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Methods of Communication – My Research Paper

Posted on December 9, 2017 by emmazurcherlong | 19 comments

“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?”

Introduction

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.

Conclusion

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.

Bibliography

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.

Photo by Pete Thompson

19 Comments

Posted in Autism, autistic, Autistic communication

Tagged AAC, alternate communication devices, autistic students, communication, Education, learning, non-speaking, research, RPM, school, spoken language

Have Your Voice Heard!

Posted on December 5, 2016 by emmazurcherlong | 23 comments

For my Research and Writing English class this year I have to write a paper on a topic of my choice that weaves data and data analysis with factually based interpretation of that data. My research question for this paper is: 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?

Because 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 is. Additionally I am curious to know whether a student’s school allows the communication method chosen by each student to be the most beneficial, and if not, how the student then communicates their complex thinking and knowledge.

This survey uses a google form and is completely anonymous. You will not be asked for any contact information, your name or the name of your school.

Who I’m hoping will participate:

Anyone, anywhere in the world, who cannot use spoken language to convey their complex thoughts.
Anyone who cannot rely on spoken language most of the time.
If you are no longer in school you can fill the survey out by remembering your experience when in school.
If you are homeschooled or are doing a combination of online, non-traditional-school or other learning experiences, please consider participating.
Parents whose child/offspring fits the description above can fill out all factual questions and those questions that are subjective can choose “other” and explain you are a parent or give your opinion and explain that it is yours.

This is the link to my survey: Survey

I hope you will add your voice and experience by participating in my survey. I am glad if you do.

Have your voice heard!

Banding together with our typed words,

Emma NYC

That’s me, Emma, at school this morning. Photo credit: Mom aka Ariane Zurcher

23 Comments

Posted in Autism, Autistic communication, communication

Tagged AAC, AAC devices, autistic, communication methods, general education, homeschooling, non-speaking, non-speaking Autistic, school, schooling, Special Education, special education school, survey, unschooling

Can Speech Challenged Students Get an Appropriate Education?

Posted on February 9, 2016 by emmazurcherlong | 60 comments

What would you do if the whimper in your heart could not find the right words to speak? What if you couldn’t control the things you felt compelled to say, even if you knew those who heard you would not understand? Speaking is not an accurate reflection of my intelligence. Typing is a better method for me to convey my thinking, but it is laborious and exhausting. So what is to be done with someone like me? Is it better to put students like myself, of which there are many, in a segregated school or classroom, is inclusion the better option or is there another answer? I was believed not capable enough to attend a regular school, nor was I able to prove this assumption wrong. In an ideal world these questions would not need to be asked because a diagnosis of autism would not lead to branding a person as less than or inferior. Those who cannot speak or who have limited speech would not immediately be labeled “intellectually disabled” and “low functioning”. We would live in a society that would embrace diversity and welcome all people, regardless of race, culture, religion, neurology or disability. Our education system mirrors our society and in both, we come up short.

In New York City kids like me are not attending mainstream schools because we are believed to be unable to learn complex subject matter. I was sent to both public and private special education schools, specifically created for speaking and non-speaking autistic students and those believed to have emotional issues. Because I cannot voice my thoughts and so rely on favorite scripts, my spoken language causes people to assume my thinking is simple, I am unable to pay attention and cannot comprehend most of what is said to me. As a result, none of these schools presumed that I, or the other students, were competent and their curricula reflected this. At the private school I attended for six years, I was regularly asked to do simple equations such as 3 + 2 = ? When I said “two”, because that was the last number spoken and my mouth would not form the word “five”, my teachers believed I could not do basic math. It was the same with reading and something as simple as being asked to define the word “cup”. I clearly know what a cup is, but when I could not say it, I was marked as not knowing. This school used the same fairy tale, “Three Billy Goats Gruff”, for three years as the foundation of a “curriculum”. At another school, this time public, while my older brother was learning about World War II and writing essays on whether the United States should have dropped an atomic bomb on Hiroshima, my class was planting seeds in soil and asked what kinds of things were needed for the seed to take root and grow. When my classmates, many of whom could not speak at all, and I could not answer with the words “sunlight” and “water”, it was assumed we did not know the answers or understand the question. At another public school I spent months going over how many seconds are in a minute, minutes in an hour, hours in a day, but when I could not demonstrate that I understood either in writing or spoken language, it was believed I had no concept of time.

There is no test that allows me to show the creative ways in which I learn. I cannot sit quietly unless I am able to twirl my string, softly murmur to myself and have a timer nearby. I cannot read aloud or answer most questions verbally, but I can type. My mind is lightning fast. I can hear a song and then replay it note for note with my voice. I have an incredibly large capacity to listen, learn and feel. I listen to conversations around me regularly and often wish that some parents would appreciate their children more. The other day on the subway a Mom said, “Shut up, you’re being stupid!” to her son. The boy was silent and put his head down. The Mom proceeded to play a game on her phone. I have learned that everyone is delicate. In that moment my body felt tremendous sadness. I see patterns in unrelated things, such as I am able to notice every article of clothing that someone wears on a given day. People’s attitudes are reflected in their choice of clothing. When the same clothes are worn over and over, I have the feeling the wearer is stuck. People’s self-confidence increases when wearing new clothing. My expansive vocabulary is impressive. I’ve listened to how people put words together my entire life. As I have made sense of the words used, I have been able to understand their meaning, though I am unable to ask for definitions. I notice people’s sadness, even when they are smiling. I almost feel like I am violating someone because I can see inside of them and know their feelings. I’m told I use the written word in unusual and interesting ways. I have been published in magazines and blogs. I give presentations around the country on autism and gave the keynote address at an autism conference this past fall. I am co-directing a documentary, Unspoken, about my life and being autistic and I hope, one day, to be a performer.

The best education I’ve received to date in a school is at a private non special education school, where none of the teachers or administration has been given “training” in autism or what that supposedly means. They do not believe I cannot do things the other students are able to do. In fact, though I am just fourteen-years old and technically should be in eighth grade, I am doing upper level work. I am treated respectfully by teachers and students alike. My typing is slow, but the class waits for me and gives me a chance to express myself. During a recent Socratic seminar where the students were expected to speak on the book we had just finished, everyone waited for me to type my thoughts and gave me time to have my thoughts on an earlier point, read later. In my theater class the teacher began the semester with non-speaking work. We learned about mime, silent theater and the importance and impact of physicality while performing. I have been asked for what I need in order to excel, and accommodations have been made, I know, but I hope and believe that I am not the only one benefitting from my presence at such a terrific school.

There is a saying in the disabilities community, “Nothing about us, without us.” A complete rethinking about autism and autistic neurology is needed if special education schools or any schools are going to educate those of us who think differently. Believing in the potential of all students is not on any test. Presuming that each and every student, whether they can speak or not, can and will eventually learn given the necessary supports and encouragement is not commonly believed, but it should be. Wouldn’t it be great if autistic people’s ideas were included in designing curriculum and the tests that are meant to evaluate them. Isn’t that what you would want if you were like me?

Photograph: Pete Thompson Photo

60 Comments

Posted in Autism, communication, Education

Tagged autistic, Autistic Blogs, Autistic communication, Blogs by Autistics, body/mind disconnect, communication, disability, echolalia, Education, functioning labels, homeschooling, human rights, inclusion, language, non-speaking, presume competence, school, scripting, Special Education, special needs, Unspoken

Typing to Communicate & Busy Work

Posted on September 11, 2014 by arianezurcher | 28 comments

Typically in ~~school~~ life there is a certain amount of busy work that one is expected to do, forms that need to be filled out (repeatedly), words that you are expected to say whether you mean them or not, because it is what we as a society do. “It’s just the way it is,” we are told.

However, let’s say you cannot speak and must type to communicate. And let’s say you are in school where upon arrival you are expected to sit down, ~~state~~ write your name, what day of the week it is and the date. You are also expected to ~~say~~ write at least one sentence about the weather and another sentence to describe how you’re feeling. Now let’s also pretend that typing is really difficult for you and it takes you some time to do so in the best of circumstances.

For example, writing five sentences may take you ten minutes or more. You are in a classroom with other students, most of whom speak and cheerfully say their name, the day of the week, the date, what is going on weather-wise and how they feel in under 30 seconds. Go ahead, time yourself and see how long it takes you to give that information. I just did -sixteen seconds and I didn’t have to think about any of the information I was giving for more than 5 seconds. I did pause for three seconds to figure out how I would describe my current mood, and probably could have used a more descriptive word than “okay” but for the purpose of this exercise, just went with “okay” and shrugged. 🙂

But what if you can’t do this. You cannot find the words readily and when you do, you blurt out someone else’s name or maybe you get the day of the week wrong and some of the other kids chuckle under their breath, but your hearing is excellent and so, of course, you hear them. Maybe you see that the weather is beautiful and so you say cheerfully, “Pool!” and there’s more laughter or worse confusion and silence. The only way you can prove that you know any of this is by typing, by pointing to one key at a time with the index finger of your dominant hand, and fortunately you’ve been given the help you need to be able to do this, maybe you’re one of those lucky few that even has someone who is with you who holds the keyboard for you and gives you encouragement.

As you look for the key or the first letter you become distracted and by mistake you hit the wrong key. You meant to press the S for September, but you hit the d, right next to it instead. Hitting the d completely derails you, but you know there’s a month that starts with the letter d so you spell out December. Maybe everything breaks down from there, or maybe you’re able to tough it out and with some patience and help you are able to get back on track, you type the date and the day of the week. You must constantly check in and remind yourself to keep on task. You must concentrate and not become distracted. You know you must write about the weather, something you don’t particularly care about as you know you won’t be able to go outside to enjoy it anyway, so why does the weather matter?

Still you persevere. You say that it’s sunny outside and finally you’re in the home stretch. You have to write a sentence about how you feel. That’s easy. You know you must write that you’re happy because last time when you wrote that you were feeling frustrated there were questions, questions you couldn’t answer and so you write, “I am happy.” By the time you are ready to hand in your paper you look up and find the classroom is empty. Everyone has gone to do “movement” or morning yoga or they’ve split into smaller groups and are reading. Those five sentences that were asked of you, those sentences that you labored over and now have finished, no one seems particularly interested in reading.

The above scenario is imaginary, but I can still remember the busy work we had to do in school that was very similar to what I’ve described. It was easy for me. I answered the questions without thinking twice and I answered them in under 20 seconds. But my daughter cannot.

If you are going to ask someone who cannot use spoken language to communicate easily, or they cannot speak at all, but can type, even though it may take them five or ten minutes to type a sentence, you better be sure what you’re asking them to write is worth their time and energy.

Typing To Communicate

28 Comments

Posted in Autism, communication, Parenting

Tagged autistic, body/mind disconnect, busy work, Education, non-fluent speaker, non-speaking, Parenting, presume competence, school, Speech, spoken language, talking, weather talkers, writing

Insights From a Non-Talker: Emma’s Conversation With A Friend

Posted on July 10, 2014 by arianezurcher | 14 comments

The following is a conversation Emma, Richard and I had with a friend of ours who works at a school. (DF = dear friend) I have paraphrased DF’s part of the conversation because a) I cannot type as quickly as she speaks and b) she was thinking out loud at certain points, so I just wrote the gist of what she was saying. All of Emma’s words are what she typed. Both DF and Emma gave permission to have their words posted here. As Emma wrote – “People need to understand.”

DF: I’ve been thinking about your presentation (click ‘here‘ to watch Emma’s presentation) and the body/mind disconnect that you talked about during your presentation last week. I was thinking about being respectful and making faces back at you and I know you’re smart, but I was afraid that if you can’t control your body and don’t mean to make faces, is it disrespectful to make faces back?

Emma: Making faces is fun communication in my chosen language.

DF: Is it also the same for the words you sometimes use? So, if you’re saying a word like “peacock”, is it respectful to repeat it back and play with words that way?

Emma: Playing in all ways is my favored way of interacting with people even when they don’t speak silly.

DF: Sometimes I feel bad because I want to ask you questions because I want to know you better, but I don’t want to ask because I know how hard work it is for you to answer.

Emma: Talkers always want words, as though everyone stated exactly what they meant.

Richard & Ariane: (we both asked similar questions, but in different ways, this is a combined version of what we asked) Emma, I’m curious… when you say “peacock” sometimes you are singing in an operatic voice, but other times you are saying the word over and over while also saying “peek-a-boo” so I’m wondering are you mimicking the bird or are you playing around with the words, “peek-a-boo”?

Instead of pointing to the “y” or “n” for yes or no, Emma pointed to the letter, “w”. This led to a quick back and forth between us, talkers, about how Emma rarely just answers yes or no when given the opportunity to, but instead writes much more. I even then joked to Emma, “Em, that was a yes or no question. You can just hit “y” for yes or “n” for no!”

Emma: Word play is joyful and I think obvious joy is had with both associations. Decision to sing while thinking about birds with peek-a-boo tail feathers brings happy feelings.

Ariane: Oh my gosh, Emma! That’s so amazing. The tail feathers look like hundreds of eyes and they are only fanned out at particular times! So this wasn’t a yes or no question after all!

We then discussed peacocks, their beautiful plumage and how we often thought we were asking a yes or no question, only to realize how wrong this assumption is.

DF: Okay, so here’s a problem that many teachers have at school. A lot of times kids your age or older have fascinations with things that talkers think are inappropriate. Things like a teenager who likes Teletubbies or wants to carry around a stuffed animal or wants to talk about Thomas the Tank Engine. We want to be respectful and treat that kid like a mature teenager, but we don’t feel comfortable talking about Teletubbies or Thomas the Tank Engine.

Emma: This is their fear of indulging a mind that they suspect is simple, but someone who is known to be brilliant would be thought eccentric.

DF: Should I defend their right to explore their interest in school?

Emma: Yes, expressions are not threatening and harm none.

*Quick aside – using interests as the gateway to other academics is how many homeschool/unschool .

Richard: In the past, while watching you type, you’ve made faces at me and I’ve made faces back and was told not to do that. But I’ve seen you making faces and you still are able to type, should we feel free to make faces with you while you’re typing?

Emma: This is a difficult answer because I prefer to make faces, but I know how much you want to talk.

R: What I meant was, do you enjoy having someone make faces back while you’re typing or would you prefer they did not?

E: I would love to just make faces and not type.

*Another quick aside – so this is the ongoing struggle of all parents it seems to me. It’s those grey areas when we ask our children to do something, even when they may not always want to. For us, we put boundaries around typing sessions, so there is a clear beginning, middle and end. As with most parents, we hope our decision is the right one.

Ariane: Talk to me about when you say to guests, “good-bye”. Often you say it shortly after they’ve arrived, sometimes immediately after they’ve finished dinner. You can clear the room in seconds because they think you want them to leave. But do you want them to leave?

Emma: Saying good-bye to some is because I think they need to go, but other times I am sad and say it because I don’t want them to leave.

*Emma then made a sad face and pretended to cry.

Richard: That’s a good face to make when you’re sad that they must go!

DF, Richard and I circled back to DF’s question about students who have interests in things that the non-autistic educators deem not age appropriate.

Emma: It’s hypocritical though, because I was often given very young books, more suited for a toddler.

I asked Emma what image she wanted with this post, she typed, “google – “talking” and then chose this.

14 Comments

Posted in Autism, communication, Education

Tagged age appropriate education, assumptions, autistic, Education, Educators, learning, non-speaking, parenting. autism, presuming competence, school, special interests, teachers

And Then Suddenly Life Changes

Posted on May 14, 2014 by arianezurcher | 59 comments

Life has, quite suddenly, taken a dramatic turn. Over the weekend I finally came to the decision that I cannot keep my business AND finish this book I’m writing AND work with Emma AND have the time to study this method of helping her, so that I can help others help her. This feels like a good decision, the right decision, one I’ve been struggling with since last fall, but finally feel ready to take the actions to make this happen. So this morning as I looked around my studio, wondering how I was going to sort through everything and begin the process of dismantling a business and a working studio, I received a call from Emma’s school. They are putting on a show next week and there have been some issues that required my presence. As I’ve been going to her school every Tuesday afternoon in an attempt to teach some of the staff how to support her so she can write with them too, I left a little earlier than usual.

After school we met with the principal who asked Emma what she did for mother’s day, Emma wrote, “Mom helped me talk to my brother.”

“Oh! What did you talk about,” the principal asked.

“We talked about whether Truman should have dropped the bomb on Hiroshima and Nagasaki,” Emma wrote. Then she stood up and ran across the room, whipping her arms around like windmills before settling back in her chair.

It was decided that Emma needs to be in a classroom where she is being taught the same curriculum as her same age non autistic peers. Except that she is not yet able to write with anyone at her school the way she can with me, so I volunteered to come in until someone can be trained. It makes perfect sense. But as Emma and I left her school yesterday, I thought to myself – what did I just agree to? It was one of those moments when the full weight of what you’ve committed to hits you and you think – am I going to be able to do this? Really? Can I do this?

Well, I guess we’ll see. And for the next ten days I will get an interesting view into how her school does things. And here’s the other thing… There is nothing I could do that comes even close to being as important as finding a way for my daughter to communicate in a way that gives her greater access to this “awkward world” as she wrote the other day. No book I might write, no piece of jewelry I might design, nothing comes close.

My life is suddenly no longer what it was. I am nervous about going to her school with her and essentially being her one on one aide, but I am also really curious to see how it goes and I’m excited to see her in a class where, I’m hoping, she will be challenged.

Before we left school yesterday, the principal asked Emma whether she preferred being referred to as a young lady with autism or an Autistic young lady, Emma wrote, “I am an Autistic girl and proud of it.”

The principal smiled and asked, “Why do you prefer being called Autistic?”

“Because autism is part of me and can’t be removed,” Emma wrote.

“That makes sense,” her principal said.

I told the principal and assistant principal how fortunate we are that I have a number of friends who are Autistic, one of whom is like a sister to me. And then Emma wrote, “They are my Autistic family.”

How lucky are we?

The journey continues…

Emma and Me

59 Comments

Posted in Autism, communication, Parenting

Tagged autistic, autistic children, Education, language, literacy, Parenting, presume competence, Rapid Prompting Method, RPM, school, Special Education Schools

Emma’s Letter to Her Teachers

Posted on January 9, 2014 by arianezurcher | 39 comments

This is a letter Emma wrote yesterday to her teachers.

Dear ____________________,

I would like to teach you how to use a stencil board so that I can show you how much I know and so we can discuss what you are teaching me in class.

I want to learn both syntax and style of diverse writers. Poetry and prose both interest me. I love to write stories and welcome the opportunity to do so.

You try to teach me, but not in a way that I can learn. Try to learn what my mother has learned from Soma and change how you think about autism.

Addition and subtraction are fun, but I have been doing that for many years and numbers are easy for me to understand. It is boring to do the same thing over and over all the time.

I do not like school and I wish I could go to a regular school where I was treated like other kids.

Sincerely,

Emma

After Emma wrote this letter I sat with my husband Richard, clutching the three pages it took to contain these words that Emma wrote, pointing to one letter at a time on her laminated letter board. I asked Emma if I had her permission to read her words aloud to her dad, she nodded yes and then said out loud, “on the blog.”

Education for our kids, whatever their neurology, is something every parent worries about. Our schools are buckling under the weight of mismanagement, bureaucracy, out dated and irrelevant standardized test requirements, politics, and the diverse needs of our children, make any one-size-fits-all method of teaching impossible.

I don’t have any answers, but I intend to get some.

To anyone who has successfully gotten their non-speaking child (or a child like Emma who is able to speak, but says things they do not intend) into a “regular” school, please contact me and let me know how you did it. Does your child have a one-on-one aide? Did you train the aide yourself? Do you do RPM? Did the school work with you? If they didn’t, what did you do instead? Any and all experiences are welcome. You can also contact me by email: emmashopeblog@gmail.com.

A Session With Soma

39 Comments

Posted in Autism, Education, School

Tagged Autism, autistic, Board of Education, BOE, Department of Education, Education, letter board, non-speaking, Parenting, politics, Rapid Prompting Method, RPM, school, Special Education, unintentional speech

A Witness to Her Own IEP Meeting

Posted on February 26, 2013 by arianezurcher | 31 comments

This morning we went to Em’s IEP meeting… with Emma. I wrote about this ‘here‘ last week. It was the first time we’ve done this and while Em chose not to add any goals when asked at several points during the meeting, she did express interest in speaking with me during our typing session together, later. So I intend to talk with her about what was covered and see what she might like to add or discuss. Most importantly, she was there to witness and hear the thoughts others have regarding her academic goals for the coming year.

At one point she began parroting every word I said. It was like being in an echo chamber. I looked over at her and it reminded me of when I was a kid and my siblings and I would do this to make each other laugh. I do not believe this was the reason Em was doing this however. Both Richard and I felt she was trying hard to show that she was listening and an active participant. A few times when one of us directly asked her whether she agreed or had anything to add she scripted, “Bertie kitty! You have to get off the table.” Or some other equally, (seemingly) unrelated script about my old cat who died five years ago. I kept reminding myself that Em’s language default is a set of scripts. The scripts may or may not be related to the conversation, but are most definitely an indication of intent and interest in being part of the conversation.

For almost an hour Em sat in her favorite chair during the meeting. Not once did she try to get up and go somewhere else. Not once did she indicate she wanted to leave. Not once did she say anything to show upset or stress. I was proud of her. And I was glad she was there, not because she added any specific goals to the IEP, she did not, but because she was present and witness to a conversation regarding the coming year’s goals for her. And her presence matters and changes the conversation, even if just slightly, it makes a difference. As Richard and I continue to move forward in our journey to give our daughter the tools she needs to help us help her, this is an important first step. I had no expectations going into this meeting regarding her input. I had no idea what would happen or if she would want to leave. All I knew was that I gave her the choice to come or to stay with her class and she asked to be present. So she was and for that I am very grateful.

More will be revealed…

31 Comments

Posted in Autism, IEP Meeting, Individualized Education Plan

Tagged Autism, autistic, IEP, IEP meetings, Individualized Education Plan, school, Special Education

An Interview With an Autistic Teacher Who Teaches Autistic Students

Posted on February 4, 2013 by arianezurcher | 17 comments

What follows is my interview with a teacher. A teacher who teaches Autistic students. A teacher who is Autistic.

When were you diagnosed with Autism?

I self-diagnosed as having NLD (Nonverbal Learning Disability) (which I mistakenly thought was mutually exclusive to Autism – a good reason to get a professional diagnosis, not a web diagnosis) in college, which brought me a lot of peace of mind and self-understanding. (And helped me make peace with a lot of my past.) I was in my 30s when I finally made the decision to get the formal diagnosis. (I was both right and wrong: I do have NLD, but I’m also on the Autism Spectrum.)

I got the diagnosis because I was having a lot of trouble communicating effectively at work, and I was getting written up for it. My supervisors were trying to work with me, but I was afraid I was going to lose my job. It wasn’t the first job I’ve had that happen at. The problems my coworkers were going to administration about were hauntingly familiar: my voice tone, my inability to read others voice tone, my quick answers that don’t make sense and sound frustrated. It was a pattern I’d seen before and had never had any success stopping or changing. I knew I needed help if I wanted to save this job.

Why do you prefer remaining anonymous?

For now, at least, I want to maintain control over disclosure. Also, privacy. The web is public and it stays there forever. I’m not comfortable with anything about me, disability related or not, being out there like that. I don’t have anything meaningful out on the web under my real name, and I’ll keep it that way, thanks.

How did you get into teaching?

I think it’s in my blood. My dad is a teacher. I remember being in first grade, when everyone wants to be police officers and firemen: I wanted to be a special education teacher. I got a BA in Psychology and spent 5 years doing direct care before moving to work in the schools. I worked as a paraprofessional while I got my M.Ed. I’m certified in intensive special needs and deaf/blind education.

Would you talk about your childhood and how autism affected it?

I did the stereotypical “little professor” thing. My mom says my favorite word as a kid was “actually.” I had friends growing up, and if my parents thought my relationships with them were a little off, I never noticed. I had no other standard of relations, and I was happy with what I had. My mom tried vainly to model more appropriate social interactions (my poor mother) but it all went right over my head (I do not learn from environmental cues or social models.)

Middle and high school were rough. I was the victim of significant bullying. Kids are mean. I considered changing schools (I went to public school) but decided against it. Instead, I dove into my interests: computers, foreign languages, band, technical theater. Bullying happens during the unstructured times of the school day. I was never unstructured, participating in more classes and extracurriculars than there were hours in the day. (I seriously could have used Hermione’s time turner back then….) Not only did it give me structure and purpose, but it successfully buffered me from my would-be tormentors.

Are you concerned that if the school where you work knew you were Autistic your job would be in jeopardy?

I’d be worried about an employer learning that I was Autistic before I had a chance to prove myself as a teacher, yes. The concerns about my communication problems at this job came in the context of “we love your passion, but…” I had already proven myself, multiple times over, as a good teacher getting excellent results with students who are considered difficult. Afterward, I could see I had to re-prove myself because the words of my NT (neurotypical) paraprofessionals (sometimes not just in the area of classroom communication) carried more weight than mine did. I have reason to believe we’ve gotten past that now, but it lingers in the back of my mind. I know I have to work harder and sometimes that makes me mad. Luckily, I have an administration and paraprofessionals who support me in the work I do and who respect that I am approaching it from an Autistic perspective (even if they don’t always understand that perspective.) I haven’t always been that lucky, and I am continuously grateful for it.

You say, “with the right accommodations..” can you give an example of a couple that are helpful?

Using written communication when possible. This frees me up to only address questions that need to be addressed, which is means I am more likely to be clearer because I can devote the needed resources to perspective taking and processing time. Regular meetings. I don’t pick up on things incidentally unless I’m working hard to pay attention to everything that is going on. That’s impossible when your class is spread between multiple locations. Regular meetings give me a chance to make sure we’re all on the same page at the end of every day and put out any fires before they get out of hand. However, the effectiveness of these meetings is predicated on….

Direct communication from staff. This is quite possibly the hardest accommodation to get and the most important. I ask everyone I work with to be direct with me and everyone says they will. But saying and doing are not the same thing. Most NTs find being as direct as I need them to be as impossible as I find reading their non-verbal language. It’s a real communication gap. I’m incredibly fortunate that I have a para that can bridge the gap. Some of my new paras are starting to learn as well, and I’m starting to learn to read their individual cues. Translation is never as good as reading the original, but we get by.

Having communication support people I can turn to. I have 2 coworkers I can trust to run things by when I’m concerned about how I’m coming across or not sure if I missed a cue from someone else. This doesn’t help, of course, when I’m oblivious to the fact that there was something I should be concerned about in the first place, but it reduces the pool of potential landmines, at least. Also, these are people who can listen for what I’m not hearing on the rumour mill (because I’ll never hear it) and potentially warn me of landmines I’m not aware of. They’ve definitely saved me from several potential disasters already this year.

What are the most common misperceptions you face in trying to teach this population?

Top five misconceptions held by administrators, paraprofessionals, parents, and community members that make my job harder:

That my students cannot possibly be capable of having control over (or a meaningful say in) what will happen with their lives.
That the fact that most of my students may never be fully independent (living alone, working full-time) means that we should not bother teaching them community living and vocational skills.
That my students are unpredictable or dangerous.
That a student who may exhibit challenging behavior in the school environment shouldn’t be allowed in the community because he might exhibit the same challenging behavior. (This one really makes me angry, because it doesn’t teach the kid anything useful. Give me appropriate staffing to handle the behavior; don’t penalize the kid.)
That my students should be pitied.

Have you been surprised by any child’s ability?

Have I have taught a student who had more skills than their assessments claimed? Absolutely. Have I ever had a student make more progress in a year than I anticipated and had to amend the IEP part way through? I love it when that happens! Have I ever taught a student who may not have a lot of skills that can be formally assessed, but who enriched my classroom in so many other ways? All the time. I don’t like the word “surprised” – it’s an autism thing, I guess.

How do you deal with self-injurious behavior?

Behavior does not occur in a vacuum and all behavior is communication. SIB (self-injurious behavior) usually has a sensory component, but a FBA (functional behavior assessment) will give clearer answers. We need to look at the environment, the student’s communication strategies, and antecedents and consequences. What is the cause of the stress? How can we teach the student to deal with it more effectively? Generally, positive behavior supports are most effective, but they have to be individualized in order to be effective. What is reinforcing to one student may be aversive to another. Behavior does not occur in a vacuum, and we cannot try to treat it in one.

Can you describe some of your own sensory issues and how they impact your life and work?

I only recently really mastered reliable daily living skill routines. Showering was a difficult sensory experience for me for years. I still have trouble with toothbrushing and flossing, but I’m working on it. I eat pretty bland foods (though, due to food allergies, my diet is both more varied and more monotonous than average) because I don’t care much for significant smells or tastes. I’ve gotten more tolerant of different clothing textures than I was when I was younger. I still freak out at certain textures, but my repertoire has expanded significantly from the “cotton/poly blend only” I wore when I was younger.

At work, I’m in control over the visual environment, since I’m the classroom teacher. So I keep it pretty visually quiet, both for my own sake and that of my students. Any conversations go out of the room, which really helps all of us focus. My para knows to ignore when I’m self-talking, which is my primary self-calming strategy (I try to take that out of the room too, when I can.) I stim when I need to. So do my students. I don’t see that (the stimming) as particularly impacting our work. I bring figits or sit on the floor during meetings (I sit in the back so it’s not disruptive.)

In previous years, when I was trying to pass and having more communication problems, I needed more sensory breaks and did a lot more self-talk (which in turn cased more communication problems.) Now that I’m not trying to pass, I’m more comfortable and less stressed, which means I’m generally more sensory regulated – and if I’m not, dealing with it is no big deal.

Are there specific things you suggest schools can do to help their students?

I think a lot of schools do the first half of this puzzle really well. They have proactive sensory programs: do this activity after this interval for this amount of time. And they have reactive programs: if you see this behavior, offer these choices for this amount of time. The good ones have a mixture of the two. Where the programs tend to miss the mark is in taking it to the next level: teaching the student to recognize when their sensory system is starting to become disregulated and what to do about it. There are some good programs out there for teaching this skill: The Alert Program(TM) is probably the most popular. I’m a fan, personally, of the Incredible 5-Point Scale, because the students can apply it to more than just their sensory system and because it has a more flexible metaphor (colors, numbers, can use pictures) and it ties into emotional regulation and understanding.

What is your opinion regarding stimming?

I stim. My students stim. I won’t stop a student from stimming. My para (the only NT in the room, poor guy) frequently points out that everyone stims, it’s just that society has declared NT stims socially acceptable and autistic stims unacceptable. That said, there are also students who demonstrate self-stimulatory behaviors that are not self-calming but rather a precursor to or the beginnings of further stressed or out of control behavior. It is extremely important to know your student and to know the difference between these two types of behaviors. In one situation, the student is using their own coping strategies to de-stress, and in the other the student is indicating the beginning of losing control, and the environment or stressors needs to be addressed to prevent further escalation.

Have you ever witnessed treatment of a student that you objected?

I’d love to say “no,” but yes, I have. Most of the time it’s things like not giving enough wait time and over-prompting. I get incredibly frustrated by the way that students who are not socially engaging, especially if they have challenging behaviors, tend to get left out in favor of the “easier” kids. But also, yes, I’ve seen what you’re really asking about. I’ve seen students physically moved or restrained when they shouldn’t have been. I’m trained in the use of physical restraint, and yes, I’ve had to use it. Do I like it? No. Is it ever my preference to use it? No. Will I use it as a last resort to keep students safe? Absolutely. And I would 100x prefer to be called in and asked to do so then to have people who are untrained and don’t know what they are doing try to make do. That way only leads to injury, trauma, and possibly death. And I’m not afraid to call it like I see it. I’ve reported coworkers to administration and when needed I’ve filed 51a reports (reports of abuse or neglect.) There are certain benefits to having an overarching sense of right and fair and not feeling bound by social conventions, at least where the students rights and safety are concerned.

Is there any methodology that you prefer and why is that?

The short answer to this question is no. I am very wary of any program that says that a particular methodology is right for all students with diagnosis x. I don’t believe that to be true. The role of the teacher is to be familiar with the breadth of instructional tools that are out there and to find (or adapt) the right tool for the individual student to learn the specific skill. For one student, that might be Discrete Trial Training to learn to attend to directions given in ASL. For another student, that may be a phonics curriculum to learn to read. A third student might be learning vocabulary in the natural context of a community work placement. The one thing that all of these methods have in common is data. I need reliable data taken daily on student achievement to know if the methodology is effective and the student is making progress, or if the instructional method needs to be changed. There is no right or wrong method; I don’t even believe there is a best method. The question is whether the method being used is effectively teaching the student the desired skill, and there is only one way to answer that question: data.

Are there any methodologies that you believe are harmful?

Aversives, repeated use of any form of punishment (including time outs,) restraint used as a programming tool as opposed to an emergency procedure. If you’re doing it on a regular basis, something is wrong.

How do you work with a curriculum given your student’s disparate needs?

The short answer is good staffing ratios and competent paras. Also, using the principles of Universal Design for Learning. By differentiating how I engage each student, and with paraprofessional support for behavior and data-taking, I can have three students engaged in a group setting. I can have a fourth student, with additional paraprofessional support, engaging in the same material with us and connecting to the group as able. If you’re counting, that’s 3 staff and 4 students. I’ve just described to you what my classroom looks like most days.

In an ideal world where Autism carried no stigma and you were able to be open about being Autistic, are there specific things that would allow you to do your job better?

I would like to be able to work with my students on understanding Autistic culture and the Autism community. My school does very well teaching our Deaf students about Deaf Culture and their Deaf identity. I believe we could do the same for the Autistic students. I would like to make that happen, and I know that no one else will lead it, but it would require being open about being Autistic and I’m not ready for that yet. I trust my administration and those I’ve told, but I am not comfortable working with the rest of my co-workers as an Autistic person, which I’d need to do in order to make that happen for these students. It’s something I want to do, but not yet. One day, I hope.

What do you advise people who are thinking about entering the field of special education? Is there anything you wish you’d known when you were just starting out?

Work with kids with disabilities before you go into the schools. Work at multiple schools (or with kids from multiple programs) before you start teaching. One of the downsides to being in the schools, especially since most teachers work as paraprofessionals while they get their degree, is that you work with one student, or one group of students, for years. There is frequently only one or two special education classrooms in the building, so there aren’t a lot of models to observe. I have had too many experiences of people singing the praises of teachers I know to be mediocre at best, because they have no standard to compare them to. See as many different students and teachers as you can before you settle on a specific subset of the population, a school, and a classroom where you want to work. Most importantly, spend time working with typically developing children. You’ll need that reference to fall back on so you can recognize what’s typical age-appropriate nonsense and what is actually behavior that needs to be addressed. We tend to acquire tunnel vision in special education; make sure you don’t put the blinders on until you have to.

What do you advise parents look for of non-speaking children seeking a good school?

Without knowing the specific student or her goals, it is impossible for me to say what program is best. I can tell you what I look for in a school where I would consider working. The one thing that sends up red flags and makes me stay far away is a school that believes there is one right method to teach all students. Simply put, there isn’t. Beyond that, I look for evidence that the people there know how to use picture supports and both high and low tech communication supports, not just for schedules but integrated into everyday activity: academics, leisure/social time, specials, lunch, etc. For an older student, I look for evidence of functional skills and community based learning, not just using pictures to represent and role-play functional community activities, but actually getting out into the school and local community and learning the skills in the real environment.

If you could create a “dream school” what would it be like?

My dream school would have the physical environment, educational methodologies, peers, and teachers and paras with appropriate training and ratios to give each student access to both the general educational curriculum and any related services she needs to be successful as an adult: whatever that looks like for each individual student. My dream school is not one school, but a range of options for every student so that the right option is always available. That option would naturally change over time as the child grows and her needs change, and no one would question the need for that change.

Have you had parents or other staff question the competence of a child in your class?

I had a former administrator tell me a student didn’t matter because his family would take care of him after graduation and to focus all my attention and resources on another student who, she said, actually had a chance of being fully independent. I basically ignored her. They are now both working in the community with support.

Have you had a parent question their child’s competence?

Not directly, but I certainly have known parents who have underestimated their child’s academic or independence skills.

How have you dealt with that?

I don’t judge, because I can’t. I don’t walk in their shoes. I only see their child at school. I only know what their child does in one environment and I understand well that students will present differently in different environments. I will encourage bridging to home; I will provide support; I will provide information and data. But I will not judge, because I do not, I cannot, really know.

17 Comments

Posted in Autism, Education, teaching

Tagged Autism, autism spectrum, Education, school, Special Education, Stimming, teaching

Progress

Posted on December 14, 2011 by arianezurcher | 4 comments

A couple times a year we are called into Emma’s school to meet with her teachers to go over her progress. There were a couple of things that stood out this morning during our conference. The first was a video showing Emma playing with another child in her class. She says his name and the two of them hug each other and laugh. This goes on for quite some time, with Emma saying things like – “Hi Charlie! Say hi.” Then she waits and when Charlie, who is nonverbal, doesn’t respond, she prompts him by saying, “Say hi Emma.” She takes his face and gently turns it so he’s looking at her. Then he says, “Hi Emma!” and they both start laughing . It is one of the most uplifting videos I have ever seen. In another video she negotiates with a different child something that she wants to do with the child and her therapist, but the other child at first does not want Emma to join them. They go back and forth and eventually Emma says, “Please, please I want to go together.” The other child relents and the video shows Emma, the other child and the therapist dancing down the stairs with Emma singing, “Together! Together!” It is adorable and shows tremendous progress.

For more on Emma’s journey through a childhood of autism, go to: www.Emma’s Hope Book

4 Comments

Posted in Autism, friendship, Rebecca School

Tagged Autism, autism & parenting, autistic, school

The School Bus

Posted on November 24, 2010 by arianezurcher | Leave a comment

We received a call yesterday from Emma’s school saying the bus driver had yelled at Emma in front of the other children when she was getting off the bus. The driver claimed Emma had spit in her face. Richard and I were incredulous as neither of us have ever seen Emma spit nor did I think Emma was physically capable of projecting a pool of saliva from her mouth at a target, human or otherwise.
When we asked Emma what happened on the bus, she replied, “Emma so sad. You make Emma cry. Emma want to get off the bus.”
“Why did you want to get off the bus, Em?”
“Lady. You have to ask the lady. Lady, can I get off the bus?” Emma said while wrapping a strand of hair around and around her finger.
“What did the lady say?”
“NO! Emma sad.”
“But Em, what happened?”
“Emma go to gymnastics?” She looked at me and nodded her head.
“Yes, Sweetie. You’re going to gymnastics this afternoon,” I said.
By the time the bus arrived, Richard and I were no clearer on the actual events than before. As with many autistic children, their (in)ability to speak is much more than a language delay. The language they have is often garbled, confused and the thinking difficult, if impossible to follow. Emma’s reference to gymnastics in answer to my request for clarification as to the events on the bus suggested she feared she wouldn’t be able to go to gymnastics as a result. She had done something wrong, someone was angry, her beloved gymnastics would be taken away. Even after I reassured her she would be attending gymnastics, she continued to ask several more times.
Last night Emma woke me at 1:47AM screaming, “Mommy! Mommy! Mommy come!”
When I went into her room I told her if she continued to scream we would not let her go to gymnastics, something she’s been looking forward to for several days. It does make sense how she might conclude gymnastics was up for grabs, given the upset on the bus.
When the bus arrived we asked what happened.
The driver leaned forward and said, “She spit in my face. I told her that wasn’t okay.”
“She spit in your face?” I repeated.
“Yeah. In my face. She sits there spitting on the floor and then blames another kid, but it’s not him that’s doing it, it’s her. She’s the one who’s spitting,” the driver said.
“It’s hard for us to believe this, as we’ve never seen her spit at anyone,” Richard replied.
“Yeah, well I think she picked it up from the other kid, cause he use to spit, but now she does more than him and blames him.”
“Okay. Then what happened?”
“I told her – it’s not okay. You can’t do that,” the driver said. “She went like this,” the driver took her hand put it to her mouth and flicked out with her fingers. “She spit at me and I told her you can’t do that.”
“Okay, do you mind if I get on the bus to talk to her?” I asked.
The bus driver nodded her head.
“Em, you can’t spit. Do you know what that means?” I asked.
Emma stared at me and said, “You have to ask Mommy.”
“No Em. You just can’t spit. You have to keep your fingers out of your mouth. You have to keep your gum in your mouth. Okay?”
“Okay,” Emma answered.
“She doesn’t listen,” the bus matron said.
“It’s not that she doesn’t listen, it’s that she doesn’t understand what’s being said to her,” I began.
“Yeah, but she doesn’t listen,” the matron said, shaking her head and staring at Emma who was now seated directly behind the driver with her seat belt buckled.
“She doesn’t understand what’s being said to her, it’s different than not listening,” I said.
“No I know. I understand these kid’s situation. I’ve been driving kids like this for a long time,” the driver said. The matron stood by shaking her head. As all of this was going on one of the children kept getting up from her seat and standing in the aisle.
“Logan! Sit back down!” the driver said, loudly.
“Logan! Sit down!” Emma parroted.
“She doesn’t understand why you’re angry with her. She doesn’t understand what it means to spit at someone,” I said. “Yelling at her won’t make her understand any better.”
“Oh no. I don’t yell. I never yelled at her,” the driver said. “I just told her like this,” she then spoke in a kind voice, “You can’t do that, it’s not okay.”
Richard and I looked at one another. “Okay, well please tell us if anything like this happens again.”
“She’ll have a new driver after the holiday,” the driver informed us. “But I know her, she’s a friend of mine, I’ll tell her what’s going on.”
By the time the bus left with Emma inside it, Richard and I stood together and watched it go. I felt a familiar constriction in my chest. How can we know what really happened? Our daughter is incapable of telling us her version of what occurred, the school wasn’t on the bus until after the “incident” happened, though they did witness the driver shouting at Emma. The accounts from the driver and the bus matron, who appear to have little if any knowledge of autism and certainly no training in autism, are all we have.

Tag Archives: school

Methods of Communication – My Research Paper

Have Your Voice Heard!

Can Speech Challenged Students Get an Appropriate Education?

Typing to Communicate & Busy Work

Insights From a Non-Talker: Emma’s Conversation With A Friend

And Then Suddenly Life Changes

Emma’s Letter to Her Teachers

A Witness to Her Own IEP Meeting

An Interview With an Autistic Teacher Who Teaches Autistic Students

Progress

The School Bus

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