IamA college student with a history of Selective Mutism AMA!

How did you get through school while mute? Would/did your selective mutism allow you to find other means to communicate such as sign? Did you and your parents ever have trouble working with teachers and school administration to get accommodations? How did the other kids treat you throughout the years? Did it change drastically as everyone got older and started to understand more?

Thanks for doing this! It's really interesting.

I was given an IEP early on, so my grades wouldn't suffer as a result. So, I never gave presentations and I would answer questions by writing them down. I wish I learned sign in school. I'm learning it now and it would have helped a lot just for the basic stuff (can I go to the restroom, etc). My classmates treated me very well. They would get very defensive if they saw someone try to pick on me or something. This was mostly because I grew up in a small town and the people I graduated with were the same ones who I went to kindergarten with, so they understood me and were protective. I was incredibly lucky in that aspect. Normally, I didn't have an issue with teachers, they actually liked me because of how quiet I was lol. There were a few instances where I had teachers who didn't understand my condition and would give me hell for not talking. The school administration was okay except for the special education director. At my yearly IEP meetings she would constantly put me down by saying I would never succeed in college, have a boyfriend or hold down a minimum wage job. I've since proven her wrong in all three of those aspects, so she can go to hell.

Do you ever go hiking or camping? When you're out in nature by yourself, do you find that you can speak better?

Do you have any anxiety when writing?

Yes! I love camping and hiking! As long as there aren't many people around, I'm usually fine. I absolutely feel anxious while writing. I often reread things several times before posting them. College papers take forever for me to write because I get so afraid of making mistakes or being judged for what I am writing.

So is it difficult for you to answer these questions, since you're writing to the internet?

Not really. My meds have made me more comfortable with communicating. Plus I have always wanted to discuss SM and social anxiety with other people. If it's something I'm passionate about, I don't mind throwing something out there.

I was selectively mute also for a few years. It is like your mouth is duct taped together. How was your social life in your school years and how is your social life now? Do you have friends and relationships?

Yeah, it was pretty rough. My social life growing up could have been way worse. I was never bullied, if someone would make a comment or try to put me down in some way I ALWAYS had peers who would stick up for me even if they were not close friends. I was very lucky in that aspect. I had no trouble making friends in school. Many people accepted me and loved my sense of humor. However, college has been rough. I'm a senior now and I really haven't made any friends. I've made a few acquaintances, but nothing long lasting. I do still talk to the friends I made growing up, but I have been feeling a bit lonely lately. More recently, I met a great guy who accepts me for who I am and we've been dating for 5 months now.

Holy shit! How do you get diagnosed with this because I have a long history of being silent like 70 to 80% of the time. My brain effectively shuts off when I get in a presentation based setting. Also, I just don't talk to most anyone. Is this similar to what you have experienced?

If you have a family doctor, you could get a referral (that's how I was diagnosed). If not, you could probably find a behavioral health clinic or something like that. Yeah, that could be SM. That sounds pretty similar.

The first time I heard about selective mutism was because of the Virginia Tech massacre killer, Seung-Hui Cho.

How has that incident affected awareness of your disorder?

I worry about what people who know about that think. I remember being in school and thinking that people were going to make comments about me shooting up the school. Since SM is pretty rare, I don't know if it affected everyone the same. I try to remind people that Seung-Hui Cho also had some other issues (major depressive disorder) as well all of which could have been prevented or treated by some decent psychological counseling. I once read a post (on reddit, I think) where one of his classmates shared a story from a class they had in college where the teacher asked him something and he didn't respond, so the whole class started laughing at him. That hurt me on so many levels. I want to educate people about SM because I have had to explain it to psychiatrists and other medical professionals before and that's kind of ridiculous. If I have to explain it to them, they probably don't know how to go about treating it.

I'm really interested in the whispering. If you were somewhere you couldn't be overheard, could you speak to these people in a normal tone of voice? Or is the whispering somehow intrinsically less anxiety producing?

No, even if I knew nobody else was around, I would still whisper. I remember when I would invite classmates to my house for a sleepover or something and I would still just whisper. It would be the same if I saw them at a grocery store or something. It was awkward sometimes, but that's how I dealt with it. Nice question!

Hi, on the back of that question, if you always feel comfortable whispering does it make you feel uncomfortable if the people you are with then talk back to you at normal volume?

I never really thought about it, but I guess it didn't bother me.

Do you ever sing in the shower?

Nope, never have! I'm too afraid someone will hear me.

Wow you just made me realize that a childhood friend of mine had this same disorder.

We went to preschool together up until around 2nd grade. I remember he was absolutely silent, would never speak. I was really close to him though, and I could tell he felt more comfortable around me. One day I remember he leaned in as if to tell me a secret and he just whispered into my ear "hi".

After that he started saying a couple more things in secret but to a very, very select group of people, me included. Such a nice kid.

Was your childhood experience similar to what I described? Glad to see you managed to learn to live with your disorder and are raising awareness for it!

Yeah, I also had a bunch of classmates tell me 'secrets' because they knew I wouldn't say anything to anyone else. That's an awesome story btw.

OP, you're probably done answering questions at this point, but in case not:

In a mute situation, would you still make involuntary noises? A laugh? A groan of pain if you stubbed your toe on your desk?

I would laugh quietly with my mouth closed and if something was really funny, I would cover my mouth and laugh. But, yeah even my sneezes were quiet.

Do you take any medications for this and do they help?

Yes, I am currently taking prozac and buspar. It has helped a lot! The big thing is just finding the right dosage with the right meds. I took zoloft for a good chunk of my childhood and it turned me into a zombie. I took lexapro for a little while, but I started having some horrific mood swings.

You might want to edit your proof photo so that your paper from your doctor does not show both your first and last name. That being said, what did it feel like if/when you tried to talk? What does it feel like now when you feel drawn back to selective mutism?

Thank You! I fixed it a few hours ago when I initially saw your post. The best way I can explain it is it felt like my throat was closing up. My urge to be mute isn't so bad anymore, but when I was having problems it helped knowing that my college classmates didn't know of my diagnosis, so it didn't have to exist in that setting.

Do you have issues with the number of people you are around, or is it your familiarity with those people?

Mostly familiarity, but I do have trouble sometimes in groups of people I'm close to.

What are you most tired of explaining about your diagnosis?

That I wasn't being stubborn or oppositional, I was mostly scared out of my mind.

What type of career path are you looking to get into after you graduate? Do you feel that your mutism will hinder your job prospects?

Thanks for doing this AMA!

I am actually getting ready to graduate with a B.A. in psychology. I'm going to take a little break, but I'm seriously considering going for my master's in mental health counseling. I hope with my personal experience, I will have a shot at that.

Does the Big Bang Theory character with Selective Mutism piss you of or is he written realistically?

I haven't watched The Big Bang Theory for a few years, but it seemed accurate, from what I remember.

Have you ever read the beginning of Infinite Jest? Being somewhat relevant to what you described.

I have not. I've heard a lot about the book. I'll have to check it out.