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.

 

Reflections

On Self-Reflection

Who are you?

It’s a simple enough question. Depending on who’s asking, we have a dozen different answers at the ready. An immigrant, student, pharmacist, entrepreneur. Maybe a spouse loved one, or parent. Perhaps a sports enthusiast, or a fan of chess, each label tied so deeply to how we see ourselves that the two become inseparable. Dave not only works as a pharmacist, for example; Dave is a pharmacist. We gather a million different identifiers around ourselves to tell the world who we are. But if we’re not careful, we can put ourselves at risk of drowning in a sea of labels, without really knowing and understanding the person underneath. That’s where self-reflection can help.   

Self-reflection is not taught in school, but I’d argue that it’s one of the most important things we can do for ourselves. We’re bound with a life, 80 odd years, to accomplish all that we could ever desire. Knowing this, it seems almost a tragedy to spend the decades with a mind and personality we don’t really understand. How do you operate under extreme stress, for example, or feel about authority? What are your personal neuroses and ticks, the things you never realize you do until someone else points them out? How are you when you’re mad, or sad, or happy? What metrics do you use to gauge success in life? These aren’t questions we usually ask ourselves because, for the most part, we don’t regularly think about them. When we’re mad or sad or happy, we’re living those emotions, not analyzing how or why we reacted the way we did. When we have deadlines and assignments coming up, we rush to do them, not ask why we waited so long to complete them. If we want to make the most out of life to create honest and fulfilling relationships, we owe ourselves a little self-reflection every now and then.

Unfortunately, self-reflection is not a formulaic equation where you can plug in age, gender, or ethnicity, and get a personality spit out in a neat little box, nor is it a Myers-Briggs Test or horoscope test. It’s an honest and sometimes messy appraisal, not only of how you see yourself, but how you act in the blind spots of your personality. By its nature, there’s no guideline on how to approach self-reflection. Oftentimes, it’s as simple as asking yourself a series of questions. As the poet Carl Sandburg once said:

It is necessary now and then… to ask, ‘Who am I, and where have I been, and where am I going?’ . . . If one is not careful, one allows diversions to take up one’s time—the stuff of life.”

With that in mind, here are some basic questions you can ask yourself to help you get started.

How did I get here?

It’s almost a trope that we don’t really understand our past. We remember things through the veil of time, often blurred and distorted by nostalgia or trauma, which is not to say we don’t remember at all. However, it’s sometimes hard to understand the forces that shaped us. The past is littered with moments of significance that, for one reason or another, we realize only in hindsight.

I have a lifelong love of reading. In retrospect, I could trace that love back to one moment in time. When my parents refused to sign a permission slip for a field trip in elementary school, I was forced to stay in class with a handful of kids and a substitute teacher, Mr. Rose. He put a copy of The Lion, The Witch, and The Wardrobe in my hand, and so set me on a path of reading that shaped most of my childhood. I never questioned why I loved reading so much, until I found myself waiting in line, at midnight, on a cold and windy night for the latest Harry Potter book.

Which begs the question, how many other moments like this go unnoticed in our past? My parents leading me through thrift stores hunting for bargains, which instilled a respect for frugality and savings. Or the middle school teacher who nurtured my curiosity about science, and spurred me on to pursue a degree in genetics and pharmacy. A string of inconsequential moments that, together, end up weaving the pattern of our lives. But we can’t read this pattern if we don’t interrogate our own past, follow strands of memories to their beginnings, to make sense of the lives we live today.

What am I doing?

We’ve all got plans for the life we want to live, some more thought out than others. Maybe you have an outline detailing every year from now until retirement. Or you just have a vague sense of something inside telling you to keep looking for your passion. Whatever your plans are though, it can be easy to lose sight of them and fall into the routines of everyday life. Wake up. Eat. Work. Go out. Sleep. Rinse and repeat.

But it’s when you take a step back that you start to appreciate the arc of your life’s story. You can see the little hops you need to take through life to get to where you want to be. Life can seem fiery, tenuous, and unpredictable, with something new always behind the horizon, but knowing what you’re doing and what you’re doing it for, can help anchor you to the path you want to be on, without getting lost along the way. It can be as easy as reminding yourself every morning why you’re going to work and school. Or writing self-affirmation quotes to wake up too. Always being mindful of your actions and their purpose in your life can go a long way towards anchoring you to your life goals.  

What do I want?

It’s easy to answer with happiness or success in work. But figuring out the details of the things we want in life can go a long way towards helping us achieve them. What metrics do I use to define success, for example. Is it income, or power, or the number of people that depend on me? Will I be satisfied with a 9-5 job? Knowing exactly what it means to you to be successful can help you figure out why you want to be successful, which in turn can help you figure out what you want out of life.

When it comes to happiness, we can’t help but want to freeze it. We buy the things that make us happy, live in the cities that bring us joy, and surround ourselves with the people that make us smile. But it’s easy to lose sight of the fact that the things we love most often change, and expecting happiness to come in year-long blocks can set us up for disappointment. The impressionist painters of the 19th century would often add brush strokes to show the passage of time in their paintings, highlighting the importance of transience in life. While the peaks of life may be short, understanding that can help us appreciate them all the more, and help give our dreams of the future a framework to work with.

Ready, Set, Go!

Self-reflection is a slow process, one we take a day at a time. It’s good to start slow, take the time to get used to the idea of introspection. Asking ourselves open-ended questions every now and then, about how we act, feel, and think, can be a great starting point. Looking back, I’ve realized that taking some time to think more deeply about the ways in which I interact with the world has allowed me to find and maintain fulfilling, lifelong relationships while letting me engage in meaningful conversations with people from all walks of life. In closing, I want to leave you with this quote:

“You are two people still separated by an ocean of time, Part of you bursting to talk about what you saw, Part of you longing to tell you what it means.”

-John Koenig

 

Photo: Charles Boyer

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Emotions, Fatigue, Feel Good, Reflections

SELF-CARE INC.

In a series of lectures delivered in the 1970’s at the Collège de France, the renowned philosopher Michel Foucault remarked on the ancient roots of self-care and its ties to Greco-Roman philosophy. In his work The History of Sexuality, he explored the relationship the ancients had between self-care and its role in understanding the self, writing “taking care of yourself eventually became absorbed into knowing yourself”.

The art of self-care was seen as central to a healthy and fulfilling life.

Today, Gwyneth Paltrow and her company Goop, which labels itself “A modern lifestyle brand” sells, among other things, a $60 jade egg for helping you “connect your second chakra….for optimal self-love and wellbeing”, an $80 quartz water bottle meant to “generate productive energy”, and $90 supplements meant to “improve energy levels and diminish stress”. Never minding the co-opting of religious concepts (chakra) and the problems with nutritional supplements (Supplements are a $30 billion racket—here’s what experts actually recommend), one has to wonder at what happened to turn self-care from a conscious effort that made us “doctors of ourselves” into a capitalistic command shouting at us to “shop and heal”. It is a change that is not confined to questionable companies like Goop. Social media bloggers and content creators who are sponsored by health and wellness brands often delight in sharing their tips and secrets to a healthy and balanced lifestyle to millions of followers, at a discreetly expensive price.

It’s worth taking a step back and getting some historical context. The self-care movement is old. Older than Twitter, and Instagram, and #selfcare, and #noshame. Once upon a time, it was a radical movement, a departure away from an American culture that emphasized personal responsibility to others at one’s own expense, a culture that shamed the idea of putting oneself first. Audre Lorde, the black feminist activist who helped spearhead the intersectionality movement, railed against this idea in her book A Burst of Light when she wrote: “Caring for myself is not self-indulgence, it is self-preservation, and that is an act of political warfare”. It was a rallying cry for those who suffered the most by upholding their communities. It was meant to be a way by which those who were unjustly treated by society, including women, people of color, and low-income communities, could find ways to take care of themselves despite a culture and society that mandated they work and not complain. It called for their right to put themselves first when they needed. This type of self-care wasn’t a publicized event because it wasn’t an $80 indulgence.

It was, in short, about survival.

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Audre Lorde

 

Of course, there’s nothing wrong with buying $50 bath bombs, or $70 journals to channel your thoughts. It’s your money, and you can do whatever you want with it, and I’ll be honest and say they can be fun. But this commercialization of self-care, one that tells us we can’t heal or take care of ourselves without expensive props, worries me. It takes away from what self-care is really about. The activist Jack Harr, for example, created a great quiz titled “You Feel Like Shit: An Interactive Self-Care Guide”. It poses questions such as “Have you eaten” or “Have you taken your medication” or “Do you feel anxious” and “Do you feel dissociated, depersonalized, or derealized”. The quiz asks these questions because it knows that self-care, for the most part, is about the small things. Eating and hydrating enough, making sure you take your medications, and spending time with friends and family, are the building blocks by which we build healthy and balanced lifestyles.

But looking through social media sites or walking through health stores, it’s hard not to feel as if you’re failing at self-care if all you do are the basics. That if you’re not spending half an hour in a bath with scented candles, or if you’re not drinking parsley protein shakes as you leave yoga, that you’ve somehow missed the point of self-care. This is not even to mention that those who can’t afford these products are made to feel as if they are not really “looking out for number 1”. It can go without saying that the modern self-care movement seems to benefit a more affluent demographic, leaving the rest of us to play catch up in collecting the latest trinkets of wellness.  In reality, having these products and routines forced upon us is the complete opposite of what self-care is about. We need a return to what self-care used to be, what it was as recently as 2015 and 2016 when the phrase took off online. In my mind, becoming “doctors of oneself”, in all its complexity, is vastly more rewarding than having a jade egg meant to channel my chakra.

 


 

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Please do not hesitate to reach out to the MindReset community.

The MindReset is a community of individuals who seek to inspire a social movement geared toward creating a more Supportive, Inclusive, Compassionate, and Kind society where anyone and everyone has the opportunity to thrive.