Selective Mutism

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Selective mutism and me

I’ve had selective mutism (sm) for pretty much as long as I can remember. Teachers were constantly convinced I couldn’t talk at all. I didn’t realize it was something I still struggled with until recently. This was because when you look up sm it mostly shows things pertaining to children who have it. It wasn’t until I looked deeper into it that I discovered it’s not something you always grow out of. Having sm and social anxiety together is like a nightmare. Any social situation feels impossible. I’m quickly labeled as the quiet one. Being at work can be torturous because I see my coworkers talking and laughing freely together like it’s nothing. I try and want so badly to join them but it feels like I just can’t. If someone even says “hi, how are you”? It’s like my whole body freezes up and I cannot physically open my mouth. Words float around in my head to say but my mouth just won’t open to let them out. I few trapped. And the hardest part is no one gets it. To them I’m just shy and quiet. It’s almost funny to them. I hear even from my own family jokes about how I never talk. I Can to them it makes no sense it should be easy but for me it feels impossible. I do want all of this to change though. I want to get better. I know it won’t happen over night though. I’ll admit it’s hard when it feels like any progress you’re making is too miniscule to even notice. But when I see the way others so freely socialize with one another I try to remember my goal.
Sorry that was long but please if you have similar experiences share them in the comments.

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CAMHS are failing their patients

When I first attended CAMHS I was a lost, depressed eleven-year-old girl, who was hospitalized for self-harm just weeks before. A member from the CAMHS team had come to visit me on my last day, wanting to assess me to see if I was in need of therapy. They asked me questions about my life, my troubles. If I knew then what I know now, I would have never said a whisper.

On my first day in I was met with a cold, Italian woman who was very upfront and intimidating. The first thing she had asked me about was my self-harming. I tensed up, this was a sensitive subject for me and made me vastly uncomfortable. She had told me to roll up my sleeves so she could see my scars. I refused. She insisted. I kept refusing and she kept persisting until eventually I gave in. she took a quick glance and said “infected”. (Which I later found out from a doctor that they were in fact, not infected) She kept talking and talking and I stayed silent. She told me that I should go on some kind of medication to help with my anxiety and would see me again in six weeks’ time. I was feeling hopeful, like I was finally getting the help I needed.

Six weeks had passed until I saw her again. She asked me how I felt, and I wrote down I was feeling like a zombie. She upped my dosage. I would see her again in six weeks.

Another few weeks went by until I saw her again. I had made the decision to stop taking my medication, because I didn’t feel like myself. I felt like a shell of who I once was. Instead, we decided to continue with “therapy”. I say therapy lightly because it was mostly me writing down my feelings, and them telling me to “take a bath” or “go for a walk”. Then, a few weeks later having to repeat myself because they never kept records of what I was saying in our sessions. Each time I would express my feelings, I was met with same reaction as previous, like this is the first time they were hearing what I was saying.

A couple years went by like this; I was losing hope. Nobody was listening to me, nobody had time for me. I made the decision to leave, I was sure this wasn’t how it was supposed to go. These people were professionals, they were supposed to be helping me. But all it did was make me feel like I was slowly losing myself.

When I left, I had gone to enable Ireland and got a diagnoses of ASD and Selective Mutism. They advised me to go back to CAMHS to also get help with my OCD. This irritated me but I also thought maybe when I go back, this time it might be different. I’d have a new therapist, maybe they would help me. I was wrong.

That new worker was different, but not in a good way. She would talk to me like I was a six-year-old, who couldn’t understand big words that her and her educated friends used. They only advice I got from her was “have you thought of trying medication?”. She would know what my answer would be if the workers ever wrote down anything I said or did.

I would attend an appointment every few weeks, and every time would feel like Groundhog Day. “On a scale of 1-10, how do you feel this week?” and “have you considered going on more medication?” or “whenever you feel down, maybe you should take a bath or bring the dog for a walk”. Ah, yes, a bath. A great place for a suicidal person.

One day they had told my parents that they didn’t see how they could continue with me because I couldn’t communicate properly, due to my selective mutism and ASD. I left that session feeling abandoned and worse than ever. I felt they had given up on me, that I was a lost cause that couldn’t be saved.

I spent many years after that the same way I had been since I was eleven years old. Except with even more problems than before. I had developed an eating disorder, my mood swings were out of control, I was ruining every friendship I ever had, and I was engaging in impulsive self-harming behaviours again. Things in my life were out of control, and I had no other options left. I had to go back. My naive little brain thought “Maybe this time it will be different. Maybe this time it will be better. Maybe this time they’ll help me”. I was wrong. Again.

I was still seeing my pervious worker, except this time there was another person there to help with my eating disorder. She was blonde and always put together, she often talked about her looks and her obsession with always being tanned. She would make jokes about how she was “tanorexic”, and that is why she constantly needed to fake tan. The treatment was even worse than the failed attempt at humour. it consisted of being weighed, even when I didn’t want to. And then telling me what I weighed even when it triggered me. She would tell me how instead of my fat free yogurt and blueberries, I should have some digestive biscuits or a bar of chocolate instead. She assured me that theses biscuits wouldn’t harm me, in fact she had read some studies that actually said blueberries were really bad for you and caused cancer. So, if I looked at it like that, the biscuits were the better option.

The other session I had with the Italian woman was eventful. I had told her about my severe mood swings, and I had started self-harming again, even worse I was thinking of taking my own life. she replied with “whenever you feel like that you should go for a long walk. At least an hour a day, and also go to your local chemist and get a vitamin B-12 supplement. This should help with your hormone imbalance”. This was the first time I had cried at a session. I felt like I was talking to someone through a sheet of paper, they could hear my cries, but they couldn’t see it. All I said was “what is a walk and some vitamins going to do for me?” she replied, “it helps the brain”. I cried and cried until the session was over. I couldn’t stop the tears from falling. she had opened a gate in me that I couldn’t close.

I had just turned eighteen and was in need of a referral to the adult mental health services, so I had no choice but to stay put, and push through. It was about three months later until I got my next appointment and I once again, met with the Italian psychiatrist. She looked at me curiously and said “wow, you look so different. Like actress in movie. So pretty now” In those 3 months I had lost weight and gotten contact lenses. “Not that you weren’t pretty before, but you know what I mean” she laughed. I didn’t. we walked into her office, and she asked me “so last time I see you was few years ago, yes?”

It had been

Three months.

The other worker in the room smiled at me and sat in the corner, she was new, and didn’t seem to have much experience. But she was nice to me. The Italian psychiatrist said I looked happier, brighter, and I seemed better now because I was talking more. like I was cured. I told her about my self harm relapse and my how my eating disorder had only gotten worse, how the mood swings were as bad as ever. She asked me over to her desk and draw a picture of a tree. I was confused but did it anyway. After I had finished my mediocre picture of a tree, she pulled out another piece of paper, a drawing I did when I first came to see her. She said she could tell I was happier by the way I drew my tree. The previous picture was dark and there were more leaves. The new pictures were lighter, with less leaves. She said it was a psychology method to determine your state of mind. The only difference between these photos was that I drew them with a different shade of pencil.

The other worker in the room got up and told us she had to go and get something from another room. I sat with the psychiatrist and told her that I wanted to be referred to the adult services. She said that they might not take me, because there wasn’t a lot “going on” with me. Or in other words “you aren’t serious enough”. The other therapist had returned to the room at this point, even she was shocked.

I had enough I was angry, I was upset, I had all of this built-up emotion in me that I needed to let out. I let it out


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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Functional Neurological Disorder (FND)

I have really been struggling with something called functional neurological disorder (FND) for almost a year now. I get non-epileptic seizures, facial spasms, selective mutism, and occasionally trouble walking and moving my legs. It makes me feel really hopeless 😩 because my doctor said there is nothing she can do about it - she just tells me to manange my stress. This disorder is also know as conversion disorder, which is a very archaeic term from the time of Freud. Back then it was mostly women afflicted by it, and they called it hysteria. Even when I was in the hospital 🏥, they wrote in my chart that I was “faking a seizure”. There is nothing fake about it - it is a very very real and scary experience. Just because there is no “known” physical cause shouldn’t make it any less valid! I also am frustrated by the fact that this disorder is called “functional”. It is anything but. It can be very distressing and incredibly disabling for the individual experiencing it. I am writing ✍️ this post to bring awareness to this issue, and the problem with the medical system where if doctors can’t find a cause of the symptoms, they say it’s all in the person’s head or accuse them of faking. These leads people who are struggling feeling upset and invalidated and leading to a distrust of doctors which could make them less likely to reach out for support in the future. This is highly damaging. Just needed to rant and ask has anyone experienced anything similar with the medical system or symptoms of FND? How do you cope? #FunctionalNeurologicalDisorder #non -epileptic seizures, #Selective mutism #mobility issues #It ’s not all in your head

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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?

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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

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Shut down #Autism

Shutdowns and autism is too different battles, with autism it’s the sensory overload with the shutdowns is blocking the emotions which led to breakdowns selective mutism. I’m not saying that it’s the same for everyone who’s autistic, it’s not , everyone is very different and they may show different signs of shutdowns whether it’s stimming behaviour, head on the table , curl up in a ball even staring in thin space. Sometimes there’s triggers and sometimes there’s none.
I had shutdowns in the past very rarely I have them now, it’s like someone took away all you’re sense abd you’re stuck in a cycle of deafness as you can’t hear someone talking , but you can only hear you’re inside voice in you’re head.

It hurt please stay away from you, no don’t leave as I cannot hear you far away from me. I can’t think as my head is closing in as you can see.
It hurts please don’t force me to eat, I can’t stomach anything as my intestines are twisted inside.
It hurt please don’t touch me, every touch is making me Finch like thousands of thunderbolts.
It hurt please stop me from shaking , I need somewhere I can feel grounded.
It hurt please help me get my voice back, it feel my voice is trapped in a cell.
It hurt please stay with me , talk to me , I need to feel secure.

Having a shutdown in any situation or environment can be painful as it drains our energy out completely. Knowing when we are in a shutdown and taking us to a safe non judgement place is a essential for us to recover after the shutdown is eased. Never tell them to get over it or snap out of it. As it can make the shutdown last longer and harder for recovery, be calm , understand the trigger and stay with us to the end.