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.


4 years old, Brain Injury Voice, Emotions

The heroes around us.

How often during your day do you take time to reflect? On yourself? On those around you? On the communities, you are part of both at the micro and the macro level? On the ones you chose to be part of and the ones you didn’t?

I take time every day to reflect on who I am and my position in this world. Sometimes it takes a lot of time depending on the volume of exposures per day, whether the exposures are novel or not, or how complex the concept I am trying to wrap my head around appears to be or actually is.

And of course, I have to factor in my pain, energy, and functional ability levels…the only thing that makes me occasionally feel a very low-grade envy is for individuals who do not need to put any effort into these considerations. They can push themselves beyond these elements – something I cannot do unless I want to suffer the consequences of more pain, more fatigue, and less ability to function. Sigh* The catch-22. I would like to do more sometimes, but if I do, ultimately I end up doing less overall because I have to recuperate from over-exertion.

Here’s the pro tip: Reflection helps me monitor myself in the three areas I mentioned. I am always testing myself to see where my thresholds are and ways I can adjust them to increase my capacity.

Sigh* Overall though, I wouldn’t really describe the occasional emotion I feel related to this concept as envy, but more as frustration. Being a person who has learned emotions from scratch, I understand how sometimes we can control our emotions if we put effort into developing them. We don’t always have control at first, especially if we don’t understand them, but we can gain better control with practice. I purposefully choose not to cultivate jealousy because of the incredible damage it can do. Frustration though is a feeling I have accepted as inherently part of my life. I understand that very, very, few exist in the space I do and therefore I cannot expect many to understand how it is possible for someone like me to operate in a world where my type is not typically found.

Seriously, how many 4.5-year-olds/26-year-olds out there are there??? Find me! Help them find me!

I’m nervous. I know a lot of people with memory conditions are frustrated or afraid, and I am there with you. Sometimes I forget how old my body is. Sometimes I look in the mirror and I am perplexed to see my “shell” is a full-grown Chinese lady. Sometimes my friends will ask me if I remember something and I earnestly do not. Sometimes I am just living my life and flashes from the past just come in spurts (PTSD). Sometimes I meet people twice because I cannot remember meeting them the first time. Sometimes I feel like a stranger to myself. Despite this and more, I try not to let this hold me back.

Even though I sometimes feel alienated or alone in this weird space where I fluctuate between being really abled and really disabled, where there is no sense of time, where memories are not guaranteed – I am grateful because I am not alone.

Trauma is extremely silencing. Before I actively put effort into finding those like myself (those with traumatic brain injury, or TBI); it was those from the communities of people with cancer, HIV, lupus, autism, bone diseases, bipolar disorder, Alzheimer’s, and many other chronic conditions who stood with me and taught me as I learned to cope with everything that comes with being sick for what seems like forever.

Those from the communities of individuals who are not part of the 117 million people with at least one chronic condition helped me”catch-up” from having lost so many years of memories. The genuinely kind and compassionate ones helped bring me into their space. They supported and included me when others did not.

These are my heroes because they saved me from being swallowed by despair. They help me stay strong even when I am not interacting with them often. They are helping me pave a path so that if anyone else enters the land of trauma or memory disorders, or any brain-related condition, there is a way out of the dark. 

About a month ago, a person I know decided to read this blog and called me on the phone to say, “Do you have a moment to talk?” I said yes, and they found me where I was situated. I was surprised to see them because I didn’t talk to them very much before. They said, “I read your blog and I just want you to know you are not alone.”

At this first meaningful encounter, this person hinted that they had gone through some similar experiences but did not divulge many details. It was clear to me that this conversation made them feel really uncomfortable, but there was also a sense of relief? Slight comfort? Freedom? (I’m not sure, but it seemed good). They were proud of me for being open but recognized they would not be at a place to speak their truth for many years to come. I can understand that. Stigma has a way of burying one’s voice.

But earlier this past week, we reconnected and they shared with me how similar their experience was to mine. They did beg me not to tell anyone because of fear of how it would compromise their life. I can relate to that. When you have an invisible disability or condition – it is your choice to hide. And I agree it is often easier to hide health issues than to be judged negatively or overly sympathetically or have to explain yourself all the time. Even with some of my friend groups I never talk about it with them because I like having people who don’t “other” me and they just treat me like everyone else.*

In all, I am incredibly impressed by this individual and told them they were my hero. I am glad to know that not only am I not alone in one of the spaces we share, but they know they are not alone either. I am grateful to all the individuals who tell me I inspire them because they inspire me. The inspired, inspire. 

With that being said, in the words of President John Quincy Adams:

“If your actions inspire others to dream more, learn more, do more and become more, you are a leader.”

Be a leader and inspire others to do what is right. Look around you, it may not be obvious, but there are many heroes who may not have revealed themselves yet. Be continuously and indiscriminately kind and then you will be a hero who may nurture future heroes to rise.

*Overall, even my friends who do know about my condition, a lot of them don’t treat me any different, except when I’m going “down”, or I need to be in a safe space to recuperate, or they want to expose me to a possible new experience, or to make me feel more joy.

I do practice sharing my experience because I want to destigmatize disability, mental health, and the label of being a traumatic brain injury (TBI) survivor. I want to encourage one of the most closeted populations to emerge and be heard, to not suffer in silence alone. I prefer for others to know so that they can have a better awareness and understanding of how difficult the healing process can be and ways that they can be helpful if they want and practice compassion. Finally, there is always this simple concept: others cannot help you if they do not know what is wrong.

If this post inspires you to say something, let us know!! Tag us @theMindReset. If as a result, someone ends up treating you poorly, or turning their back on you, or ignoring you or making you feel like your words are not valued, I just want to remind you that this speaks much greater volumes about that person’s character and has nothing to do with your self-worth. Aw man, I know, that doesn’t stop it from hurting…but the pain does get less painful when your spirit becomes stronger. You are not alone. The MindReset community will stand with you.


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.

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4 years old, Brain Injury Voice, Emotions, Paying It Forward, Reflections, Suicidal Ideation

Part 1: The Promise – Why I use my voice to stand against laws that do not help suicide prevention.

Every traumatic brain injury (TBI) survivor heals at a different rate, but I notice there are certain qualities or characteristics that lend themselves to a more rapid and higher quality healing process. In this post, I am going to refer to a promise I made in my third-year post-injury when I began to see the most progress in breaking out of what I call the “trauma-loop“.

To explain this loop in brief, I will share with you how it feels to write the type of post you are about to read.

Personally, I find these type of posts very difficult to write. I hate letting my trauma-self out because she is crippled by the fear of being stigmatized and misunderstood. This part of me is incredibly thin-skinned and unable to handle criticism or negative judgment. She is so sensitive, harder to control, and is the most vulnerable to being engulfed by hopelessness.

Being traumatized is such a weird condition (PTSD – chronic) or state to be in (acute). I find that when people with trauma are belittled for who they are, it only traumatizes them more, and makes it even more difficult to operate or want to participate in daily functions. Therefore, it comes as no surprise that individuals with trauma often stifle their feelings because it may not seem worth the risk to be open and honest about their pain.

The benefit of suppression is that it is a temporary coping mechanism that can turn into a long-term solution where one habitually becomes accustomed to and learns how to operate day-to-day with no disturbance. However, like a latent disease, the potential for future, insidious, or more diffuse harm is magnified. Regardless if someone chooses to be open or not about their trauma, they are at risk for being caught in an unpleasant and relentless loop, that over time may diminish their sensitivity to hope or compassion. This is why I personally decided to figure out how to free myself from its chains.

In another post, I can explain how I did this, but my hope for this post is that readers understand the importance of supportive, inclusive, compassionate, and kind communities. Part of the reason I was able to get out of the loop is because I started engaging with other people with chronic conditions and disabilities.

Before I likely viewed these groups of people as simply patients because it was an implicit bias that I was something else, a student pharmacist. The space I was operating in consisted of relatively healthy 20-something peers who luckily for them, but unfortunately for me, did not know what chronic suffering felt like.

The majority of new peers I introduced into my life were TBI survivors like myself, but there were also people with cancer, HIV, various mental health conditions, and more. Our common threads were in the symptoms we had and how our conditions affected our abilities to function and interact with others in our lives. When you wake up day after day being sick with no end in sight, feeling that the odds of healing are not necessarily in your favor and there is no certainty that you will get better- perhaps it’s easy to imagine why suicide rates are higher in certain populations with these factors.

For today, there is no need to get into the weeds of the behind-the-scenes torture I experienced when I wasn’t holding up my “normal” front for those around me. What I do want to share is a promise I made to my community because I am grateful for the time they invested to help me build perseverance, compassion, humility, patience, and purpose. They gave me a reason to always look for light and to be unafraid of the darkness if it were to disarm me.

I promised them, “I will not forget what you did for me and that wherever I go, I will find a way to take you with me. I promise I will try my hardest to use my voice when I am able.”

Feb. 8th, 2018 – Day 1681 (or 4.6 years from my mind reset): An action step was taken to fulfill this promise. I participated in the American Foundation for Suicide Prevention – Virginia Chapter’s first capitol day in Richmond, VA.

The evening after work of Wednesday, February 7th, I took the BoltBus down to Cary St. in Richmond. It was only about $17 one-way (half the price of a train!) and it was a nice trip. There were only two other passengers, so it was nice to have space and access to a plug for charging. I spent the majority of that time relaxing, listening to music, and reflecting on what I was doing. I reflected on the thing that caught my eye about attending capitol day, HB 42 to decriminalize suicide in the Commonwealth.

In Virginia, the act of suicide is considered a crime.

I was shocked because suicide is a result of someone dying from a mental health condition. Just like people die of heart disease, cancer, or infections, people can also die because of mental health. If someone died from any of the other causes listed, I don’t think many would feel comfortable calling those individuals criminals. Likewise, in most cases, death is final and the individual who died from suicide would not experience the consequences, rather their families and close ones would experience the salt thrown on the wound of grief. Moreover, having laws that criminalize a finalizing action related to a disease state doesn’t prevent it from happening and also stigmatizes having mental health challenges.

Is someone a criminal because they feel hopeless? No! I know this kind of person could benefit from continual and compassionate support, practicing a mindset of alternative options, and realizing their full potential.

This law did not sit right with me, and I decided, okay, even though I have not been a Virginia resident for a full year yet, it doesn’t matter. Wherever there are people suffering and lives are on the line, barriers to achieving relief must be removed. I don’t need to know you to stand up with you or for you. I would hope that even though you may not know me if you knew that I was hurting, you would help me hurt less.

For the post today, the piece I want to leave my readers with is that when we speak of suicide, it is best practice to say, “the person died of suicide” rather than “the person committed suicide.” People commit crimes, but people die of suicide. 

Let me know what you think – Do you know anyone who is trapped in the trauma loop and could benefit from some insight? Do you know anyone who has escaped, and how did they do it? Finally, what are your thoughts on suicide being a crime?

Later this week, look forward to more of the lessons I learned at Capitol Day. Thank you for reading.


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.

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4 years old, Brain Injury Voice

Dear Jing – First open letter.


Pause and reframe. Before reading this post, I kindly ask you to reset your mind. Clear your head of thought – every task you believe you have to act on and any emotion you insidiously feel. Strip away your day, your life, and anything you know to be real.

Dear Jing,

Today is Wednesday, November 9th, 2017. Your mind is 1590 days or 4.34 years old. The reason I say this, even though your birth certificate says you are 25 years old, is that you have retrograde amnesia. Someday you will read this and never have remembered writing it. Perhaps one day you will read this and it will make you sad because you won’t know who you are, but I promise you, you were, and you still are, a really strong and smart person. You live to be supportive, inclusive, compassionate, and kind. This is who you are.

Remember you have life goals. You want to give people who have incredibly difficult lives hope. Why? You went to a funeral of an individual who lost hope and decided to take their own life. You understood this person very well because they were just one step ahead of you. You dipped your toes into the shoes they left behind and you thought about what you would want if you decided that enough was enough, because enough sometimes feels like too much.

This person ended up being one of the main reasons you became anchored to your life,  so you are very grateful for them. You never want to see another person who sincerely seeks to bring kindness to this world feel hopeless. You never want to see anyone not live up to their greatest potential. There is a white stone somewhere to remind you. But you don’t need that white stone because you trained yourself to remember that episode, especially when you are experiencing the kind of annihilating pain that splits your brain and makes living hurt. You live in their honor, and they are not there to hold you accountable, so you do it yourself. You are really strong, and you have a lot to hope for.

Remember it is okay that you are not the default person who is “living-centric”.  You are not suicidal, but you do not believe in living just to live, nor do you have the desire to live a very long life. You already died, that time when your head hit on something, probably pavement and all the “blood was everywhere”, and everything you were was gone. You already grieved that version of yourself and you let her go. You do not have a real past. You only have reminders and flashbacks of memories that haunt you relentlessly day to day. Sleep is terrifying because closing your eyes means scenes from a lifetime you don’t understand.

But you’ve trained yourself to live and love the present. Sometimes you forget this fact because haha, you have a memory disorder, which is amplified by not having the luxury of experiencing life the way standard individuals do. Sometimes you marvel when you walk on the street and you see all the people walking around you that you would have never gotten to experience if modern medicine didn’t “save” you. (Your favorite thing when walking around is the touch of the breeze caressing your skin. Yes, specifically, caressing. You always think about how great it feels. It is your favorite “in-the-moment” outdoor thing to experience).

Remember, you have brain damage in areas that alter your perception. You woke up with no emotions, almost none of your senses, and no coherent memory. Over the past 4 years, you did a really great job reconstructing your mind as best as you could. Remember to be proud of yourself for getting to a place where scientific evidence says would have taken you at least another 5-10 years, or frankly, you would have never been able to reach. But you are there. You got there in real time…remember what Professor S said?

“Jing, you are an outlier. A confounding variable. I can tell this is really hard for you, but you are going to make it. I want you to make it. You are going to graduate, walk across that stage at the same time as all your peers, but you will have done it while overcoming some incredible barriers.”

And she never gave you any answers. But she always asked you questions. She was teaching you how to problem solve. She never gave up on you. But she always reinforced one of your first core values: “Do what is right, not what is easy.” And you appreciate her for this. Remember this. There are a lot of memories you could work hard to keep, but this is one that you can never forget.

Now that you are refreshed, let’s do the rest of our past later. Let’s make sure I record September and October before it gets too far away from us. At this moment though, go to sleep, because you need it. I wouldn’t expect to have energy tomorrow because even though you may not be tired, you will still likely be fatigued.

Your last thought before your head hits the pillow should be that you are pursuing a quality of life that is a reality you created with the help of others. And therefore you have a lot to be grateful for. You are not alone and you are a product of humanity. There are those who will remind you, I think. If you can remember, at least remind them of how their contributions are why you remain supportive, inclusive, compassionate, and kind.

Tomorrow you’ll do your best.


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.

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Brain Injury Voice, Gratitude, Suicidal Ideation

My angels scrambled that day.

Two years ago, at this moment,
I sought the ultimate escape when I was in a state of triggered utter despair. I am grateful to [my] “heart-husband” and “heart-daughter” for calling the police, jimmying the door, and getting me to the help I needed so desperately. I had warned no one. I had given up on everything. The profound impact of my brain injury on the capabilities and possibilities for my future combined with the unshakeable despair left over from falling into a black hole overwhelmed a severely fatigued brain. I saw no tenable road forward. I had had enough. I said goodbye simply. I posted ‘so long and thanks for all the fish’. Left a note and a will. Took what my research said should have been a fatal dose. Locked myself in the bedroom and hoped they’d be too late. My angels scrambled that day.

Nothing in life can prepare one for the level of despair I felt when I flashed back into infancy. The first six weeks of my life, I was left in a neglectful, unprepared foster home in a state of raw emotional disregulation after being removed from my bmom without ever being held. The pain of Not being held or touched was excruciating for a strong Empath entering the world unwanted and hidden from all.

Set aside to cure like a hunk of meat until I could be legally placed with a barren couple in a poorly executed attempt at filling their void. Hidden in shame. A (whispered) Bastard. The Catholic Church was brutal to unwed mothers in that time period and the bastards were treated like unwanted puppies. But like the modern day pit bull, society believed we were born bad. The nuns scorned us and our mothers. When the nun handed me to my Adoptive Mother, she commented that my bmom “liked boys too much”. Judge judge judge. Assumed willingness is a fatal flaw in that judgy sh*t. That one comment ruined my life. My mother overcompensated to the point of harm. At 53, I’m finally shaking it all off but it’s too late for some paths.

Anyway, I am so grateful for the help I received both that night and the days that followed. It’s been two years of actively working with a Trauma Specialist Psychologist to slowly unravel the tangle of repeated trauma and PTSD and triggers. Blocked memories surfacing and popping like a noxious fart in the bathtub leaving behind the stench of old harm but Releasing the poison darts embedded by cruelty. Releasing my soul to dance in joy and love unfettered and free.

Metamorphosis in active mode.
Wings growing.
Blessed Be.

The profound impact of my brain injury on the capabilities and possibilities for my future combined with the unshakeable despair left over from falling into a black hole overwhelmed a severely fatigued brain.

Thank you, Amber, for sharing your story. The feeling of being overwhelmed with a fatigued brain is a common thread that many within the TBI community experience. Similarly, the feelings of despair that may precipitate suicidal ideation are also very common in this perseverant, yet sometimes very fragile, patient population. I am happy to hear of your caring support system, your efforts to overcome your trauma, and of your wonderful attitude. May you continue to heal and for your wings to spread ❤

– Jing


{Photo taken by author in her own yard}


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.

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