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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Feel Good, Paying It Forward

Mindful March Challenge

Welcome to the Mindful March Challenge!

The purpose of this challenge is to improve our awareness of how much we are engaging in kindness to ourselves and to others. It is all about turning the idea of being mindful into an actionable practice!

~ This event is in honor of those who are facing challenges with their mental health, chronic illness, or disability. ~

 

Undoubtedly, sometime in our lives we have been or will be challenged to a point where our mental health might become compromised. For some, events will occur that may make it really difficult at times to feel hope or see the silver-lining that always exists in our lives. The aim of this challenge is to encourage ourselves to be mindful of our own thoughts and feelings and then to extend this positivity to those around us.
Together we must cultivate a shared culture of support and understanding instead of isolated emotional harm. For those who are going through mental healing, realize that even though it puts you in a place of vulnerability, it is really important to ask for help. Please realize, that maybe as much as it seems, as much as you might be afraid of being judged, you are NOT ALONE. As a community, we must understand, support, and inspire ourselves and our affected peers to keep healing in a positive and healthy way.

So how can we do this?

Download, participate, and share the Mindful March 2018 Calendar!

– Click “Mindful March 2018” above to open calendar PDF –
The challenge consists of a short list of six or fewer simple activities that can be performed daily, slightly more difficult activities weekly, and just a little more difficult monthly.

Each of these activities is a small act of kindness that you can challenge yourself to do for yourself or for someone else.

Each week has a theme: Support, Inclusivity, Compassion, and Kindness. Activities in each themed-week will be more heavily focused on what you can do to demonstrate each theme.

There are daily challenges. The first time you do that act on the day it is assigned, you can give yourself 5 points. Every time you do that same task within that same week, you can give yourself 1 point.

There are weekly challenges. If you complete the weekly challenge by the end of the week, you can give yourself 50 points. If you do it again another week, give yourself 10 points for every other week you do it.

There are monthly challenges. worth 500 points, if you continue this challenge for more months, then continue on with 100 points per month!

We also encourage you to set personal daily, weekly, and monthly goals, worth 10, 100, and 500 points respectively. If you journal and reflect on your experiences doing this challenge, give yourself 200 points!

Finally, we want to grow this community of compassion. Help us do this through social media! If you post to this event, sharing your positive deeds or someone else’s positive deeds. Give yourself another 25 points for each post. Check out the point breakdown below:

MindReset Points
*TMR = “Total Mind Reset” or “Take a Mind Reset”
Instead of saying “mind-blown”, say “TMR, total mind reset” when something has totally altered your way of thinking, or when someone is so flustered in their own thoughts and need to take a moment to step back or remove themselves from those thoughts, say “TMR, take a mind reset”.
The point system is self-monitored. Be honest with yourself about how often you are doing these acts.
You can challenge yourself, your family, your colleagues, your classmates, your friends, your organization, whomever. Set your own prize, but in the end, we all win just by attempting to be mindful!
Please ask everyone in your life to join in on Mindful March. This month we can challenge ourselves to elevate our health and improve our community through positivity! 🙂
If you want to participate in this challenge by yourself or as a team, fill out this form HERE. We will follow up with you to see how things are going!
Thank you for at least considering a way to make this world a better, kinder place!
-The MindReset Team

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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
Emotions

Thoughts on Being Overwhelmed

In today’s society, it seems that many of us feel overwhelmed at some point in life. This can be from work, school, moving, and many other things. Over time, if we are always living in this state, it could potentially lead to chronic stress and or major health issues. The question now is how do we live with it if we are unable to escape the stress of everyday life. More importantly, what are some things we can do as humans to help alleviate the stress and not being so overwhelmed?

One quote that sticks with me is from Timber Hawkeye, “you can’t calm the storm, so stop trying. What you can do is calm yourself. The storm will pass”. With so much happening in our lives, it is vital that we find time for ourselves and know that we are not alone. Find a way to relax and de-stress. Look for an activity you enjoy doing or try discovering a new one that you’ve been wanting to do.

What helps me get through the tough times of being overwhelmed are things like exercising, talking with someone, cleaning, napping, and deep breathing. It is our jobs to find a couple of things that will help cope being overwhelmed. If things don’t get better, it is important to reach out to someone and ask for help. Through the thick of it all, know that you have a purpose in life. Keep that in mind to help you keep moving forward in life.

Lastly, make sure to surround yourself with successful people in your life and career. These people will always be there for you through the good times and bad times. Also, know that there are some days that are better than others. If you are having a bad day, leave that all behind. The trick is to find a way to reset quickly so you can have time to get back to a place of some control. If we can keep these points and steps in mind, life can be happier and less stressful.


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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
Patient Support Voice

Unseen difficulties of mental illness

It’d been a long week for me with school and work so I had planned to go out with a couple of buddies last night, get some dinner, go play some darts. At dinner one of my friends started talking to me about some struggles he had been having recently with anxiety. He had made a mistake at work a couple months ago and since then he has felt a lack of control of his career, worrying about job security.

It was difficult to hear parts of what has been going on for him, he’s been having physical symptoms along with trouble sleeping and just kind of felt stuck and not himself, and that he was unable to be himself because of his anxiety. I don’t think a lot of people realize just how difficult normal functioning is when you have an ongoing battle with mental health issues. Another aspect of mental health that I don’t think a lot of people consider is the comorbidity that goes along with it. More often than not someone will be battling more than one mental health issue, making it all the more difficult to overcome.

The reason that I bring this up, internalizing behaviors like anxiety, depression, somatic symptoms- are not obvious and can go unnoticed and unchecked for so long and at times to the extreme detriment of those who are suffering.

It is our responsibility as friends, family, and loved ones to be aware and vigilant when we notice changes in those around us, especially if we know there is a history of mental illness for the individual or in the individuals family. I take on the responsibility of being a supporter willingly and I will admit it is not easy to help sometimes. I have run into a couple of brick walls in my life when I have tried to help others, but I still will not give up, and I strive to be more helpful in the future.

I have been told that I can be somewhat parental, and not as patient-centered as I should be which is an important lesson to learn as collaboration is more effective for long-term care and not “band-aiding”. There are times when those who are suffering don’t know how to help themselves and they may need extra help and support and even some coaching, but then there are times when individuals understand their illnesses far more than someone who is not suffering and those are the ones that you need to listen to when you consider “how can I help?”

This is so important because if you think about it, having a mental illness doesn’t mean you are a child or are incapable of making your own choices, it just means that it can be a lot harder to do so and to handle certain situations.

Even if you do not personally know someone who is suffering from mental illness, you can still be a voice for those who do. Remember, not everyone who is suffering is obvious, and a lot of times it isn’t until it is too late. Sharing information on ways to get help and support is one way, but also just showing that mental health is important to you. Social media spreads far and wide and if we all can spread the message of support, those who suffer won’t feel so alone.


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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
Patient Support Voice

Sometimes, those who take care of others are the ones who need help.

Hey everyone, today I want to touch on some of my own struggles being in the supporter role. It has been very important for me to establish my own layers of support to make sure that I am being mindful of my own needs.

I have found it difficult at times to always be as encouraging as I probably should be, and something I have noticed about these times is I seem to not have enough spoons available to take care of someone else’s emotional needs as well as my own. When I refer to spoons, I am referencing spoon theory, which is a way to measure how much available energy you have to devote to different tasks throughout the day. Understanding and planning where and when to use your spoons is a way to be considerate of your own capabilities.

Understanding my own needs is imperative for the ability to actually be supportive of another. If I am unable to take care of myself, how am I supposed to take care of someone else? In regard to this, I have worked to establish my own outlets for when I feel overwhelmed or stressed in order to still take on what may be my most important role. Find a couple friends, a relative, maybe even someone at work that is available to have a chat with here and there. Unload some of the burdens so they don’t overwhelm you. Finding a stable support system for myself has enabled me to give more to those that need me.

I cannot stress (pun intended) the importance of self-care enough. I have had times where I thought I could do it all, manage every aspect of my own life and someone else’s only to crash and burn. In the long run that doesn’t help anyone! Another point that I want to make about finding your own support system is that in becoming your supporter, that person is also supporting and contributing to the positive outcomes of who you are supporting, so for me, every person that supports me is also supporting Jing in her recovery process.

The larger our support networks grow, as does the opportunity for advocacy. I will continue to reach out to others because it is what those impacted by TBI need. I hope that all of those who read this will do the same.


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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