Tag Archives: non-speaking

Methods of Communication – My Research Paper

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

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.

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Photo by Pete Thompson

 

Have Your Voice Heard!

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

emmaschool

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

 

Can Speech Challenged Students Get an Appropriate Education?

     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?

I am Emma

“What is your name?” someone might ask.  It’s a simple question, but when I try to make the sounds that form my name, other words push and shove their way forward.  Instead, “you may not spit,” or “Rosie’s not here!” are examples of seemingly random nonsensical, declarations that come out of my mouth.  I call these utterances my “mouth words.”  They could be seen as traitors, belligerent bullies who seek the spotlight, but they are not.  My mouth words are funny to me, but misunderstood by others. My typed words are hard for me, but understood by many.  Mouth words are witty accomplices to a mind that speaks a different language entirely.  There are no words, but instead a beautiful environment where feelings, sensations, colors and sounds coexist.  I often think if all humans could experience the world in hi-res, technicolor, surround sound as I do, everyone would be happier.  I have come to understand that my mind is not like most people’s.

I am Autistic.

Many people believe autism describes a simple mind, and that someone like me has no understanding or awareness of my surroundings.  My hearing is excellent.  Things like the honking noise made by impatient drivers who think the sound of their horn will miraculously clear the road ahead is so intense I can become lost in the key of their horn.  I am compelled to imitate each one I hear.  Car horns I can respond to cheerfully.  It’s the same with light.  The harshness coupled with bloated heavy air is so intense I become overwhelmed.  I wonder if I am too aware of my surroundings.

Some people have suggested I am unable to feel empathy and assume I have no desire for human interaction and friendship.  I feel people’s intentions and feelings so intensely it can be difficult to concentrate.  I am too sensitive to other people’s sadness; it is akin to drowning or like being smothered by the weight of damp earth covering your entire body, filling your eyes, mouth and ears.  Piercing shards of past and present pain cause me to turn away or make faces or laugh outloud to lessen the weightiness.  There is no lack of empathy, but rather an unmanageable abundance that defies my best intentions.  It is during these moments that I flounder because society expects less of me and not more.  I listen to the words spoken by people who are crying or shouting.  They say things like, “I’m okay,” through tears or “No, I’m not angry,” as they clench their fists,  but their words are in direct conflict with their actions.

Others believe that I do not have feelings at all.  How do you defend yourself against such accusations?  Trying to convince those who believe I’m an empty shell is impossible.  Adding to this is my inability to use spoken language as expected.  “No, you cannot put putty in your mouth!” in answer to “what’s wrong with that girl who is crying in the corner?” does not help change the minds of those who believe me incompetent and without feelings.

If I tell my mouth to behave and demand that certain words come out, stress barks and growls, jarring my mind so that it folds in on itself and favorite scripts begin.  “You cannot throw your lunchbox at Kevin!” or “Maddie’s not here anymore” helps me control the waves of anxiety that press up against me.  Hearing my voice keeps the dark, piercing void of nothingness from engulfing me.  Clenching down on my forearm as hard as I can is another way to control the tidal wave of stress.  A complete set of teeth marks embedded into my skin might interest those in the field of dentistry, but for most people witnessing, horror probably best describes their response.

Some find self injury baffling, even terrifying and something that must be stopped at all costs, even if this means far more painful interventions inflicted by others than anything I could do to myself.  I see it as a way to care for and acknowledge the overwhelming onslaught of unruly feelings.  This idea is not embraced by “autism experts” who use words like “behaviors”, “defiant”, and “oppositional” to defend the use of isolation rooms, restraints and even electric shocks for people like me.  It seems abuse by others to prevent self injury is permitted, even applauded, though the logic is lost on me.  When my mind is caught in a downward spiral I need calm reassurance.  My frustration often expressed in screaming, repetitive scripts grind down the patience of those witnessing.  My screams threaten their kindness, I know, but I cannot stop once begun and pounding terror is all that remains.  Only the dedicated few talk of love during my episodes of furious stress and suffering.  Their love is rejuvenate and restores my faith in this awkward world.

I am exuberant, overflowing with energy and love music.  I’d rather gallop than walk, bounce than sit quietly.  I’m happiest with high volume, intense beats, jumping, arms flailing, pounding bass, total darkness or bright stage lights and a microphone in hand.  I want people to hear me.  I am as versed in making silly faces as I am in my favorite songs and my neurology.  My mind is lightening fast, hungry, logical.  I’m a seeker, determined, a lover of laughter in a body trying to keep up.  It can’t, but I’ll keep trying.

Showing kindness toward those who are different and embracing our imperfections as proof of our humanness is the remedy for fear.  Love is a small word, but allow yourself to be consumed by the sensation and the world becomes a place of infinite possibility.  I want my hard won words to give hope and inspire people to change how they think about autism and someone like me.

“What’s your name?” people ask.

My name is Emma.

2015.10.06_Emma_PT_272Photograph: Pete Thompson Photo

A Language I am Fluent in

Gazing hungrily at the docking station that cradles my iPhone, I can already hear in my head the first song I will play.

It is a charge surging through my body.

It’s electric.

It’s stars that shower down.

It is invigorating, a power drink transforming lethargy into intensity.

Pounding beats, it’s Jessie’s Bang Bang, Lily’s Smile, Beyoncé’s Dangerously in Love and the crazy pre-rap rap of the Talking Heads.

It tastes like an explosion of chocolate hazelnut, a glop of Nutella hitting your tongue before you’ve even swallowed.

Understanding the notes is a full body experience.  It’s a world where I can be me, unedited, pure and perfect.

This is a language I am fluent in.

*Emma*

Poetry is Ballet in Words

Poetry is ballet in words.

Graceful, agile words, yawning and leaping while whispering and shouting all at once.

The ending is the beginning

like water colors

I had no access to any of it

no way to share the beauty

alone

the dance

with no one to answer or interact

I was alone in the intense happiness

but now

I can choose to dance with others

when I want.

Poetry is Ballet in Words

“Let’s Pretend You Are the Autistic One”

(A note on Emma’s post.  Because this is a fictitious dialogue that Emma wrote, for clarity’s sake, I asked her if it was okay to put the Autistic person’s words and thoughts in italics and the non autistic’s words in quotation marks.  She agreed.  My part of the conversation is in parentheses.)

For today’s blog post, let’s pretend you are the Autistic one and I should be the non autistic.

“Oh dear!  Why are you hurting yourself?”

(I asked Emma whether the Autistic person could use spoken language to speak.)

You can’t speak and I will talk for both of us, it will be more authentic that way.  Maybe you talk, but not with the words that best describe what’s in your mind.

“I don’t understand, do you want to go outside?  Why are you biting yourself?  Does that mean you do?”

You are thinking about expectations and how hitting yourself takes away the pain of not being understood and unable to say the words that will help.

“Here!  We will go outside.  It’s a beautiful day.”

I don’t want to go outside.  I want to read a story.

Pointless bottling emotions of endless frustration cause words to wither in the recesses of the mind.  Biting becomes the only way to stay rooted, but causes everyone watching to respond in loud voices of angry fear.  Until there is understanding, you are alone in the terrible confusion of other people’s voices that are louder than yours.

Caution is needed whenever we decide we know what is in the mind of another human being.

Emma's Ceramic Dish of Hope

Ceramic Dish of Hope ~ Made by Emma

“Outside Looking In” ~ By Emma

Outside looking in on a world with a  different reality.

There is room for all.

Benign feelings contradict human thoughts about survival.

We treat others with care and feel the joy that comes with that.  We treat others harshly and then pain is felt by both.

Problems arise when people take pleasure in other’s pain.  Words cause joy, but also can cause pain.

Better to sing and dance!

This is what Emma wrote this morning in answer to my question, “What do you want to blog about this morning?”

We have been studying gene mutation, evolution, Darwin and how species adapt to their environment.  We have also just finished reading Romeo and Juliet.  I see the influence of all of these topics as well as Emma’s own unique and exquisitely compassionate take on this world and life.

Emma's Bowl made in ceramics

Emma’s Bowl made in ceramics with cookie cutters and then painted.

The Impact of Believing in Incapability

Ariane:  What should we start our day with?  German, a blog post, general writing, fiction, poetry or something else?

Emma:  Just start with blog post.

A:  What would you like to post about this morning?

Emma:  How about the topic:  Knowing many things, but having no one believe you are able to understand.

Ariane:  This is a great topic!  Do you want me to say anything or keep quiet so you can continue?

Emma:  I will continue.

For many years this was the title of my life.  It was long hours bloated with mindless screams of nonsensical searing memory words that no one understood the significance of.  The feeling of pleased joy when another believes, and then astounds the non believers by interacting with their knowing, is like beams of brilliant light shouting through the dreary darkness.  Diving heavy waters it cannot be described, but the word coming closest is love, and to all who cannot believe in what they do not understand, try to be silent for years without words meaning what you have been taught.  This might help the misunderstood.

Ariane:  Wow, Emma, that’s really beautiful.  What else?

Emma:  You can add commentary now.

Ariane here adding commentary, which is a little like being asked to perform after The Rolling Stones just rocked the house…

I am always struck by Emma’s words.  It is the force with which she writes and the compelling word choices she makes that convey a depth of emotion, an intensity and complexity of feelings, as well as insights that make me stop and reread her words over and over.  This paragraph took about forty-five minutes for her to write, not because she edited or had to go back and rewrite, but because that is how long it took for her finger to locate the correct key one letter at a time.

“Nonsensical searing memory words…”  I so want to know more about this.  Does she mean the often repeated sentences that are about the past, the words I once assumed were simply memories thrusting themselves front and center?  A kind of Möbius strip of thought, like an infinity symbol wrapping around and around itself?  I have learned to reside in the unknowing, the discomfort of being unsure, the scratchy realization that I cannot ever truly know, though I can make guesses and then ask if these are correct.  I no longer assume words spoken are meaningless or simply memories or are scripts that are being blurted out compulsively and without thought.  I’ve written about these bridges before ‘here‘.  Those words and sentences that are full of meaning, but whose meaning is not immediately apparent to me upon first hearing.

“… that no one understood the significance of.”  I will ask her about this later.  She used the past tense and that makes me hopeful that we are not continuing this kind of awful misunderstanding.  “…beams of brilliant light shouting through the dreary darkness.”  Who among us does not want that feeling for those we love?  Is this not what love is?  Connection with another?

“… to all who cannot believe in what they do not understand, try to be silent for years without words meaning what you have been taught.  This might help the misunderstood.”

Those who think being silent for an hour or two will give them any real insight into what it is like to not have words readily available, either by writing or speaking, cannot possibly understand.  We must shift our thinking beyond the hour or two, beyond the day, beyond a month, but instead try years.  Years of opening your mouth to speak, but having words tumble forth that are not what you intended, or saying something you intend only to have it misunderstood, or repeating a memory because it conveys so much that is relevant to the NOW only to be asked to discuss more about that particular memory and not what it signifies, it’s deeper meaning.  To say words, to write words only to be told you do not understand metaphor.  To reach out in vain to connect with a world that continually turns its back or mouths that smile with faces flooded with fear, or superiority or judgement or intolerance or disgust.

End of commentary.

Ariane:  What sort of image should we put with this post?

Emma:  How about a photo of the two of us.  Daddy can take it.

Ariane: I was thinking we could title this post: “Knowing Many Things” and the Impact of Disbelief From Others.  What do you think?

Emma:  No.

Ariane:  Okay.  What would you like the title to be?

Emma:  The Impact of Believing in Incapability

February 3, 2015

February 3, 2015

Friendships

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

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

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

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

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

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

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

E:  How was your thanksgiving?

J:  Good food I like, how about yours?

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

(Emma kept saying out loud “JoeyAllison”)

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

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

J:   Knowing you make an effort helps, thanks.

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

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

Friendship

Autism ≠ Developmental Delay

There were few things that led us more astray than the idea of autism being a developmental delay.  Last week Emma wrote, “Autism is not a developmental delay, rather it is a different road entirely.” I was reminded of this last night as I watched a video from 2006 when we took Emma, who was then four-years old, to meet the late Stanley Greenspan.  (This post is not about Stanley Greenspan or his method.  His name is brought up only because of the video that inspired this post.)

Watching that video last night was brutal.  The private hell of regret is a cruel place to linger.  Emma described her experience of watching the video last night as “wading into the marsh of worry and fear, but quiet love was there even when the days were dark.”   In typical Emma-fashion she generously and compassionately reminded me that it was not all an unmitigated hell.  Unable to communicate her complex and insightful thoughts with spoken language, she languished for years in an abyss of being constantly underestimated and misunderstood.  Because people assumed  she spoke what she intended and meant, she was penalized for the words she managed to utter.  “Do you want to go fast or slow?”  “Do you want to stop or go?”  “Do you want to open the door or close it?”

Again and again the video shows us making assumptions about her actions.  We assume she has no interest in engaging.  We assume she doesn’t want to spend time with us.  We assume she is “in her own world.”  We make assumptions and we behave according to those mistaken beliefs.  We believed each word was a milestone, paving the way for more language acquisition.  We believed it made sense.  Lay the foundation, create a strong base of words for more to follow…  Use your words, use your words, use your words…

The assumption that her spoken language represented her comprehension and intelligence and therefore we needed to push for more was never disputed.  This idea of a developmental delay bled into every single aspect of her being.  It was believed that her speech was delayed, as were her fine and gross motor skills.  Therapies were structured around this concept.  All held the promise that if we did intensive, ongoing therapy she would one day, catch up, particularly if we did this during that brief window of opportunity, before she turned three, and then four, maybe if we were lucky, we hoped, the window would still remain open at five, what about six?  At the time we didn’t question any of this.  Had we known then that she probably already knew how to read, had we understood that what she said, was not representative of her intelligence or indicative of what she understood or knew, if we’d known that autism was not a developmental delay, but rather a “different road entirely”, it would have changed the path we proceeded down.

As it was, we did not know.  We listened to the many professionals we consulted.  Well meaning professionals, often incredibly kind and thoughtful, a few even brilliant, but none, not a single one ever mentioned the concept of a body/mind disconnect or how that might apply to our daughter.  It never once occurred to me that maybe, just maybe what she said was not what she intended to say.  It did not enter my mind that when she didn’t answer a question it was because she knew the answer, but couldn’t say the words, this thought, this idea was not something I even knew to consider.  We would learn about all of this much, much later and when we did hear these ideas, it came from the most unexpected source – our own daughter, Emma.  Not only was she the person we least expected to enlighten us, but she did so, not through spoken language, but by typing.  Eight years ago, I don’t know that I would have believed any of this, let alone that Emma would write about all of this in such detail, as she has in these posts:

Emma’s Presentation

Tomorrow’s Presentation

“Rethinking Your Beliefs About Autism”

When the Body Does not Obey the Mind

Parents who are just getting a diagnosis for their young children have so many more resources available to them than we had in 2004.  The most important being, blogs written by Autistic people of all ages, non-speakers, speakers, semi-speakers and everyone in between.  It is the writings and friendships I now am fortunate enough to enjoy, that have helped me more than anything else.  One day I hope the professionals parents are introduced to will be Autistic professionals.

My friend Bridget of the blog, It’s Bridget’s Word said to me, “The ‘delay’ concept is a trap. Development is not linear no matter how many folk whose livelihood depends on timetables try to make it.”

Cynthia Kim, author of Nerdy, Shy and Socially Inappropriate ,  I Think I Might be Autistic, the blog Musings of An Aspie and owner of StimTastic said, “That waiting to catch up feeling is so insidious and one that I subconsciously lived with for a long time.”

My friend Ibby, educator and author of the blog, Tiny Grace Notes, who is like family to me, said, “Speaking now as an education professor: “developmental delay” is an actual category under the IDEA which is not allowed to be used after the age of eight. The purpose of it was to give people with conditions in which they might “catch up” a chance to do so, and the doctors more time to pinpoint their diagnostics if not. If you look at the lists for most states of what conditions might cause “developmental delay” to be diagnosed before age 5 (as it has to be in most states) it makes some sense as being this sort of thing. Autism is not a “delay” but a condition causing atypical (as opposed to delayed but still on the same track of typical) development.”

Ibby added, “In short, this is not only dangerous and unhelpful but technically ignorant even if separated from the consequences.”

So what are the consequences of believing autism is a developmental delay?

Well, for us it meant constantly comparing our daughter to her non autistic peers (using their development, and not hers, as the ideal).  It meant pursuing all kinds of therapies that never questioned the push for spoken language.  It meant not considering AAC devices, because she “had language.”  It meant encouraging my daughter to “use your words.”  It meant asking her to focus on things that made it impossible for her to concentrate on what was being taught.  It meant looking at her through the lens of deficits, so much so that they became blinders shutting out everything else.

There are so many things Emma can do, that I cannot.  Her mind, as she so beautifully described it, is a “wonder, channel changing, multi-screened on fast forward” thing of beauty that defies all limits placed upon it.  My daughter amazes me every, single day.  As always, Emma said it best and it bears repeating, “Autism is not a developmental delay, rather it is a different road entirely” and what an amazing road it is!

Emma - 2006

Emma – 2006

Ideas, Insights and Discovery

This morning I had an idea, which turned out to be something I thought was a good idea, only to find that what might seem like a good idea to me, is not necessarily a good idea to my daughter, and the reasons why were not something that ever occurred to me.

I am continually surprised by the insights Emma, so patiently, gives me and am reminded again and again that my assumptions limit my views.  Thank you Emma for giving me permission to post our conversation.

Ariane:  I thought we could begin the day by discussing who you might like to interview and about what topic?

Emma:  Is the way here, thinking, knowing, and asking about another, helpful?

Ariane:  I think it’s interesting and certainly can be helpful to get to know other people’s experiences of life.  Asking is a great way to understand another’s perspective.  Who would you like to interview?

Emma: Using questions to sing truths meaningfully speaks to all.

Ariane:  That’s so true!  Music is a universal language that can transcend words.

Emma:  What did those we cannot ask, say?

Ariane:  Who are you thinking of, Emma?

Emma:  Those who cannot speak and have no one who believes in their ability to communicate in other ways.

Ariane:  Here’s the thing though, we can ask.  We may not get an answer we understand, but we can still ask and I think that’s the beginning, right?  We ask anyway and then do everything we can to understand the answer, even if it’s not in spoken language or in ways we understand at first.

Emma:  Understanding that all human beings want connection is natural and fundamentally human.

Ariane:  I agree.  So Em, what was it like before you were able to type?

Emma:  Days bloated with tears, frustration, anxiety and raging questions that only made daily living harder.

Ariane:  Ah…  can you tell me more?

Emma:  Thinking and wanting to ask questions, but knowing the words would come out wrong was too painful, best to silence asking than to be in the smothering feelings of tremendous frustration.

Ariane:  I imagine interviewing someone must be hard, even now that you can type.  Would you say that’s true?

Emma:  Sometimes ease is not an option.

Ariane:  You do not need to ask any questions unless you choose to, Emma, I wasn’t considering any of this when I first introduced the idea.  I’m sorry.  What else should we do right now?

Emma:  How about a conversation using music and no words?

Ariane:  Great idea!

Some of the instruments Emma chose for us to use in our "conversation."

Some of the instruments Emma chose for us to use in our “conversation.”

“Mistaken Beliefs People Have”

I asked Emma what she wanted to write about this afternoon during her writing session.  She typed, “Deconstructing the mistaken beliefs people have.”

I encouraged her to continue and asked what she was thinking of specifically.  She typed, “Mostly what people think they understand there cannot be, when talking about autism, creating lots of bad ideas that attract unoriginal therapies we must put up with.”

“Wow!  Keep going,” I urged.

“Actors playing roles the audience greets with enthusiasm, but an autistic person who doesn’t speak as expected, or at all, is booed off stages throughout the world.”

“Such a great point,” I said.

Emma typed, “The people of this world need to be exposed to difference and then shown compassion for their ignorance and limited thinking.”

She smiled and then typed, “Put it on the blog!”

And so I am.

Austin1

Scripts – A Communication Bridge

Something happened yesterday that was hugely helpful and gave me some staggering new insights.  I’m hoping this might be helpful to others as well…  The details do not matter, so don’t get caught up in them.

Em and I do the same thing every Wednesday morning, we go visit B. whom Emma loves and also types with.  But this time someone else asked to join us and when I asked Emma what she thought, she said out loud, “Yes!”  She said it with a great deal of enthusiasm, as though she liked the idea.  However I have learned to always verify any spoken words with some other type of confirmation so I held my two index fingers up and said, while indicating the left one, “Yes” or, and then indicated the right finger “no”.  Emma repeated “Yes!” and pointed to my left finger.  Satisfied, we joined the third person and made our way up the street.

A few blocks from our destination, Emma began saying out loud, “City tree house.”  This is a place for small children and it has been the cause of a great deal of anxiety.  I could see, by both the expression on her face and her tone that she was becoming increasingly upset.  By the time we arrived at B.’s Emma was really worried, anxious and very unhappy.   I was doing my best to talk to her about city tree house and how it is one of those places that caters to very small children when  Emma sat down next to B and typed, “You did not listen to my words last time.”  I, thinking she was referring to another conversation we’d had the week before asked if she was referring to that conversation, but she said she wasn’t.  She said that she did not want this other person, who was now sitting in the room, there.  The person said not to worry and immediately got up and left the room

After they left I said, “But I asked you before we left Emma, so I’m confused,” Emma then wrote, “If anxiety rises after choices are made then it may be inaccurate.”

What followed was an incredible conversation about how a decision can be made only to realize that it is the wrong one.  When this happens, go to scripts that are based in memories of anxiety begin.  As we talked I suddenly remembered a conversation I had several years ago with my friend Ibby.  This was a time before Emma was typing with us and I was asking Ibby for her thoughts about some of the things Emma would say out loud that I found baffling.  Ibby told me that I mustn’t try to do a word for word translation, but needed to feel the emotion behind the words and try to understand the context that way.  I remember being utterly confused by Ibby’s explanation and suggestion, but now, today, I get it, in a way I have not understood until now.

I asked Emma to verify all of this before writing about it and she affirmed that I am understanding it correctly.  In the past I would have gotten all tangled up in the specifics of what she was saying.  I would have sought to reassure her about whatever it was.  But now, I understand that these scripts can serve as so much  more.  They can serve another purpose.  They are less about the words spoken and more about the emotions that are attached to them.  So when Em is happy she will often speak of some of her favorite people.  She might reference something that happened more than eight years ago, but that made her feel safe, or a specific time when she was really happy.  I’ve always thought these memories were nothing more than that.  Memories she enjoyed voicing out loud, but nothing more.  But now.  Now, from what she typed, I understand that they are much, much more than random memories.  They are a kind of communication bridge.  A way of saying, I’m happy!  Or I’m feeling really sad, or this is causing me terrible anxiety, but it’s more than just a vague statement about a feeling, it’s actually a brilliant way of trying to convey much more.  It’s a way to communicate a whole series of feelings.

The more I think about the conversation we had, the more I feel I am understanding.  Those scripts are like flashbacks in a movie.  They give us a tremendous amount of information and are symbolic of so much.

Emma ~ 2012

Emma ~ 2012 

Cynthia Kim of Musings of an Aspie wrote about scripting too – Echolalia and Scripting:  Straddling the Border of Functional Language (funnily enough Cynthia and I have done this before, written about the exact same topic on the same day!)

The Assumptions We Make

When I first heard the words “presume competence” I had no idea what that meant.  I cobbled together some ideas of what I’d read and thought it meant and did my best to put them into action.  I did a great deal of “acting as if” and reminded myself, when my daughter wandered off in the middle of my explaining something to her, to keep talking anyway.  When she didn’t seem to look at whatever it was I was showing her I pretended that I knew she was taking it all in.  I pretended I believed, even when I didn’t.  And when my energy was depleted I would not place demands on either of us.  If I wasn’t able to take actions that were centered in presuming competence then I tried not to take any actions at all.

In the beginning the best I could do to show a presumption of competence was to read age appropriate books to her.  This was when Emma was eight years old.  I still remember the first book I read that wasn’t considered “young” for her age.  It was a biography of Balto, the Siberian Husky who raced through a blizzard in whiteout conditions delivering a much needed serum saving countless people sick with diphtheria in Alaska.  After Balto, I read a biography of Helen Keller specifically for children and then, because Emma seemed to enjoy it so much, we read the autobiography of Helen Keller, all the Mary Poppins books, followed by The Wizard of Oz, Alice in Wonderland, The Secret Garden, The Tale of Despereaux, Winn Dixie, Bridge to Terabithia,  Little Women and on and on we went.

At first I was unsure whether she was even listening, let alone enjoying any of these books.  But one night as she settled into bed, and when I didn’t pull out a book, Emma sat up and said very clearly and distinctly, “Helen Keller.”  Emma was not typing yet, so I wasn’t completely sure she really wanted me to read Helen Keller or if she was just saying the name because it was what I’d been reading.  I distinctly remember questioning whether she really wanted me to read the book because it interested her or because this was just part of an established routine and then I had a moment of guilt for doubting her.

As I said, Emma wasn’t typing yet, so there was little we could point to that backed up our decision to presume competence.  There was no “evidence” to suggest what we were doing had anything to do with anything other than a hope and a wish.  As presuming competence is not typically done in the general population or at any of the schools she went to, we were definitely doing things differently.  There were times when I doubted what we were doing. There were times I didn’t believe.  There were times I wondered – what if we’re wrong about all of this.  What if what everyone says is true, really is?  What if?  What if?

In the end I just kept coming back to the thought that presuming competence harmed no one, but to not presume competence and to be wrong would do tremendous damage.   As time went on and it became clear just how many mistakes we had made, I became more determined than ever to err on the side of support, encouragement and believing in her rather than the other way around.  It is strange that the focus is so often on all that is challenging, rather than encouraging all that is not.  Often that thought was the only thought that kept me moving forward.  Sometimes one idea, just a single idea is all it takes.

To presume competence became a living amends and a way of life.  At the very least it is something I can do that is not going to add another item to that lengthy list of mistakes made.

Emma and Balto ~ 2010

Emma and Balto ~ 2010