“What is your name?” someone might ask. It’s a simple question, but when I try to make the sounds that form my name, other words push and shove their way forward. Instead, “you may not spit,” or “Rosie’s not here!” are examples of seemingly random nonsensical, declarations that come out of my mouth. I call these utterances my “mouth words.” They could be seen as traitors, belligerent bullies who seek the spotlight, but they are not. My mouth words are funny to me, but misunderstood by others. My typed words are hard for me, but understood by many. Mouth words are witty accomplices to a mind that speaks a different language entirely. There are no words, but instead a beautiful environment where feelings, sensations, colors and sounds coexist. I often think if all humans could experience the world in hi-res, technicolor, surround sound as I do, everyone would be happier. I have come to understand that my mind is not like most people’s.
I am Autistic.
Many people believe autism describes a simple mind, and that someone like me has no understanding or awareness of my surroundings. My hearing is excellent. Things like the honking noise made by impatient drivers who think the sound of their horn will miraculously clear the road ahead is so intense I can become lost in the key of their horn. I am compelled to imitate each one I hear. Car horns I can respond to cheerfully. It’s the same with light. The harshness coupled with bloated heavy air is so intense I become overwhelmed. I wonder if I am too aware of my surroundings.
Some people have suggested I am unable to feel empathy and assume I have no desire for human interaction and friendship. I feel people’s intentions and feelings so intensely it can be difficult to concentrate. I am too sensitive to other people’s sadness; it is akin to drowning or like being smothered by the weight of damp earth covering your entire body, filling your eyes, mouth and ears. Piercing shards of past and present pain cause me to turn away or make faces or laugh outloud to lessen the weightiness. There is no lack of empathy, but rather an unmanageable abundance that defies my best intentions. It is during these moments that I flounder because society expects less of me and not more. I listen to the words spoken by people who are crying or shouting. They say things like, “I’m okay,” through tears or “No, I’m not angry,” as they clench their fists, but their words are in direct conflict with their actions.
Others believe that I do not have feelings at all. How do you defend yourself against such accusations? Trying to convince those who believe I’m an empty shell is impossible. Adding to this is my inability to use spoken language as expected. “No, you cannot put putty in your mouth!” in answer to “what’s wrong with that girl who is crying in the corner?” does not help change the minds of those who believe me incompetent and without feelings.
If I tell my mouth to behave and demand that certain words come out, stress barks and growls, jarring my mind so that it folds in on itself and favorite scripts begin. “You cannot throw your lunchbox at Kevin!” or “Maddie’s not here anymore” helps me control the waves of anxiety that press up against me. Hearing my voice keeps the dark, piercing void of nothingness from engulfing me. Clenching down on my forearm as hard as I can is another way to control the tidal wave of stress. A complete set of teeth marks embedded into my skin might interest those in the field of dentistry, but for most people witnessing, horror probably best describes their response.
Some find self injury baffling, even terrifying and something that must be stopped at all costs, even if this means far more painful interventions inflicted by others than anything I could do to myself. I see it as a way to care for and acknowledge the overwhelming onslaught of unruly feelings. This idea is not embraced by “autism experts” who use words like “behaviors”, “defiant”, and “oppositional” to defend the use of isolation rooms, restraints and even electric shocks for people like me. It seems abuse by others to prevent self injury is permitted, even applauded, though the logic is lost on me. When my mind is caught in a downward spiral I need calm reassurance. My frustration often expressed in screaming, repetitive scripts grind down the patience of those witnessing. My screams threaten their kindness, I know, but I cannot stop once begun and pounding terror is all that remains. Only the dedicated few talk of love during my episodes of furious stress and suffering. Their love is rejuvenate and restores my faith in this awkward world.
I am exuberant, overflowing with energy and love music. I’d rather gallop than walk, bounce than sit quietly. I’m happiest with high volume, intense beats, jumping, arms flailing, pounding bass, total darkness or bright stage lights and a microphone in hand. I want people to hear me. I am as versed in making silly faces as I am in my favorite songs and my neurology. My mind is lightening fast, hungry, logical. I’m a seeker, determined, a lover of laughter in a body trying to keep up. It can’t, but I’ll keep trying.
Showing kindness toward those who are different and embracing our imperfections as proof of our humanness is the remedy for fear. Love is a small word, but allow yourself to be consumed by the sensation and the world becomes a place of infinite possibility. I want my hard won words to give hope and inspire people to change how they think about autism and someone like me.
“What’s your name?” people ask.
My name is Emma.
Photograph: Pete Thompson Photo
Hello Emma, I really enjoyed reading your blog, and I want to read more, so I have chosen to click that follow button your so passionate, if you wouldn’t mind, or even anyone who reads this, please take a look at my posts, huge appreciations for anyone who follows me, I’m starting of small aiming high! “The only way is up!”
Emma, you are wonderful, and I am listening. You can teach me a lot.
Reblogged this on Melting-Pot Dharma and commented:
This remarkable girl is 13 and has the ability to put in writing the words that she can’t make come out of her mouth. She explains her autism in ways we can all read with compassion and understand.
Highly gifted teen. Again thank you for your words Emma – I think by articulating this way, this post can help people understand the *person* inside the “presentation” they see – the body, the actions, the verbal words. For some, it may even help them to understand there *is* a person, and hopefully this will give them cause for pause in future when they feel confronted by others in ways that make them feel uncomfortable.
Beautiful photos too by the way. Thanks for sharing your words.
Amazing post, thank you Emma!!!
Reblogged this on idontdogossip and commented:
Amazing and Inspirational
Please check out my blogs I love to tell stories and help others, but I need you and others help
Can you reblog me too! Would love to get your word out 🙂
Sorry? Would you like me to read your blogs?
Sure I can 🙂
This post was quite a read. It was very powerful and thought provoking. Thank you for letting us into your world, even for just a minute.
Hi Emma! So nice to meet you… Excited to start following your blog and reading your thoughts.
Loved this! I work with young students with Autism & varying degrees of the Spectrum. You are right about your mouth words. Everyone needs a voice and I am glad to have found yours.
Thank you so much for your beautiful writing. My son is 7 yrs, and like you, autistic. He’s a loving, cheerful boy, but I often wonder what goes on in his mind. Thank you for giving me some idea.
I thought this easy beautiful and brilliantly written. I’ve shared it with many of my friends and hope the message continues to spread.
~Erin from erinannewrites.com
I scored really high on empathy. It does make me wonder if I am over empathetic towards people but I am learning to switch it off. It is painful and makes your body ache. People think that Autism is like a split personality…. nothing such the sorts. We have a passion for learning and when we are driven – we keep going.
Mom, read this. This girl communicates by RPM.
Sent from my iPad
You are a beautiful soul. The societal stigma attached to those with Autism disorders and its broad spectrum is merely a sign of our own ignorance and our devoid spiritual energy. Only enlightened souls such as yours can endow our REAL lives, as they’re meant to be. Spiritually. Hope you stay well. Blessings.
Gorgeously written. Thank you, Emma xoxo
Thank you for this education, you are so inspiring and raw. Please keep writing.
Yes Emma, me too. I have Cerebral Palsy, and like you, my insides and what people see of me, don’t match. I always feel like screaming. Sometimes I do, and sometimes, like you, I write.
A superb read; engaging, absorbing. And as for this: ‘It is during these moments that I flounder because society expects less of me and not more.’ – it makes me weep.
Hello Emma, my name is Chris. Keep writing!!!!!
Reblogged this on Go ask the Dentist and commented:
Love is a small word, but allow yourself to be consumed by the sensation and the world becomes a place of infinite possibility.
This is amazing. I am short of words.
You are amazing, Emma. Thank you for letting us delve into your world. I would love to hear more from you.
Hi Emma, what a great blog! My nephew has Aspergers and the question has arisen frequently, “Can he empathize?” I loved the way you put your emotions in writing! Thank you!
Reblogged this on ky ellen and commented:
An absolutely stunning read. Thank you so much, Emma, for your mind words! 🙂
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I am a part of my highschool’s LINKS program and was sent here by the teacher in charge of LINKS. I want to say I know what you mean, I too am on the spectrum and have been said I lack empathy because of it. I am glad you seem to react to those accusations in a kind manner, it isn’t easy for all of us to do that, yself included. I hope you keep writing.
With sincerest wishes, Patrick R.
All I can say to this is… WOW! You’ve taught me so much about autism in just this one post. My entire perspective has been changed. You also seem like a very fun person, and if we ever crossed paths, I would totally grab coffee with you!
Thank you for sharing your thoughts with us 🙂
So inspirational, you really have a way with the written word, you make me want to be a better writer.
This should be required reading for all people everywhere.
Wow!!! A blog thats truly intense. Someday i would certainly like to see more people inspired from your writing and treat everyone with respect…
Thank you for this really moving piece.I wish all the best for Emma
I’m not autistic and don’t understand what it is, so I can’t even begin to comprehend most of what you write about so eloquently. My problem is rather complicated to write about but I guess a simple sentence like “I am not me” will have to suffice.
For me it is like the spoken/written words have absolutely no bearing on what is being thought. Allowing a thought to have the “tangible quality” of text/sound, just destroys the thought!
Even writing reduces a beautiful thought into something that gets analyzed and understood completely wrong by others…and myself…Reading my own words often has me thinking “THOSE were not MY thoughts!..that’s what I am thinking…reading what I have written a second ago…and when I edited it, it wasn’t even close to becoming any more accurate in relation to my thoughts. I give up trying because otherwise this would become a letter!..It has already.
My favorite sentence so far…
“Trying to convince those who believe I’m an empty shell is impossible.”
It is one of your many meaningful statements I can relate to, having had the same feeling… but in other thought/words…so many times.
No, I am not fat and I am also not called Milton.. 🙂
Thank you for sharing your beautiful life with us.
Wow, Emma! This is unlike anything I’ve ever read. Your writing really helps me understand what you’re feeling and think–rather brilliantly, I might add! Keep it up!
“Love is a small word, but allow yourself to be consumed by the sensation and the world becomes a place of infinite possibility.”
This is precious. Beautiful words. Thank you.
It’s NOT the story, it was the person IN the story that got me thinking!
I threw my whole blog-post-plan out the (non-existent) window because I just HAD to write about your lovely blog today!
Emma, would you please do me the incredible honor of a visit?
Please don’t be too harsh with your comments 🙂
Hey Emma! You are certainly gifted with expressing yourself through writing. Your self-awareness is amazing. And thank you so much for sharing your intense story. I want to understand and be compassionate and perhaps only now after reading your words do I have an idea how to manage that. Keep being the awesome person that you are!
Reblogged this on 42 Days Younger than Kylie and commented:
Sharing this personal story of insight into the life of an amazing person.
I loved reading the positivity and openness in this post and I learned a lot. Thank you so much for writing it and sharing it.
You are very beautiful. I have a sister with autism.
you r veryy cute and beautiful. and more on your writting skill is so good .
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You beautiful butterfly ♡
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I love this essay , also the comments and how the whole situation captures our human nature we need to understand more and embrace our selves more which Emma does perfectly.
Emma, I have a grandson with autism. I understand. Your story is very well written. You are a beautiful person, inside and out. Take pride in who you are.
Hi Emma! We love you!-Emma Nancy Foote and her mom(Msama Diane Foote).
Thank you Emma for sharing your thoughts and feelings. I think the best way to understand and help my autistic grandson on his journey through life is to listen to people on the same road. I just recently found this blog so I have a lot of reading to catch up on 🙂 If I have questions may I ask you?
Very cool Emma helps me to understand my Grand-peep the other day he got in trouble at school he got so upset he bit his arm so hard teeth marks worse then ever…
Wow! Emma, your writing is hauntingly beautiful. Thanks for sharing your life’s journey. There is so much for the world to learn from your experience.
you got a gift
Emma, I am not too much older than yourself, and although I have Asperger’s syndrome– what “autism experts” claim to be on the “high-functioning” end of the spectrum– I do have immense difficultly in verbally expressing myself to most people, sometimes even tripping over my tongue when speaking to my family and closest of friends. I also have two nonverbal autistic cousins just slightly younger than me, and slightly older than you, only one of whom I see on a frequent basis, anymore. Reading your blog as well as the blogs of other autistic children, adolescents, and adults gives me hope that if I could convince my family to better assist my nonverbal autistic relations, the more-enriched and fulfilling of lives they will lead. The ignorance that society conditioned me to have towards nonverbal, so-called “low-functioning” autistic people is evaporating the more that I read and the more that I learn, the more that I compel myself to listen and to observe– and, quite frankly, I’m glad that I am not the only person awakening to the truth of the matter.
I’m not sure if you consider yourself a spiritual person, but may the Creator always watch over you, may ignorance against us autistic people squander, and may the Earth ever sustain all of her life, no matter the species. 🙏💚
I appreciate this post. My grandson on the spectrum struggles as you do. It can be very difficult. Thanks for speaking out.
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Thank you Emma! You touched my heart by sharing your perspective as I attempt to relate to my 6 yr old son that is both brilliant and pre-verbal.
I am going through a hard time in my life now,
however, many years ago,
I met a Dan, and a Emma, in San Francisco,
somewhere near to Polk St.,
and we maybe ran into each other, also in Sausalito, Ca,
where Dan liked to go to the boat dock.
I cannot remember if he was your Grandfather or perhaps a different relative.
I remember an Emma, whose family, were in, or had come from Hawaii.
I wonder if you are the Emma I met, when you were a little girl..
I do not know, and I have too many problems right now,
to be a reliable person in your life, however,
I think about the Emma I met, a long time ago, and always hope,
that I can see/meet her some day, when it feels okay, again.
I know that there are a lot of Emma’s.
So, I may have the right Emma, or a different Emma.
There is no way for me to know for sure.
I was living in San Francisco, and Marin, and maybe Sonoma County,
Now, I am going back and forth between Marin, and Arcata, California.
I just wanted to communicate to you, some time, before it gets to be a
realllllly long time.
Whether or not you are the same girl or not,
I like your blog/book,
and I haven’t had much energy to read lately, as much as I would have,
previously, so, I don’t read a lot these days, except for news that I feel as if I have to read, to keep up with what’s going on in the world.
However, I know that I like what you are doing here in this book, and am proud of your determination/effort/action of speaking out, in the world, and creating your story, out loud, for many to find, share, read, and understand.
This is so brave of you.
Thank you Emma, which ever Emma you be.
I like what you have done here.
p.s (I am now 48 ys. old.)
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