*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.
Yesterday we had an interesting discussion about the word “intention.” The word was brought up innocently enough. It was used in the context of asking about a larger project Emma has been working on. “What does having intention mean to you?” Emma was asked.
“To have intention is a skill. To have intention is a hurdle to jump over,” Emma typed.
I was sitting in the room as this conversation occurred, but was not part of it yet. I was surprised by Emma’s answer. I have never thought of intention as a skill or a hurdle. Instead I’ve always thought of intention as being goal oriented. Then Emma wrote, “the mind does not always process it correctly.”
And I realized I have a very different idea of intention. An idea of what it means to set out to do something and then to do it. I come at the word from the point of view of someone who has not grappled with intention as daunting. I have not experienced the word as a series of frustrations, not typically. Sure every now and then I intend to do something, I set out to do it and find I do not have enough information or am not skilled enough or realize I need to do a whole list of other things first before I can accomplish what I had hoped. But this is different from what Emma was talking about.
“Is intention easier for you while you’re going through it, or later afterward when you are looking back?” Emma was asked.
“If I think too much about it the fear is anxiety,” Emma wrote.
Richard said that what he was hearing Emma say was that the word “intention” means something that we do not necessarily mean. He went on to say that if someone who speaks and says things that they don’t mean a great deal of the time, he could see how “intention” would be anxiety producing.
And as I listened to this exchange I reflected on how I define “intention” from my perspective of relative ease with spoken language. As someone who has never considered intention a “skill,” but instead as a given and even an expectation, one I’ve not spent much time considering, my daughter has once again given me a great deal to think about. This is the very essence of privilege. Having something, being so used to having it that I do not even know I have it… unless it was taken away from me or when someone else reminds me of how much easier it is for me than it is for them.
Richard and I have conversations that other people might find odd. We have little inside jokes we think funny, but that no one else is likely to agree. We reference conversations we had years ago with a single word or sometimes even a look. It’s the same with our son and daughter. In fact, with all of my family and close friends I have at least one or two references that we think funny, but that others witnessing might not understand or see the humor. With Emma, our inside jokes often come in the form of music. We will sing to one another or utter a sentence said by someone else years ago, but that now makes all of us laugh. For no particular reason one of us will say, “Get down Angelo!” and we will collapse in hysterical laughter or instead of saying “Good morning” we will mimic the sound of a quail. The other will then respond with a similar noise and it is better than any greeting made of words.
When Emma began writing to express her thoughts, insights, and experience of life, I thought she would be so relieved to finally be able to communicate these things to us and the world. So when she didn’t seem particularly eager to write, I wondered how and why that was possible. I know communicating in language, whether it is in written or spoken form is difficult and hard work, but I couldn’t figure out why she wouldn’t be overjoyed to finally have this connection with other people.
A few months ago I asked Emma about something and she wrote, “Words are not as meaningful to me as they are to you.” I think about that sentence a great deal. Emma then told me she senses people. She wrote, in reference to a question about someone who works at her school, “I can hear her.” She then added “I feel her.” I used to be confused by these sentences, but over time I have come to believe Emma means this literally. Barb Rentenbach, the co-author of the book she wrote with Lois Prislovsky, I Might Be You talks about this as well. Emma has an acute sense of people’s inner life and as a result, having to translate all of this into words must be tedious and (this is my interpretation of what it might be like for her) a step backwards.
Richard has a theory that Emma is operating at a “higher vibration” or frequency than either of us. I have the same thought, but use the words a “higher plane,” which has the same meaning. We both believe Emma is capable of a more sensitive and intense understanding of people than we are. If I think about those I am close to, I am in tune to their vibes at a higher frequency than I am to strangers. But what if I was attune to all people I came in contact with at that same level of intensity? What if I “felt” them the way I can feel my husband and close friends? What if I sensed the essence of them before they said a word? What if the words they then said, rote responses to questions like “how are you?” were untrue?
We, non-autistics, tend to view our neurology as better, more efficient, less socially awkward, but in many ways our word-heavy way of communicating is less truthful. We say things we don’t mean. We say things we don’t believe, we agree with people we think are more powerful. We are easily intimidated. We are swayed by groups of people who share beliefs, even if those beliefs are not something we agree with. We learn at an early age to question our instincts, to tamp down our emotions, to apologize when we are not sorry, to say things we do not mean and then, once we are adults, we use words like “polite,” and “kind” to justify the lies we tell.
“Words are not as meaningful to me as they are to you.”
At an Autism Conference last month someone asked my daughter “Have you ever been to Australia?” Em immediately answered “Yes!” Yet when this person held up a laminated card with two boxes, one red with the word NO and the other box green with the word YES and asked the same question, Em promptly pointed to the red box with the word “NO”. When asked what she had for breakfast that morning, she answered, “Vanilla cake!” but when asked the same question and asked to respond by typing she wrote, “I ate cereal, toast and yogurt.”
Many people ask me why we are spending so much time and energy learning to support Emma’s typing. The most common two questions I’m asked regarding this are – why do you need to support her at all when she can use her two index fingers to type independently (I will write a separate post on that question) and why do you encourage her to type when she does and can speak?
Ironically I have yet to find accurate words to describe my daughter’s speech. I’ve said things like, “Her speech is unreliable” or “She can use language, but it often does not reflect what she really means to say” or “When she types we get a more accurate idea of what she intends to say, wants, or is thinking.” But I’m never sure people understand what I mean or if they do understand, whether it helps them when they try to talk to someone like Emma. (I have since met a great many people who have some language, but it is “unreliable” in that they will say things that are not necessarily the answer they mean or the words they meant to say.) Inaccurate speech is not because the person means to evade or is willfully not telling the truth, but is indicative of specific brain function. Lots of speech therapy, concentrating on spoken language, did not help Emma.
By the way verbal scripts serve as a default and come into play often in context to what is going on, but sometimes they are triggered by a detail. The script can appear to have nothing to do with the topic being discussed. For example we had an electrical storm the other night which reminds Emma of the fireworks on both New Year’s Eve and the Fourth of July. Emma calls both firework displays and electrical storms, “thunder fireworks.” She also calls rain storms and electrical storms, “firework bubbles” or “motorcycle bubbles”. But if you didn’t know any of this and were with her when it began to rain, you probably would not understand the association when she said, “Ohhh, look! It’s motorcycle bubbles!” and then pointed cheerfully out the window.
If I ask, “Em do you want to make vanilla cake?” Em will ecstatically respond, “Yes!” She happens to love nothing more than vanilla cake with vanilla frosting. I know this, no further questions are needed. However, if I ask her, “Em what did you eat for dinner last night?” She might respond with, “Vanilla cake!” or she might respond with what she actually ate. If I ask her why she was crying on the school bus, she might say, “You cannot scream! You cannot scream and bite on the bus. If you bite, no hitting!” or some other equally cryptic answer that does not answer the question of why, though it does give me a good idea of what was said to her and that she became so upset she began to bite herself.
However if I ask her to type her answer, she might type, “A boy was scratching my seat. I asked him to stop, but he kept scratching. He made me mad. The matron said, no kicking. Emma’s sad, Emma bit her arm. I don’t like that boy.” If pressed further, she will type his name and I will be able to tell the bus matron that Emma should not be seated near the boy whose name is X. Problem solved. The point is, when typing, Emma will write things she does not say. But to people who are unfamiliar with someone like this, they find it confusing.
When I showed Emma this photograph just now and asked, “what do you see?” She answered, “Good!” We went horseback riding while visiting my sister last week. And it was. It was “good!”
You’ve described yourself as a “nonspeaking (at times) Autistic.
“Yes, I think the phrase “nonspeaking at times” captures my experience, and also that of others who do have speech capabilities but can’t always access them. Because one can speak at times does not mean that speech is a reliable form of communication for that person. Also, when someone can speak some of the time, others may not notice that they are having trouble speaking. I have sometimes not been able to speak and other people just thought I was “being quiet” or did not have anything to say; that dates back to childhood.”
Why did you make a video of you not speaking?
“I made the video because we need to change some of the ideas about “high functioning” and “low functioning” Autistics. Not being able to speak is equated with “low functioning”. A constellation of characteristics are said to be true of only “LF” people, such as self-injurious behavior, toileting difficulties, and not being able to speak or having limited speech, while “HF” people are said to have another set of characteristics, also fairly stereotypical, such as being “geniuses” who are good at computer programming and lack empathy. These binary divisions don’t address the wide variety and range of characteristics of Autistic people, and paint a limited picture of individual Autistics, many of whom defy (not necessarily on purpose!) the expectations surrounding their “end” of the autism spectrum. I have always known I can’t speak on a regular basis, but the conversations about “nonverbal” people assume that I have a different experience when in fact it’s not so different at all.”
Can you talk about how and why you sometimes are unable to speak?
“I can’t say I speak “most of the time,” since most of my waking hours are not spent talking. I showed on my video, even when I am alone, I frequently can’t talk. I don’t need to talk at those times, but I am very aware that if I were suddenly presented with a situation in which I needed to talk, I would not be able to. I am, however, usually able to make what some Autistics have called “speech sounds,” which means that I can say something, even if it is not exactly what wanted to say. I have a number of reasons for not being able to speak at any given time. I distinguish between not being able to talk at all and having trouble with word finding, which does not make me lose speech, but can have some interesting results when I find a word that is not the right one! I can go “in and out of speech” several times during the course of a day.
The following list has some of my reasons for not being able to talk. These are not in any particular order: Sensory overload, being tired, reading or seeing something disturbing, thinking more in visual images than in words, trying to talk when other people are talking too fast and not taking turns‒which is not limited to the autism spectrum, although a lot of literature exists about teaching us to take turns. Some of that teaching is necessary, but I think it should be introduced to non-autistics as well!”
Are there other things that stop you from being able to talk?
Another thing that will stop me from being able to talk is to have big chunks of time where I am not talking because I am mostly alone, like when my son spends the weekend with his dad. After a weekend spent primarily not talking, I am not used to it and have trouble getting started again. It does not take more than half a day of not talking before I need to urge myself to take it up again. It’s the inertia of not doing it, plus I have to remind myself, consciously, of how to move my muscles (mouth, lips, larynx) and intentionally will myself to speak, which does not always work. Sometimes my son will ask me “Mommy, are you having a hard time talking?” and if I manage to say “Yes,” I am able to start talking again, although I can have a hard time formulating sentences and finding words for a bit.”
Of all the items on the list, which ones affect you the most?
“The thing that will stop me cold, suddenly switching from being able to speak to not being able to utter a word is seeing, reading, or hearing something that is disturbing. I write indexes for nonfiction books. Some of them have very graphic descriptions of things like genocide or war. I did my “make myself talk experiment” on a day when I was using voice recognition software to do data entry for a book that had ten chapters of very disturbing material. I used VRS a lot at that time to save my wrists and fingers for playing the organ. Since I am a visual thinker, not only was I reading it, but also seeing it in my mind, like an awful movie that I did not want to watch. I found myself typing instead of dictating, and realized I had been doing so for maybe half an hour. I said to myself, “Why did I switch to typing?! I don’t want to be typing!” and my experiment was underway. I spent the next two hours trying to make myself talk, with no success. I was online at the time, so was typing to people telling them about the experiment. Some of them were a bit concerned that I was trying to force myself to talk when I couldn’t, but I needed to find out if I would be able to talk if I tried really hard. My answer was provided after two hours, in the form of a small squeak. That’s the only sound I could make after all that trying. I had two realizations as I finally ended my experiment, still not able to talk except for that squeak. The first was that it reminded me of when I had an epidural for a procedure and tried (yet another!) experiment to see if I could wiggle my toe. The doctor got “mad” at me and told me I was actually wasting physical energy I would need to recover from the procedure. I had the same feeling of exhaustion from trying to make myself speak. The other thing I realized is that maybe I should be carrying an autism card with me in case I was at the scene of something upsetting, like an accident or crime, and could not talk to first responders. Some things that I find disturbing and thus making me not able to talk are not that dramatic. It can be someone saying something that I did not expect them to say (not limited to “bad” things) or anything unexpected or surprising.”
What are your earliest experiences of not being able to speak?
“When I was a child, there were many times when I could not speak. I think very early on, I was not very aware that I could not talk at times; I simply did not talk when I couldn’t. I definitely spent a lot of time looking at things like dust motes in the air and the thread on my blanket and other tiny little interesting things; I have no idea if anyone tried to talk to me and got a response, how fast a response they got, and whether or not I was conscious that I wanted to say something but couldn’t. In later childhood I was more aware that I was both not speaking and wishing I was. I attributed loss of speech to being “shy,” and was angry at myself for being that way. I spent quite a few decades having times of not being able to speak, including the entire day once, and being angry at myself for not being more “brave.” Reasons include some social ones, such as being afraid of another person for whatever reason, feeling “on the spot,” having a particularly anxious day, people interrupting me. I think people were not aware they were interrupting me, as my speech was so tentative. Other reasons include being tired, having more visual thinking and not the accompanying language-based thinking, since my thinking is visual with an audio soundtrack and the soundtrack sometimes drops out for whatever reason. Sometimes the lighting or the color green will render me speechless. I love green! It is very mesmerizing! It often makes me unable or disinterested in speaking, especially the green of a large field of grass. Eeeeeeee!!!!!”
When did your views regarding your inability to speak at times change?
“After I learned about autism, I started thinking more about the reasons I lost speech. I met people who either could not talk at all, could not always reliably access speech (like me!), stuttered (like me, again), had trouble finding words, or had to say other words, circling around until the right one was selected, such as one of the “big words” I used to get teased about in school.
One of my ongoing word-choice problems is “French toast.” Early in the morning, I can’t think of “French toast,” for some reason. I ask my son if he wants “Um, um, um, um, …. uh… (then I draw a square shape in the air, since I can see the French toast clearly in my mind) … um, square things!…. French toast!” Since my son now knows that “square things” means French toast, sometimes we just stop at “square things” and he says yes or he will say, “Mommy, I want square things!” and we laugh and I make the French toast.”
Does it trouble your son that you can’t talk at times, or have trouble saying what you mean?
“My son is very good at talking about things he doesn’t like, but I don’t assume that he would feel entirely comfortable directly telling me things he doesn’t like about me. The things he does say indicate support rather than discomfort. A few times I have been annoyed at myself for stuttering and he says “Mommy! Don’t ever be mad at yourself for stuttering!” or, a few times, “Mommy. Stuttering. It’s a way of life.” I don’t not-communicate with him, so he does not feel ignored. I use alternative ways of communicating with him, just not talking. I write, point, use some of my extremely limited repertoire of ASL signs. I once was writing to him about what to wear to church and he wrote back “Yes, mother dearest!” He (as is true of most people I write to) matches my communication mode and writes back. I have written to him (and to others) “You don’t have to write to me; I can hear you!” He has noticed, and told me, that when he comes back from visiting his dad I “seem different.” We have talked about his coming back as a transition point- the house is suddenly noisier, and definitely “talkier.” I have often said that my child talks to think, so we are quite different in that way. I am working on what would make the transition from “kid gone” to “kid in the house” an easier one for both of us.”
For people who do not have difficulty speaking, they may have trouble understanding how someone might be able to speak in one situation and then not able to in another. Can you talk more about this?
“Some abilities are not there every single time a person wants to access them. This is true for all people, but for an Autistic person, these fluctuations in abilities and access to abilities might be more pronounced. If I don’t play the organ almost every day, it’s almost like I forget how to play it. That’s why I always practice on Saturday night and Sunday morning before church. There is no way I can go in there cold and play like I want to. Think of something like delivering a presentation. For most typical people, there will be good days and bad days, presentations you wish you could do over, and days when you were really “on your game.” Or, think of your favorite sports team and player. Some games are not so good; other games the team really does well. But playing the organ or hitting a home run is not an essential life skill (ballplayers and organists feel free to disagree!). But when it comes to anything considered really basic, like being able to talk, a sense of mystery surrounds the topic, when a person can do it one time and not another. I maintain that it’s not that different anything else, but is more noticeable and pronounced when it’s something that is expected of everyone, and when one can do that “expected thing” most of the time. Maybe for some of us talking is an extreme sport, in the sense of having to really work, practice, try hard, take risks, and think consciously about what we are doing, whereas for some people the ability to talk is very natural and not even a conscious effort.”
Talk about the idea of language and thinking.
“I have read more than one author who opines that without language there is no thought. Nothing could be farther from the truth. Language includes both written and spoken words, as well as picture-based communication systems like PECS. Not talking (and also not writing) does not equate with “not being able to think,” “being lost in an unknown world” or anything other than specifically not being able to talk. For some people it could mean a lack of focus on “the present moment” (how many people are fully present in each moment anyway?!) or not being able to think in words, which is another one of my reasons for not talking. But it is not, generally speaking, accurate to assume that because someone can’t talk, they can’t think. You wouldn’t look at someone who has a tracheostomy tube and go “Oh wow. That person can’t think!”
What is it like when you’re unable to speak while in public and are expected to?
“It’s a bit nerve-wracking, but only in situations where people do not know me well and are expecting that I can speak like a non-autistic person. I try to anticipate what I will need to be able to communicate at those times but I can’t always build in my own supports. When I am with friends, it’s no big deal if I can’t talk or can’t talk much. In work situations it’s more difficult for me to feel calm about it. Unfortunately this expectation is not limited to people who don’t know much about disabilities, so that I have had to really struggle at autism-related events where there really aren’t accommodations for Autistic ways of communicating. It’s an ongoing process for nondisabled people to learn about communication differences and to anticipate them so that Autistics and other people with communication disabilities aren’t doing most or all of the work to create our own accommodations.”
How do people react to you?
Really, I mostly don’t get reactions, because often the times that I can’t speak coincide with the other person continuing to talk, maybe because they think I don’t have anything to say, or that they are like “Well, if she’s not going to talk, I will!” I do get all kinds of reactions, from total acceptance to “you could if you wanted to- try harder” kind of thing that made me feel sad when I was making the video. Sometimes people don’t believe me when I say (in speech or writing!) that I have trouble talking. I have to be very clear that I mean not being able to talk at all. I have learned that “trouble talking” might mean not saying the right thing, or stage fright, and “I can’t talk right now” can mean “I am too busy to deal with you” rather than that I literally an unable to speak with words coming out of my mouth! I have had a few mixups when people did not know I meant “I can’t talk right now” very literally. Sometimes people just don’t quite believe me and think I am making it up. I am not sure why they would think I would go to that much trouble! There are also people who have never heard me stutter, who think that I don’t, even though I tell them I do. They are going to get treated to another video in a few weeks! I was finally able to capture myself stuttering at a time when I also had the webcam with me.”
Are there things that help you speak after a period of not speaking?
“I mostly just have to wait. I don’t particularly want to talk a lot, but I need to. It’s just one of those things that is expected, and it is expected that if I can do it some of the time, I can do it all of the time. It might seem that someone who can speak but loses speech at times would want to find ways to prevent speech loss, but I often welcome not being able to talk. It gives me a break from the exhausting task of speech production. My idea of the perfect conversation and this is ideal for a number of my Autistic friends, too, is two laptops or mobile devices or text-based equipment, but we can be in the same room together writing to one another. I don’t get a lot of this because I live in a rural area and most of the people I write to are long-distance. Some friends locally are very accepting but we don’t have any alternative setup other than me scribbling on paper. I also get way overloaded by hearing other people talk, as it challenges my auditory processing abilities and I can only take so much talking. If other people, whether or not they can speak, would type to me, I think I could get a lot more accomplished with the interaction with that person. Or, at least I think I could. If writing is not that person’s strongest form of communication, it will be a limit for that person. We should not be expected to always accommodate “talkers” and not the other way around. But it does take extra effort on my part because people can’t tell just from looking at me that I am a person who sometimes can’t access speech.
Ideally, we could take turns using each person’s communication strengths and weaknesses, assuming we are able to do that much. Of course, sometimes it just won’t work.”
Often before bed Emma asks if she can watch one of two movies – Mary Poppins or Winnie the Pooh. She has been watching these same two movies for the past five years and in the case of Winnie the Pooh, going on eight years. Typically we tell her she can watch whichever movie she’s chosen for twenty minutes or so before bedtime when I read to her. Last night she chose Winnie the Pooh. I sat next to her, but wasn’t really paying attention as I was reading an email, when I realized she was talking and looking over at me. This was unusual. Emma will often repeat much of the dialogue, particularly her favorite parts of the movie which, having watched literally thousands of times, she has memorized. But last night she wasn’t just repeating the dialogue. Last night she was talking – about the movie – to me!
It took me a couple of seconds to understand what she was saying, but it went something like this.
Emma laughing. “He’s stuck!” More laughter. “He can’t get out. Ooof! Pooh bear is stuck. Yeah. He cannot get out.” Emma points to the screen while looking at me.
I look at the television, inwardly feeling nothing short of elation that she is initiating contact, that she wants to share her amusement at Pooh’s predicament with me! “Oh no! You’re right. He’s stuck. He ate too much honey.”
Emma nods her head. “Don’t… feed… the …bear!” she shouts at the same time that Rabbit says this while pounding a sign with these words into the ground with his fist. “Rabbit’s angry!”
“Yes, he is! He doesn’t want Pooh stuck in his house.”
“Pooh can’t get out,” she says, laughing.
“Pooh was so hungry, he ate and ate and ate all of Rabbit’s honey.”
“Now he can’t get out.” Emma says, watching the television.
“He ate so much, his belly got so big, now he’s too big to get out.”
Emma shrieks with laughter. “Oh no! Oh no! I’m stuck!”
“You aren’t stuck, Em. Who’s stuck?”
This continued throughout the entire scene until Pooh gets thin enough that he can be pulled out. While Christopher Robbin and the rest of the animals pull Pooh bear, Rabbit pushes him from behind and he finally shoots out of the hole like a cannonball and lands inside of a tree, which just happens to be filled with honey.
“Pooh’s eating! He likes honey!” Emma says, pointing to the part when Christopher Robin says – Don’t worry Pooh. We’ll get you out! (of the tree) and Pooh says, through mouthfuls of honey – Don’t hurry! Yum! Yum!
Emma thought this hilarious. “Oh no! He’s stuck again!” Then she collapsed into a fit of giggles with her hand on my arm.
For more on Emma’s journey through a childhood of autism, go to: Emma’s Hope Book
“Mommy, I want to make pancakes please!” Emma said sweetly the other morning. A simple sentence, no big deal, right? Except to us it was an enormous deal. Pronouns all in their proper place and used appropriately, a polite “please” added at the end to ensure a positive response to her request, how could we say no? And since it was the weekend, we didn’t. Though we did tell her, she would need to wait a little while, which she did.
Someone, years ago, asked me what I hoped for when it came to Emma’s progress and I responded with something about giving my right arm if she would only ask me for something. At the time, it was a worthy objective. Please, just let her ask me for anything and I’ll be happy. Thankfully I did not have to relinquish a limb for her to get to that point and now those requests have become commonplace. “Mommy! I want to go to the Vanderbuilt Y please,” “Daddy, I want to go to the New York Botanical Gardens with just Daddy!” or “I don’t want to eat the pear. Please Mommy, no more pear!”
Now that we have the “I want,” “I don’t want” sentences, we are moving on to the lofty goal of commenting on surroundings. “Oh look, Em! Look at the bird outside the window! Do you see it?” And then we wait. “Yes, I see the bird. There’s a bird flying outside,” Emma might respond or she might then comment on something else. “It’s raining outside. We cannot go to the park.” The idea of using language as a way to connect, a bonding experience or as a way to share an experience with another person remains somewhat elusive, though she is making strides in that direction. We are not able to carry on a conversation with Emma yet. But we hope to get there eventually.
For more on Emma’s journey through a childhood of autism, go to: Emma’s Hope Book
Sadly, I have no new photographs of Emma petting Merlin. After that one brief encounter she has returned to ignoring him. He seems to take it all in stride, poor kitty. But it leads me to another topic I keep meaning to write about – building blocks. Not the literal kind, but the developmental kind. Children typically go through a series of advancements in their speech, physical abilities, etc. There are specific physical milestones – lifting their head, turning over, crawling, standing walking, and on it goes. A foundation is being laid down which further progress is built upon.
What I have seen with Emma is less a foundation and more a series of seemingly unrelated events. We see her do or say things never to be repeated or if they are, not for many months or even years. I’m not sure I would have noticed this, except that I’ve made a habit of noting everything she does and then writing about it. She pets Merlin and then instead of tentatively reaching out to him again the following day, it’s as though she never spent those few minutes petting him.
It reminds me of when she was just over a year old. She would learn to say something – “play catch” and we assumed that these two words would now be added to the other words she had, such as ba-bye, dada, ah da (all done), hi, okay and no. We expected to hear them uttered again. At the time, knowing absolutely nothing about autism, we weren’t looking for signs of anything being wrong. When she didn’t repeat – play catch – we assumed it was because she didn’t want to play, not that it was a one time event, never to be spoken again.
When I look at her baby journals, (which I discontinued after she was diagnosed – more about that some other time) the first two and a half years of her life, I am struck by the words she knew by the time she was thirteen months old. Including the ones I’ve listed above she said, Bertie (the name of our elderly cat), Ma-ma, Nic, and Ra-ra (our caregiver). I was concerned with her lack of language, but it wasn’t as though she wasn’t speaking at all and then she’d come out with something like “play catch” and I would sigh a huge sigh of relief and push my concerns aside. Except that she never said play catch again. The full list of words she spoke as a thirteen month old were either salutations or proper nouns of the main people in her life. Other than the one time she said, “play catch” she did not use any verbs or nouns. It was at around this time, between thirteen and fifteen months of age that she would seem to learn a new word or phrase – “play catch”, but also, “chase me” and “go out”. Some of them, like “chase me!” she would say many times but at around eighteen months she suddenly stopped. We never heard her say those two words again. It was as though there were some sort of black hole sucking all those words and phrases away.
Still we fully expected to hear her say those words again, that she did not was something we didn’t realize until much later. At the time we were sure it was because she chose not to, as opposed to something neurologically wrong. Why would one assume something was terribly wrong when she would come out with a new phrase or word the next week? It wasn’t until we were told she was autistic, and only after much research did I begin to look back on all those hopeful notes from her baby journals and see a pattern. There was not the steady building of a foundation of words, ever added upon to become an extensive and diverse vocabulary. Instead there were a few scattered words and phrases some repeated, some never heard again. Arbitrary words, perhaps she heard us say and repeated, but the milestones were not being reached in the time frame one normally would expect.
What I see now is that Emma is slowly, slowly building a vocabulary, but it is at a snail’s pace and it does not follow a neuro-typical trajectory. Still she is advancing in her own haphazard way. Who knows, she may even pet Merlin again.
For more on Emma’s criss-crossing journey through a childhood of autism and my ongoing attempts to make sense of it all, go to: www.EmmasHopeBook.com
Emma is fussy about what she will eat and drink. The type of food is sometimes less important than the packaging. If the packaging changes or varies, even a little the item is rejected. As with so much in autism it is all about regularity and routine. Emma is completely thrown by the unexpected when applied to things she is accustomed to.
For the past two years Vanilla Milk from Horizon has been on Emma’s top five list of favorites. It’s the little milk in a white and purple box with plastic wrapped straw glued to the side. Except Horizon changed the packaging about three months ago – the colors remain the same, as do the graphics, size, shape and even the little straw. What has changed is they no longer use a coating to make the little boxes appear ever so slightly glossy. The boxes are now a bit flatter looking. Honestly, it wasn’t until Emma stopped drinking them, that I realized they had changed.
When we arrived in Aspen, we had a case from Christmas in the mudroom with the original packaging and Emma immediately grabbed one.
“Vanilla Milk!” she said with pleasure.
We are nearing the end of that case and so she will boycott them once again. Not that I care much as they are one of the least healthy things she consumes, but I do mind that she won’t eat the Cheerios we buy here, haven’t figured out why. We bring her special bread with us, which we cannot get out here and her jam, so it was with some dismay when she refused to eat any of those things this time out, as well. Last night I asked her what she wanted for dinner. I told her what I was having and asked if she wanted some. She always answers no, so it wasn’t a big surprise when she again said, “No?” as though it were more of a question, than a statement.
“Okay, so what would you like?” I asked.
“Bread,” she announced and handed me two pieces of her bread, which she had buttered and placed together, like a butter sandwich.
“Oh!” I said with surprise. “You don’t want it toasted?”
“Yes. Toast.” Emma said. Then she handed the bread to me and said, “Put it in the bakery.”
“In the bakery?” I repeated, looking around, wondering what she meant.
“In the bakery?” she said again gesturing at the oven.
“Oh! You mean the oven. You want me to put it in the oven to warm.” I am often amazed by Emma’s creativity in her choice of words. She has seen me bake bread in the oven. She knows bread comes out of the oven and more often comes from a bakery.
“Yes. Make it nice and warm!” Emma said.
“In the oven,” I said.
“In the oven,” Emma repeated.
“We have to heat the oven first and then we can toast it. But we have to get a cookie tray to put it on, otherwise the butter might drip out,” I told her.
When her bread was done, I opened the oven.
“You have to stand back,” Emma said sternly.
“It’s okay Em. Here, I’ll take it out and you can take it to the table.”
After Emma ate her bread she said, “Another bread from the bakery?”
“Yes. We can do that. You make it and I’ll put it in the oven.”
“It’s Mommy! Mommy come to visit!” Emma said this morning when she saw me. It’s an odd feeling to have one’s own child, a child one lives with and sees on a daily basis, exclaim with apparent happiness that I’ve come to visit, especially when I am in my own home. My first thought was that as Richard and I went out the night before and I only saw Emma for a brief period before we left, she was indirectly expressing her feelings that I haven’t been around enough. Then I began to feel guilty and consoled myself with the fact that I will not be going out again in the foreseeable future. “You came to visit!” Emma said, cutting through my thoughts.
“Well it’s not really a visit, when I’m here all the time,” I said in an effort to clarify and unburden myself of just a little guilt.
“It’s Mommy!” Emma repeated, as though she were surprised.
It reminded me of a time not long ago, when Emma on one of her perseverative loops of anguish, kept running through the house crying out something none of us could decipher.
“What is she saying?” we asked each other more than a few times.
Emma’s upset became more extreme and ended with her biting herself.
Someone (it may have been me) then asked, “Why is she doing this?”
I remember thinking, “Umm, because she’s autistic? Do we really need to look much further?” But I didn’t say it out loud, okay so maybe I muttered it under my breath. The point is, applying my own reasoning to Emma’s behavior usually doesn’t get me very far. And often it is counter-productive.
“You came to visit!” Emma repeated again.
“No Em. I live here. You visit someone when you go to their house, a different house to see them for a little while or when they come here, to our house, but then leave, then they visit you.” Okay, so it wasn’t the best explanation I’ve ever come up with, but it was the best I could do in the moment.
Emma stared at me for a moment and then said matter-of-factly, “Have breakfast now.”
“Right,” I said. Too much information. Got it.
When Emma and I were in her bathroom, getting ready to brush her teeth, she stood on her little stool and while looking at herself in the mirror, put her arm around my neck, pressing her cheek against mine. “It’s Mommy!” she said, pointing to my reflection. Then she gave me a kiss on the cheek.
It was one of the moments you wish you had a remote control to hit the pause button on. I thought of how it was such a typical little kid thing to do, how wonderful it was to see her do something like that.
“Let’s go visit Nic,” I said after she’d finished brushing her teeth – meaning we should go find him, see what he was doing. And I caught myself. I understood how and why she said, earlier – I was “visiting.” Emma was hearing the word used and applying it as best she could in a similar situation.
Last night as Emma was getting ready for bed, she said, “Remember, he took it.” She looked over at me and then said, “He take – no, he took it?”
“Took. He took it. That’s right Em. You had it right the first time.” I was dismayed to hear her correcting herself. I’ve never heard her do that before. There have been countless times, Emma has used the past tense, but this was different. She was using the past tense, then playing with the present tense as though she were trying it on for size and coming to the conclusion the past tense was what was needed. And she was correct, which made it all the more incredible.
She smiled at me and repeated, “Remember when he took it.”
“Who, Em. Who took it?” I asked.
She ignored me and continued, “Remember then you running – you ran.”
“You’re remembering our day at Bounce U, aren’t you?” I said.
“Mmhm,” she answered. “Mmhm” is new. It’s something Emma says now instead of “Yes,” which she often said in the past, even when she meant “No.” Now she says, “Mmhm,” or however you write out the sound of agreement people make which is less than “Uh-huh” and more than “Mmmm.”
“That was a fun day, wasn’t it?”
“Mmhm,” Emma nodded her head and added, “He took the picture! You have to give it back. You ran. That’s funny.” She sat up and began giggling.
I realize a little explanation is needed here.
On Emma’s birthday – which she shares with Martin Luther King – Richard, Joe, Nic and I took Emma to an indoor playground filled with inflatable structures. It’s way out in Brooklyn and appropriately named, BounceU. Emma loves the place and since we’d celebrated her birthday with a party and friends the day before, it seemed the perfect setting to spend her actual birthday.
Once we arrived, we ran into a friend of Emma’s from her school who was there with both her parents, Ryan and Susan. Ryan had a camera with him, which Emma immediately wanted to take pictures with. It quickly became a game with Becca’s good natured dad chasing Emma as she ran around taking shots of – the carpeting, people’s feet, her own face, etc. before he caught up with her and took the camera, often hiding it in places she could see. Emma would then try to sneak the camera away while Ryan pretended not to notice, the whole thing was hilarious and Emma has referred to that day many times since.
Emma continued to giggle. “He took it. He want to take a picture. You ran!” She was laughing so hard she had to catch her breath. “No! You have to give it back!” This last was said in a stern voice. “Emma!” Then she doubled over with laughter and said, “Remember?”
At this point I was laughing too. “Em, that was such a fun day, wasn’t it. And you got to spend time with Becca.”
“Yeah,” Emma said, before starting to giggle again.
“Sing Zoo Zoo Zoo with your mouth closed?” Emma said this morning as she was getting ready for school.
“Good idea!” I said. And then began to sing one of her favorite songs with my mouth closed.
She waited patiently until I had finished the first refrain and then said, “Emma’s turn!”
I knew, before I began singing that she meant she wanted to sing the song with her mouth closed, but since repeatedly correcting her over the years hasn’t made a dent in her continued use of “you” in place of “I” or “me,” I have begun taking her words more literally and seeing how that works. Other than mildly irritating her, I’m not sure it’s making much of a difference. The elusive pronoun continues to trip her up.
In addition there are words which she finds impossible to articulate. A few of them can be found in another of her favorite songs – “Fabulous”. Emma says – Sandy lot – or something that sounds suspiciously like that, in place of Fabulous as well as humming the word “imported” which is used repeatedly in the song, instead of making an attempt to say some version of the word.
Yesterday I tried more than a few times to have her repeat my enunciation of “imported” first by singing the lyrics “towels imported from Turkey, Turkey imported from Maine…” but when that didn’t help I tried to have her say “imported” all by itself. I could see how hard she was trying, she watched my mouth as I said the word, she tried her best to mimic me, all to no avail and eventually wandered off into our bedroom where I could hear her singing loudly her own special version of the song, the tune utterly recognizable even as the words were not.
Richard found the lyrics of the song online and printed out several copies so each of us could review and sing along with her when she launched into yet another rousing rendition of it, which happens more than a few times over the course of a day. Emma articulates a few lines of the song beautifully – “I want MORE!” and”Excuse Me Thank You” then lapses into her “Emmalish” – impossible for anyone to decipher. Sometimes Emma will allow all of us to join her in singing, but often, particularly when it is her brother, Nic who is singing along she will stop abruptly and yell, “Nicky L. stop singing!” or “Nic! Stop talking!”
To which we respond, “No Emma. Nic can sing too if he wants.”
“Forget it, it’s no fun now,” Nic will say as we wait for him to continue. “She ruined it.”
Or if Nic does have the fortitude to continue, Emma will stand silently for a moment before seeking refuge in her bedroom and shutting the door. It seemed as though it was as much a gesture of contempt for the whole unruly scene as a desire to escape the singing. Nic usually shrugs and returns to whatever it was he was doing before the whole thing began.
I cannot hold a tune. This is a fact I came to terms with early on in junior high school when I was contently singing along to “Angie” by the Rolling Stones and was ridiculed for my off key trilling. My ego bruised, I was careful to hum or sing quietly under my breath or in the privacy of my own room. Something I have continued to do ever since. Emma however, did not inherit my tin ear. Hers is the voice of an angel or Broadway singer, (depending on the song) as she belts out songs in decibels I didn’t know were possible.
The other week when we gathered to sing Happy Birthday, the one song anyone can sing off key with abandon, with no fear of ridicule, Emma out sang all of us put together.
“She’s got a set of pipes on her,” Richard said, proudly when the song had come to it’s end.
Emma is a bit of a clown if she’s given any encouragement.
The other night, Emma nodded her head, while pursing her mouth in a kind of lopsided pucker and said, “I know. You can’t go on the bike carousel. It’s closed.” Her tone was one of sorrow, as though she were sympathetic to the situation, but that it was ultimately beyond her control. “I know,” she repeated. “You have to wait. It’s too cold for the bike carousel.”
Forget that I don’t know what “bike carousel” she was referring to. The only one I know of is in Battery Park and it most certainly was too cold and snowy to go there.
Emma often carries on whole conversations with herself playing the role of child wanting to go somewhere and benevolent authority figure telling her she cannot do whatever it is. There is a kind of mimicked sadness as she tells herself she cannot do something and even provides herself with perfectly plausible reasons why whatever it is, can’t be done. It’s what they call in tennis, playing both sides of the net.
“I want to go on the bike carousel!” Tone high-pitched, demanding, her face animated even lit up with anticipation and then the response, “I know.” Sadness, apologetic, followed by the reason why this is impossible, “You cannot go on the bike carousel, it’s too cold outside.” Then she adds the facial expression with her mouth twisted to the side, puckered lips and the nodding of her head – it’s almost impossible to witness this performance and not see the comedy in it.
The other day we were all in the elevator with Emma when she went through a similar routine, “I’m sorry,” she said. “You cannot go on the swings. That swing is for babies. You’re too big.” This last was said with a stern, though sympathetic tone. “I want to go on the big swing,” this was uttered in a higher pitched voice. “I know,” she said, nodding her head and giving the look, which made all of us start laughing.
“Emmy, you can’t go on the baby swing! It’s too cold!” we said.
“I know,” she said sadly, nodding her head again. It seemed there was a tiny hint of a smile though as she said it. “You’re too big!” Then she laughed.
“Em, make that face,” Nic prompted the other night. He was referring to her puckered lopsided nodding of the head face. But instead she just looked at him.
“Nicky!” she said sternly. “Nicky! Stop talking!”
“Hey Emma, go like this,” I encouraged, mimicking her expression. When she finally complied she did it and then seeing all of us laughing she joined us and began laughing too. “I love that expression, Emma. You’re funny,” I told her.
“It’s funny,” she said.
On another occasion Emma burst into hysterical laughter for reasons none of us could decipher. “Hey Em. What’s so funny?” I asked.
“Justice! Justice slammed the door,” she said before collapsing into peals of laughter.
“Was Justice being funny?” I asked, hoping to get more out of her.
“Yes!” But the moment was over and she wandered off. Whatever scenario she was remembering, it was one we couldn’t share with her.
A few weeks ago when Richard and I went to her classroom with cupcakes to celebrate her birthday with her classmates we met Justice. He and Emma sat together during story time. On occasion one of them would reach over and stroke the others hair. It was adorable. Clearly they feel tremendous affection for one another and it was wonderful to see. Then Justice began singing in a high pitched gravelly voice, making the teacher admonish him for making her ears hurt, as he and Emma laughed and laughed.
Answering “why” questions is usually quite difficult if not impossible for many autistic children. Emma is no exception. Usually a conversation, which starts with “Why?” ends as abruptly as it began.
“Hey Em, why do you want to do that?” “Why do you want to go there?” “Why are you screaming?” “Why are you sad?” “Why are you hitting yourself?” etc.
99.9% of the time when asked “why?” Emma will either – walk away, not answer or will answer by repeating the question.
“Why?” Emma will respond in a high-pitched voice edged with anxiety. “Why you hitting,” or “Why want to?”
Repeating the question does not produce positive results. Repeating the question in a louder voice also does not make a difference. After all there is nothing wrong with Emma’s hearing. She hears the question she just has a difficult time responding. So it was noteworthy when Emma responded to a “why” question the other day.
Emma wanted to have a pair of scissors so as to cut the gym mat we had tied around a standing beam for Nic to use when practicing his karate punches and kicks.
“Emma why do you want to take it down?” Richard asked.
“Because I want to jump into the swimming pool,” came Emma’s surprising response.
Now many of you reading this may be confused by her words, but to us, who understood she meant she wanted to turn the multi-colored gym mat on it’s other side, which happens to be all blue, and pretend it’s a swimming pool, we were in shock that she answered a “why” question and answered it so beautifully with a clear, concise, complete sentence.
When Richard told me I couldn’t believe it. “Really?” I said, barely able to contain my excitement. “Really? She said because?”
Richard nodded his head.
“But that’s amazing!”
“Yup,” Richard said.
So Richard cut the mat down, told her to put on her swimsuit and let her “dive” into the “swimming pool”.
Ah life at the Zurcher-Long’s… it just never gets boring around here.
These are the words Emma sings, to the Rihanna song, Please Don’t Stop the Music, which despite our corrections, she insists on singing her way.
“Emma! It’s not Caesar, it’s Please don’t stop the music!” We have said on more than one occasion.
Often she will correct herself, only to return to – “Caesar stop the music”, and then she’ll laugh and continue the song. “Caesar stop the music, Caesar stop the music, Caesar stop the music, Caesar stop the music!”
What follows is pretty garbled and since I don’t know the words to the song, impossible for me to decode. But after the garbled words she will usually hum, keeping the tune intact, before singing, “I wanna take you away, let’s escape…” more garbled words and humming, before launching into the grand finale, “Caesar stop the, Caesar stop the, Caesar stop the, Caesar stop the music!”
This is Emma at her silliest and yet most endearing. I know she knows the lyrics. We’ve corrected her dozens of times. I know she can say the correct words as I’ve heard her on rare occasion say them. But “Caesar stop the music” is the way she prefers to sing the song.
That Emma “plays” with words – although that may be a gross misreading of what is actually going on – is something I’ve always found fascinating. As a toddler, she would say things none of us could understand, but over time we were able to decipher. Often they were nonsense words, which in no way resembled the actual word used for the object she was referring to, such as “Cokie” for blanket. For months we thought she was asking to eat a cookie. And then there are the words she uses to describe things, a kind of poetic beauty, as when she called rain, “bubbles”. There is a literalness to that – if you examine the rain as it falls from the sky it does resemble tiny bubbles and when it falls to the ground it will often form a bubble, but it isn’t something I would ever have come up with.
Emma also uses words, both descriptive as well as strangely similar to the actual words as she does with the stars in the night, “sorry bubbles”, “cheese solos” for cheese doodles. It’s interesting to note, for a child who is so literal she cannot come up with a name for her baby doll, but instead calls her, “baby” or “doll” or “girl” that Emma creates such unusual words to describe other things. It is, perhaps, this literal application to things which we take for granted or do not even notice that makes her choice of words so interesting.
As always I am left wishing I could be inside her body and mind for an hour to feel, hear, see and experience the world as she does.