subtle and not so subtle ways that life can be hard for individuals with autism. Sensory challenges extend beyond sight, sound, and touch to include senses such as proprioception and interoception.  The former is our sense of how we fit spatially into the world around us. It is why many autistic people can have problems driving, knocking over objects, and employing basic motor skills. The latter represents sensations inside the body, meaning that simple hunger or a headache can be so strong as to distract and derail someone from attempting to perform a task. It also includes temperature regulation, which can leap from hyposensitive to hypersensitive in a matter of minutes, such that an autistic person may be able to walk outside in winter wearing short sleeves, only to be overwhelmed by the cold all at once. Social communication is equally complex and is a dynamic category affecting both social input and social output. A person on the spectrum may have difficulty reading body language, but also projecting it, leading to confrontations over impolite (but unintentional) staring, or misunderstandings as to the emotional state of an autistic individual. Communicative difficulties can range from forgetting to introduce oneself to interruption and “info dumping” (monologuing about non-sequitur topics or bombarding listeners with unsolicited information) to simply not being aware of how loudly one is speaking. When it comes to repetitive behavior, there is a great deal of variety even within commonly understood behaviors.  Many people know that autistic people tend to “stim,” or use repetitive body movements to regulate anxiety. Stimming tends to be presented as rocking back and forth or flapping one’s hands, but a careful observer can spot the same repetitive tendencies in individuals who wiggle their toes, shred napkins or wrappers on drinking straws, or even (as I did as a child) make repetitive noises with their nose and throat.

Next April, I would love to see the neurotypical world– those who write articles on Autism Awareness and those who read them– dig a little deeper into the umbrella categories of social deficits, sensory challenges, and rigid behaviors, as well as other aspects of autism not covered by these fundamental concepts.  Autism is a complex condition that affects complex individuals in complex ways and being presented as such may increase awareness in the community at large, but may also, as it did for me, increase self-awareness in those seeking or presented with a diagnosis.

 

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