*This was an assignment for English Composition to create a podcast about something you care about. This is mine after many revisions and incorporating notes from my teacher. A written transcript of the podcast is below, but if you can, listen first!
This voice? The one that you’re hearing read these words? Yeah, that one. It isn’t my voice. It’s my mom’s. You’re probably wondering why a teenage girl would want her mom to read what she’s written. In my case, it’s because I can’t read what I write out loud. There’s not a direct line between my brain and my mouth. It’s more like an elaborate maze. I can’t speak so people understand what I mean. If asked a question, my mouth says things that do not answer the question. My brain doesn’t think in words the way most people’s do. Names of things and people get handed to me instead of the words that would make sense to the person questioning me. Sometimes I blurt out whole sentences from another time in my life. (Emma’s voice) “I bounce a balloon to Emma. I bounce it back to me.” They may be images that remind me of the person I’m with or where I am, or words I’ve heard spoken by others, things that get caught in my mind, or unrelated scripts, but that convey the exact emotion I’m feeling. (Emma’s voice) “No more ice skating. Ice skating’s gone.” In any case, what I manage to say usually baffles the people I am speaking to, causing them to misunderstand me. Not being able to speak what’s in my heart so that others are able to understand can be challenging, but I can type things that I cannot reliably say. There are computer generated voices that say the letters as I type them and sound like this – (Computerized young girl’s voice) “I am your friendly computerized female voice. I sound like I’m maybe five years old.” (Another computerized young girl’s voice) “Or I can sound like this and pretend I’m British. But yeah, it’s just not me.” Or I can sound like this. Okay it’s not my voice, but with some direction, Mom sounds better than a computer.
Imagine for a minute that you can’t talk to people in any way that makes sense to them or you. Imagine if every time you opened your mouth to speak other words tumbled out. If you are like me, you might get used to not answering people’s questions or being able to stay on topic. So what would you do? How would you interact with people? Would you ignore their questions? Pretend you didn’t hear them? How would you express yourself? Maybe you would try to connect with scripts you’ve memorized, things you’ve heard other people say in similar situations or maybe you’d find non-word based ways to communicate. That’s what I do.
(Sound of footsteps, people talking and the subway)
Sound is everywhere. I don’t have a filtering system marking one particular sound as more important than another. Can you understand what I’m saying right now? Mom had to raise the volume of her voice so that you could hear it above all the other noise. My brain doesn’t do that. It hears all sounds equally and does not discriminate. But some people’s voices are not as dramatic to my ear as the honking of a horn. I love the sound of honking horns. (Horns honking and traffic noise) Favoring some sounds dilutes others, but music has the best sounds of all. (Body Knows Best – Anya Marina)
Music is my first language. It is a friend who loves me unconditionally. It’s there when I need it and does not shed a tear if ignored for some time. Music is a positive force as it stands by my side. I like hearing the same melodies repeated and did so even when I was very young. It’s been a comfort to me as long as I can remember. Music grounds me and plays a huge role in seeking my creativity as it allows me to perform as I choose to. It’s a way to communicate; it gives me hope, tells me I am not alone and inspires me to create. Though people respond differently to music, I believe there are always emotions involved. Music has the ability to transform my fearsome thoughts laden with anxiety and stress. (Music fades out) It calms me and this has been the case throughout my life. When singing lyrics I stumble and have trouble articulating the words, (Lose Yourself – Eminem) but I can remember the sounds I hear and recreate them with my voice. When I sing I am not apart from, but instead am part of.
Music can be both private and public, but it needs to be loud. (Music gets louder) No one composes music in a whisper. My body needs to feel the beat so that I can be consumed by it. (Volume increases steadily and then fades) When that happens I become part of the music, like another instrument or an extension of it. I jump and dance and move. My arms swing or are raised up and my head bops, my whole body keeps time to the beat. I’m transported to another reality and it is in this alternate reality that I am most happy and comfortable.
At home my need for high volume can cause problems because the members of my family have differing sensory needs that come in direct conflict with mine. (Heartless – Kanye West) My older brother has to have music as background, while I perform alongside, so it makes sense for mine to be public and his to be private.
(Emma’s brother) “Yeah I think it’s totally fair that you’re able to use the living room. It’s not like you play bad music or anything. If you played music I didn’t really like, I’ll just shut the door and go in my room and hang out.”
My mom and dad both work at home and need quiet in order to concentrate. I am told to wear headphones, which encumber my movement and dilute my experience. My family has worked out a solution that allows me to commandeer the living room in the evening. For several hours I am blissfully able to indulge my love of loud music and dancing while my brother stays in his room or hangs out with my parents in theirs.
Until about a year ago I didn’t know the joy of creating music. Until then I was an audience member, but not a participant. My parents encouraged my love of music and hired teachers to help me expand my interests. Guitar is beautiful to listen to, but it is difficult for my fingers to recreate the sounds flowing through my mind. Piano is also hard and requires dedication and lots of practice, but I think it’s a better fit for me. Singing is easy and my lack of inhibitions, great sense of tone and ability to mimic sounds I hear makes it the best choice of all. Eliot is my piano teacher and Karen is my singing coach. Eliot came first.
(Eliot) “Emma has a great ear. She can learn to sing new melodies really quickly and accurately. Recently she’s been listening to the car horns outside and sings their exact pitch. Emma is a fun, expressive and creative singer/performer. She brings a lot of life, passion and feel to the material.”
Karen came next.
(Karen) “Emma has really great pitch control. She knows exactly how the melodies go whether she knows the words or not and she makes it a real point to study each specific thing that happens in the song and can honor each thing in the song by movement and she can also emulate the sound really well as far as consonants and vowels.”
(Gimme Resurrection – Anya Marina) Karen and I have great fun together. I feel at ease in her presence, which is important when you are learning new things and trying to be creative.
Eliot and Karen have taught me to be patient with myself. From them I have learned how hard it is to become masterful and yet I’ve decided it’s better to love the process of learning as much as the final product. Communicating isn’t just talking, it’s developing a connection with another. Music connects us all. I wrote these lyrics and composed this melody, so this voice? Yeah, this one’s mine.
Emma sings Over and Coming
Eliot Krimsky on keyboard
The girl’s going in the bed
the girl is going inside
the girl is going outside.
Who is this girl I see?
Who is that girl I see?
Listen to me-ee-ee
Over and coming and over and coming,
over and coming and over and coming
Go, go, go,
go, go, go,
go, go, go, go
Go, go, go,
go, go, go,
go, go, go, go
Find a way
to seize the day
Dare to be the leading girl!
The girl walks out the door
the girl walks in the door
the girl is a teenager.
I am the girl you see,
I am this girl you see,
Do you believe in me?
Please do believe in me.
I’m ready to fly if you let me,
Turn up the music and
just don’t say no.
Starting and going and starting and going
starting and going and starting and going
Starting and going
Do, do, do, do, do, do….
Hi Emma!! This podcast and blog post is AWESOME. Can we share on The Musical Autist as a blog post that pings back to your sites? Would love to share this as far and wide in the music therapy field as possible!
Ps, take a look at TMA site where it says “resident musical autists” (thinking about changing the menu title but can’t decide on a different title, something that celebrates and respects autistic talent). Anyhow, if you’d like to have your own page there (send me the html or even the text with directions for links) let me know and I’d be happy to do that.
Sunny, Rachel (new Job Coach and TMA intern) and I will be at NYU on June 25th to speak in a symposium on music therapy and Neurodiversity. That would be so great to see you and your family!
CJ Shiloh, MT-BC Neurologic Music Therapist Director of The Musical Autist, 501c3
Brevity & typos courtesy of my iPhone
I thought I’d answer a few of these comments as Emma has had way too much going on and hasn’t had any energy left to answer. You’re welcome to share a link to any post on this blog!
Thanks so much and I hope all is well with you. ❤
Hi Emma, thank you so much for your thoughtful, articulate, beautiful post. I’m an adult woman with Asperger’s and while I do not have the depth of difficulties you and many autistic people have with communication, it is still difficult for me. I often find I am more articulate and can communicate more completely by writing than by speaking. I’m glad you too have found a medium in which you feel you can express yourself. You have a beautiful voice and also write beautifully. It seems like you can communicate even if it is not through speaking verbally and have found ways to do so that work for you. I also love how confident you seem in yourself.
Love listening to you Emma as always. You teach me daily and I love you dearly. You always put a smile on my face and bring a bright light to cover those dark clouds that are currently hovering over me.
I also love your song. It’s really you. You’re free spirited.
Talk you you soon
Amazing. Fantastic. A million other superlatives. Emma, you worked so hard on this for so long and it turned out beautifully. Kudos to Ariane who worked just as hard every step of the way. Together you have made a wonderful podcast and such an insightful look inside your world, Emma. Thanks so much for sharing yourself so we can better understand the feelings and sensations you experience as well as your inspirations and passions. You are amazing and I love you so much.
Hi Emma, this is lovely – thanks so much for sharing. I was just thinking about you and your mom the other day and hoping you were doing well – it sounds like you are!
My relationship to music has always been quite a positive one, though I’ve always had trouble with songs that had words – particularly when I was young, I thought words ruined the music, so I listened to classical music all the time. I’ve started to have some appreciation for words in music, but it took many years.
Love your song Emma!! 💕
This song is amazing. I love it. That isn’t describing the way I feel about it at all….I LOVE IT. I’d pay money for this beautiful, creative piece of art. It makes me feel so good to hear it. Then coupled with your story just makes it explode with greatness.
I love this song.
“I thought it was fascinating. She has a neat perspective on the real view of someone with sensory challenges. She sees reality about meeting real problems. My favorite part was how she sees herself – to not lose reality. She is terrific because she reaches so many – six thousand.”
communicated via letter board by LUKE S, Age 9, Virginia. Luke follows Emma on her blog as well as the rest of his family. Go Emma!!
Reblogged this on bunnyhopscotch and commented:
Rich, multi-textured and… just amazing!
hi, and thank you so much for sharing. i have a question for Emma… how do you prefer others respond to you when communicating verbally? what i mean is, this past year i made friends with a six-year-old who has very limited communication and uses “scripting” a lot as well as unintelligible sounds and compressed speech. she is a great little girl, and we had a lot of fun together at school – she likes dancing and all things drama, and her favorite was when i would mimic her and join in her play acting, but of course meaningful communication was difficult. being just a kindergartner, i realize it’s different. as she mature’s, what is a respectful and meaningful way to be with her? do you want others to join you in your verbalizing, even though it might not seem relevant to them? should they ignore your speech, knowing it’s not necessarily what you want to say? if you did not have the tools you have now for communicating effectively, what would be some ways you would prefer others respond to you? what makes you feel respected and comfortable? any suggestions would be appreciated. thank you!
I have been meaning to respond ever since you first commented on here, but was thinking Emma would want to (and she does) but it’s been pretty hectic around here so, give her another week and then she’ll have a little more time to devote to your questions. If it’s okay with you, Emma thought she’d use your questions as a blog post all of its own. Would that be okay with you?
I’d be really interested in hearing thoughts on this too (with a big emphasis on what makes you feel respected)! I know what it’s like to have someone look at me and decide what I could and could not do (I didn’t like how it felt), but at the same time I know that there’s been plenty of times that I’ve badly underestimated others.
I am great full for your post. I look forward to your response to this question. My husband is 61.He is like you with communication challanges. I am on the spectrum my self and I have trouble with communicating through writing. I also find that even though I am strong verbally some days others fill in their perception of what Im tring to say. I wish I could talk in color and sounds. This is making my marriage so hard.I just want to cry. I just want to love my husbad and son with out such frustration. Hugs to you.
Oh, Emma, how wonderful to hear your voices! Your written words voice and your singing voice are both beautiful. From you I am learning how to listen better not just to my son, but to others who, seemingly, have no trouble vocalizing. In The Churkendoose Anthology, a grandmother wrote what she imagined her non-speaking autistic grandson would say, if he could. “Please, hear what I do, and see what I say.” You continue to open my eyes and ears and my heart. Bless you and I can’t wait to see where you are going in this world!
Emma – I have been reading since you were little. You have taught me so much. Today I shared your podcast with an autistic teenage girl I work with. She loves your song and is so happy to know she is not alone in having unreliable spoken language.
I have the same issue with how my brain won’t filter or prioritize sounds. I’m glad you like the honking horns, though, because I can’t stand them. : ) They deserve somebody to love them.
Hi Emma – I really enjoyed listening to this . It is very well written – I can tell you have worked really hard on it . I like that you have had input from your teacher and made many revisions before getting to the final version – this is a great lesson to others – to show how you produce such an eloquent piece ! It is interesting that you prefer to have your mum read it v. a computer generated voice – I can totally understand that ! I also enjoyed hearing your song at the end that was a great way to finish the podcast.
I am so impressed– your podcast is eloquent and informative all at the same time. LOVE your song! I can’t imagine what it is like to not be able to say what you want to say and hear what others hear. But because of your podcast, I can now begin to imagine what it is like. I am so glad that you have such a connection with music and can be free there– sort of like heaven will be – I suppose. Keep the music playing!
Hi Emma, thank you so much for this podcast and your story! I love your song so much and would love to share it with a deaf autistic friend of mine. Could you or your mom possibly add the lyrics to the transcript as well? Thanks!
all the best,
Yes, that’s such a great thought, I don’t know why I didn’t transcribe the song to begin with! I will add it. Thanks so much for suggesting it.
One of the things I really appreciate hearing from you Emma is that even though I am rarely without words, when I am my experience is very similar to how you describe your experience with the words your mouth-voice makes vs what you mean. This is important to me. Thank you for your wonderful words they are community.
Emma, I’m so impressed with you. I’m an autistic adult and while I’m able to use my mouth-words to communicate a lot of the time, I can’t always, and music is a welcoming, lovely, safe language for the times I can’t. I think you have a lot to say and express yourself very, very well. You’re a great asset to our community, and I look forward to experiencing however much more you want to give us. 🙂
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Thanks Emma, I really enjoyed listening to this podcast.
I’m autistic, but I also have severe learning disabilities, so I use text-to-speech software to listen to text. Because I hear text-to-speech voices all day usually it sounds ‘normal’ to me (it’s the voices I hear everything in), but there are times falls short and sounds wrong (it doesn’t discriminate between a technical communication and heartfelt sentiment; it’s got the same cadence, tones, and patterns of emphasis regardless of content).
I have a question, but please don’t feel bad if you’re too busy to answer: what do you believe is the best** way to approach where needs (and I mean true needs, not preferences) differ in very, very extreme ways? E.g. someone with noise hypersensitivity (me) and someone who needs to make/have noise to feel comfortable.
** ‘best’ meaning respectful and that both people have their needs met
Reblogged this on Superwaves Sound Therapy and commented:
Emma gets sound and music and has an innate musical talent. It is her true form of expression along with many other forms including writing. She’s a true inspiration.
“Do, do, do, do, do, do…” Catchy tune Emma! It’s stuck in my head now:).
“Do, do, do, do, do, do…”. Catchy tune Emma. Now it’s stuck in my head. :). 🎶🎶🎶
Thank you for sharing this with us! I’m a partially verbal autistic, and while it isn’t nearly as often for me, I relate to your experience with your mouth not saying what your head means.
When you have some more songs, you may want to consider starting a Bandcamp, if that’s something you and your parents would be comfortable doing. It’d allow you to distribute your music so that people could buy it. I know I’d buy your music!
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I read your story Emma, and my first reaction was sympathy for you and your family, for how much you sought treatment in a society where desperation meets deceit. However, as I listened to this podcast and saw the impact music has on you and your mind, my heart swelled with joy, especially when I got to hear you sing. You are extremely articulate and intelligent, and I admire your singing voice and pitch control. I would have to practice a long time to sound that good. Thank you so much for sharing this experience with us.
Congratulations! Emma’s Hope Book is nominated for Healthline’s Annual Best Health Blog Contest! Check it out here: http://www.healthline.com/health/best-health-blogs-contest
Every year we take a look at the top health blogs to honor & recognize them. This year things may look a little different, as we’ve updated the contest and taken strides to make sure everything runs smoothly & everyone has a good time voting for their favorites!
The contest has a nomination period, starting now, until November 21st. After that, you can vote once per day for your favorite blog up until December 12th when the winner will be announced.
Once voting begins, we’ll send you a reminder email so you can share with your followers. Remember, the blog with the most votes will receive a $1000 cash prize!
Let me know if you have any questions.
Congrats and good luck!
Maegan Jones | Content Coordinator
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So eye-opening. Love this. Very well done.
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Hey Emma, would you mind if I used excerpts from this in an English assignment I’m doing? It’s kind of similar to the one you’re doing, actually. If you want more details, they’ll be yours later, once I’ve figured stuff out. Also, I sent you an email about it.
Please acknowledge me. Either of you.
Hi Bastian, Emma asked that I respond. Feel free to quote, but be sure to credit those quotes to Emma. Thanks so much and good luck with your assignment.
Thank you! I was hoping to use extracts of Emma’s voice from the *recording* though. Not so much as a quote, more as her input. I’ll keep you informed about it.
Thank you Emma grateful ❤🤟
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