I often imagine words in fancy fonts swirling out of my mouth only to fall on the floor unheard. So many misconceptions about selective mutism exist.
By Kimberly Gerry-Tucker
Like many people who have been diagnosed autistic (in my case Aspergers), I have an overlapping condition: Selective Mutism. Over-excitability in the amygdala region of the brain is said to cause the physical inability to speak. Anxiety often becomes the uninvited guest or party crasher in the room. There is an exaggerated fight or flight response that takes place beyond my control. My body shuts down signals to make facial expressions and to speak aloud. I often imagine words in fancy fonts swirling out of my mouth only to fall on the floor unheard. So many misconceptions about selective mutism exist. Well, here are a few facts:
- Selective Mutism (SM) is NOT shyness.
- It is not ‘caused’ by a baseball, a rock, or any other trauma hitting the head.
- It can be lifelong.
- SM is not stubbornness.
- It is not manipulative behavior.
- Just because a person with SM is silent, doesn’t mean they have nothing to say.
- Anxiety plays a big part in what feels like a freezing of the vocal cords.
- There is often a hereditary component.
- ISpeak, an organization that gives a voice for people with selective mutism, says this:
They genuinely cannot speak because attempting speech rouses too much anxiety. Almost all children and adults with Selective Mutism would love to be able to speak in every situation but they cannot. They are not ‘making their difficulties up’, ‘being difficult’, ‘rude’, ‘antisocial’, or anything else.
In the book, Selective Mutism (In Our Own Words: Experiences in Childhood and Adulthood) by Cheryl Forrester and Carl Sutton, with Foreword by Donna Williams, myself and others with SM bravely and openly discuss situations where we were robbed of our very identities; OUR VOICES. I like to say “I am the poster child now for Selective Mutism” because my picture is on the cover of that book. The grade-school aged Kim on that book’s cover never received supports in school for either Aspergers or for SM. Although I feel that Aspergers is a correct diagnosis and have never doubted that for a moment, as it is very much me, and I would not change that, Selective Mutism is another matter altogether… because it is hell sometimes.
I was shoved in dark closets for hours by playmates as a child while they played happily outside the closet door, because they knew I would not cry out. I was bullied and taken advantage of a lot; by people of various ages who should have known better- as quiet children with staring spells often are. I carry some degree of PTSD from many of these incidents but I never berate myself anymore the way I used to, because I had trouble with speaking and this was from a condition I never asked to have. I am kinder and more forgiving now to the child who suffered, yes suffered due to SM, so much back then.
I drew the attention of teachers both for Aspergers and for my muteness; although I wasn’t diagnosed until 1999. As a child and pre-teen I had one friend and some cousins who put up with me, but had no relationships with school peers. I could speak around the friend and these cousins, but interestingly enough, adults were wary of a kid who did not speak and my friend’s mother asked the teachers that I never be in the same classes as my only friend was. We never were. It’s sad, because she may have served as a safe bridge to other peers. As far as my cousins, (safe people around whom I could speak aloud) they were eventually forbidden to speak to me and told to ignore me completely because the parents did not approve of a person I was “dating” (this consisted for many weeks of writing notes to him and him answering me aloud). And so as I did find a boyfriend, my cousins were taken away from my inner circle by not speaking to me for several years and my circle of people I could speak with, became even smaller. I even tried drinking at a very young age because I thought it would fix me, but I ended up in a coma. I don’t advise this foolish ridiculous cure for Selective Mutism. It can kill you. I married the boyfriend in 1988. This seemed like a ‘normal’ and ‘real world’ sort of thing to do. He is now deceased.
About five years ago I decided to go to a speech pathologist by the name of Judith Rosenfield. Judy gave me so many helpful tips! She has a gift for treating people on the spectrum; and also those with SM. You can’t really teach compassion and Judy just has it. I told Judy how much I identified with the King’s disability in the movie The King’s Speech. It brought me to tears. Even though my own condition is not stammering, as his was, I identified with his frustration, helplessness, sadness, even his anger at his inability to speak fluently. Judy changed the name of her facility to The King’s Speech and Learning Center (because of me). I think it a fine name for her Center. I respected The King’s perseverance. Because I share it.
I was at the DADD symposium in Boston, Mass. recently, where I sat on a panel with my peers, two other Aspergers’ artists. They did not have SM like me. Instead of speaking at the podium like they did, I had pre-recorded myself speaking and this was shown on a screen. I answered Q & A by typing on a laptop and my words were projected onto a screen. But at first, when the questions started, Elizabeth (Stringer-Keefe) did not put the laptop in front of me right away and I could see what she was doing. I was hoping I could do it too. She was hoping, I think, that once the Q & A started, I would begin speaking aloud the answers; but the words were wedged in tight that day. She invited me over next to her seat to type my responses. By then I was a bit overwhelmed and my answers were short with so many typos.
But I refuse to let SM have enough power over me for me to feel badly about that. I give myself the gift of appreciating my strides, and being kind to myself is very important. While I appreciate that special accommodations were made for me at Lesley College last year and at The Hynes Center (thank you Elizabeth).
I do want to speak aloud.
I want to read my book excerpts live to audiences.
I want to do Ted Talks.
Like Debra Muzikar of The Art of Autism and so many other believers, I believe in visualizing what one wants, manifesting if you will, as the first step to making something happen in your life that you truly want, however I am reasonable as I know my limitations. That never stops me from trying to push them, though! Here are some examples:
I was able to record myself speaking and put my readings on You Tube. Expression comes out of me in other ways too- through words that are written, through dramatic arts, and through painting. I wrote a memoir and I’m proud of it. I needed that outlet of expression. When my husband had a terminal illness between 1999 and 2005, he lost his speech and I literally had to become his voice. I used mime to cope. And I wrote it all down in my book: Under The Banana Moon (Living, Loving and Loss).
The Art of Autism has put my Shattered Image painting on the cover of their book Artism: The Art of Autism: Shattering Myths. In fact Enrique of the bakery, HaveSomeCake, Birmingham England, used my Shattered Image painting as inspiration for his cake for SugarArt4Autism. That painting of me looking into a broken mirror is a self portrait.
My voice has truly been represented in my art because it’s a way to work out feelings in paint. I recently did a series of sad women and angry howling trees. It wasn’t until these paintings were finished that it dawned on me that this was my way of dealing with heavy sadness during the electoral process here in the U.S., and the climate changes I am so concerned about. Also as a non-driver and “loner” I struggle with isolation. Sometimes I think my art reflects that.
It is like that with my Aspergers, not knowing the difference sometimes between a thought, a belief, an idea, or a feeling. If words are logjammed, this can lead to shutdowns, even meltdowns. If I get too jammed up with no voice for too long, then my senses heighten. I may wake up screaming from night terrors or begin to fear pressing the toilet lever down. I know, you can laugh at me. That seems quite silly but this has been plaguing me during highly stressful periods of my life for as long as I can remember. I get so sensitive when I’m stressed that the guttural plumbing of flushing toilets or even shower water going down the drain (but to a lesser degree) sounds and feels like its sucking me down and I go running from the bathroom after pressing the toilet lever. This hasn’t happened in a few years, I think, because I am able to read myself better, to be kind to myself, to forgive myself. I didn’t ask for selective mutism!
I wonder often, what if the school system had tried some of the many techniques they use for people “like me?” Would I have responded? Or would I have been “on to them?” Certainly, an early diagnosis in itself, as a child (which I did not get) would’ve gone far in sending the message there were others LIKE ME. Because that knowledge would’ve been key in not feeling so alone and different.
I continue to push now, if only a little, the comfort levels I have in place, by accepting invitations to do things like
teach a collage workshop,
sit on a panel,
go to gallery openings,
have my pre-recorded words spoken on a screen during readings
or presentations, and most recently,
I put videos of myself speaking on You Tube.
I want people to know, everyone is dealing with their own cocktail, whether or not that is nature or nurture, inherited or learned. I have never loved anyone less because they were bi-polar, or because they had Borderline Personality, autism, Selective Mutism, dyslexia, PTSD, or myriad other conditions. People in my close inner circles deal with these things every day and I know there are stereotypes and judgements made concerning all these conditions. A wise peer once told me that personalities peek through mental illness. But you have to be open and kind, patient and a real friend to see them.
Not sure what to say to someone who has any of the aforementioned neurodivergent ways of being? Then be honest. Tell them you don’t know what to say. Ask questions. Ask how to be of support. But please don’t buy into stereotypes or judge. If you have heard what may be a myth, but you aren’t sure, then ask.
I believe brains are like fingerprints – no two alike. There are similarities of course, but every brain is one of a kind. The manner in which we react, act, interact, think and process information are only components of a person as a whole. I have spent the whole of my adult life expressing myself in written words and the arts, in an attempt to have people be aware of communication impairment, not only in April or May Awareness months, but every day. The following is worth repeating here (I first heard the saying on the website Wrong Planet):
Being quiet is not synonymous with having nothing to say.
Check out my You Tube videos by googling Kimberly Gerry Tucker videos.
My memoir Under The Banana Moon can be found on Amazon.
My blog is called Ravenambition.wordpress.com.
May is Mental Health Month. The Art of Autism is featuring bloggers with dual diagnoses. Email the email@example.com if you have a blog to submit.
I have never heard of selective mutism until I read this.Both of my children are on the spectrum and thru them I was able to figure out myself. I now know I have the same struggles and always have just undiagnosed and suffered in the same way as you.from what I learned thru books internet etc. That an autistic who is nonverbal is not by choice so I was very confused about myself because I knew I could talk and had plenty to say but that would go right out the window when someone would engage me.so thank you for writing this it very well explains how I’ve always felt and I now feel OK to forgive myself for not being able to speak
Thank you Kimberly, Your words have helped me understand so much about myself and my daughter. I always thought there was something wrong with us, but now I understand. I LOVE your art btw!
To Kimberly: This has been so very helpful, thank you. I had some of these symptoms, along with my twin sister, and remember the confusion of other school mates trying to see if they could do anything to make me get angry because they must have found my quietness to be so odd. I only had full on selective mutism with relatives who were strange to me. My son was diagnosed with selective mutism in 5th grade, after a preceding diagnosis of OCD, and social anxiety, and post diagnosis of autism spectrum disorder. He developed school refusal. I have not found other people who can explain how I might help my son ( now 24) with an aversion to any self expression. For a long time he did not even want his name to be spoken by teachers. He would not write his name, not submit any writing of an opinion nature, nor any artistic expression, to compensate, in a way, for selective mutism. He remains that way, and he is very careful about identity protection. He does not ever speak to his Dad, my husband, in our otherwise relatively normal nuclear family. This creates a lot of tension with my husband. My son does not have a phone or email or a photo ID, although I have been trying to work on these things with him. He Is eligible for subsidized disability housing right near by, which he would like, but he will not get a photo ID, all his worse anxiety triggers would pile up at the DMV. Anyone else experiencing this?
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