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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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Reflections

Who Do You See in the Mirror?

Many days, I wake up and feel like the person I see in the mirror is the exact same person that I’ve seen for what feels like my entire life. I don’t always see the 30 pounds that I’ve lost this year. I don’t see all of the struggles I’ve overcame. It can be a depressing thought. Self-examination can be hard because on a day-to-day basis we focus on the minutia of our being instead of examining the broader picture of ourselves and our progress that unfolds over weeks, months, or even years. This tendency to focus on the small details can cause us great anxiety and send us spiraling into a pit of despair. The good news is that it can be easy to avoid or alleviate these feelings by reminding ourselves that change is often a byproduct of consistent effort put in over time. As humans, our entire existence revolves around change. Certain aspects of our lives, such as our appearance or status in life seem to be set in stone, but change in these areas is inevitable. This is true of all things living or not. For example, to the naked eye, Niagara Falls looks the same today as it did fifty years ago, but we know that underneath the flowing water, the bedrock is slowly eroding away and changing constantly.

In a similar sense, our bedrock is eroding and changing much the same as that of the mighty, thunderous falls. The difference between us and the cascading waters is that we have a vastly greater amount of control over our erosion. While there are some factors that we can’t control, we can choose to “erode” with grace and become finer with age, much like the bottle of Cabernet Sauvignon our parents are waiting until retirement to open. Part of that graceful erosion includes being patient as we seek change in various areas of our life. The changes that we’re often looking for are things that happen over weeks and months, and it’s important to remind ourselves that impatience is a door that leads only to failure.

A great example of impatience leading to failure is the quest to lose weight. Ask anybody that has lost a significant amount of weight in a healthy manner, and has kept the weight off, if it happened over the course of 3 or 4 days or 3 or 4 months, or most likely longer, depending on how much weight the individual lost. But flip that coin over and take a look at the coworker that we all have that is constantly trying to lose the same ten pounds over and over again. Instead of realizing that weight loss is a process that takes time, they’re constantly looking for the quick fixes and trying all kinds of crazy methods that claim to be magic. They get stuck in a cycle of yo-yo dieting and spend months and years simply spinning their wheels without making any real, measurable progress.

Reflecting on our progress and actually attaining the changes we desire will likely need to be approached the same way that successful, sustainable fat loss is- with time, patience, and consistency. This means that on a day-to-day basis, we need to cut ourselves a little slack when we don’t see the changes that we envision we will see in the future. Too often, we look in the mirror and question the process because the results aren’t immediate. Instead, understanding the time that it takes, and appreciating that time and the experiences that come with it as it passes will help reduce self-ridicule and unrealistic expectations. Tomorrow morning when you wake up, go look in the mirror and say, “I’m doing the best that I can and as long as I keep doing that I will achieve my goals.” Emphasizing a focus on winning small battles is the way that we win the war. Trying to win the war all at once instead of fighting each battle individually is how we lose and end up being forced to wave the white flag.

Psychologist Erik Erikson developed a theory that involved eight stages, and he believed that as human beings develop in a healthy manner, we should go through each of these stages. The eighth and final stage is labeled Ego Integrity vs. Despair. This stage is the level that we reach around retirement age, and this is the time that Erikson hypothesized that we look back at our lives and make a determination about how we spent our time. Did we lead lives that we’re proud of and feel that we accomplished what we wanted to (Ego Integrity)? Or, did we lead unfulfilling lives that left a lot to be desired (Despair)?

Right now, you’re on the path to Erikson’s eighth stage. There is nothing stopping you from reaching that stage and achieving Ego Integrity. Sure, some of us are dealt hands that aren’t ideal, but if Doyle Brunson can manage to win the World Series of Poker Main Event with a hand of 10-2, statistically one of the worst starting hands possible, then there’s nothing stopping you from making the most of your hand no matter how suboptimal your situation is.

Set small, attainable goals. Take steps towards those goals every single day. Appreciate the experiences that you have on the way to those goals. If we do this, then it’s a certain thing that we will be able to look into the mirror every night and be happy at the reflection looking back at us, and subsequently achieve Ego Integrity when the time comes.

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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Please do not hesitate to reach out to TheMindReset 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.

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Pharmacist's Voice, Reflection on Patient Care

It doesn’t work with chronic health issues.

At APhA Annual Meeting I had the pleasure of meeting the accomplished Dr. Daniel Furtado – pharmacist, educator, retired Army veteran, former mayor of Campbell, CA…the list goes on! In an e-mail exchange I did not expect to receive a profound reflection on his many years of practice as a pharmacist. He gave me permission to share his response.

Please enjoy the wise words of Dr. Furtado….

Hello Jing,

 

I’ve given some thought to your request. I worked at the Palo Alto VA Hospital for about 7+ years; this was during the Vietnam War. The VA had a spinal cord injury unit; most patients were veterans of the Vietnam War. Then, later, I worked for a private hospital, O’Connor Hospital at Campbell in a 4-week inpatient program for patients with chronic pain; later, we also established an alcohol detox & rehab program, also a 4-week inpatient program. My experience, therefore, was with patients with long-term health issues.  I found it was essential that I do a lot of listening. Oftentimes, chronic patients deal with health professionals who seem in a hurry, and only want a few facts before they start talking, assessing, prescribing treatment. Patients sometimes feel that their problems are not being taken seriously or real. Answering questions, offering advice, or, only when necessary being more firm in your prescription for action, is important. For many chronic problems, it’s the patient who must determine what the best approach is for themselves after some suggestions and options.  As health professionals, we often think we have all the answers and know what to do, and, therefore we believe, we need to give a firm message to quickly resolve matters. It doesn’t work with chronic health issues. And, it’s important for us to not be too judgmental when a patient fails (such as alcohol abstinence and treatment failures); continue to work with patients, but don’t be an enabler to always respond with the “right” answer, or do the work which the patient needs to do.  But, I realize it’s easy for me to offer advice, while I realize you have experienced a serious health issue, which you have addressed with perseverance and motivation.

 

Best,  Dan

Key Take-Aways for Providerskey-colorful-matching-number-68174

  1. Take time to listen to your patients.
  2. Provide options and suggestions rather than commands.
  3. Respect the patient’s choice.
  4. Refrain from being overly judgemental – try again.
  5. Empower patients rather than leading them in certain directions or doing things for them.

 

Thank you Dr. Furtado for your reflection. From my dual point of views, I found it very comforting as a patient and affirming as a provider about the direction our patient care needs to go.


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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.

  • Facebook: https://www.facebook.com/theMindReset/
  • Instagram: @The_MindReset
  • Twitter: themindreset
  • #TheMindReset #TMR #SICK
  • e-mail: join.themindreset@gmail.com

<<LEARN MORE ABOUT TMR

Gratitude, Patient Support Voice, Trauma Voice

TBI Awareness Day: A story of exposure and learning from a first time supporter.

To be honest, I never thought I would be in this position. Never thought I would be a part of the TBI community but I am incredibly grateful that I am. A couple of years ago, I honestly didn’t know much about TBI. Nothing more than surface knowledge that you may hear on the news or read in the paper about some prominent figure getting into an accident and having a traumatic brain injury.

When I met Jing, it was my first real experience and personal connection to TBI. She told me up front, but I still did not truly understand what it meant to have suffered a brain injury. I didn’t know what came along with it, and what it did to the person who experienced it.

I remember it was a slow process, Jing was very protective of the TBI community and I understand why now. It is a very misunderstood community, one that is the epitome of unseen illness. Learning to be a supporter was not always easy, or graceful (I was not the best at it initially). I still have room to grow in this role, I still have plenty to learn. I look at this as an opportunity to maintain a growth mindset though, as there is always room for improvement.

I can remember the first support group meeting which I attended. I remember the warnings I got from the protective momma-bear that is is Jing about how I had better watch what I say and understand that this was a huge trust exercise for her and the other members of the group. I was a bit worried because I did not know what to expect. I am so thankful that I had had the opportunity to meet the members of this support group. I learned how many of the member’s accidents changed their paths and remain a source of pain and sorrow, but also how individuals work through what life has given them.

These group members suffer from things like depression, anxiety, PTSD, sleeping problems, aches and pains, memory problems. They have lost full use of many of their senses and have a hard time forming and maintaining relationships in their personal lives. Every person of this group has their own story, but they also share a lot of the same truths.

I was nervous a bit in that first meeting. I was worried I would make someone feel uncomfortable or I would not be welcomed. I was very wrong on this point. Being in the meeting I felt like I was part of a family. A family that was open and unfiltered, needless to say, I felt more than welcome.

What I noticed most was the way that each member was supportive of everyone else in the group. They were there to give support but also realistic advice, they were there to give as much as they were there to gain. They were able to use their own truths and circumstances to try to help other members. All the while throwing jokes around the room. It was nice to see that a sense of humor was able to persevere!

What I was able to take away from that meeting was the strong sense of community that I experienced in that room. Every individual with their own circumstances, collectively working to build a place that others and themselves could feel comfortable and supported. This is what we at The MindReset hope to recreate on a larger scale and involving more than just the TBI community.


“Unity is strength… when there is teamwork and collaboration, wonderful things can be achieved.” 

-Mattie J.T. Stepanek


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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.

  • Facebook: https://www.facebook.com/theMindReset/
  • Instagram: @The_MindReset
  • Twitter: themindreset
  • #TheMindReset #TMR #SICK
  • e-mail: themindreset@gmail.com