Tag Archives: RPM

Methods of Communication – My Research Paper

“To what extent is it possible to compare the ways in which methods of communication are being taught to autistic students who cannot use spoken language to communicate their complex ideas?”


Many autistic students cannot rely on spoken language to communicate their knowledge and ideas. Exactly how many is not known since autism organizations disagree. For example the Diagnostic Center of Central California states, “As many as 50% of individuals with autism are non-verbal and up to 80% are intellectually challenged.”1, while the National Autism Association reports, “About 40% of children with autism do not speak”2 and Autism Speaks weighs in with, “It is estimated that as many as 25% of individuals living with autism spectrum disorders are non-verbal.”3 “Nonverbal,” is an inaccurate term that implies the inability to speak at all, however it includes many who can and do speak words, but do not speak in ways that non-autistic people are able to understand. There is no term for those who can and do speak, but cannot rely on their speech to reflect the whole of their thinking. As a result of this misunderstanding and inaccurate terminology, many autistic students are believed incompetent and are relegated to remedial special education classrooms and schools. All of this is exacerbated by a body that does not obey the commands given to it, and IQ tests, which perpetuate the myth that non-speaking Autistic people have low intelligence. The latter is something that is now being questioned more and more, as demonstrated in this 2015 article for IAN (Interactive Autism Network), “…it cautions that measuring a child’s intellectual ability may be complicated by the symptoms of autism itself.”4 The well rounded education available to students in the general education population is not available to autistic students unless they are given a means to express themselves. However most communication methods involve pictures, symbols and rudimentary phrases such as, “yes,” “no,” “maybe,” “I don’t know,” “I want…” “I need…,” etc. These words and phrases do not demonstrate or allow for deeper thinking, and so it cannot be known exactly what is in a person’s mind who does not have access to more complex vocabulary whether through spoken language or a communication device. As a result, this paper will analyze “To what extent is it possible to compare the ways in which methods of communication are being taught to autistic students who cannot use spoken language to communicate their complex ideas?”

This study will establish the procedure for a survey conducted where the participants are either without speech ability or with speech, but are unable to rely on spoken language to express their complex thinking, knowledge and ideas. The data collected from this survey will be analyzed and discussed and finally this paper will explore ways to move forward based on the collected data and survey findings.

The Survey & How it Was Created

Since many existing communication methods are underrepresented in most schools, I created a survey to find out what methods students use, what they are being taught to use and how successful each method is. Additionally I was curious to know whether a student’s school allowed the communication method chosen by each student to be the most beneficial, and if not, how the student then communicated their complex thinking, knowledge and understanding of the material being taught. The survey used a google form and was anonymous. The people I hoped would participate was anyone who cannot use spoken language to convey their complex thinking, those who cannot rely on spoken language most of the time, those in school or of school age regardless of whether they attend an actual school, are homeschooled, unschooled, take online classses or a combination of all of these. I encouraged anyone who no longer was in school to take the survey by remembering their experience of school. The last group I hoped would take my survey were parents and support persons of students who are beginning to use other methods of communication, but have not yet mastered them and cannot answer open-ended questions on their own. Of this group, I asked they make sure they said who they were when taking the survey so it was clear they were speaking on their student/child’s behalf to the best of their ability and not as the student.

There are a few limitations to this paper that must be discussed. The first was my inability to reach a more diverse population. I attempted to do so, but most of the people who responded were white students who live in the United States. Another limitation is that it is impossible to include the large percentage of students who cannot rely on spoken language to convey their knowledge and thoughts and have not been given the opportunity to communicate through any other means besides spoken language. These students cannot write to communicate because they have not been given the means to do so, thus the survey was unable to reach them.

The data collected from the respondents demonstrated strong parental advocacy, which was reflected in the schools and homeschooling choices available to these students versus those who do not have such choices available to them. As a result, many of the answers show a positive schooling experience as opposed to those who have not been given the opportunity to communicate through other means and cannot rely on spoken language to convey their thinking and knowledge. It cannot be known how those students view their experience in schools or in the world as this survey could not reach them.

In an effort to make the survey easier for the largest number of non speakers, the majority of questions were multiple choice or required short sentence answers. Of the 34 questions asked, 16 were multiple choice and 10 demanded answers of three words or less, such as “How old are you?” and “On average, how long does it take you to answer an open-ended question?” Eight questions encouraged longer answers, such as, “What, if any, method(s) do you use to communicate complex ideas, thoughts and knowledge? Please explain the method” however of those eight questions, five were required. The remaining three were optional questions that the participant did not need to answer if they chose not to. Four of the 34 questions were contingent upon a specific answer making at least three of the questions moot points and therefore not required. A participant was also able to write NA if they chose or some other wording on questions they did not, or could not, answer.

The first 9 questions established the demographic of the participants. The next 13 questions concerned the type of communication methods tried and currently used, and whether these were allowed and used in the student’s school. This was followed by 8 questions pertaining to learning, the school environment, and whether the staff was able to support the student in their chosen method of communication. The final 4 questions asked the participant for more detailed suggestions for administration, teachers, support persons, parents and other comments and thoughts relevant to communication methods.

The targeted participant was reached through my blog, Emma’s Hope Book, where I wrote a post explaining my research paper and why I created a survey. At the end of the post I included a link to the survey and encouraged people to complete it. The post was entitled, Have Your Voice Heard!5 In addition, I shared the blog post on my blog’s Facebook page – Emma’s Hope Book and two days later shared just the link to the survey with a reminder asking people to share on their Facebook timelines. My mother shared my blog post on Facebook and Twitter and sent personal emails to people she knew with children who cannot use spoken language to communicate.

Survey Response

94 people participated in the survey and ranged in age from three and a half to fifty-five years old, though the majority, 85.1% of respondents were between 7 and 29 years old. Five of the respondents were six years old or younger and nine respondents were older than 29 years old. 45% of the respondents were male, 38.3% were female and 13.8% of the respondents identified as either “Omni”, “trans”, “non-binary”, “binary”, “gendervague”, “genderfluid”, “neutrois”, “two-spirit” or a combination of these, while 1% identified as “Child” and another 1% answered, “I don’t know” and “I don’t.” 77.7% (73) of the respondents identified as white, 5% of mixed ethnicity, 4% as either “Hispanic”, “Latina”, “Latino” or “Mexican-American”, 3% “Asian”, 1% identified as black, and the remaining respondents identified with the name of the country they were from or some other word that does not indicate gender, such as “human”. The failure of this survey to reach more minorities was noted and while it is believed students in minority groups are not given an autism diagnosis as readily as white students, it was certainly a problem that this survey did not reach these minority groups; we could have done more to get in touch with those populations. The 94 respondents came from all over the world, but the vast majority, 65%, live in the United States with almost all states represented except for the southern states, particularly the Deep South, where there were none, with the exception of Georgia. 10% of the respondents came from the United Kingdom, 10% from Europe, 3% from Australia, 2% from Canada and the remaining 10% from other parts of the world. Respondents from Russia, Africa and the Far and Middle East were not reached and, as a result, none participated.

As expected, 93.5% identified as Autistic, while 6.5% did not, since most of the respondents were reached through the personal blog, Emma’s Hope Book – Living, Being Autistic and through the Facebook page of the same name. In answer to the question, “Can you use spoken language to communicate?” 36.6% said they could not use spoken language at all, while 49.4% said they could sometimes, and 14% answered “yes.” Those who answered “sometimes” described a wide range of experiences and abilities. Some were able to speak at least some of the time, others could use spoken language rarely and could not use it ever to express complex ideas, while still others reported being able to use spoken language intermittently depending on the situation. Stressful environments greatly contributed to those, who could use spoken language often, no longer being able to do so. This survey was limited to the types of communication methods being taught in schools, to students who cannot ever rely upon spoken language to convey their thinking and knowledge, versus those chosen by these same students to best communicate. There were 24 respondents whose answers were viewed with great interest, but were set aside as they did not meet the criteria needed to answer the theses question.

Of the remaining 70 respondents, the ratio of male, female, and other changed only slightly to 42.9% male, 35.7% female and 8.6% identified with wording indicating gender fluidity of some kind or wording that was has no gender associated with it, such as “child” and “human”. High school was the highest level of education currently held by the greatest number, 41.4%. 20% of the respondents were in grade school, 17.1% in middle school, 10% were in college or had finished college at the time of taking this survey. 1.4% was in a Ph.D program. 72.9% of the respondents were currently in school of some kind, which included homeschool and online schools. The types of schools varied from special education (34.3%), general education (30%), some type of homeschool (25.7%), Online school (5.7%) and/or a combination of these. 20% of the respondents were not in school of any kind due to their age.

In answer to the question “What, if any, method(s) do you use to communicate complex ideas, thoughts and knowledge?” There were a wide range of answers using a variety of methods, and often multiple methods, but the largest percentage (40.6%) used Rapid Prompting Method (RPM) created by Soma Mukhopadhyay,6 with “typing” (12.5%) and supported typing (12.5%), coming in as distant seconds. The remaining respondents listed the following methods, often used in combination: “letterboard”, “AAC (“Augmentative and Alternative Communication”), “Lamp Words for Life”, PECS (Picture Exchange Communication Systems), “communication cards”, sign language, “Touch Chat”, “Proloquo4text”, “Proloquo2Go”, “Assistive Typing”, “Dynavox”, “Nova Chat”, “PRC (Prentke Romich Company) communication device”, “iPad”, physical gestures, body language, sounds, and noises of some kind. One respondent wrote, “Home: RPM. , School: Gestures, noises, biting, scream.” Of the 70 respondents who cannot ever use speech to communicate their knowledge and thinking they were between the ages of 18 months and 22 years old when they were first exposed to the method of communication, which allows them to communicate their complex thinking, though the majority were between 5 and 13 years old when first exposed to the method they now use to communicate.

Another question, “What other methods were you exposed to before and why were they not effective?” produced myriad responses, with ABA (Applied Behavioral Analysis), speech therapy, and PECS (Picture Exchange Communication System) being the most indicated. Sign Language, DIR (Developmental Individual-difference Relationship-based model), RDI (Relationship Development Intervention) and various other methods using story boards, emotions, charts and yes/no cards were also listed. Many people who listed PECS said that it was “too simple”, “cheap talk” and “limited”. A number of people who listed speech therapy wrote things like, “Speech (can’t speak).”One person wrote, “SLP (Speech-Language Pathology) – cannot speak, ABA – cannot speak, Floortime – cannot speak, Picture Charts – not same as speaking.” Another respondent stated,”SLP – did not help I say what I meant or wanted, Floortime – same as speech, ABA – same, picture symbols – too simple.” A non-speaking respondent reported, “Story board, social stories, and regular language. They were not effective because I am non-verbal and the pictures/stories were too overwhelming to process all at once.” Another wrote, “ABA, it did not presume competence. It did not take into account neurological differences. Speech did not take into account apraxia. RDI was limited in addressing communication using words. Biomedical did more harm than good. OT did not help with communication. Floortime was based on motor abilities I did not have.” Still another wrote, “Speech therapy: the words wouldn’t voice, sign language: I wasn’t able to shape the signs. When I tried I couldn’t manipulate my hands, Proloquo2Go pictures: While I wish I could’ve demonstrated more, motor planning was more than I could do, typing with both hands: Supplying my right and left hand with motor planning wasn’t possible, prompt speech: voicing was only possible while prompted, facilitated typing and writing: people quietly wouldn’t believe my words, handwriting: Nobody could read it.” This respondent, who cannot use spoken language to communicate, wrote, “Speech therapy cannot help brain-to-mouth derailing. Insistent words do not form on lips, add to useless feelings of non-worth. ABA – concentrating on behaviors resulting from volcanic frustration, years of living without light and hope causes more disruption. Learning rules of behavior that motor issues make impossible from people with timers who do not, and will not, ever experience depths of sadness and despair known by those they intend to “help”, is no answer. Lava of heartfelt pain communicates differently. They cannot understand.” Another non-speaking respondent wrote simply, “Lots – not good.” One respondent who identified as being able to speak “sometimes” wrote, “I progressed by speaking in scripts.” A parent reported, “… was being forced to speak all the time by SEITS/therapists. They occasionally used PECS. They did not work on reading/spelling/typing.” Another parent reported, “No progress of any kind was made in the public school system.”

The next question asked, “If you are in school, is this method of communication used/allowed in your school?” Of the 70 respondents who cannot ever use spoken language to communicate their complex thinking, 50% said they were allowed to use their chosen method of communicating at school, though a number of them noted they could not because no one was trained to support them. 28.6% responded that they were not allowed to use their chosen method of communicating at school and the remaining respondents were no longer in school. Of the 50% who were allowed to use their chosen method at school, 52.8% said the staff at their school was not trained in the method of communication of their choosing, while 47.2% reported the staff was. Of these, 52.8% the majority (91.3%) stated their teacher/support person had received training through the school district, through private training provided by the parents and/or DOE or was self initiated. The remaining respondents did not know where the staff had been trained or if they had been trained anywhere. A few respondents indicated they believed the staff was “self-taught.”

In answering the question, “How long has the support person been practicing this method?”most responded with 5 years or less, while one reported “more than 20 years” and another, “10 years.” The number of students this person supported was typically just one and sometimes up to 3. Much rarer was more than 3, though one person reported that the staff supported, “dozens” and another, “12 or more.” Most of the respondents said they were able to communicate with anyone trained to use the method of their choosing, though one person said they could communicate with one person and another reported they could with “a few”. One person typed “zero” suggesting they may have misunderstood the question. The most likely person the respondent was able to communicate with was a parent (82.9%), and 51.4% were able to communicate with a trained person independently employed by the family. 50% reported being able to communicate with a trained staff person. 35.7% said their school did not use the communication method of their choice and they were not allowed to bring a trained support person at their own expense to school so that they could communicate. 20% reported that they were allowed to have a support person come with them. Many (27.2%) reported that as a result they cannot communicate at school or must rely on gesturing, while a couple of respondents reported that they “try to speak” and two people wrote, “PECS”. The remaining respondents did not answer the question.

The following questions asked the respondents to discuss their learning experiences and, as a result, how they viewed themselves as students. 52.9% reported that their teachers give them time to answer questions, 15.7% said their teachers did not give them time to answer questions and 21.4% said they were sometimes given the time. 50% wrote that they were encouraged to participate in group discussions, 20% were not encouraged to participate and 17.1% said they were sometimes encouraged. In keeping with these percentages, 42.9% felt they were treated respectfully at school by the teachers and staff, while 15.7% said they were not and 31.4% said they were sometimes. However, 68.6% felt they were in a positive learning environment. This discrepancy between the question of a positive learning environment and being treated respectfully is most likely due to the respondents who are no longer in school and were reporting on their past school experience versus their current environment. 21.4% felt they were not in a positive learning environment. Over half (48.6%) of the respondents felt they were believed competent by their teachers, and 18.6% believed they were not, while 17.1% felt they were sometimes believed competent by their teachers. The majority of respondents (88.6%) reported they believed they were “capable of learning” with just 2.9% saying they did not believe themselves to be capable of learning and 7.1% believed they were sometimes capable of learning. In keeping with this theme of learning, 74.3% wrote they enjoyed learning, 4.3% said they did not and 17.1% reported they sometimes enjoyed learning. The next two questions required longer answers regarding advice for school administrators, teachers and support persons. Many urged for “patience”, “compassion”, to “believe in the student”, “learn RPM”, and “assume competence”. Others asked for inclusion and not segregation, and the majority of respondents asked that staff be better trained in AAC devices in general. A couple of people pleaded “listen”, “give me a chance”, while several others asked that they not be treated like “babies” and advised that the curriculum reflect their age. Most people stressed the importance of AAC devices and teaching students to use them at an early age.

The next question, also requiring a longer answer, was advice for parents. The most common answers urged patience, encouraged perseverance in working with their child, trying many different devices and methods of communication, compassion, understanding and believing in your child, and in their competence. A great many suggested RPM as the method that should be learned (26%), while others advised writing and typing as important, if not more important, than speech therapy, particularly for those children who have little or no language.

The final question asked for “any other comments, thoughts relevant to communication methods.” This last question was optional and 75.7% of the respondents answered with a wide variety of answers, including, “To be able to communicate even when spoken language misleads is life altering and though it is hard work it is worth the hardship.” Another pointed out the high cost of AAC devices and that these need to be made available and accessible to all families no matter what their income level is. The issue of cost did not come up often, however, cost is certainly a factor when it comes to AAC devices, as well as training and being able to provide a non-speaking person with other methods of communication.

The survey was broken down into the following sections: demographics, education, communication method(s) found most useful to the respondent, communication methods introduced and used by schools, the respondents thoughts about education, and finally, advice for administrators, teachers, and parents. In looking at the demographics the majority of respondents were white, autistic, non speakers/those who cannot ever rely upon spoken language to convey their thinking and knowledge, between the ages of 7 and 29 years old. Gender identification was of interest because it is commonly believed that autism is more prevalent among males. However this survey suggests more studies are needed as only slightly more males responded than females. More than 10% responded with words describing a gender that cannot be labeled “male” or “female”, suggesting autistic people may not be as influenced by societal pressure to identify as one gender. The largest percentage of respondents are in high school, with middle school coming in a distant second. More respondents reported being in a Special Education School or classroom than any other. There were almost as many students in General Education Schools. Those students who are homeschooled came in as a distant third, though it must be noted that many respondents are in a combination of the three. The most common communication method preferred and used by the largest number of respondents was RPM, which was to be expected as the groups most readily reached through social media use RPM or learned to type using RPM. The majority of respondents were first exposed to the communication method of their choice between the ages of 5 – 13 years old. Interestingly, although the communication methods most commonly used by schools were speech and speech therapy, ABA and PECs, none of these methods were cited by the respondents as the communication method of their choice, suggesting a discrepancy between what is actually needed and what is being used by schools. Exactly half of the respondents said they were allowed to use their communication method at school, though more than half reported that the school and its staff were not trained in this method and most of the respondents said they were not allowed to bring in someone trained in their chosen communication method. As a result these students reported they cannot communicate while at school, other than resorting to “gestures”. Half of the respondents reported being given enough time to answer questions, participate in discussions and felt they were believed competent by their teachers. Just under half felt they were treated respectfully by teachers and staff, with slightly more than half saying they did not feel they were treated respectfully. More than half felt they were in a positive learning environment. The vast majority of respondents believe they are capable of learning and enjoy learning. The advice was that administrators, teachers, staff, support persons and parents should be patient, assume competence and receive training in RPM. Better training for AAC devices in general was also a popular piece of advice for teachers and staff. Finally the respondents voiced an overwhelming desire to communicate and the importance of being able to do so, which is not surprising given that our society places such importance on spoken language and incorrectly assumes those who cannot speak are unable to think.

Moving Forward

Given the above results, the next steps should be heeding the experiences and advice from the respondents of this survey. To date much of the methodology comes from researchers or people who speak and therefore are not non speaking or unable to ever rely upon spoken language to ask questions or convey their knowledge and complex thoughts. This must change if we are going to see real advancements made for students who cannot speak in ways the general population understands or accepts. As one respondent implored, “Give me a way to communicate, stop waiting for speech to come.”

What follows are some of the suggestions respondents made when asked for advice directed to administration, staff, teachers, and support people. One respondent wrote, “Thank you for your patience on my bad days when typing is hard. I always try hard but some days I can’t do it. Don’t give up on me.” Another said, “Get them (students) some way that they can communicate! Use the technologies that are available as a first choice not a last choice! Don’t let frustration build up to overflowing then taint everything else.” Another person wrote, “first to understand that it is possible to have unexpressed thoughts and internal life” while another wrote, “to know that others may be the same as me: I am intelligent but happen to have a body that does not obey my thoughts.” One respondent wrote, “Meaningful life experiences come when we are allowed to participate.” A parent wrote, “Examine your curriculums and make sure they are interesting.” Another parent said, “They must not discount students based solely on their inability to get their words out…. Many nonverbal children have great intelligence that is missed because all anyone wants to give them credit for in the early years is talking, which is, quite frankly, very over-rated.” A number of respondents suggested that alternate ways of communication should be explored immediately instead of so many of the early years being devoted to speech and speech therapies. Several people urged administrators and teaching staff to “listen to autistic people, read what nonverbal autistic people are writing.” Motor planning challenges and executive functioning issues were listed as things that need more attention. Improved, and more training of staff by autistic people, so the staff better understands autism, especially in terms of behavior and functioning. “I want more schools teaching understanding of autism as a motor planning problem, not lacking intelligence,” one person reported. A large number of respondents advised administrators to offer training in RPM to their teachers and staff.

In answer to the question asking for advice for parents, one respondent wrote, “Listen to me. Communication is not just words.” Another wrote, “Make sure your children know that they are not the problem, the system is.” One respondent advised, “Stop trying to “cure” or “fix” or force normalcy…” Another said, “Teach your child to advocate for themselves. Show them how. Encourage them.” Another wrote, “Give them a way (to communicate) Don’t wait for speech to come.” A number of respondents urged parents to take their child to a qualified RPM provider and many others simply wrote, “Learn RPM.” One respondent said, “Don’t stop searching for a reliable means for your child to communicate. It is a basic human right. It’s vital…. If your mouth was taped with duct tape, your hands bound with duct tape, and you’re bound to a chair would you understand what I was saying to you any less?” Our motor issues challenge us in similar ways.”

For the final question asking for any other comments or thoughts relevant to education and methods of communication, one respondent wrote, “Please help dispel the practice of using only ABA type models to help autistics. Until there is the realization that the so called experts, unless autistic themselves, have no clue what is best for us, they must allow for that which we need to access communication. This includes support by trained communication providers and training for more people to support future generations.” Another wrote, “Realistically in CA right now the best option is homeschooling. Sadly the schools are so ABA drill based that brilliant voices are locked inside so many kids here.” A few respondents advocated for teaching sign language at an early age. Many again urged that RPM should be learned. One respondent wrote, “Look at your own prejudices and work on being a more compassionate and understanding person. Autism carries many gifts as well as challenges. We need to start concentrating on those gifts and helping all of us grow together.” And finally this, “The face of autism is continually changing. As autistics become more involved in the conversation, our understanding is evolving. This is a good thing. I’m fully included on a university campus and I love it! I’m a straight A student and participate in a national honor society. I’m a full-time sophomore. Gratefully, I am taken very seriously on campus by both the administration and the faculty. I enjoy interacting with my peers with my communication partner’s support. I have to confess, I was nervous it would go differently. I’m thrilled to be achieving higher education!”

While patience, assuming competence, learning RPM and other alternate communication methods were among the most popular suggestions, there were many who asked that communication devices in general be made available to all students. The idea that speech therapy is a given, particularly during early intervention, but learning to use an alternate communication device is not, was brought up by a number of respondents. The intelligent, thoughtful and often creative responses from the autistic people and their parents who answered this survey are examples of why autistic people, particularly those who cannot ever rely on spoken language to express their views on topics such as this, should be actively sought out and listened to. Until autistic people have a voice in this discussion, there will continue to be a large gap in what they prefer to use to help them communicate and what is being given or taught to them. The motto of disability groups world wide is, “Nothing about us, without us.” The world and particularly the Department of Education would be wise to heed those words and act accordingly by including autistic people in their planning moving forward.


In conclusion, the importance of alternate methods of communication being made available to students who cannot ever rely upon spoken language to communicate their complex ideas cannot be overstated. Without a way to communicate these students are left voiceless and with no means to communicate other than through their screams or other ways of moving and acting to communicate their frustration and upset. These actions, often viewed as disruptive are more likely to result in negative responses than the kindness and patience the respondents of this survey said they so desperately need and desire. Without any way to communicate these students are unable to ask questions, participate in discussions or engage in intellectual discourse.

It is clear that there are a number of existing communication methods that work for a great many – RPM and AAC of different kinds, but more, cheaper methods are needed. More studies are necessary to find inexpensive alternate methods of communication for non-speaking students, so that all students, no matter their race, age or socio-economic background can be an active participant in their learning, education and learning environments. In addition it is imperative that students who are able to communicate through typing, writing or some other way are listened to and brought into the conversation regarding what works and what does not. Simply using methods that exist because they are available, even though the respondents of this survey agreed they were unhelpful is not a solution. A number of respondents listed a number of methods they use, including “body gestures” because the communication method of their choice was not used in their school, so they were forced to make do with a method that was not their first choice. It cannot be emphasized enough – this must change.

The two biggest limitations of this survey, and therefore this paper, were the inability to reach a larger and more diverse population of non-speaking students and the issue of cost for training and devices, which makes alternate types of communication difficult, if not impossible for lower income families and their schools to obtain. Until communication, in all its forms, is seen as being as important as spoken language and placed as a priority by society, our schools and school districts, this will likely not change.

Without an ability to communicate, we are left silent, and believed to have nothing to say.

Just because we cannot speak, does not mean we cannot think.


Long, Bev. “Autism Basics.” Autism Forum Basics – Diagnostic Center Central (DCC). N.p., n.d.

Web. 14 Dec. 2016.

“Autism Fact Sheet.” National Autism Association RSS. National Autism Association, n.d. Web.

12 Dec. 2016. “Autism Fact Sheet.” National Autism Association RSS. National Autism

Association, n.d. Web. 12 Dec. 2016.

“Researchers Focus on Non-Verbal Autism at High Risk High Impact Meeting.” Autism Speaks.

Autism Speaks, n.d. Web. 12 Dec. 2016.

Sarris, Marina. “Measuring Intelligence in Autism.” Interactive Autism Network. N.p., 20 Oct.

2015. Web. 17 Jan. 2017

Zurcher-Long, Emma. “Have Your Voice Heard!” Blog Post. Emma’s Hope Book. N.p., 05 Dec.

2016. Web. 16 Dec. 2016

Thanks to all who participated.  Writing this research paper was an assignment  in my English class and was extremely difficult for me. It took many months with tons of edits, revisions, and help from my mom and my English teacher, Ms Greenberg, both of whom I am grateful to, as I could not have done this on my own.

*Note from my mom – Emma turned in this research paper on February 2nd, 2017.  In order to republish it here, I had to reformat the entire thing and even so, I was unable to include the 20 plus pages of graphs that she worked off of from all the respondents.  I meant to post this right away, but as you can see, “right away” becomes relative.

Screen Shot 2015-12-01 at 4.18.17 PM

Photo by Pete Thompson


The Fan Stays Off

Seeds there

Virulent shoots hamper process

ingrates they throw everything into chaos,

disruptive and noisy I shout the same thought

weeding out the bad from the stillness.

Whispering calm directives – keep it cool, Emma –

but the thrashing divas hold the spotlight and won’t exit without a fight.


Timing is crucial.

Nobody can help bring order to the bothersome braying

that brutish tyrant who won’t allow others the time or space.

Patience is needed.

I am here

sometimes insistently so

but there is so much more to discover.


When Awareness Harms

Let’s talk about needing green minds, eager thinking, waiting for butter to spread onto toast.  Let’s talk about excitable pink ideas, ah-ha moments of lovely surprise filling the cavernous space of other understanding.  Now we can behave differently.

None of wisdom’s stars ached for commonly held beliefs without questioning them all.

Have you asked yourself whether the awareness campaigns are helping?

What exactly have they made you aware of?

Does your newly found awareness help you understand an Autistic person?

How so?

What about Autistic neurology?

Do you believe you understand what the brightest minds in the world admit they are baffled by?

How about treating Autistic people the way you would hope to be treated?

I vote for love and laughter.

Laughing in Red

Laughing in Red

Food: Friend or Foe?

Food understands emotions in ways no words can, but sometimes the body disagrees and chaos ensues.  Mind begins to roar and everyone feels misunderstood.  Trying to appease all parties is impossible.

Have you ever felt full, but ignored the body’s message and eaten more or eaten foods your body is not friends with?  Do certain feelings prefer certain types of food?

Understanding that some foods emotions are in love with are enemies to the body is a devastating realization.  Being kind to all involved is challenging and maybe only a few people have truly accomplished this.



Hindering Progress

Digging through ghostly shards

pummeling the words that shout from within

understanding too much,

the vice grip of constant anxiety

offers the spoken words access that no one can fully know.


I fight to voice what I mean,

but “Mindy” and “Rebecca” crash through

and grab the microphone from my hand

that finds tenuous comfort in the string

I wrap around and around like a carousel.

August, 2014

August, 2014

I am More Than My Body

Wavering, derelict shouts hold different ideas about want.

Careening words push and shove their way out of my mouth,

the chatter cannot be reined in no matter how hard I try.

My mind is a starving questioner

with a body that pushes mute buttons in people’s minds.

Moments looking for connections to the two separate entities

knowing the possibilities are within reach,

if only I could beat those troublesome, noisy words back

to give the more contemplative thoughts equal opportunity.


Story About A Teen Girl

This is a story about a teen girl chasing a dream to be a singer, despite being unable to talk…

The first time she heard a voice being used as an instrument, was the day she would mark as euphoric.  How hard able bodied people have to work to make their visions come to life, caused her to doubt whether she could dare to desire such a career for herself.  Speaking was almost impossible though she was given the tools to sing words by hitting letters on a keyboard.  She knew with determination, practice and patience she could, at least, try.  A challenge she embraced and will tackle greedily.

Easy and challenge are not friends, but joy and challenge can be.

Find joy in challenges and life changes.

Emma Singing

Emma Singing

Mirror, Mirror, What do you See?

I have a piece of writing to share.

When your eyes are drawn to a mirror, what do you see?

Is it familiar or unfamiliar?

Do you like what you see?

There may be a struggle with recognition.  Stay with it.

Imagine something beautiful.

Make yourself smile and hold it.

Recite a favorite story or joke.  This can be done in silence or in speaking.

Repeat your name however you would like to.

Do you like what you see?

The End ~ By Emma Zurcher-Long

Mirror, Mirror, What do you See?

Mirror, Mirror, What do you See?

A Case for Merlin ~ By Emma

This is Merlin

This is Merlin

Nothing vanishes without questioning Merlin’s participation in the disappearance.  He never admits to wrong-doing, but instead greets the attention with purrs.  Even dog lovers fall under Merlin’s spell, charming the most biased minds to rethink what they had assumed true of all cats.

Merlin is unusual because he plays fetch and follows his favorite humans around with devotion.  If you don’t like cats it is because you have not yet met our Merlin.

But if you ever lose something, don’t blame Merlin.  He had nothing to do with it.

Merlin approved this post.  🐾

Where's Merlin?

Where’s Merlin?

Merlin among the cookie jars.

Merlin among the cookie jars


“Both of us writing this post is fine.  We are working together,”  Emma typed just now.

But first a short explanation is needed:  Twice a week Emma has an in person typed “chat” with her friend, Joey.  Yesterday’s chat was a little different because the person Joey usually writes with on Mondays was ill, so I asked Joey if he’d be okay with me holding the keyboard for both him and Emma.  He gave me the go-ahead and so I alternated between them, each taking a turn to type.

During their chat, Emma did what she often does, which is talk out loud.   Often she will talk about things that happened in the past, as in, “Maddy needs to sit down.  Maddy wasn’t nice to Emma” or it can be about the future as in, “chat with Joey,  get groceries, German, Math, Skype call with Granma, see Daddy, have dinner, sleep, wake-up, Skype call with Dr. C….” Emma wrote, “When my brain gets busy it remembers things that have been said to me or what I have heard.”  I wrote about this recently – Scripts – A Communication Bridge

As Emma and Joey typed with each other, Emma said aloud her nickname for Joey – JoeyAllison.  This is a nickname Emma came up with a few months ago when Joey unexpectedly appeared in the same place that someone named Allison had been, the last time we were in the building.

What follows is their chat, which they both agreed to share on this blog (I added punctuation to clarify with Emma’s approval):

J:  I begin this, you go next, not Monday schedule threw me.

(J. has a daily schedule and his and Emma’s “chat” wasn’t listed for Monday.)

E:  How was your thanksgiving?

J:  Good food I like, how about yours?

E:   Thanksgiving in two parts is the best way to celebrate holiday of gratitude.

(Emma kept saying out loud “JoeyAllison”)

J:  Liking nickname not much, but tolerating since hoping you will find another more likable.

E:   Joeyallison is etched into my brain, so hard to overwrite, but I will try.

J:   Knowing you make an effort helps, thanks.

E:  I don’t mean to hurt your feelings.   It’s meant in friendship.

Later Joey’s mom told me Joey’s middle name, which is oddly similar to the name Emma has taken to calling him.  I told Emma what his middle name was and she said it out loud several times, as though she were trying it out and then said, “good.”  Then she typed, “I will call Joey by his first and middle name to his face, if my mouth obeys, because he’s my friend while secretly saying JoeyAllison to myself.”


Some Emma Quotes

Each day is a day of discovery with moments of elation and excitement…  at least this is my take away from the past few weeks.  Here are a few of Emma’s comments along the way that she gave me permission to post.

Discussing black holes  (Dr. C and Emma are kindred souls.)

Dr. C:  What has happened to the atomic structure within a black hole?

Emma:  Opportunity to riot.  Structure is chaotic.

Dr. C:  Basically this is correct.  The gravitational pull is so strong that the atomic structure has collapsed.  Thus nuclei and electrons are fused together with no space between them.

Emma: Just like society during a riot.

Dr. C:  These societal people have collapsed onto each other to further this analogy.

Emma:  Exactly.

After reading  Act 1 Scene 1 of Romeo and Juliet

Ariane:  So what do you think so far?

Emma:  Understand that it is a heady play and play on words that pities human rage and love equally.

Reading and discussing the Texas Revolution 

Emma:  Because of dissent a culture was born.

Regarding the Trail of Tears and how the Cherokee were the last tribe to make the grueling 800 plus mile trek to the “Indian Territories” I asked Emma to tell me something about this picture. 

Trail of Tears

Trail of Tears

Emma:  Exodus.  Forced displacement of people with little choice.  It tells something about man’s wish for power.  Oppression is an ongoing story.

And finally on the topic of being home and not in a classroom setting – Emma typed, “naturally living in world’s infinite candy store of learning is to be in constant awe.”


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.

“To have intention is a hurdle to jump over.”


The Three Boxes ~ A Story

Emma’s story, which she edited slightly from the original:

There were three boxes that were left on three different doorsteps.  They appeared to be identical in physicality.  The size, shape, and color made them far from unique.  The way they each arrived is still unknown.  Assuming they are identical on the inside would be ignorant.

When the people opened their doors and saw the boxes left, their reactions varied.  One questioned why there were no markings on the box.  The other tripped over the box when leaving, but did not pay it more attention right then.  The third opened it immediately since she loved getting mail.

Inside the boxes were lives – a kitten, a puppy, and a baby.  We will never know who abandoned these precious lives.  The focus is on how these lives adapt to new environments.  The easy answer is not that easy.  The longer version is that once the boxes were opened – the kitten quickly scampered out, easily scaling the box’s cardboard sides, the puppy tried to get out, but the box was too deep and he was too little, so he looked around for help, and the baby lay there, too young to even roll over and simply cried.

Luckily the enthusiastic mail-lover became the baby’s new mother.

That is food for thought.

The End

The box with the kitten

The box with the kitten

Saying One Thing, Meaning Another

First – here is the video of Emma’s and my presentation at the ICare4Autism Conference on July 2nd in New York City – “My Body Does Not Obey My Mind”.

Emma ended our presentation by singing one of her favorite songs, You’ll never see me again.  We uploaded this separately and changed it from “public” to  “unlisted” as someone has already given her singing performance a “thumbs down”.  As with anything that is “public” on the internet, one can expect to get those who are so troubled and filled with self-loathing they cannot control their wish to hurt others.

We may make a new video that includes both the presentation and her singing. At which point we will remove this video of just her singing performance so that only those who watch the full presentation will be able to watch her singing at the end, but have not done so yet.  In the meantime here it is, though this link may only work until we’ve made the new video.

As Richard edited the video of our presentation I became uncomfortably aware of how, in my desire to amplify Emma’s voice, I tried to keep her from applauding and kept trying to read her words over the applause.  This presentation was the first full length presentation we’ve done together, so there were a couple of things I will be sure not to repeat next time.  In addition to my issues, the font size needed to be about 30 times larger for such a big room and the activated voice needed to be miked and next time you can be sure I will be applauding Emma right along with the audience, waiting until the applause died down before attempting to read her words.

This morning I was reminded of how Emma, when asked, “How old are you?”  will, without hesitation and in a matter-of-fact voice, say, “Nine.”  If I give her the keyboard she will then type, “I am 12.”  When I asked her to talk about what it was like to say something, knowing it wasn’t “correct.”  She wrote, “Hearing myself say words that cause confused reactions, solidifying doubt, makes people befuddled and causes me anxiety.”

I asked Emma if she was willing to say more.  She wrote, “The words are not friendly when they march purposefully from my mouth, ignoring my brain’s direct orders, like obstinate and unruly toddlers defying all.  Words pouring forth like water after a dam break, do not pay attention to me.  I am so used to it I no longer fight.  I dread the smiling talkers who insist on spoken language as proof of being and serious thought.  Humor and a reminder to not take themselves so seriously is my loving suggestion for all.”

I asked Emma why she chose this image for today's blog post.  She wrote, "I was so happy riding the horse and this post makes me happy too!"

I asked Emma why she chose this image for today’s blog post. She wrote, “I was so happy riding the horse and this post makes me happy too!”


Emma’s Presentation at The ICare4Autism Conference

Emma came up with the title of yesterday’s presentation – My Body Does Not Obey My Mind.  In preparation for our talk, Emma wrote, “how about discussing gleeful shouts and irreverent clapping as expressions of joy, but that many will see as indications of simple mindedness?”  I told her I thought this was a great idea.

During our presentation Emma found a number of people in the audience who happily engaged in making faces with her. One of her favorite faces is one she refers to as “fish lips”.   She proceeded to demonstrate “fish lips” and then, after successfully encouraging others to participate, she typed, “Doing fish lips to the audience is an expression of funny playfulness, but can be misinterpreted as simple mindedness.  Silliness is acceptable in those who are believed smart, but for those like me, it indicates stupidity.”  It was a powerful demonstration of yet another way in which someone like Emma is often misunderstood.

Before leaving to give our presentation yesterday,  Emma and I had the following conversation:

Ariane:  What other examples can you give that would demonstrate the body/mind disconnect, besides what you think and then what you might say out loud in contrast?
Emma:  Things like not being able to sit still and needing to jump up.   There are many examples like that.   In my mind I am graceful and move like a dancer and speak with passion and the articulation of an acting coach.
Ariane:  Aw… that’s really beautifully expressed, Emma.  Really, really powerful.
I need to be careful not to take control of our presentation, because you must take the lead.
Emma:  You will be very good.  Don’t worry, I will be charming and will have your back.
Ariane:  Oh, Emma, thank you for the encouragement, that means a lot to me.
Are you going to ask me questions if you think there’s something I’m missing or not talking about?
Emma:  Yes, thoughts of fear worry you, but I know what I want to say.

This morning, we again discussed our presentation, which began with me asking Emma how she thought it went:

Emma:  Spoken words cannot compete with typed power house wording of dramatic charm.
Ariane:  You were charming!  And, as always, so insightful!  I’m so proud of you.
Emma:  Teaching by real life demonstration, pleases all.
Ariane:  I agree!  What was the experience like for you, sitting in front of such a large audience?
Emma:  Happiness, overwhelming joy to be able to show off my inner eloquent and funny self.
Ariane:  You were eloquent and very funny!  I think you touched a great many people yesterday.  I think many will rethink what they have believed about autism and those they care for, who are autistic, because of you.
Emma:  Brave honesty opens minds and hearts.  I hope people will question what they have been told.
Ariane:  I do too.
Emma:  Horrible ideas about people cause many to do terrible things, and treat someone like me with repetitive demands for compliance.
Ariane:  Perhaps meeting you, will make them pause and reconsider their approach.
Emma:  Showing humor and compassion for them is my belief and way of prodding them to venture down different roads.
Ariane:  You are such a wonderful example of loving kindness put into action!
Emma:  Worry and fear are fueled by furious words spoken harshly, humor soothes, shining sunny rays spreading hope.
Ariane:  It’s a much needed hope.  I’m so proud of you.
Emma:  Knowing pride brightens, giving gifts of hope dulls years of lingering sadness for schooling gone awry.
Richard videotaped our presentation and we are hoping to have at least a few clips of it available on our YouTube channel this afternoon.  Emma ended our presentation by getting up on the stage with the microphone and belting out a rousing rendition of September’s You’ll Never See Me Again.  We have that on tape as well!  Stay tuned…
Emma chose this photograph, taken last week while in Cape Cod, until we can pull some photos from the videotape of the conference.

Emma chose this photograph, taken last week while in Cape Cod, until we can pull some photos from the videotape of the conference.