Maren Barton

Community Voices

I’m experiencing...

<p>I’m experiencing...</p>
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Kathy Hooven

How My Autistic Son's Best Friend Has Supported Him

Some people are just born nurturers. They innately and instinctively look out for others and may not even be aware of this caretaking gene that is so ingrained and dominant in their DNA. This is one such human with one such genetic code and we are so grateful for her. Caitlyn has been Ryan’s friend long before he wanted a friend, needed a friend or really understood the purpose of having and being a friend. Whether it was the call from Caitlyn’s mom Natalie letting me know that Ryan cried in centers, or had a bloody nose on the playground, or sat alone at recess fearful of an impending thunderstorm or shut down in gym class, or defended her loudly at lunch, Caitlyn’s nurturing heart has been the conduit from my son to me. And when you have a child who struggles with communication, having someone be your child’s voice when you aren’t there to help him speak, well, even for someone who does not struggle to communicate, I will never find the words for the depth of that kind of gratitude. You probably remember how crappy the high school cafeteria was. Now, imagine being the autistic kid in the crappy high school cafeteria. You are bounced from table to table like a pinball in a machine that has no flippers to guide you — not able to sit here, or there, or anywhere. Now imagine as that autistic kid, finding one kind face, one beautiful soul whose kind heart contains no instructions to play such a cruel game. She provides a safe place at her table and gives you the security and trust your body needs to be able to just sit through a 30-minute lunch period and eat. I know there were moments that weren’t always easy for Caitlyn. She naturally tries to fix every situation to ensure the people she cares about are happy, respected and accepted. I know that didn’t always happen in the cafeteria or in the high school hallways, but what mattered most to Ryan was that there was one safe face, one kind soul, one nurturing heart he could always count on. Caitlyn, we are so grateful for your beautiful soul. As you have protected, loved and nurtured Ryan, you will do so for many others in your chosen field of nursing. I know Ryan will not be able to scan a sea of college faces and find yours in the dining hall this fall, but thanks to your acceptance, your guidance and your kindness, he will have the courage to walk into that dining hall, feel proud of who he is and comfortably sit wherever the hell he chooses. Pinball game be damned. And although the words “thank you” may never cross his lips, I hope the smile on his face when he is in your presence is all the gratitude you need. You are both so fortunate to have found one another and share such a beautiful friendship. We love you, sweet girl.

Community Voices

Describe how you’ve been feeling with two emojis.

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Sonny Hawkins

Maintaining Routine on the Autism Spectrum

Maintaining a healthy routine can be an essential aspect of daily living if you’re on the autistic spectrum. It can lead to stability and make life more bearable, but also build big walls that can limit someone’s ability to cope. Many people don’t understand why it can be so important to those with autism, what can be involved, how it interacts with other aspects of autism or the repercussions of breaking a routine. I can only speak for myself on this matter, so please remember all my opinions are my own and based on how I cope day to day. I use routine as a coping strategy to enable my daily functioning. The world can be chaotic, unpredictable, overwhelming, loud, bright and exhausting; every aspect of daily living is seemingly designed against someone with autism. Almost 80 percent of the time I’m experiencing some form of sensory overload, which I will mask, especially when I’m not at home and in a new place or unfamiliar situation. Forming a routine has been a lifesaver! One of the most popular comments I get when explaining autism to someone is, “Oh you’ve got spergers, you like routine, don’t you?” My eye roll begins about here, but they continue, “Well we all must be a little autistic as everyone likes routine.” First of all, I want to mention how much I hate Asperger’s being called “spergers” or shortened to some other “cute” abbreviation. Second, having a routine is not as simple when you’re on the autistic spectrum. Routine is not simply just a schedule or a list of things in my diary to do on the same day every week to cope or stay organized. My routine comes with many challenges, black and white rules with no in-betweens, obsessions and repetitive behavior with set limits and rituals, and boundaries which can’t be broken. If I deviate from these routines, there will usually be repercussions in the form of extreme stress and anxiety, stimming, and potentially a high risk of endangering myself. I can become overwhelmed, especially if traveling outside of the home, using public transportation etc. Adapting or creating new routines can be extremely difficult; when I do find any order in the chaos, I tend to grab hold of it. However, this makes it very hard to let go, especially if the routine is quite destructive or unhealthy. Routine for me comes in two forms, to give you a brief idea: There’s the daily routine: tasks I must do every day, each with their own rituals, timing and way of doing things. Everything tends to come under the three Ws — what, when, where. This can include sleep, food, hair, washing, clothes, activities, toilet etc. Daily routines don’t necessarily mean it’s time slotted into the day like a diary; that’s one of the things I’ve learned to relax and adapt over the years. But when I do make my way through my daily routine, it needs to be done in a particular way for me to cope and not get muddled and disoriented. Then there’s the day’s events: essentially an internal mapped out schedule on steroids. When I’m working or when I was at school, college, university etc. my routine tends to fit between a set boundary of hours per day, including any appointment times, free time and travel time plus researched and Google street mapped routes. I will have plotted fastest routes, avoiding anything that stresses me out driving or walking. I will have checked out the place where I have an appointment, along with ensuring I can use self-service petrol stations, and in case of shopping, stores with self-checkout. I will work out disabled access if I’m having a bad day with fibromyalgia. The list is rather long. Establishing a routine or ensuring consistency has been a lifelong pursuit, although it can heavily interlink with obsessive and repetitive behaviors as I mentioned above. I also have OCD, so sometimes it’s hard to know where one starts and the other stops. It is almost like a drug which must be taken every day; it is on my mind day and night, and if that routine has been disrupted, suddenly everything falls apart and my ability to cope and hold myself together disappears. I still struggle to understand this as it goes against everything I am as a person. I know I’m doing it, but can’t stop myself. I have forced myself to reign in and control my response to disruption because of my difficult family background and having responsibilities from a very young age, requiring me to find ways of coping when my planned routine breaks. That doesn’t mean I don’t feel the effects inside causing panic, anxiety, sometimes sensory overload, even fits of anger just for something not going the way I planned. After my breakdown, with the complete loss of normality and routine that came with a full-time job, I found I was very susceptible to developing a sleep disorder and my already poor eating habits made my eating disorder harder to manage. I was once asked to describe how it feels. The best way I could describe it is the way you feel when you first walk into your new home. Everything looks and feels different; everything is unfamiliar, like you’re in a stranger’s home. But when you settle and live in your home for a while, you become comfortable, settled and confident in your environment; you build your bubble. That is what a well-practiced routine with all its quirks is for me; it’s comfortable, predictable, a protective bubble that feels familiar. When it’s broken, I feel weird, disturbed, overwhelmed, anxious and frightened, almost like I’m looking at something for the first time. When a person on the spectrum has their routine broken, it can result in quite varied reactions. Some can cope and mask how they are feeling, however some of the most common reactions I’ve seen through my work include acting out, anger or aggression, panic attacks or abusive language/behavior just to name a few. I have met some people who have very restricted routines with rigid rules and procedures involved, who make their life very difficult with any deviation causing huge distress. But I’ve also seen the other extreme where someone has an almost non-existent routine, to the point they are struggling to manage basic aspects of living and may develop a sleep or eating disorder and depression. Yet they can handle last-minute meetings, changes in their environment, new or stressful locations and trips out for last-minute appointments. I appreciate that this subject can be quite a minefield for each of us on the spectrum to navigate. I hope I have given you a little insight into this issue that can be very difficult for so many. If you meet someone on the spectrum in the future, please give them some extra leeway and remember the struggles going on inside are not always noticeable.

Community Voices

A Picture is Worth a Thousand Words When.. (full title below

A Picture is Worth a Thousand Words When Words are All You’ve Got – Living with #Aphantasia

I have a condition called Aphantasia.  Simply put, I cannot visualize.  Where other people can close their eyes and conjure up images within their minds, all I see when I close my eyes is blackness.

It might not sound like a big deal because in many ways it is not.  My Aphantasia did not prevent me from doing well in school or participating in activities and sports as a child.  I enjoy writing and art, I can cook and bake, and go through a thousand different menial tasks that are unimpeded by my condition.  My life in many ways is normal and unhindered.

That is not to say that my Aphantasia does not impact my life in many random ways that others take for granted.

For example, I am horrible with people’s names.  I can meet someone a dozen times and still have no clue what their name is when I meet them again.  There will be a familiar itch that scratches at my memory but until something rings a bell and a connection is made, I am at a loss.  Most people can simply close their eyes, conjure up a picture of someone and attach a name to that image.  My mind contains no images, only words.  My memory is full of descriptors.  For instance, I might remember someone by an event we attended together or a pet they own and until that descriptor is revealed once again, I will often draw a blank.

This extends from people to items, as well.  Even if someone catches me as I am headed to the store and asks me to pick up something for them, unless I am familiar with the specific item or write it down, chances are I might get it wrong.  Though I try to retain as much information as I can on the fly, I am easily thrown off and confused when faced with similar-looking items.  I cannot recall images, so I will question everything from size to brand to scent or flavor.  My mind will usually hone in on a color or a shape, leaving me to stand there, holding two similar items, trying to decipher which might be the right one.  Most people will simply take a mental snapshot to help them remember which item to get.  Instead of one picture that retains all the important information, I would have to store away the brand, size, color, flavor, scent, logos and a multitude of other descriptive words.

I am severely directionally challenged.  I could pass through somewhere multiple times and still find myself lost when I go there again.  I get turned around easily, as well.  Most people can close their eyes and recreate images of places they have been before.  However, unless something very specific has happened in that location that I will distinctly remember with words, the image of most places remain in my head only as long as they are within my sight.  Because I cannot close my eyes and instantly picture a walk I have done many times before, there is a distinct chance I could get lost headed there again.  I might remember that there is a library on a specific street somewhere downtown but if the many random houses and buildings along the way mean nothing to me, nothing will feel familiar until the library comes into sight.  If I turn onto the street a couple blocks too far, I might wander the wrong way for a period of time before the neighborhood changes enough for me to realize I have gone the wrong way.

I am also horrible with directions.  Many people can close their eyes and retrace their steps.  They can easily give detailed directions based on visuals they can recall, counting in their head, telling people to go down this street 8 blocks, take a right, go down 6 blocks more and take a left.  Even if I have been somewhere before, I have trouble giving precise directions like that.  Because I cannot visualize, short of memorizing every street and cross street in every town I have been in precisely in order, my brain has to come up with easier markers to remember, things that will stand out to me.  My directions might include a house that still has their Christmas lights up in July or a tree with a huge knot on it that looks like a face.  Simple things like a change in decor or a chopped down tree, however, will hurl me into a state of confusion that leaves me instantly lost again.

Though I enjoy being artistic and have been told I have both talent and a good eye, I have trouble creating physical representations of things without having pictures readily available.  I love to sketch and paint, but cannot conjure up images in my mind so I need to reference actual pictures before I can get spacial differences and angles just right.  Because I have to rely on pictures, my artwork often lacks originality.  At best, it might contain inspiration from multiple sources, yet it still always feels vastly unoriginal to me.  My writing, on the other hand, has greatly benefited from my lack of visualization.  I tend to be superfluous with my words, always trying to verbally paint images others can understand even if, like me, they cannot see it in their head.

I am overly sentimental and cling to mementos and photographs because they give me a physical reminder that I can see and hold, something that is more than just words.  No matter how many times I have seen someone’s face, the moment they leave my sight, I can no longer picture them.  In my mind, I will cling to the detail of edges and curves of faces and bodies, freckles and dimples, wrinkles and scars, to find descriptors that set them apart.  I have traced the angles of my fiance’s face a thousand times so I know the shape and feel of his face better than I know my own, because when I close my eyes, no matter how hard I try, I cannot see him.  Both my parents have passed away.  I don’t have any pictures of them so their faces are lost to me forever.  While watching a movie or show, I might see an actor and think “my father had a jaw like that” or “my mother stood like that when she was upset” but those are only small segments, similarities I recognize, random sparks and connections.  But the whole of their faces are gone.

Though I take classes in both tai chi and yoga, I always feel an entire segment of my classes are wasted on me.  Whenever the instructors begin an exercise in meditation and visualization, it is completely lost on me.  They will suggest everyone closing our eyes and imagining warm lights emanating from our cores or roots taking form and helping to ground us to the earth.  When I close my eyes, however, all I can ever see is blackness.  I spend that time, instead, concentrating on the feel of my breath entering and leaving my body, the feel of the air on my skin.  I turn my entire focus inward to the here and now, trying to release the jumble of words ever-floating throughout my head.  It is not meditation as others might do it but it is the best I can do.

I can go on and on with all the ways, big and small, that Aphantasia impacts my life.  Think of all the mental pictures most people store away in their minds.  Mental pictures for all the people, places and things they encounter every day of their lives.  Not being able to create mental images might seem like a very trivial thing – until you take the time to try and describe all those pictures using just words.

Aphantasia can be exhausting.  Most people store a multitude of images in their minds because it is faster, easier and more efficient.  Imagine if you had to describe every one of those images using words to someone who had never seen what you were describing.  You had no way to show them a picture, no way to help them understand other than describing everything. Imagine if you had to rely solely on your words.  Imagine how time consuming it would be to collect a variety of descriptors for every item instead of being able to share one simple image.  Now imagine that being your every minute, every day.  Imagine only being able to pull up words for everything instead of images.  How many words would you need?

In high school, my algebra teacher gave the class an assignment to write a paper, step by step, on how to make a peanut butter and jelly sandwich.  The purpose was to teach the importance of showing all the work and not leaving out any steps.  However, I think this technique would work wonders for raising awareness for Aphantasia.  It would be a good exercise to have someone have to describe things in their lives, from the most important to the everyday trivial, to a sketch artist using only words.  Much like nobody in my algebra class could successfully make a peanut butter sandwich by writing out the detailed steps one by one, I imagine most people would struggle equally as hard to find all the words to accurately describe a snapshot of their life.

People often assume I am forgetful or absent-minded, easily confused and lost in my own mind.  The truth is, I often have to work at least two or three times as hard to recall anything because I cannot take the shortcut of storing pictures instead of words in my memory.  People often say that a picture is worth a thousand words.  Take a moment and think of a vacation picture or an old family photo that means a lot to you.  Think of the different shades in that sunset along the coastline on your honeymoon or the creases in your deceased grandparents’ faces when they smiled, that small scratch on the rear side just above the bumper on your first car or the way your prom date looked standing next to it.  Imagine trying to recreate those whole scenes again, by memory, piece by piece, using only words.  Would a thousand words be enough?  Welcome to my world.

This piece originally appeared on Unlovable at:

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Community Voices

What aspect of your health is hardest for you right now?

<p>What aspect of your health is hardest for you right now?</p>
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Community Voices

Why don't people wonder what's going on in someone's head more?

In school, you are assumed to be typical. Able to picture in your brain, record memories, neurotypical, everything. And what happens when people don't see the difference?

I'm four time Neurodivergent. The autism is official and about to become even more so. The others however are not. I was diagnosed officially with narcolepsy last year and somehow on medication for it, the depression seems to be gone as well. I was deemed NT and put on medication for anxiety. Get this, I'm also pretty sure I'm ADHD, and aphantasia and sdam. It's a memory trait where you don't remember in the first place. The brain is unable to encode anything you think or feel resulting in a lack of eisodic memory.
This includes no mental time travel so they are saying I'm an anxious NT with general anxiety. I finally discovered the word for my memory trait and it's likely a buffer against developing anxiety. I think i have a somewhat usual level of anxiety maybe in certain situations but I am unable to go through scenario after scenario of what if because it's a lot harder when your brain can't recall the past to predict the future. I'm relieved I don't have anxiety after all, but now it's to get the brain scans so people understand what I mean when I say I literally don't have memory. So many assumptions about me are wrong and I guess it's up to me and Christ to set them straight through help finding people willing to listen.

Have you heard of aphantasia or severely deficient atuobiographical memory before this? Aphantasia has been around for years and finally given a name. I have total Aphantasia of all five senses whereas most people mostly just miss mental image and still have others.

SDAM was only proven in 2015 with three healthy controls who are doing very well in their fields.

Strange how many ways the mind works! And how it makes up for it in other ways.

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Community Voices

What is the first thing you do when you wake up? #52SmallThings

<p>What is the first thing you do when you wake up? <a class="tm-topic-link mighty-topic" title="#52SmallThings: A Weekly Self-Care Challenge" href="/topic/52-small-things/" data-id="5c01a326d148bc9a5d4aefd9" data-name="#52SmallThings: A Weekly Self-Care Challenge" aria-label="hashtag #52SmallThings: A Weekly Self-Care Challenge">#52SmallThings</a></p>
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