Selective Mutism

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Selective Mutism
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    Community Voices

    Stimming with anxiety, ptsd, sensory overload

    I know that many people associate stimming with autism; however I’ve been struggling really bad lately due to severe anxiety and ptsd. I will rock back and forth, flap my hands and sometimes go non-verbal #SelectiveMutism I’m trying to learn ways to cope, but it’s really hard. Anything help any of y’all with this issue?
    #Stimming #Autism #Anxiety #PTSD

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    Gus Art
    Gus Art @gusart

    Art Was My Voice When I Couldn't Speak as a Child With Autism

    For as long as I could remember, words were always trapped inside my head. I was always the quiet one. The silent one everyone forgot about or overlooked. At home, I spent my time alone in my room with my cats. People often talked about me as if I was deaf and could not hear them simply because I did not speak. They asked others if I could speak instead of asking me. School was especially difficult for me. My family moved around a lot and it made a quiet shy kid withdraw even more. My family moved three times when I was in the second grade alone. During class when the teacher would ask questions I knew the answers to, I was afraid to answer. Even when specifically called upon, I would just look down and shake my head “no.” The answers were all there, but trapped inside my head behind my lips. At recess when other kids would play and socialize, I would walk out into the dense fog of the grass fields at my school and disappear alone. Even in high school at lunch break, I would pretend to be asleep so that I would not have to talk or interact with people. Selective mutism is the term I heard about decades later that seemed to fit. During that time, art was always my way of communicating. Coloring for hours and hours using every color I had available to me. Eventually, coloring turned to drawing my own creations. In school, I would draw on the backs of my homework papers. When the backs of the papers were full, I would draw around the borders. My teachers often commented that I needed to spend more time actually doing my homework papers than drawing on them. I was dyslexic and struggled with words and numbers, but art did not need those. In the fourth grade, the teacher had us draw pictures for an open house. The teacher singled me out because I had completed a half-dozen drawings before most students finished one. There were more visual ideas inside my head than I could ever draw. The teacher hung up all my drawings. It was my way of speaking to the class and the school. Others started to take notice of my artwork and appreciate it. Soon classmates would ask me to draw things for them. Art became my voice. My way of expression. In the sixth grade, the teacher had all the students enter a fire prevention poster drawing contest. It was the first art contest I remember entering. The subject matter was perfect for me because of my love of animals and nature. I spent hours on the poster and was one of the last ones to turn in my drawing. I won the fire prevention poster contest and got called up in front of the whole school. I was painfully shy and terrified, but my voice was being heard through my artwork. In junior high, I would get selected to do comic strips for the school newspaper. Again I could be heard without speaking actual words. In high school, I was selected to do an illustration for the school calendar to raise money for the art department. In my senior year, my family moved again and I was devastated. I was alone again in a strange town with no one. My counselor told me not to take the zoology class I signed up for because they thought it was beyond my mental capabilities — my love of animals notwithstanding. So my only salvation was my artwork. I took three art classes and one photography class. The teacher asked me to illustrate a couple of children’s books for his colleagues. I was allowed to sit outside under a tree and draw in the peaceful serenity of nature while the rest of the class was in the noisy classroom. That may have been my happiest moment in school. This was back in the 1970s and 1980s. There was very little known about being on the spectrum. I was never diagnosed; I was mostly invisible, just a painfully shy kid struggling through the social minefields of school. Art was my voice, my salvation, and my identity. As an adult, I have to be in the real world. I still try to draw and create every day. I post artwork on the internet and get my voice out through images. I donate artwork to groups working to save animals and to schools that have selected some of my art to teach to their students. As art and music are being excluded from more and more schools, it pains me to know that others might not get the opportunity to express themselves through their artistic and musical abilities.

    Community Voices

    Functional Neurological Disorder (FND)

    <p>Functional Neurological Disorder (<a href="" class="tm-embed-link  tm-autolink health-map" data-id="5b23ce8100553f33fe99303c" data-name="FND" title="FND" target="_blank">FND</a>)<br></p>
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    Community Voices

    Can you write during selective mutism?

    I’ve found that then I have times of selective mutism I feel like my thoughts are extremely fast. I also have bipolar so maybe my racing thoughts are specific to BD. I’ve had selective mutism when I have despareately been trying to say or explain something. I discovered that I can write even when I can’t talk. Anyone else like this?

    2 people are talking about this
    Community Voices

    high school murder: 3 days on

    It is, by now, Thurs night/Fri midnight.

    Earlier today at about mid afternoon toward the end of lunch, I saw a Facebook share from a friend - a group of folks from a local social innovation consultancy group (I don't know what to call it? But that's what they describe themselves on their page) were holding a series of community circles in the coming weeks. I jumped at the opportunity to join the immediate one, just tonight.

    They said they would cap it at 15, but I think we had slightly more than that. Group sizes were still single digit and we were free to speak and/or listen as we wanted, which was helpful. We had quite a few educators, including a staff of thatnschool. We had young adults with lived experience (like me!), one of whom also works in a MH care setting.

    I didn't expect there to be the teacher of the school in mention but it was very refreshing in a sense, and & helpful - to hear first hand, after all the falsehood/half truths I've read in the media/social media.

    She shared how they (teachers) were first counselled on Tues (incidentally, public hol), given the (not spectacular) worksheets crafted by the education minister on the same day, told to deliver it on Wed morn. And she said some .. just .. couldn't. Teachers broke down. Ran out of class in tears & couldn't conduct the package. How they have a "care post" (extra booth of counselling resources sent by the ministry I think), but its overwhelmed cos its like 100+ pax wanna get a slot (it's a school with both junior & senior high - not sure how many students but 6 cohorts would be at least 2000 I think!) -- she half-jokingly mused like, can we have more trained experts and the care post for a month?

    I mean teachers are all counsellors to some extent, but like to be actually trained in mental health/clinical psychology/trauma follow-up care is a completely different thing - that's why teachers are teachers & not MH professionals, that's why a Masters in Clinical Psychology is a qualification in itself, right?

    Then today, we (sigh is this the beginning) received in the evening news of a different student from a different high school who was taken to hospital after "falling from height". This kiddo was conscious though, if I remember right. One does not simply accidentally fall from a height, you know?

    I don't know. It's like, I think I'm shaken by (1) how by now 3 days on I think the social media comments are the next worst thing than the incident itself (2a) how no one seems to realise the impact of this on folks with MH lived experiences in regular life and hence (2b) it took me a while to fit the jigsaw, see where (and why) I fit where I did, and from there, form words.

    I still struggle to put my thoughts in speech though, but clearly with a phone, the words flow. Is this a touch of what selective mutism is like? (I don't think I officially have it tho)

    #CheckInWithMe #Anxiety #SocialAnxiety #MentalHealth #Depression

    Community Voices
    Community Voices

    Shut down #Autism

    <p>Shut down <a class="tm-topic-link mighty-topic" title="Autism Spectrum Disorder" href="/topic/autism/" data-id="5b23ce6200553f33fe98da7f" data-name="Autism Spectrum Disorder" aria-label="hashtag Autism Spectrum Disorder">#Autism</a> </p>
    Community Voices

    Shutdown #Autism

    <p>Shutdown <a class="tm-topic-link mighty-topic" title="Autism Spectrum Disorder" href="/topic/autism/" data-id="5b23ce6200553f33fe98da7f" data-name="Autism Spectrum Disorder" aria-label="hashtag Autism Spectrum Disorder">#Autism</a> </p>
    Rome The Spoon

    11 Painful Symptoms I Experience With Functional Neurological Disorder

    April is all about raising awareness for functional neurological disorder (FND) and I wanted to do something particularly special after being inspired by FND Hope: I want to share my story with the world. I haven’t talked openly about my struggle with FND, but I think it’s about time I did because I have finally come to terms with it, and I am learning how to live with it. Functional neurological disorder is basically where the brain sends the wrong signals to the rest of the body, resulting in an “out of the ordinary” response to both internal and external stimuli. It may seem out of the ordinary to everyone else, but it is my everyday experience, and it is perfectly normal to me. I have struggled with this now for nearly six years, starting with mild symptoms like muscle fatigue, and escalating over the years to more extreme symptoms, such as loss of sight. However, as the symptoms have escalated, my ability to regain some control has also increased, so I am able to handle both my mood and physical behavior during my episodes. FND is actually very common, but it is not widely heard of. FND is the second most common reason for a neurology outpatient visit following migraine/headache, making up one-sixth of diagnoses. Based on a 2003 study, neurologists in Scotland estimate 5,000 new cases are reported annually. So, why don’t people know about FND? I’m not really sure, to be honest. FND can be genetic or due to a trauma that reprograms the brain to “survive” which results in these “survival” symptoms. My FND is a result of trauma. I was bullied intensely throughout my childhood for being different, and at the time, I did fear for my survival because I never had a moment to relax and take a breath. I was always on edge trying to anticipate the next move and avoid confrontation. This became a norm for me, and this soon became my way of life, resulting in FND symptoms at around age 12 or 13. My legs gave out on me after a tendon injury, which lasted seven days maximum, and resulted in me being in a wheelchair for a year. From this moment onward, I experienced intensive testing that all came up negative. I got the temporary diagnosis of reflex dystrophy syndrome (RDS), but a blood test soon proved this was not the case. My first year of college was a struggle. My legs gave up after the first month and this is when my symptoms started to escalate, and the more severe symptoms entered my life. Up until now, I had only experienced muscle fatigue and leg paralysis as a symptom … so what happened next was terrifying at the time. I started to experience arm and leg paralysis simultaneously, sometimes escalating to full-body paralysis where I could only move my eyes. I used to cry in these moments, and it would break my family’s heart. My vision deteriorated and I was forced to use a computer for all my work — this is basically a positive feedback loop as this is no good for my eyes, but I have no choice. It wasn’t helped by the fact I still had to endure tests during these episodes to try and find out what was wrong, and this stressed my brain even more. During Easter, I finally got the diagnosis of FND and I would have to restart the first year again the following school year. From April to July of that year, I experienced my first ever dissociation episode which lasted for three continuous months. I reverted to a childlike state as a defense mechanism as this was a time where I didn’t experience any stress, so my brain was trying to keep me safe by doing this. When I came round from this episode, I started to experience memory loss and memory fog for the very first time, which is still infuriating to this day, and means I struggle a lot with numbers. I cannot do math at all; I don’t know how to divide, multiply, add or subtract numbers. I don’t know the value of money, what is expensive and what is cheap. I don’t know how dates work, or when my birthday is or how old I am. This makes me feel very unintelligent all the time and I feel I have completely lost my independence. My mum is now my official carer and my appointee and has to make decisions for me as I am deemed not in the right state of mind to make these decisions; this has meant I have had to significantly change my plans for my future. There is great variety when it comes to FND symptoms and they are usually unique to each patient. The symptoms I experience are as follows: 1. Limb paralysis/muscle paralysis. This is exactly what it sounds like. I may wake up one morning or experience a particularly stressful event (something as simple as forgetting to do my homework is seen as super stressful), and I can lose feeling and control of my limbs. There have been times when I have literally been trapped in my own body and I can only move my eyes side-to-side; there is nothing more terrifying than not being able to do anything as your friends and family cry with fear. I couldn’t comfort them or reassure them this would go away and, since I am partially sighted, I can’t even look the people I love in the eye. 2. Chronic fatigue. Because of the way my brain is programmed, I expend more calories and more energy carrying out simple tasks (such as, picking something off the floor) compared to other people. Therefore, it is very easy for me to become extremely tired. After having a long conversation, I am usually physically exhausted and mentally drained; my muscles hurt, and I can barely stay awake. Sometimes this will happen in the middle of a conversation with someone, and people consider this rude and think I am bored of them … it’s not that, it’s just I am spending a lot of energy and brain power trying to gather my words and form sentences. 3. Chronic pain. I am always in pain. Walking around, sitting still, talking, eating, exercising — I’m always in pain. It’s not always at a 10, it’s mainly at a four or five, but my muscles are always hurting, my nerves are always firing, my brain is always thinking and I never have any downtime. 4. Visual impairment. I have been partially sighted for about five years now. It started with faint blur around objects and light double vision. Now, five years later, it has escalated to the point where I see no outlines and only blurs of color; the way I describe my vision to others is like looking into a kaleidoscope, just blobs of colors. I only know what my girlfriend looks like from photographs, I have never seen her in person properly; I haven’t seen any member of my family clearly in years. I haven’t properly read a normal book like a normal person in years, which is a shame because reading used to be on of my favorite things to do. 5. Dissociation. This is definitely the most random of all my symptoms; I like to describe my brain in these moments as a like the hare on a greyhound track and there are multiple dogs running after it. Sometimes, one gets the lead and gets control of my brain for a while, but soon another catches up and takes controls. This is pretty much a constant symptom, so my state of mind is in a constant state of flux. 6. Memory fog. This is probably the symptom that bothers me the most in my day-to-day life. My brain is always running as I am always on an adrenaline rush, so I have no downtime and my brain can get very tired. It means I really struggle to hold a conversation for a long time because I expend a lot of brain power and energy trying to form sentences in my head, so it drains me, and I get both physically and mentally tired. This means I struggle to physically and mentally function, which usually results in my muscles being very heavy and weak. Sometimes, I can barely pick up a cup or cutlery, and I struggle to remember simple information and even my own personal memories sometimes. This can get so bad I don’t even recognize my own family or my own home. 7. Sensory overload. Because of the way my brain works, I find it difficult to focus on more than one task, so I am prone to sensory overload. My brain is always running as I am always on an adrenaline rush, so I can get very tired when trying to interpret multiple stimuli. When I visit my chiropractor, I take a heart rate variability (HRV) test to measure my brain activity in relation to my heart. The main reading we focus on is the power section, which shows how much energy that is supposed to be channelled into growth is actually channelled into my “fight-or-flight” response. An average reading would be about 250. My latest reading was 6500. This usually indicates when I am about to “crash.” 8. “Alice in wonderland syndrome” (AWS). This is a visual distortion disorder. It is moderately rare and also known as Todd’s syndrome, named after the psychiatrist who first recognized it. It’s where a person experiences a distortion in how they visualize objects, including themselves. I experience episodes where I perceive myself shrinking and the world getting bigger. Sometimes I experience myself growing and the world shrinking (this is usually followed by a blackout as I think I have hit my head on the ceiling). I also experience time distortion where time feels like it is moving faster or slower than usual and all sounds seem loud and echoey. These usually occur after or before a migraine for me. 9. Loss of speech/selective mutism. This can occur in one of two ways: Either my voice box and vocal cords become paralyzed, and I physically cannot talk. Or, my brain is too tired and overloaded to form sentences, so I choose to be mute. When my vocal cords become paralyzed, it’s like mouthing and trying to talk properly, but there is no sound coming out, the way I function is not changed, it is just that I cannot make a sound. When I choose to be mute it is because my brain is too overloaded to understand what words mean and how to form sentences, so I save my energy and use an assistive communication technology. I use Leeloo which is designed for people with autism, but is perfect for me as it shows pictures along side the words, so if I can’t think of the word I want, I can look at the pictures and that can remind me of the word I am looking for. 10. Loss of hearing. Because of the way I am wired, I am particularly sensitive to sounds within a certain frequency; sounds such as fire alarms and smoke alarms tend to cause my nerves to overexert themselves and I usually completely lose my hearing temporarily. This can be a pain, but I now have discovered plenty of apps, such as Leeloo to talk for me and a listening app to display what people are saying, that help me function as per usual. 11. Blackouts/non-epileptic fits. This is definitely the hardest symptom to deal with for both me and my family. These are so random and there is no warning when these will happen; I could be walking into a room and just drop from an upright position onto the floor and either fit or lose consciousness. Sometimes, it can be a loop of a blackout going into a fit into another blackout and so on. Sometimes, I could be sitting at my computer doing my work and just slide off my chair and onto the floor. It is definitely the most worrying for my family and they always sit by my side and reassure me I am safe to wake up and everything is OK. My mum has recently started playing meditation music whilst I am unconscious, and it seems to minimize the amount of fits I have whilst blacked out. These fits are very violent, and I usually end up hurting myself due to muscle spasms (such as hitting myself in the throat); my family describes them as if I am fighting someone. Living with FND takes more of a toll on my mental health than my physical health. I have developed generalized anxiety disorder (GAD) and panic disorder as I am always worried about what is going to happen next and I am always thinking of what could cause an attack. Because of this, I am never living in the moment, I am never enjoying myself or not thinking about my disorder. My life motto is “don’t let my disability define my abilities,” but I definitely limit the opportunities I take up or my future life because of my disorder. One memory that really sticks in my head is when we were having a family holiday to Scotland and we were sitting in a restaurant, and all I was thinking about is how to angle my body and how to sit so I could pass out in the safest way. My mental health is definitely improving since I have found some devices and such to help me function. Since getting my cane, I have never felt more confident in myself. I have no depth perception, so I would fall over a lot and I would hang onto my parents’ arms and not really branch out or go out by myself. Before getting my cane, I would use echolocation to create maps of places I visit a lot, so I could move around rooms without tripping over things or falling over. I still use this now, but since getting my cane, I feel more at ease and now visit places I don’t have a map of without the fear of falling over or hurting myself. I find it very difficult to form social bonds and relationships as I scare a lot of people off with the way I react to certain stimuli. I have a very protective state of mind where I try to minimize the misery I cause. In my opinion, one person being miserable is better than five being miserable, so whenever something is bothering me, I usually keep it to myself, which is the worst way to deal with my disorder, but that is the way I am programmed because of my disorder. FND is one of the most common, but one of the most misunderstood disorders that exist. I have been told by many people, including medical professionals, the pain is all in my head, or I am making this up or that this simply isn’t happen …and it shocks me how many people dismiss something they simply don’t understand. Just because you can’t see my pain, doesn’t mean I’m not in pain. When I got my cane, I was shocked how many people now realized something was actually wrong with me. It’s as if I need to justify my disorder rather than explain it. This disorder needs more representation and I hope what I am doing here is the start of more FND representation worldwide.

    Community Voices