1

Searching for Words: The Writing Process of a Child with High-Functioning Autism

Children are not first and foremost learners; they are first and foremost people living the complexities of their day-to-day lives. (Dyson, 1995, p. 36)

Sam Crossing is a twelve-year-old boy in the eighth grade at a private school in southern California. He is a freckle-faced, blue-eyed redhead, nearly six feet tall and built like a football player. He is also my son. Recently, Sam designed a personal web page; on the page, he described himself as a normal, everyday kid. In many ways, I would tend to agree. He likes riding his bike, playing video games and listening to the Beatles. He plays with friends on the weekends, fights with his little sister and gives me big bear hugs every day when he comes home from school. Normal, everyday stuff. Sams developmental and educational history is another story altogether. This is not to say that, within his own perception, and within the relatively safe haven of his home and family life, his development and his learning have not been accepted as fully normal. Within the realm of schooling and age-segregated classrooms and state-defined, graded curricula, though, the need to define normal is immense and my son sits outside those boundaries. Sam was identified as gifted by our school district at the age of nine. That same year, Sam was also diagnosed with autism. Autism is a neurological disorder that occurs across a spectrum, with what Lorna Wing (1991) refers to as the triad of social, communicative and imaginative impairments ranging in

2 severity from mild to severe. The syndrome also affects movement, sensory response and executive functions such as organization and cognitive flexibility. When autism is paired with normal to above-normal intelligence levels, the diagnosis is often termed Asperger Syndrome (AS) or, as in my sons case, high-functioning autism (HFA). Many of the children with AS and HFA are not placed in special classes, but rather attend class with their neurotypical peers and a significant number of them attend college. Their social challenges are often easily noticeable, however they also often struggle significantly with the academic demands of the classroom. This struggle almost always extends to writing. In this paper, my professional interest in writing is coupled with my personal commitment to my sons needs, leading me to explore how AS and HFA affect the writing process and to then question the prevailing composition pedagogies which I believe devalue, if not ignore, learning difference. Review of Literature The literature in the field of education concerning the development of writing abilities is not nearly as massive as the literature concerning development of skills in reading and math. Clearly, the skill of writing is highly valued in our information-based culture and yet how it is that children learn to write has managed to escape much intense scrutiny. In their article, Navigating the writing process: Strategies for young children, Poindexter & Oliver (1998/1999) point out that while elementary school teachers have always been concerned with children's literacy, in the past most [research] efforts were devoted to helping children read rather than to write (Chomsky, 1971; Sealey, Sealey, & Millmore, 1979). They point to curricular developments during the mid-1950's to the late 1970's that introduced creative writing into elementary schools in order to expose children to systematic writing before high school. It was also during the 1970's that the notion of

3 writing as a process gained a foothold in the research and teaching of writing (Graves, 1983). The process approach recognized that most writers move through three general stages in writing: prewriting, writing, and postwriting that involves editing and revising. The assumptions were-and continue to be--that direct instruction in prewriting exercises (for example, brainstorming, use of graphic organizers, mapping, outlining and freewriting) will lead children to the development of meaningful texts and that further direct instruction in postwriting strategies will lead them to the completion of more refined, readable texts (Poindexter & Oliver, 1998/1999). These assumptions naturally target the skills and abilities of the normally developing child who is progressing at a grade-level-appropriate rate, not to mention the cognitively normal child that responds naturally to such educational efforts and prompts. A body of literature exists, created largely in the 1980's and early 1990's, addressing the development of literacy skills including reading and writing at the earliest stages of life prior to school termed emergent literacy. In a synthesis of research on emergent literacy, Gunn, Simmons & Kameenui (1995) found that researchers in this field agreed that emergent literacy: (a) begins during the period before children receive formal reading instruction, (Stahl & Miller, 1989; Teale & Sulzby, 1987; van Kleeck, 1990), (b) encompasses learning about reading, writing and print prior to schooling (Sulzby & Teale, 1991), (c) is acquired through informal as well as adult-directed home and school activities, and (d) facilitates acquisition of specific knowledge of reading (p.2). Study of emergent literacy attempts to determine how various environmental and experiential variables in the pre-school years affect the later development of literacy in the classroom and, while most of the findings address development of reading skills, according to Gunn, Simmons &

4 Kameenui (1995), early experiences with print and interaction with adults modeling literate activities strongly influence a childs later success in writing (p. 16). In 1975, in the book, The Development of Writing Abilities (11-18), Britton et al. argued for a developmental continuum in later development of writing abilities with a body of data gathered from the study of 11-18 year olds. Brittons approach to writing was purely curricular, however, and did not really address the development of writing abilities on an individual level. Rather, a childs development of writing abilities is driven by a move from expressive language towards differentiations in language use which entail writing in various genres or audience categories. This developmental model rests firmly on a curricular foundation which emphasizes writing for either transactional or poetic purposes. Utilizing this model, Britton asserts that, in general, students develop along this curricular trajectory, from expressive to narrative to analytical to theoretical, from concrete to abstract. As Patricia Dunn points out in her book, Learning Re-Abled: The Learning Disability Controversy and Composition Studies (1995), the dearth of writing research which is genuinely developmentally based is especially evident when considering the development of writing abilities in children who possess various learning and developmental disabilities. While Dunns interest in such research lies primarily in the field of college composition, the sad reality is that research on writing development in children with disabilities is limited in the K-12 world as well. Newcomer & Barenbaum (1991) reviewed the literature related to the writing ability of children with learning disabilities and stated that the body of research is small and quite young, with nearly all research coming after 1980 (p. 578). Of the studies they reviewed, most fell into the following five categories: 1) focus on syntactic and mechanical error; 2) focus on genres of writing (following the

5 Brittons model of development); 3) focus on story-composing ability with particular attention to the various components of story schema; 4) focus on knowledge of text structures; 5) focus on idea generation and knowledge transformation; or 6) focus on metacognitive processes or self-talk in the writing process (p. 578-9). Newcomer & Barenbaum praise the existing body of research, but lament that most of the research has yet to be replicated or extended, and that longitudinal studies are all but nonexistent (p. 591). Writing is obviously a physical act, first and foremost. In his influential book, Mind in Society: The Development of Higher Psychological Processes (1978), however, Vygotsky (1978) points out, Such a complex sign system cannot be accomplished in a purely mechanical and external manner; rather it is the culmination of a long process of development of complex behavioral functions in the child (p. 106). He argues for a natural rather than artificial teaching of writing, allowing the child to view writing not on a curricular continuum, but rather on a social continuum in which the child is given tools to express thought and language in a form other than speech when the time and situation call for written language (p. 118). The perspectives detailed by Vygotsky (1978, 1986), Wertsch (1998), and Lave and Wenger (1991) point to the social and cultural origins of that development. Dyson (1995) insists that we now view written language as inextricably tied to learning to interpret-and, potentially, to reinterpret-the social world and ones place in it (p. 6). This sociocultural theory that dominates current writing research highlights the interactional nature of learning on both inter- and intrapersonal levels, a reality which places tremendous roadblocks on the path of language learning for the child with AS or HFA. The act of writing is a terrifically complex process, encompassing a broad range of physical, cognitive and social skills: handwriting and the attendant fine motor skills, spelling, planning and

6 organization, sentence formation, paragraph formation, consideration of purpose and audience, and increasingly elaborate instances of meaning-making that require sophisticated and usually invisible social negotiations on the part of the writer. We probably cannot even imagine all the points of possible difficulty in written communication for children that deviate from what is widely accepted as a normal trajectory of development in the areas that affect the writing process.

Asperger Syndrome, High-functioning Autism and Composition

A Los Angeles Times headline announced in May of 2003 that California autism cases nearly double in 4 years (Mestel, 2003). The California Department of Developmental Services had just released a report, Autism Spectrum Disorders: Changes in the California Caseload; An Update: 1999 through 2002 (2003), and the news was shocking. The prevalence of autism in California had risen from 7.5 per 10,000 persons to 20.2 per 10,000 between 1985 and 1995, an increase of 269 percent (p. 2). The increase in prevalence of higher-functioning diagnoses of autism, including AS and HFA, during that same period was staggering: 3081 percent. From 1998 to 2002, those diagnoses increased 79 percent (p. 6). The Department of Developmental Services indicated that other populations outside California had found similar increases. According to a 2002 Time cover story on autism, the problem is five times as common as Downs Syndrome and three times as common as juvenile diabetes (Nash, p. 28). Researchers in the field of autism have estimated the prevalence of AS to be between 10 and 26 per 10,000 persons (Frith, 1991; Gillberg, 1989; Bashe & Kirby, 2001; Bauer, 1996; Safran, 2001). Why do these numbers matter? They matter to educators from early childhood through

7 college because an increasing and significant prevalence of a serious developmental disorder affects mainstream classrooms where disabled students are more often than not included thanks to changes in special education law in the past two decades (see Siegel, 2001, chapter 2). Children with special needs are entitled to a free and appropriate education in the least restrictive environment directed by a document called an Individualized Education Program (or IEP) under current law known as the Individuals with Disabilities Education Act (or IDEA) (Siegel, 2001). That least restrictive environment, for students with AS and HFA, often translates into a mainstream education with accommodations and helps. Bauer (1996) claims that a significant number of AS students are able to complete college and even graduate school (p. 8). Extending understanding, acceptance and assistance to these students is our responsibility and the chances of such a responsibility presenting itself in any given classroom is on the rise. In the writing classroom, this responsibility is highlighted by the importance of creating learning environments that value the language, lives and identities of students. While this valuing has been at the heart of discussions of race, class, gender and language difference in composition, a critical awareness must also be developed in the area of disability. Dunn (1995), in discussing learning disabilities in composition, alludes to the need for this increased awareness: We need a theory to account for those few students whose writing problems cannot be fully explained by environmental factors. Granted, we may not find an ideal way to test, teach or even name such students, but we owe it to them to track down every clue available about learning (p. 57). In their edited volume, Asperger Syndrome (2000), autism researchers Klin, Volkmar and Sparrow issue a similar, compelling challenge, stating, The neurotypical world needs to value diversity, allowing for special people with behaviors and views different from the mainstream to contribute to and

8 enjoy the resources of the larger society. Not only is there room for difference, but it should be valued (p. 10). Finally, and perhaps most practically, the need for increased awareness and an opening up of pedagogical theory to the differences presented by students with AS and HFA is urgent because the challenge of written communication for these students is so acute. The social, communication, executive function and motor skill deficits that they bring to every act of writing could effectively hamper the development of writing abilities and consequently prevent them from participating fully in the academic and cultural communities which demand writing proficiency. Before discussing this challenge further, an examination of autistic spectrum disorder (ASD), and especially AS and HFA, is clearly in order. Autism, AS and HFA If I could snap my fingers and be nonautistic, I would not-because then I wouldnt be me. Autism is part of who I am. (Temple Grandin, in Sacks, 1995, p. 291).

Autism was first detailed in a paper published in 1943 by Dr. Leo Kanner, a Viennese psychiatrist at Johns Hopkins, in which he described a syndrome he termed early infantile autism. The paper differentiated children with a collection of symptoms now referred to as classical autism or Kanners autism from the then-current practice of diagnosing these children with childhood psychosis. Kanners autism appeared in infancy and was characterized by: autistic aloneness-a lack of affective contact with others lack of social language and, when language did develop, unusual linguistic behaviors (i.e., echolalia, the repetition of heard words, phrases or sentences) an anxiously obsessive desire for sameness

9 fascination with objects islets of ability often linked to memory (e.g., savant abilities) (Wing, 1991, p. 93-94).

Kanner also delineated additional characteristics that were not deemed essential diagnostic criteria, but that often presented in children with autism, including nonverbal communication impairment, motor clumsiness, stereotyped movements (i.e., hand flapping, finger flicking), odd responses to sensory stimuli and negativity (Wing, 1991, p. 95). A year after Kanners paper, in 1944, Dr. Hans Asperger published his second doctoral thesis in Vienna, a series of clinical case studies titled, Autistic Psychopathy in Childhood. Asperger described children with striking similarities to Kanners subjects, but with significant differences. While Aspergers subjects experienced social deficits, theirs was not the aloneness described by Kanner. They were socially isolated, but not unaware or uninterested in people; their social overtures tended to be inappropriate in various ways and they displayed a disregard for social conventions born out of a certain obliviousness. They were, in a word, odd. Additionally, Aspergers children developed speech before school age, typically had large vocabularies and reasonable grammar where Kanners were often mute or echolalic (Wing, 1991, p. 96). Perhaps most interestingly, the children described by Asperger each possessed an intense special interest which consumed them. In her article, Asperger and His Syndrome (1991), Frith states, Their special interest is often their sole topic of conversation. . . .The interest may appear excessive, abstruse and sterile to others, but not to the Asperger person (p. 14). Asperger himself referred to autistic intelligence, an intelligence Sacks (1995) describes as scarcely touched by tradition and cultureunconventional, unorthodox, strangely pure and original (p. 252). In the decades following these published papers, Kanners ideas about autism drew attention

10 from clinicians and researchers while Aspergers languished in postwar Europe, largely forgotten. Frith (1991) rightly points out that the word autism tends to conjure up Leo Kanners memory: Kanners cases are so well known that they will always remain prototypes...Children who do not talk or who parrot speech and use strange idiosyncratic phrases, who line up toys in long rows, who are oblivious to people, who remember meaningless facts (p. 11). Dustin Hoffmans memorable, iconographic role in Rainman is a prime contemporary example. An unfortunate analysis of autism developed and took hold through the 1950s and early 1960s, stemming from the Freudian theories popular at the time and widely disseminated through the work of Bruno Bettelheim, which blamed the disorder on remote, emotionally cold refrigerator mothers and deemed autism a defensive behavioral response (Sacks, 1995, p. 247). This inaccurate and harmful idea was eventually overturned and the organic nature of autism was established in the publication of Bernard Rimlands book, Infantile Autism, in 1964 (p. 303). Aspergers work was rediscovered and revived in 1981 in a paper published by Lorna Wing of the Institute of Psychiatry in London. It was Wing who coined the term Aspergers Syndrome and who characterized the syndrome by a triad of impairments affecting social interaction, communication and imagination (Wing, 1981). Wing outlines and elaborates on Aspergers accounts of his subjects characteristics and behaviors which has served as a starting point for modern diagnosis: Speech: Relatively normal development Pedantic, overly formal speech Lengthy speeches on special interests Repetition of heard words or phrases

11 Some word invention Nonverbal Communication: Minimal facial expressions Abnormal vocal intonation (i.e. monotone) Limited or inappropriate gestures Poor comprehension of body language of others Social Interaction: No lack of desire for interaction with others Lack of understanding of social norms & rules Naive and peculiar social behavior Apparent lack of intuitive knowledge Lack of social adaptability Repetitive Behavior: Unusual attachment to things Dislike of unfamiliar settings Resistance to change (Wing, 1991, p. 2-3). The acceptance of AS as a diagnostic entity, as detailed by Wing and other researchers in the 1980s and early 1990s, was solidified by its inclusion in the Diagnostic and Statistical Manual of Mental Disorders, 4th Edition (DSM-IV) in 1994 (see Appendix A). Both AS and HFA are considered to exist on the mild or higher functioning end of the autism spectrum (Frith, 1989) and are understood to be biologically-based neurological disorders (Gillberg, 1989; Frith, 1989 & 1991;

12 Koegel, Koegel, Frea & Smith, 1995; Baron-Cohen, 2003). Writing Abilities in People with AS and HFA The child with AS may not conform to the traditional sequence of stages in acquiring scholastic abilities. The child appears to have a different way of thinking. (Attwood, p. 120). Understanding and tolerance are, philosophically, what is needed in considering the development of writing abilities in children with AS. Practically, however, because these children share certain characteristics, knowledge of their developmental needs and norms is very desirable so that teaching methods and appropriate expectations and assignments can be devised-we want them to be able to participate and succeed in writing. Kunce & Mesibov (1998) and Hooper & Bundy (1998) both remarked that the literature addressing learning characteristics of and educational interventions for students with AS and HFA was scant. According to Hooper & Bundy (1998), The learning characteristics of individuals with AS are just starting to be uncovered (p. 318). Unfortunately, according to a more recent synthesis of the literature on AS which appeared in the Winter 2001 issue of Exceptional Children, There has been scant attention paid to AS in the American special education literature at a time when referrals are expected to sharply increase. The authors plea is urgent: Information is desperately needed to assist educators in screening...and to help plan effective interventions(Safran, 2001, p. 151). Much of what is available even today comes in the form of teacher and parent lore, Internet sources and more general publications (Kunce & Mesibov, 1998, p. 228). Within the field of special education, learning disabilities and developmental disabilities in all their infinite variety are often collapsed. Consider an article in the Journal of Learning

13 Disabilities which calls for an approach to writing instruction which emphasizes peer editing and collaborative work, and involves the discussion of self-talk and consideration of audience with learning disabled children (Englert, 1992, p. 154). While this approach may be helpful with certain children struggling with other learning difficulties, the AS child could easily find this sort of instruction both confusing and highly stressful. What is needed, clearly, is research in the area of writing and AS, both how it affects the development of abilities and the process itself, and what methods of instruction might assist the AS child in composing meaningful texts. This research will hopefully move beyond early (or emergent) literacy development and address the education of older students with AS and HFA, as increasing difficulty [occurs] in the upper elementary, middle and high school years when greater emphasis is placed on application and abstraction of skills and knowledge (Kunce & Mesibov, 1998, p. 243) and writing becomes an integral part of the curriculum. Dyson rightly states, If literacy is the rendering of a relationship in graphic symbols, if the differentiation of a symbol system is linked to the differentiation of social possibilities, then we cannot make sense of childrens literacy learning without making sense of childrens interactive lives, the who, what, where, why, and when of their language use. (Dyson, 1995, p. 36). A writers consideration of audience, the choosing of appropriate language to the writing situation, attention to the affect which is present in the text and is conveyed to the reader-one attempt to look at these issues through the eyes of a child with AS is enough to demonstrate that the task must be terribly frustrating, if not overwhelming. Based upon the characteristics of AS and HFA detailed by Klin & Volkmar (2000), I assert that certain areas of probable difficulty in different aspects of the writing process will likely exist

14 for students with these disorders. In brief, the characteristics are: Theory of mind deficits Theory of mind is the cognitive ability to imagine or predict the thoughts of others-an other awareness. A deficit in theory of mind is often referred to as a lack of empathy and affects a persons ability to communicate intuitively and to effectively read other peoples minds. Pragmatic communication deficits Pragmatic communication deficits include difficulty with nuanced, metaphorical and loaded language (i.e., humor, irony, exaggeration); extraordinarily literal approach in both interpretation and use of language; impaired ability to use cohesive devices; and poor awareness of background information and conceptual links. Perseverative behaviors Perseverative behaviors are stereotyped behaviors, typically involving the body, that are repetitive and self-stimulatory. Research suggests that perseveration is a stress-relieving response that generally resists correction. These behaviors can include finger or hand movements (e.g. finger-flicking or hand-flapping), full body movements (e.g. rocking or spinning), or unusual interactions with objects (e.g. clicking a pen or picking at lint on fabric). Executive dysfunction Deficits in the area of executive functioning lead to difficulties in planning, organizing and self-management, and also affect cognitive flexibility or the ability to entertain alternatives, often leading to behavior rigidity.

15 Special interests Many students with HFA or AS have an interest or interests that consume their thoughts and motivate their behaviors. These special interests are often esoteric or unusual; they can also be mainstream interests, but they are taken to an extreme or continue to be interests when other children have moved on to the next new thing. Motor Clumsiness Motor clumsiness can involve either fine or gross motor skills. General early developmental delays AS and HFA are, at their core, developmental syndromes. The developmental delays can occur in a number of areas and at any age or stage of life. One of the most noted is latedeveloping speech and most children appear to have delays in social development, though those delays may be attributable to other characteristics of the syndrome (especially theory of mind deficits).

Research Design and Methodology I combined qualitative research methods from case study design and textual analysis to examine the writing process of Sam, a seventh grade student with high-functioning autism, as he worked through a single, multi-draft writing assignment in a language arts class. I sought to observe and analyze how various characteristics of HFA and AS directly and indirectly affect the skills and behaviors a student must draw upon in order to complete a writing assignment in a process writing classroom. Qualitative Case Study Design

16 The study described in this article draws on a four-week study in which I examined Sams work on a single writing assignment. Methods for this case study included: A thorough developmental and educational history of Sam, compiled from my own memory; comments from teachers recollected from meetings and discussions, as well as written comments on schoolwork, progress reports and report cards; and expert reports, test scores and transcripts of meetings involving the Special Education Assessment leading up to Sams Individual Educational Plan (IEP). Observations of Sam while planning the paper, writing the first draft of the paper, analyzing the written comments from the teacher on the first draft, typing the second draft of the paper, and analyzing the written comments from the teacher on the second draft. All of these observations took place in the home where the assignment was being done for homework. These observations were documented in a log which included transcriptions of conversations with Sam. Interview with Lisa Kirk, Sams language arts teacher. Lisas interview addressed Sams work on the paper in class, including discussions between Lisa and Sam regarding writing in general as well as writing for the present assignment. Textual analysis of both drafts of Sams paper as well as both sets of teacher comments on those drafts. I examined the drafts for patterns of error and analyzed them both for content and fluency in response to the writing prompt. I examined the teacher comments in light of HFA/AS characteristics, seeking those comments that might point to the effects of those characteristics in the written product. A single case study approach allowed me to view one subject in depth and provide a

17 snapshot of the skills, behaviors, strengths and weaknesses involved in the writing process from beginning to end. MacNealy (1999) points out in Strategies for Empirical Research in Writing that case study research provides rich description of an individual which can provide insights into events and behaviors and can lead to the development of research questions and hypotheses to be tested in future research. The findings are not findings in the traditional sense, but rather the observations lead to richly detailed descriptions of an individuals behaviors in a context, providing a more holistic view of the subject that cannot generally be obtained from traditional research methods involving the testing of predetermined variables in double-blind experiments. As Bissex (1987) asserts, in case study research, researchers can attend to information that is humanly significant though not mathematically measurable (p. 11). She admits, as do I, that case study research is not necessarily generalizable, but the holistic picture that is created in a case study can contribute greatly to a disciplines understanding of what is happening when individuals learn within certain contexts. Its exploratory nature can be viewed as limiting; however, exploration is an important first step in an uncharted area such as the development of writing abilities in children with disabilities. The case study literature in the broad field of writing has contributed tremendously to the development of theory and practice in composition studies-witness the seeds of process theory planted in Emigs (1971) pioneering case studies of twelfth grade writers or the development of cognitive research in writing that started in the case study research of Flower & Hayes (1981) or more recent developments in theories of situated learning that grew out of the case study research on writing in the workplace done by Odell & Goswami (1985), and Selzer (1983), and in higher education by McCarthy (1987). Subject Selection

18 My interest in the development of writing abilities in children with HFA and AS grew out of my personal experiences with a child with HFA and my commitment to his educational development. As a college writing instructor for four years and a doctoral student in education with an emphasis in writing research, my interest in my sons development in writing was acute and served as motivation for my study in this area. Watching my son struggle with writing assignments led me to question: How is his HFA affecting this process? What can be done to accommodate any needs arising during the writing process that his disability presents? The questioning was personal at first, as I longed to ease his struggles and help him to excel in an area that had been my passion all of my life. It was painful to know that I had helped many students in my classes to improve their writing abilities and nevertheless felt completely powerless to help my son with his own writing. His problems with the process seemed so foreign to me, so unusual, so untouchable. And yet, because of his intelligence, the expectations placed on him as a student writer were not much different from those placed on neurotypical students at the same level. I had to wonder: were other children with HFA and AS experiencing similar struggles? Could research in this area uncover something important? Something helpful? My tentative answers were hopeful. When I began designing a study of the writing process of children with HFA/AS, I knew that I wanted as close-up a view as I could get. I wanted to try to get inside, to take my knowledge of HFA/AS and use it as a lens through which I could look at the writing process. I also knew that children with HFA/AS, as pointed out earlier in this paper, can be very uncomfortable in socially charged situations and the researcher-subject relationship seemed unusually charged and fraught with many slippery negotiations that I knew could likely be misunderstood, misinterpreted or, worse, harmful to potential subjects due to the stress that they might create. Finally, I hoped to

19 overcome, even if only partially, the very act of observation affecting the observed behaviors, a phenomenon that I thought might be especially problematic in a close-up observation. These considerations led me to choose my own son as my initial research subject. One advantage to conducting parent research is that I have full access to my subjects history, both in documents and in recollection of actual occurrences. Another advantage is that I was able to observe my subject in a completely naturalistic setting without needing to worry about how my presence might affect the observed behaviors. In this particular study, another perceived advantage that proved very valuable in the course of the data collection was that I have knowledge of my subjects unique collection of autistic characteristics and typical behaviors. That lens I spoke of earlier was clearer and more readily available to me in my analysis of data than it might have been with a subject Id just met or didnt know as well. The benefits are undeniable and, in fact, there is a history of parents observing their own children for research purposes. Even educational research pioneer Piaget observed the behavior of his own three children in his initial case studies (Bissex, 1987, p. 10). This personal knowledge available to a parent researcher, of course, presents potential problems. The most obvious potential problem is bias. A parents love and concern for a child is assumed, and usually rightfully so, and these feelings will no doubt color the observations and conclusions in any research situation. There is no adequate defense to this assertion. The data is tainted by personal feelings-and while personal feelings surely taint all qualitative data, the personal feelings between a parent and child are going to be stronger than those between a researcher and subjects that were strangers when the project began. My only response is that it is those feelings that have prompted and motivated my research and the drive to understand the effects

20 of high-functioning autism on the writing process is strong and sustaining. I have taught scores of strangers about the writing process in college composition courses and the helplessness I feel in the face of the challenges my son must endure in writing makes the research questions I ask that much more urgent. I dont just wonder. Im not just curious. I need to know. For my childs sake. How do I combat the legitimate problems of bias in my research? I lean heavily on the research in the field of autism and call upon it to guide me in my understanding of the disconnect between writer and writing when HFA or AS are a factor. I ask for input from the classroom teacher. And I incorporate methods from textual analysis to provide a more objective view of this writing process Im trying to study. Context The context of this study is twofold: first, the studys subject attends a nonpublic school in the Los Angeles Unified School District that is, in its own literature, for children with challenges in the areas of socialization, communication, language development, peer relations, learning disabilities and academic performance without significant behavior problems. Many of the students served...experience special needs related to Asperger Syndrome and high-functioning autism (The H.E.L.P. Group pamphlet). Teachers at the school are trained to work with students with social and communicative challenges including AS and HFA. The administration, staff, and faculty are expected to provide accommodations necessary to help the students at the school succeed in spite of their disabilities. This context is understandably questionable in light of the present climate in educational research favoring inclusion and mainstreaming of disabled students. As is often the case in qualitative research, however, the context came with the subject. I, as researcher, understand the favored philosophy in special education at this time, however I choose not to judge

21 the educational environment of my subject, but rather acknowledge its characteristics and note that especially in my assessment of the parameters of the assignment and in my interview with the classroom teacher, the accommodations built into the context affected the outcomes. I did not enter the classroom at the school in order to study the subject at work. This decision was purposeful. I strove to keep the stress of the research situation on my subject to an absolute minimum during the course of the study. When I asked my son if he would mind if I observed him in the classroom while working on a writing assignment, he was emphatic in his request that I not observe him in school. I respected his wish-I felt strongly that any research conducted at the expense of the researched subject is not ethical. The second context for the study was the home of the subject which, of course, happens to be the home of me as the researcher. The likelihood of gaining access into the home of a child with HFA or AS for the purposes of observing that child seemed rather remote and yet this environment is rich with information that I felt would help me answer my questions. Most significantly, I believed that the home environment would provide me with the opportunity to observe a subject at work on a writing assignment free from the potential stressors and distractions of the classroom. I found the study of my own child to be advantageous in this regard as I was able to observe my subject in a naturalistic setting and in a manner that would not be available to a non-familial researcher. The trade-off was worth it to me in that I had a close-up view that did not stress the subject as I believe such close observation would cause to a non-familial subject. The Case of Sam Early Childhood The fact that Sam did not speak a word other than the occasional yes until his second

22 birthday was worrisome, not because he was unable to relate or communicate with others-he had developed an elaborate sign language all his own which usually made his thoughts and desires fairly clear-but rather because lore in the form of parenting books and magazines indicated that this was a little late. According to the child development experts, this self-styled sign language wasnt normal-it wasnt even mentioned, but I managed to gloss over this presumed abnormality and assured myself and others that my son was simply independent and would talk when he was ready. Other developmental abnormalities were similarly dismissed during Sams early childhood. The fact that he was (and is) reluctant to play with other children was attributed to acute shyness and his penchant for order and symmetry were intelligent little quirks of personality. His poor fine motor skills were attributed to left-handedness and a sharp growth curve that perhaps left his muscles lagging behind development in other areas. The fact that he would not look at interesting objects I would point out to him and that he often did not respond when his name was called led his pediatrician to test his hearing; the hearing checked out and the lack of responsiveness was ignored. His very literal interpretations of everything he heard and read were often frustrating for both of us, but not considered a serious problem. Each minor, or even major, deviation from what the rest of the kids were doing, a common topic of conversation and personal reflection for many mothers, was always met by my explanations and justifications-- my doubts and fears were simply internalized. Dysons (1995) assertion that visions of the normal developing child traditionally have carried socially hierarchical messages is a painful reality for a mother who watches as her child is placed low in that social hierarchy based on criteria which so clearly degrades difference (p. 5). Schooling

23 A move from Missouri to southern California caused Sam to be caught between conflicting cut-off dates for kindergarten so his schooling began in the first grade class of Mrs. Jackson. While Sam took to new concepts quickly and confidently, his ability to learn handwriting and to copy words and sentences from the board was hindered by an eyesight problem (corrected with glasses once the problem became apparent) and by poor motor coordination. His writing process was consequently very slow. Mrs. Jackson assured me that his difficulty with writing would probably pass with time. Hell grow out of it, she said. Sams social development was also a concern during first grade; he was spending recess time alone on the playground and was having difficulties cooperating with other children when required to work in a group setting. In her report card comments, she said that Sam was very rule oriented and is having some trouble with those who dont follow the rules. No particular remedies were suggested, though; again, the teacher was confident that the problems would pass as he worked on getting along better with peers. In second and third grades, as writing became a larger part of the curriculum, Sams ability to fully participate in the classroom and show his mastery were increasingly compromised. Problems with orthography were no longer attributed to being new to the task and they began to significantly interfere with assignment completion. As Jones and Christensen (1999) point out, The multiple attentional demands of generating written text may mean that students who experience difficulty in the orthographic-motor demands of writing letters and words are likely to have difficulty expressing their ideas in the form of written text (p. 45). Sam was expected to construct paragraphs at this stage, but his paragraphs were deemed underdeveloped, lacking appropriate detail. His spelling was often poor. In reading, however, he was excelling; he clearly comprehended what he read because he was able to explain the content thoroughly and accurately

24 if allowed to do so in speech rather than writing. Vygotsky (1978) claims that written symbols function as designations for verbal ones. Understanding of written language is first effected through spoken language, but gradually this path is curtailed and spoken language disappears as the intermediate link (p. 116). For some reason, this path between spoken and written language was not disappearing for Sam at the point when it was disappearing for other children his age. In fact, Sam began talking to himself at this point, at times repeating his own words and at other times, in the privacy of his bedroom or the hall bathroom, he seemed to be rehearsing for potential conversations in the future. It was as if the egocentric speech discussed by Vygotsky (1986) which was supposed to have gone underground and turned into inner speech (p. 33) at this age was not only not going underground, but was reasserting itself in new ways instead. Socially, Sams struggles were intensifying. His third grade teacher, Mrs. Barry, wrote on his report card, in the euphemistic register of teacher comments, that he was working on refining peer relationships; in conference, however, Mrs. Barry made it very clear that Sam was not fitting in and was speaking to other children in ways that were rude and insensitive. He was the class policeman, as he had been labeled by previous teachers, however at this age, the other children were beginning to expect a certain code of silence among schoolchildren. Due to the incessant teasing and bullying of other children in the class and the teachers insistence that Sam was the one who needed to change, I moved Sam to another third grade class. The new teacher, Mrs. Kreis, echoed Mrs. Barrys assessments: Sam was lacking tact and didnt seem to be picking up on the social cues of his peers. He much preferred to converse with adults. On the playground and during P.E., his inability to catch, throw or kick a ball made him increasingly prone to teasing by the boys who ruthlessly judged others based on these skills. He would wander away and walk in small circles on

25 the pavement, alone. In his fourth grade class, Sam encountered, for the first time, a rigorous schedule of readings and corresponding short-answer tests along with a regular stream of writing assignments that were to follow the five paragraph essay format. Homework assignments were no longer sent home on photocopied sheets, but were to be copied down from the board each morning into a notebook. Early in the school year, handwritten progress reports from the teacher, Mrs. Yasuhara, were sent home indicating that Sam was quickly falling behind in his written assignments, he was failing tests in subjects that were usually his strong suit (science and history) and he was not demonstrating the level of organizational ability this teacher required. Sam reported that he was not able to go out to recess anymore because he had to stay in and write standards; the teachers method of punishing students for misbehaving in class, not turning in homework or not keeping their school materials properly organized was to have them sit in at recess and write sentences over and over: I will keep my desk neat and orderly. I will keep my desk neat and orderly. I will keep my desk... Sams excruciatingly slow writing process was now more of a handicap than ever before. At home, I began to observe, as a researcher might, Sams writing process. I had begun to wonder if he might simply be distracted, a daydreamer, maybe. He was, in fact, quite fidgety, but he kept himself on task as he wrote. I could hear him speaking the words softly to himself as he wrote. I saw him painstakingly form each word in jagged cursive letters, often stopping to erase and rewrite words because hed left out letters, or erase and rewrite sentences because hed left out entire words. He spoke to me about the assignments, focusing almost singularly on the number of sentences he needed per paragraph, the number of paragraphs needed to complete the paper and the need to follow various procedural rules: writing on every other line, spacing items properly on a

26 title page, including page numbers at the bottom of each page in the correct format. The subject matter seemed, to him, immaterial. Interestingly, he never once said he hated writing or didnt want to do it, even when hed spend up to two hours in the composing of just two or three paragraphs. His patience with the tasks was astounding. Conferences with the teacher led to a few changes which improved Sams outlook on going to school: he would no longer be writing standards (the writing instructor in me could not bear to see writing used as a punishment with my child) which freed him to go out to recess, and the teacher promised to assist Sam in getting the homework assignments written down each morning. The tests remained a puzzle-how was it that Sam could fail a test on magnetism when our entire family is well aware of his encyclopedic knowledge on the topic and has witnessed his various experiments with magnets and their power? Sam didnt get the answers wrong on classroom tests. He simply didnt answer all the questions. Sometimes he wouldnt answer any of the questions. No amount of encouragement to answer all items on a test made a difference and the teacher claimed she was unable to give him extra time unless Sam was identified as having a learning disability. The negative progress reports continued. It was time to find out just why Sam, a child who was recently identified as gifted by the school district, was floundering. The Special Education Assessment At the suggestion of the school principal, my husband and I signed an authorization for the Los Angeles Unified School District to begin what they term the special education process, the first step of which is an assessment. According to the districts official special education literature, An assessment involves gathering information about your child to determine whether your child has a disability and, if he or she is eligible, the nature and extent of special education services that

27 your child may need (A Parents Guide, 2000, p. 4). In Sams case, a battery of assessments were ordered: Social/Emotional Development Cognitive Development Academic Achievement Perceptual Development Motor Development Communications/Language Functioning Health

The assessments were conducted by a team consisting of the school psychologist, two special education teachers (called resource specialists) and the school nurse. Once the assessments were completed, the team of assessors, along with myself and my husband, Sams classroom teacher and the school principal all convened for an Individualized Education Program (IEP) meeting. We were there with the express purpose of discussing the assessment results and making a determination whether my son would be eligible for special education services, and, if eligible, just what services would be made available. The meeting entailed each member of the assessment team reading their written reports about Sam. The resource specialists had found no significant deficits in Sams academic achievement, including in the area of writing-as part of their assessment, Sam had sat down with the specialists, chosen a topic (his Beanie Baby collection-his special interest at the time) and written a full page of well-constructed paragraphs. They detected difficulties in his ability to copy work accurately and using legible cursive. The nurse noted some of Sams developmental delays

28 (information gleaned from an interview with me). The school psychologist reported that Sam had scored in the above average range in auditory thinking and reasoning skills, and had scored below average in the auditory-perceptual and non-verbal visual channels. The classroom teacher emphasized that Sam relates positively with me, but not with his peers. Other students find it difficult to work with [him] and his playground conduct is not always appropriate. She also indicated that Sam really doesnt participate in the activities of the classroom, usually choosing to pursue things on his own terms. I dont really see the point of him being in the classroom at all, she said simply. The consensus was that Sam has a specific learning disability (this is an actual term for a particular disabilitythe indications are that a child shows a severe discrepancy between ability and achievement due to psychological processing deficits). The concrete result of this meeting was the formation of an IEP. Sams IEP allowed him assistance in getting his homework assignments (an aide writes them down and places them in a notebook for Sam, then assists him in getting the notebook in his backpack) and also allowed him to take his tests in the learning resource room where he could be away from distractions and, hopefully, better concentrate on actually answering the questions. Finally, the school nurse, at the prompting of the rest of the assessment team, filed a request for counseling through the district in order to address Sams problems with socialization which they determined, based on no empirical evidence, were attributable to him being an emotionally troubled little boy. In the final moments of the IEP meeting, however, as I was talking to the IEP team about Sams various sensory sensitivities (tags in shirts, certain sounds), the school psychologist stopped me and began to ask some questions. How does Sam respond to change? (Horribly.) Does he

29 remember things hes read? (Like an elephant.) Is he especially literal? (I could only laugh.) The psychologist responded that, after piecing together her own findings with the discussion of Sams characteristics and behaviors, she believed he may have something called Asperger Syndrome. I had never heard of it. Ill send you some materials on it, she said. We should have your son evaluated.

The Diagnosis of High-Functioning Autism People with Aspergers syndrome perceive the world differently from everyone else. They find the rest of us strange and baffling. (Attwood, 1998, p. 9) I did not wait for the materials from the school psychologist. I immediately searched the Internet for information on AS, identified the current experts in the field and got their books. What I read both amazed and relieved me. I found Sam in nearly every passage, every description, from the early childhood developmental abnormalities through the unusual social behaviors, the classroom difficulties through the intense, sustained special interests. No parent wants to hear that their child has a disability, but that pain is far less than the pain of not knowing, of never having questions answered, of self-blame and helplessness. I had Sam privately evaluated by a clinician at UCLA. She administered the Autism Diagnostic Observation Schedule-General (ADOS-G), the standard protocol for observation of autistic behaviors (Klin, Sparrow, Marans, Carter & Volkmar, 2000, p. 330), and the official diagnosis of autism was given. At that point, Sam was nearing the end of fourth grade in a mainstream public school classroom. My husband and I researched all possible interventions to help Sam both socially and academically. We learned of a private school in our city geared directly towards meeting the unique

30 needs of children with AS and HFA and after a visit and a difficult decision-making process, we pursued a placement at the school for Sam and our school district agreed. He is presently in his third year at this school and his social and academic transformations have been amazing. He no longer sits at his desk, disconnected from the class, but is an enthusiastic participant. His academic performance is at or above grade level and his work habits are much improved. He has friends that he sees both at school and on weekends. Most significantly, he feels accepted for who he is. Writing While most of Sams academic problems were helped by the accommodations and interventions built into the everyday policies and routines at his new school, his troubles with writing were stilland continue to beserious. The written portion of a recent statewide standardized test placed Sam well below average in writing abilities and a school-administered academic performance test placed him two grade levels lower in writing. His composing process is slow, his frustration is high and the products of his efforts seldom reach the goals for length, depth and correctness outlined by his teachers. Writing and the development of writing abilities in Sam is clearly and inextricably linked to the fact that he has HFA. The motor clumsiness described in the literature is the most visible characteristic which affects writing ability and accounts, at least in part, for the slowness of the process and the sloppiness of the product. The social difficulties displayed by children on the highfunctioning end of the autism spectrum such as Sam are also deeply linked to his difficulties in writing. Ultimately, it is his different way of thinking which dictates how Sam creates and utilizes written language. In that regard, he may very well be developing along a developmental trajectory that makes perfect sense for a child with a mind such as his, and is in no way delayed or

31 indicative of some inability or deficit. Vygotsky (1993), in his writings concerning learning disabilities, points out that a child whose development is impeded by a defect is not simply a child less developed than his peers, but is a child who has developed differently (p. 30). His description of blindness is instructive as an analogy to AS, HFA or any other disability that would affect learning: Blindness is not a disease, but the normal condition for a blind child; he senses his uniqueness only indirectly and secondarily as a result of his social experience. A blind person does not directly sense the dark and in no way feels submerged in darkness. . .and generally speaking, in no way senses his blindness. A blind persons failure to see light does not correspond with the sensation that a seeing person has when wearing a blindfold. Blindness becomes a tragedy only as a social phenomenon (Vygotsky, 1993, p. 81). A 7th Grade Writing Assignment Sam attended a nonpublic school for children with AS and HFA during the 7th grade. At this school, 7th grade marked the first year of middle school and consequently the first year of departmentalization and multiple teachers. Sams academic progress was directed by an IEP prepared by the schools director, Sams homeroom teacher, a school district psychologist, my husband and myself. Writing instruction at the school was taught utilizing a specialized instructional program called Inspiration. The program emphasizes the use of visual organization prompts that encourage students to brainstorm and outline. Sams writing instruction was further directed by annual goals in the Written Fluency and Written Expression performance areas of his IEP which stated: Sam will write or type a one paragraph critical response [to literature read in class]

32 with a main idea, supporting points and conclusion in a 15 minute period with 80% accuracy, and Sam will write or type a four paragraph essay with a clear thesis, supporting points, transitions and conclusion with 80% accuracy, 4/5 times. Finally, the school, in order to maintain funding from local school districts for attending students placed there, had to adhere to the English-Language Arts Content Standards (1997) published by the California State Board of Education. In general, the state called for the development of skilled writers. The published standards state: Reading and writing technical materials. . .are critical life skills. Participation in society filling out forms, voting, understanding the daily newspaperrequires solid reading and writing competencies. Similarly, most jobs demand the abilities to read and write well. Collegiate and technical courses generally require a high level of proficiency in both abilities. In an emergency, reading and writing with speed and accuracy may literally mean the difference between life and death (p. v). In order to fulfill these lofty ideals, seventh graders in California were to aspire to write clear, coherent, and focused essays with awareness of audience and purpose. The essays were to contain formal introductions, supporting evidence, and conclusions. Vaguely, the students were to progress through the stages of the writing process as needed (p. 44). Sam received a writing assignment from his language arts teacher in February, the middle of the school year. The assignment was to write an essay on the topic, 3 wishes. The writing prompt was divided into three parts, Introduction, Bodies [sic], and Conclusion. Each part was followed by multiple heuristics: Introduction: What are your three wishes? Why have you picked these three wishes? Do you think they will make your life better, more satisfying, longer?

33 Bodies [sic]: Write a new paragraph for each wish. Wishes 1-3, explain in detail why you want this wish. What is it? What can it do for you? Is this wish for your gain or for somebody else? How will it change you and/or your life? Will it be for the better? Conclusion: What was the result of your wishes? How did they make an impact on you? Were you happy in the end? If you could really have three wishes, do you think the choices you made were good choices? Why or why not? (See Appendix B). The students in the language arts class were given the prompt at the beginning of the class period and the teacher read the prompt aloud. The prewriting exercise consisting of a drawn conceptual map was done in class. The students were then asked to get out notebook paper and a pencil and begin writing. Sam printed the first paragraph of the paper in pencil during class. Sam had abandoned cursive writing earlier that school year for printing which he claimed was easier. His cursive handwriting had been somewhat shaky though generally legible, but the time required to write perfectly (in his opinion)-with all of the attendant erasing-was extraordinary. Sam could easily spend an hour writing four sentences. Sam always wrote with a pencil, allowing him the opportunity to perfect his writing by immediately erasing any letters, words or even sentences that seemed wrong. Sam brought the assignment home to complete as homework and, when I asked him if he had any homework, he told me he had to write a report. Its five paragraphs, he said, then groaned. Its going to take too long. I looked at the assignment sheet and suggested that it might not be too hard because he could write about things he liked. My suggestion was met with another groan. Can I do it later? he asked. I told him he could take some time to relax and then he

34 needed to get to work. I knew from past experience that completing a writing assignment could fill an entire night. The writing session that night was limited to one hour after discussing the parameters with Sam. We set a timer for sixty minutes. Ill never finish, Sam said. It doesnt matter, I said. I told your teachers that I wasnt going to make you work on homework longer than an hour. Sam started repeating the words five paragraphs. He sat in the swiveling desk chair in our home office and began to spin it around. He was clearly overwhelmed by the expectations of the assignment and was perseverating, performing repetitive behaviors-saying five paragraphs and spinning around on the chair-to calm himself. I talked to him while he spun. Sam, lets start with the next paragraph. Dont worry about how many paragraphs you need in all, I said. Sam did not respond. Lets go out to the kitchen. Youll have more room to write at the table out there. I thought that the clutter of the office might be over-stimulating and the temptation to spin in the swiveling chair was just too great. We took the timer and moved to the kitchen. Okay, I said, sitting at the table with Sam. How do you start a paragraph? I hoped for the topic sentence answer that seemed to be built into past writing assignment prompts from school. Indentation, Sam replied. Ah, yes, I said with a smile. But then you have to start with one sentence. After one, then youll think of another one. Sam moaned and began to talk about the four paragraphs he had yet to write. You only have to write for one hour. Stop worrying about how long the essay needs to be. Sam finally began to write. Even while printing, the physical writing process was still painstakingly slow for Sam. Sams three wishes were for all the money I would ever need, to be so smart I would need to go to school [the word not was accidentally omitted by Sam], and that I could fly (see Appendix C). When Sam completed his first body

35 paragraph on all the money, he stopped writing and came to me to ask a question. What are some other good things about not going to school? I reminded him that I couldnt know about the things hed already thought of since I hadnt read what he wrotea sign of his pragmatic difficulty. He said he had already thought of no homework-an understandable wish under the circumstances. T: N: T: N: T: N: T: N: T: N: Well, lets brainstorm. Why dont you just tell me? Because its your paper. [groan] Im never going to finish. What would be good about not going to school? I dont remember. Do you like waking up early to get ready for school? No. Well, theres one thing. Okay. Sam returned to his paper and added (2) no waking up in the morning to go on the bus or being driven by our parents, (3) no class work to the draft. He talked out loud as he wrote. N: T: N: T: N: I need one more thing. Why dont you think of things you dont like about school? I already put no class work. What about something you cant do or have because youre at school? Good lunches!

36 Sam returned once again to the paper and wrote and, (4) no crumby (bad) lunches. He went on to detail the bad things about this wish, explaining that this wish is althou [sic] very good it has some down qualities. After this apparent success in getting down some details, the groans started again and Sam stood up and began to pace on his toes, first in small back-and-forth steps, then in small circles, with head hung down. I want to change my last wish, he said. He had originally chosen three more wishes, but he said he couldnt think of enough to say about this wish to fill a paragraph. I checked the timer. Sam, only eight minutes left. Plenty of time to think of something new and write it down, I said cheerfully. Actually, seven minutes and fifty-three seconds, he responded sharply. Yes. Yes, thats true, I said with a nod. I then suggested he think for a few minutes about the change he wanted to make. Sam became very agitated, saying, Never mind. Cant change it. Then Ill have to go back and change the introduction. I explained that this was just a first draft and that he could always erase or just change the introduction in the next draft. This was unacceptable. At this point, Sam asked for a hug and I said, Sure. The timer went off soon after and I called an end to the writing session. The remainder of this first handwritten draft was completed in class (see Appendix A for a copy of the draft). At this point in the research, I contacted the classroom teacher, Lisa Kirk, by phone to interview her regarding Sams progress with this assignment. Lisa explained that Sam was stalling because he was afraid to get something wrong. In her opinion, Sam found generating ideas hard and struggled with any writing tasks that required interpretation or critical thinking. His language and approach to tasks was very literal, in her observation, and he hated writing because there was no right answer. I asked her what strategies she had employed to assist him in

37 completing the writing assignment. She responded that she had suggested brainstorming both out loud and on paper, but efforts, so far, have been futile. Sam was very resistant to offers of help or to direction of any kind. I asked if any classroom activities involved other students, perhaps in peer workshops or other interactional activities. Lisa explained, with some laughter, that the students did not generally do well in groups. She said that Sam was easily frustrated by what he perceived as stupidity on the part of other students and he was not anxious in any way to assist other students-and he was not alone in this attitude among the students. She then said that she had tried having all the students in the class visualize, to make movies in their minds which she thought would help them develop their ideas, but that the students seemed unable to go beyond the confines of whats there. I asked what she felt Sams greatest problems with writing were in the classroom and she said, emphatically, getting started and development. That, in a nutshell, sounded to me like the writing process in general. According to the language arts teacher, trouble was at every turn. Sam received his first draft back from his teacher with comments and corrections (see Appendix B for the first draft with teacher comments). Most of the corrections involved calling for word or phrase clarification and pointing out spelling and punctuation errors. Comments centered on the lack of details, with the end comment imploring Sam to explore each wish thoroughly. And as Sam suspected, Lisa caught the unchanged mention of the third wish as three more wishes even though later in the paragraph, the third wish is that I could fly. Sam wanted to abandon the assignment at this point, but I told him part of the writing process is revision and that he needed to at least make the corrections suggested by the teacher. I also mentioned that he now had an opportunity to write the last body paragraph about his third wish and add a conclusion paragraph.

38 Sam groaned at the thought of more writing, but said, At least now I can type it. Sam worked independently on the typed second draft, inputting the paper into our home computer and making changes as he typed. The revision took several hours, with many points along the way where Sam spun in his chair or repetitively moved the cursor back and forth on the screen. His only question to me was how many sentences a paragraph had to have. I told him that most teachers want at least three sentences in a paragraph. The end result was a five paragraph essay including his completely new paragraph about being able to fly, with the good and bad things about this wish pointed out, and a three sentence conclusion. Interestingly, one major change involved the wish to be VERY smart that he struggled over during our work together on his first draft. In the first draft, Sam stated that he wanted to be so smart so I could not go to school anymore, also to prove Im better than my brother. In the revised second draft, Sam wrote, I would want to be that smart so that I would never have to go to school again and that so nobody would think I was stupid because I had autisum (sic). This comment from Sam naturally led to some discussion between him and me, but he decided to leave it in the paper. The second draft was returned to Sam by the teacher with corrections of mechanical errors in each paragraph and a couple sentences crossed out, one to omit it completely and one with a rewritten sentence given. The end comment was a simple very good and no calls for further elaboration were given. In one paragraph, Sams numbering of the good things about his wish is left alone and in another, the numbering is crossed out. Sam took this draft to the computer at home without comment or complaint. He corrected most of the mechanical errors, added sentences or phrases that summed up each paragraph (generally, assertions that the wish had its good and bad points, but wasnt perfect). In the paragraph where the numbering was left alone, Sam left it alone;

39 in the paragraph where the numbering was crossed out, Sam rewrote the good and bad points about the wish into sentences. He added three exclamation points to his concern that being able to fly might lead to crash[ing] into power lines or crash land[ing]!!!-an unusual show of emotional emphasis for Sam (see Appendix C for a copy of the third draft). The third draft was also returned to Sam by the teacher and this draft had, by far, the most corrections, comments and requests for elaboration and additional details (see Appendix D for the third draft with comments). Transitions are suggested, the first sentence of each body paragraph is crossed out, questions are asked to elicit more details and an extensive end comment suggests ways to extend the conclusion which is clearly underdeveloped. The autism comment is crossed out in this draft with a comment, This is NOT true, and two of the three emphatic exclamation points are crossed out. Sam was completely disheartened by the comments and corrections on this draft. As he said to me, I changed all the stuff she wanted me to change and now she says its still wrong. Sam absolutely refused to make further changes and abandoned the assignment at that point. Discussion In analyzing the data collected through observations, interview and textual analyses, I attempted to filter the information through the lens of characteristics of HFA and AS as detailed earlier in this paper and manifested in my subject Sam's behaviors. Based upon the evidence I've gathered and the readings and the theories they provide as a frame for understanding HFA and AS, I have created an analytical table (see Table 1 on following page) detailing the ways I believe HFA and AS affect the writing process. My hope is that this presentation of the evidence and my hypotheses drawn from both theory and data will provide a snapshot, so to speak, of what happens when a child writes in an educational setting while dealing with the differences in mind and

40 behavior that we have labeled HFA and AS. The evidence and theory informing the analytical table and my elaboration of the material presented in the table necessarily reflect the parameters of the projectsome of the evidence was observed while some of it was inferred from observations or from extensions of theory. Some of the inferences also rise from potential cross-cell interactions where one characteristic of HFA or AS influences or leads to changes in another characteristic's effects on the writing process. Finally, while the writing process has been neatly divided into six stages, from pre-writing to revision, as a writing instructor and a student of composition theory, I am aware that the process is not so neatly divided in reality and is, in fact, a recursive process with its own "cross-cell interactions" and I hope to provide explanation of the analytical table's contents that takes this reality into account. Table 1
Theory of Mind Deficits Pre-Writing Difficulty in Activities interpreting the intent of the assignment

Pragmatic Deficits Conceptual links are often weak General linguistic difficulty

Perseverative Behaviors Difficulty in getting to and staying on task due to distraction

Executive Dysfunction Planning abilities often severely impaired Getting materials organized is difficult

Special Interests Student may insist on special interest in writing or steer subject to that interest

Motor Clumsiness

Developmental Delays Speech delays can contribute to linguistic immaturity or lack of confidence

Physical Act of Writing

Behaviors involving hands or fingers can interfere

Perfectionism

Finding needed materials (pencil, papers) can be difficult

Coordination needed for writing can be quite poor

Fine motor skills needed for writing often delayed

Drafting Sense of Audience & audience is Purpose distorted or nonexistent Writing Social skills Workshops in groups are w/ Peers poor Lack of empathy impairs feedback Feedback from Teacher

Difficulty with metaphorical language Impaired cohensiveness

Difficulty in getting to and staying on task due to distraction

Impaired self- monitoring & management affect time & fluency

Student may insist on special interest in writing

Overly literal communication impairs peer interaction

Behaviors can interefere with peer interaction & cause annoyance

Tendency to steer conversations to special interest

Social skills may be age-delayed & affect peer relations

Difficulty in reading what teacher means unless very direct

Possible lack of understanding of written feedback

Student may not be ready to reach teachers expectations for grade level

Revision Activities

Revision for an audiences increased understanding seems foreign

General linguistic difficulty and inflexibility

Difficulty in getting to and staying on task due to distraction

Deficits in cognitive flexibility impacts ability to entertain alternatives

Lack of motivation if paper is not related to interest

Frustration can cause student to abandon the assignment

41

In preface to the presentation of my explanations of and elaborations on the information outlined in the table, I concede that my evidence and the picture it paints are limited. I lack observations of the writing process in the classroom due to Sam's privacy wishes. I lack knowledge of my subject's internal states as he moves through the writing process. Because many of the characteristics of autism are internal and therefore invisible, making them visible is going to involve a certain amount of guesswork and is going to reflect the biases and preconceptions of the person doing the revealing. And as with all ethnographic studies, I am limited by the material realities of my subject and his surroundingsin this case, a child diagnosed with HFA at age nine with a welleducated parent researcher who is a composition instructor and a writing assignment given by a special education-trained teacher in a nonpublic school that has policies, curriculum and an environment specially geared towards accommodating the unique needs of students with HFA and AS. The variables in any human study are seemingly infinite and they all surely act on the data gathered and the presentation thereof. My explanations of and elaborations on the analytical table will be presented so that I may tell "the horizontal story." I will move with my subject through the six stages of the writing process and, along the way, detail the observed evidence during each stage and present my inferences and hypotheses that spring from the data and from extension of theories of HFA and AS. I will also outline potential problems and questions as they ariseproblems and questions that will hopefully

42 lead to further inquiry and, ultimately, to answers that can help ease the difficulties writers with HFA and AS experience Pre-writing Activities In this study, the pre-writing activities included evaluation of the printed writing prompt from the teacher, drawing a conceptual map, choosing subjects and details and planning the writing of the assignment.

Theory of Mind Deficits Sam showed no concern for determining what the teacher wanted from him in completing this assignment. He believed that the key to success in this assignment was writing the correct number of paragraphs with the correct number of sentences. This obsession with rules is not uncommon in children with HFA/AS. It is theorized to stem from an inability to read other people's minds and is a defensive response manifesting in rigidity and a rule-oriented attitude that can serve to lessen the chaos and seeming randomness of others' behaviors. have strong reason to expect, from my observations and from theory, that writers with HFA/AS will have difficulty in interpreting the intent of an assignment and ascertaining what responses to a writing prompt will be received positively by the reader/teacher.

Pragmatic Deficits Sam had difficulty with expansion of ideas and with the notion of choosing subjects for writing that would lend themselves to fuller development. He repeatedly said, "I'm already putting down what I think" in expressing his frustration with coming up with more ideas. He also showed difficulty in

43 choosing words and those that he did choose lacked sophisticationhis pre-writing tended to be brief, direct and composed largely of short, simple words. It is also reasonable to expect, based upon our knowledge of deficits in pragmatics and the attendant weakness of conceptual links, that a student with HFA/AS is going to have a hard time creating a plan for writing that would lead to a cohesive, unified whole.

Perseveration During pre-writing activites, Sam had a tendency to spin in his chair. The repetitive behaviors captured under the heading of perseveration vary broadly from person to person, however most of them involve the body (as in spinning), body parts (as in hand-flapping) or vision (as in staring at lights or moving objects). Clearly, any of these behaviors are going to interfere with pre-writing activities as they will distract the student from the task at hand.

Executive Dysfunction Executive dysfunction might be the most serious obstacle to the pre-writing stage of the writing process for a student with HFA/AS. The ability to plan, to break a task down into meaningful and achievable parts is severely limited. Sam displayed genuine distress in the pre-writing stage of writing this assignment because he couldn't see the "process" and expressed worry that he would never be able to write five paragraphs. Even when the process was broken down for him, he still fixated on the final product and expressed a lack of confidence in ever reaching that end. Executive dysfunction also involves disorganization and difficulty with keeping track of materials and of time.

44 Sam took a lot of extra time finding the assignment sheet, tracking down the pre-writing work he had done in class and finding a pencil.

Special Interests In asking the students to write about three wishes and why they'd choose them, Sam's teacher gave a writing prompt that provided the students creative freedom and allowed them to write about subjects that they found interesting. The teacher actually accommodated the students by acknowledging that they have special interests and giving an assignment that would work with the interests rather than against them. According to the teacher, this sort of accommodation is common in the writing classrooms at the school as it is a suggested teaching strategy in teacher training. In theory, if an assignment was more restrictive, based upon our knowledge of the persistence some people with HFA/AS display in steering everything towards their special interest, we might expect that these students would struggle with planning to write on a topic completely unrelated to their special interest or possibly incorporate their special interest into the assignment inappropriately or, at least, ineffectively.

General Developmental Delays While some debate still exists, most autism experts agree that children on the high-functioning end of the autism spectrum with delayed development of speech should be diagnosed with HFA and those without such a delay should be diagnosed with AS. Sam was delayed in his speech development and is also not especially verbalanother common characteristic of children with HFAand consequently, he often displays linguistic immaturity. This, in turn, affects linguistic

45 confidence. We have good reason to believe that this linguistic immaturity and lack of confidence will affect the writing process, including in the pre-writing stage when the building blocks of language are set in place to serve as a foundation for the actual written product.

Physical Act of Writing

In this study, the physical act of writing was performed in a classroom and a home setting. Writing was only directly observed in the home setting. The physical act of writing was of two

different typeshandwriting on lined paper and typing on a keyboard of a personal computer.

Perseveration The physical aspect of the writing process is certainly the most affected by perseveration. When Sam was spinning round and round in his swivel chair, he was not writing, even though he sat down with the intention to write. In addition, Sam displayed other perseverative behaviors. His perfectionism and insistence on order make it hard for him to write by hand and he repetitively shifted the paper slightly from side to side to center it and he erased letters and words in a seemingly obsessive manner. When he switched to typing on the second and third drafts, he displayed an unusual perseverative behavior of moving the cursor on the screen back and forth, over and over again. All other typical perseverative behaviors are also going to keep the child with HFA/AS from writing or, if not, the urge to perseverate can surely cause physical distress.

Executive Dysfunction

46 The physicality of the writing process necessarily involves the use of tools and the management of materials. Sam displayed difficulty in finding the necessary toolspaper, penciland in managing the paperworkassignment sheets, corrected drafts.

Motor Clumsiness Writing takes motor coordination and the lack of coordination common in people with HFA/AS serves to make the physical act of writing quite challenging. Typing on a keyboard is easier for many students and is often an accommodation provided when other students might be expected to write by hand. Sam struggled with poor fine motor skills throughout his life and his writing during this assignment was no less of a challenge. His handwriting is shaky, though it is not as messy as one might expect due to his perfectionism and frequent erasures. Motor clumsiness prolongs the writing process and we can expect it to contribute to frustrated feelings during the process.

General Developmental Delays Some of the motor clumsiness which affects the physical act of writing can be attributed to delayed development of fine motor skills.

DraftingAudience & Purpose In this study, Sam wrote three drafts of the assignment. The first draft was two handwritten pages and was incompleteit did not include the final body paragraph planned in the introduction and it did not have a conclusion. The second and third drafts were both five paragraphs long and were complete. These drafts incorporated changes suggested by the written comments of the teacher.

47

While consideration of audience in addition to understanding and acknowledgement of the purpose of the writing task are a part of the pre-writing or planning stage of writing, these issues are addressed in this drafting section. In the actual writing of the assignment, a subjects attention or inattention to audience and purpose would, in my opinion, be most noticeable and would affect the relative communicative success of the written product.

Theory of Mind Deficits If theory of mind is, in essence, the ability to ascertain and to some extent predict the thoughts and mental state of another personto read their minds and comprehend that readingthen clearly a person with deficits in this ability are going to have a difficult time considering an audience while writing. While a basic writer might struggle with this and employ strategies of varying effectiveness in order to address the need to write for a reader, a student with HFA/AS and the attendant theory of mind deficits might not even understand the concept. It is reasonable to expect, both from theory and from observations of Sams drafting process, that the sense of audience is going to be distorted at best and can be nonexistent in some situations. Sam wrote for himself and showed considerable confusion when prompted to include more details in his writing because it would be more interesting. I think its fine the way it is, hed say.

Pragmatic Deficits Pragmatics involve a variety of linguistic and communicative moves in writing: language use with a clear understanding of meaning, the ability to sense nuances in language and cohesiveness to

48 name a few. Sams language use is highly literal and his ability to use metaphorical language is severely limited. His writing samples show this literal language use on a word and sentence level, as well as a fact-oriented and underdeveloped text on a global level. Difficulties with cohesiveness are evident in the lack of meaningful transitions or over-reliance on formulaic transitions suggested by the teacher (first, second) between paragraphs, and a sense of jumping from one idea to the next. This jumping from idea to idea can also be related to the theory of mind deficits as the writer doesnt consider the need for background information in order to bring the reader up to speed after all, the writer knows, its obvious, so why explain? Sam also fixated repeatedly on how many sentences he needed to write for each paragraph, losing sight of the big picture, another pragmatic deficit. From our understanding of these pragmatic deficits and from the evidence gathered in this study, we can expect considerable problems in the drafting stage for students with HFA/AS. Some will show up in the process itselffinding words, developing ideasand some will appear textually.

Perseveration As was the case during pre-writing activites, Sam had a tendency to spin in his chair, and as mentioned in the discussion of the physical act of writing, Sam had repetitive movements with his paper, with erasing and with moving the cursor back and forth on the computer screen. Perseverative behaviors are a distraction to the writing process. Unfortunately, these behaviors are not easy to stop for a person with HFA/AS, even when theyve been asked (or even ordered) to stop.

49 Executive Dysfunction The impaired self-monitoring and self-management that fall under the umbrella of executive dysfunction can significantly impede the drafting stage of the writing process. They affect overall project management as well as time management in particular, making the writing process take far more time than would normally be expected. Sams drafting time was very long, with him taking as much as an hour on one brief paragraph. He often lost track of what he was intending to do. When working steadily, he was highly focused and would lose track of time, but if his work rhythm was interrupted, he became highly distractible and found it hard to get back to work. We can certainly infer from our knowledge of this characteristic in HFA/AS and from the observed difficulties in this case that executive dysfunction negatively impacts the writing process.

Special Interests As in the pre-writing stage of the writing process, a students special interest can interfere with drafting as he or she may attempt to incorporate it into the text inappropriately. According to the literature, some HFA/AS students will direct all verbal interactions towards their special interest and we could reasonably infer that some students will do the same in written communication. This inclination could certainly prove puzzling to the teacher lacking knowledge about these disabilities. What could be made of an assigned paper about the California missions that discusses dinosaurs at length? Writing Workshops with Peers In this study, writing workshops with peers did not occur. I have included this stage of the writing process in my analysis because I believe important inferences can be made from extensions of

50 theory about how HFA and AS would likely affect this common pedagogical practice in writing classrooms. Theory of Mind Deficits The ability to act appropriately and effectively in social situations is largely dependent upon the knowledge of how others will view our words and actions. Theory of mind deficits can yield social interactions that are, at best, strained and can be downright disastrous. People with HFA/AS are often described as lacking tact and in a workshop situation with peers, this lack could certainly lead to hurt feelings or harmed relationships, results that could be baffling to the HFA/AS student. Whether these students actually lack empathy or only appear to lack empathy due to their impaired theory of mind and social skills, we could reasonably expect that unmonitored peer workshops could lead to misunderstanding between the HFA/AS student and his or her peers and the effectiveness of the feedback would likely be impaired.

Perseveration Perseverative behaviors can be confusing or even disturbing to others and the inability to control them in the face of peer rejection or judgment can be very frustrating and disheartening to the student with HFA/AS. A close-up social interaction such as a writing workshop can highlight these perseverations and, if unmonitored, could lead to ostracizing behaviors from peers. Conversely, the perseverative behaviors, depending on their nature and severity, could be a distraction or, at least, an annoyance to the others in a workshop group and negatively affect the groups effectiveness. Special Interests

51 The aforementioned tendency of some people with HFA/AS to steer conversations towards their special interest could presumably cause some problems in a workshop situation. Off-topic discussion is distracting, takes time away from useful interactions and could serve to ostracize the student if it was annoying to others. Unfortunately, according to the literature, those people with HFA/AS that have this tendency are often driven to their special interest more so in socially stressful situations. A workshop situation, with its emotionally sensitive nature, its personal interactions and situationally dependent expectations could prove highly stressful for the HFA/AS student. General Developmental Delays Developmental delays in the area of social skills are typical in children with HFA/AS and the social expectations in a workshop environment may be well out of the range of these children. Peer relationships are often strained (or even nonexistent) in school and the close peer interactions required in a workshop may prove overwhelming to the student with HFA/AS. Feedback from the Teacher In this study, three drafts of the assignment received written comments from the teacher, including in-text, marginal and end comments. By way of an interview with the teacher, I also know about incidents of direct instruction and assistance during the writing process between Sam and the teacher. Sam read all of the written comments from the teacher.

Theory of Mind Deficits Teacher comments are sometimes very direct, especially when addressing grammar or usage errors. Sometimes, though, they are more nuanced, often in an attempt to gently guide the students writing

52 progress rather than merely impose their own words or voice on the writing. In reading the teachers comments on the three drafts of the assignment, Sam showed no interest in addressing any of the comments that were conceptual. He completely ignored questions posed by the teacher that were clearly intended to draw out further details in future drafts. He did respond to comments that were direct and in places where the teacher crossed out and rewrote words, phrases or sentences, he seemed relieved to know what the teacher wanted. Theory and evidence point to theory of mind deficits contributing to a genuine block in reading the meaning embedded in indirect comments, suggestions and questions.

Pragmatic Deficits The difficulty in understanding or interpreting teacher comments stems not just from theory of mind deficits, but also from pragmatic deficits. As mentioned earlier, nuanced language is difficult to comprehend for people with HFA/AS and is, in fact, often misinterpreted. The tendency to be linguistically literal is also a hindrance to understanding when reading, especially when the text is not purely fact-based. In Sams case, the teachers commentsthose that were not questions were generally direct and free of nuanced language. This may be due to teacher training that alerts teachers to the linguistic challenges these students face. General Developmental Delays Feedback from teachers comes with expectationsthe teacher expects the student to understand, comprehend, interpret and ultimately use the advice and help given. Delays in social development and language development can place a child with HFA/AS on a different level of ability from his or her peers and the ability to reach those expectations can be negatively impacted. It is my opinion

53 that the expectations from Sams teacher were appropriately gauged to his abilities to respond, largely due to her understanding of HFA and its effects on developmental levels.

Revision Activities In this study, Sam revised the assignment twice. He was asked to do one further revision, but he did not. The first revision involved completion of the assignment because the first draft lacked the final body paragraph and the conclusion and these were added in the second draft. Most other changes in the text were responses to comments from the teacher that addressed errors.

Theory of Mind Deficits Many of the challenges related to theory of mind deficits in the reception of feedback stage also present themselves in the revision stage. Those teacher comments that had to be read, interpreted and evaluated now drive the revision process for most students. The misunderstandings, misinterpretations and outright dismissals of teacher comments can now be manifested in revisions that are inappropriate or that simply miss the point. More importantly, though, is that revision is targeted at a real or imagined audience. The reader has misunderstood, the reader wants more details, the reader doesnt see the connectionsthese problems must be addressed in any meaningful revision. What if you cant imagine that reader? The idea of revising or rewriting so that a reader receives your writing more positively can seem utterly foreign to a writer with HFA/AS. Based upon theoretical implications, the entire endeavor of revision could very likely focus purely on error correctiongetting it right is not subject to the same frustrated communications.

54

Pragmatic Deficits Once again, pragmatic deficits affect the writing process both in the previously mentioned ways and now additionally in the linguistic inflexibility. Rethinking the overall idea of the assignment did not occur to Sam. He wanted to please the teacher, but he found responding to specific comments to be an acceptable revision. Its fine the way it is, was the recurring response to prompts to revise on a more conceptual level. I said what I thought.

Perseveration At any point in the writing process, perseveration is going to get in the way of actual composing for all the reasons outlined above. This applies to composing in the revision stage as well.

Executive Dysfunction Cognitive inflexibility is a hallmark of executive dysfunctionan inability to envision or entertain alternatives. In the revision stage of the writing process, this inflexibility is devastating. At this stage, Sam was deeply discouraged by teacher comments and felt powerless to change the core problems in his text, namely underdevelopment and lack of cohesion. He had, in his eyes, written the assignment and could not understand how completely changing it was either necessary or possible considering the weight of the work on him already. He could see no other way of writing the assignment other than what he had already done.

Special Interests

55 Motivation, for all writers, ultimately stems from interest. If the special interest of a writer with HFA/AS is not included in the writing assignment, motivation may be quite low. This is a hard reality for these children and cannot always be accommodated, however an informed and enlightened teacher can certainly be sensitive to this reality. Again, Sam was able to write about things that interested him (even though they did not involve his special interests per se) and therefore his topics for writing were not frustrated.

Motor Clumsiness The frustrations attendant to motor clumsiness in the writing process should not be downplayed. Skilled and successful writersthose that typically teach others how to write at all levelscan sometimes forget the physicality of writing. That physicality, for a writer struggling with the realities of HFA/AS on the body, can be a tremendous burden. Handwriting is precise and responsive to the most delicate of movements. Typing requires coordination and quick reflexes. Writing, in short, is hardon a most elemental level. Fortunately, many children with HFA/AS learn keyboarding skills and find it to be less of a burden, less of a tax on their motor skills and Sam was one of these children. At the revision stage, particularly because he was not rewriting large portions of the assignment, Sam continued until the revisions suggested on the third draft. At that point, I believe that a combination of factorscognitive, relational and physicalcombined to lead him to abandon the assignment. He had done what he felt he could do and then he did no more.

The Big Picture

56 While working on this research project, I was often asked about my work. What was I studying? What was important about it? I would respond that I was studying the development of writing abilities in children with high-functioning autism and Asperger Syndrome. It was important because children with these disabilities were generally above-average intelligence and were often placed in inclusive classroom settings where they were expected to keep up with their peers, albeit with accommodations. Because I hypothesized that writing presented a unique and very real challenge to these children, I knew that grade levels and classrooms where writing was central had the potential of completely frustrating the goals of both student and teacher. The question that invariably followed was this: What is the difference for these kids? Whats hard about writing for them? Those questions guided my research and I would like to address them in a global fashion now. Whats different? Whats hard? Language is mysterious to a child with HFA/AS. He or she has mastered certain conventions, often on a purely intellectual level and often employing formulas that seem to work whether it be repeating phrases from television shows or falling back on areas of expertise in the hopes of holding others interest. If its not literal, not fact-based, emotional rather than logical, intuitive rather than scientific, well, no ones quite sure what the outcome will be in an interchange. A painful reality for someone that cravesno, needs, requiresorder and certainty. What else? Writing, that physical act of pushing pencil over paper, of moving fingers over a keyboard, is hard because the muscles and the reflexes and the coordination of both just dont always work as they should. Is that it? No. Writing is, by its very nature, a communicative act, a social interaction in almost all situations, but always in the school setting. And social situations, social communication and the intuitive and interactional moves that are required to be good at them are puzzling at best for a child with HFA/AS. At worst,

57 they are a garbled mess. Social cues are missed, intuitive meanings are lost and the thought of meeting a readers needs is not ignoredit never enters the mind. Could there be more? Yes. The management skills needed to orchestrate a writing project are deficient so schedules and instructions are misplaced, pencils are yet to be found and time seems to slip away while too many minutes float away thinking about a favorite subject or spinning clockwise in a favorite chair. Writing is hard for these children. Not because they are lazy or slow or lacking in ideas or stubborn or just plain weird. Its hard because the components of the writing process all present their unique challenges to them and the accommodations presented, if at all, are seldom enough to address the magnitude of those challenges. By presenting this picture, I do not mean to say that the intersection of writing and HFA/AS is doomed to failure. I believe that if there are ideas to be communicated, they can make their way to paper or screen, one way or another. The questions raised by this research project and the hypotheses asserted about the writing process of these children screams for further investigation and the offering of meaningful and effective interventions. I havent the answers. But I know answers are needed. Children with HFA/AS are included in regular classrooms across the nation and their numbers are growing. They are in specialized classrooms, special programs, special schools. In every situation, every child struggling with the realities of HFA/AS is nevertheless called upon to write. And they need teachers that understand the challenges, consider the options of accommodations and exceptions and hopefully can provide a sympathetic audience to these writers even if their needs as an audience are inadvertently neglected. Because HFA/AS affects social interaction and some of its characteristics are, in the words of AS expert Tony Atwood, downright odd, breakdowns in communication are not unusual. They just must not be accepted or ignored.

58

Implications of This Case Coming to literacy is an amazing process. The complexities are staggering. And thats just for the so-called normal child going through the normal stages of development. Learning to write involves everythingthe body, soul and mind, all integrated, with each new skill learned or acquired hopefully building on all prior skills. Its remarkable that most of us learn to write and to comprehend the social implications of writing at all. The anthropologist in each of us can strip away the conventions that blind us to the strangeness of it all and hear the invitation to written literacy: Okay, children, take these bits of carbon, press the carbon on these thin slivers of wood, and make lines and squiggles that will tell others what youre thinking. It is, of course, the telling others what were thinking that ultimately dictates so many decisions and negotiations that occur during the writing process. It also presents the greatest challenge. As Vygotsky (1978) so eloquently states, Written language becomes direct symbolism that is perceived in the same way as spoken language. We need only try to imagine the enormous changes in the cultural development of children that occur as a result of mastery of written language and the ability to read-and of thus becoming aware of everything that human genius has created in the realm of the written word (p. 116). Yes, we need only try to imagine. Our awareness, as educators, of this challenge for every child makes the sympathy for the child who exhibits difference in development all the more acute. Sympathy, of course, is not enough. Different children need different tools; which tools, how to introduce them and how to teach children to use themthese are the research questions. Different children are on different developmental trajectories; what to expect and when, how to ascertain what is known and how to

59 build on that knowledge in order to lead the child to new knowledge-these are more research questions. The field is immense and largely uncharted. The Constructed Nature of Disability This immense and uncharted field is hindered by a lack of awareness, however, or perhaps a lack of humility. The fact is, terms ascribed to difference, terms like learning disability and the existence of various instruments utilized by specialists to assess and detect these disabilities argue for a pure, scientific knowledge about differences in childrens learning. The socially constructed nature of learning disabilities is invisible. Nunkoosing, in his article, Constructing Learning Disability (2000), points out that the assumption [is] that the problem of learning disability is located inside the person, and not in social arrangement which then leads to deficit thinking (p. 55). He points out that: We take it for granted that degrees of disability can be measured or described as mild, moderate or severe; that the causes of some intellectual impairments could be found in peoples genes, their physiology, anatomy, cognition, or their early life experiences. This taken for granted knowledge allows us to postulate theories about peoples thinking, problem solving, behavior or other constructed concepts such as self-esteem. The meaning that is shared...is created through language, social interaction and culture [and are] the product of specific contexts in professions...Thus what we take to be personal understanding has actually been learned and passed on through our education. (p. 50) This is not to say that there are no such things as syndromes or developmental differences or collections of characteristics that occur in small percentages of the population; obviously, as human beings, we share certain traits and difference is noticeable and, in many cases, it is useful to identify

60 it and offer special accommodation or helps. The problem, I believe, lies in embedded language that is loaded and implies knowledge of things we simply cannot know. The prefix dis- means not; why are we so willing to commit to a supposedly scientific, clinically proven (social) fact that certain children are not able to learn or not able to develop? Isnt that what the terms learning disability and developmental disability really mean? This sort of labeling, at its heart, is hierarchical, culturally situated (a child unable to tie his own shoes in a culture where there are no shoelaces is hardly developmentally disabled) and potentially harmful. Ultimately, the term development proves to be problematic. While it can, in some cases, capture a sense of movement that is at once recursive and fluid and rich, it is often used to describe a linear, flat movement from point A to point B. It implies, again, a knowable, concrete thing, something that can be described, charted, graphed and monitored. A look at any first years of life book written for anxious parents will describe developmental milestones and attach ages to them. Vygotsky (1978) writes of children moving along a linear trajectory of development in writing, from gestures to symbolism in play, in drawing and finally in writing. Britton (1975) describes a childs development of writing abilities moving through various audience categories, one after another. These models may prove helpful when observing and teaching most children, and they may provide a means of identifying and perhaps helping children who have specific difficulties. In fact, though, as Applebee (2000) points out, within the U.S., development, with a few notable exceptions (Heath, 1983; Delpit, 1995; Dyson, 1989, 1993; Gee, 1996), has meant the development of mainstream, middle class students (p. 8). Dyson concurs, adding that in linking narrowly defined normality with the ethics of care, developmental visions have masked the social and cultural diversity of developmental pathways and endgoals, made invisible their own ideological

61 commitments (1995, p. 5). All children are unique and their development is often fraught with regressions and surges, relearning and unlearning, all of which contribute to genuine learning. This realization aids not only effective teaching and classroom practice, but could foster a sense of understanding and tolerance towards difference that is sorely lacking in our present culture. Finally, I believe that attending to the unique needs of AS and HFA children in the teaching of writing and the study of the development of writing abilities can perhaps open up the notion of what is right instruction, what is normal development and what are reasonable expectations. As Russell (1999) points out, the entire foundation of the process movement in composition rests on assumptions of homogeneity in students development, ability, and needs, and that what is needed is a paradigm shift away from writing process and towards the concept of writing processes. Widely held assumptions such as the positive nature of all collaborative group work, the deemphasizing of direct instruction in writing strategies, or even the necessity of cursive writing in elementary school warrant examination in light of difference. We owe it to the children to attempt to answer these questions, to open up the world of human genius to them, inviting them to participate in the conversation with their own unique insights and approaches.

62

References Applebee, A. (2000). Alternative models of writing development. In R. Indrisano & J. Squire (Eds.), Writing: Research/theory/practice. Newark, DE: International Reading Association. Attwood, T. (1998). Asperger's syndrome: A guide for parents and professionals. Philadelphia, PA: Jessica Kingsley Publishers Ltd. Avery, C. (1987). Traci: A learning-disabled child in a writing-process classroom. In G. Bissex & R. Bullock (Eds.), Seeing for ourselves: Case-study research by teachers of writing. Portsmouth, NH: Heinemann. Baron-Cohen, S. (2003). The essential difference. New York: Basic Books. Baron-Cohen, S. (1995). Mindblindness: An essay on autism and theory of mind. Cambridge, MA: The MIT Press. Bashe, P.R. & Kirby, B. (2001). The Oasis guide to asperger syndrome. New York: Crown Publishers. Bauer, S. (1996). Asperger Syndrome. Paper on the Online Asperger Syndrome Information and Support web site. Retrieved February 16, 2001 from http://www.udel.edu/bkirby/asperger/as_thru_years.html. Beaufort, A. (2000). Learning the trade: A social apprenticeship model for gaining writing expertise. Written Communication, 17 (2), 185-223. Bissex, G. (1980). GNYS at work: A child learns to write. Cambridge, MA: Harvard University Press. Bissex, G. (1987). Why case studies? In G. Bissex & R. Bullock (Eds.), Seeing for ourselves:

63 Case-study research by teachers of writing. Portsmouth, NH: Heinemann. Blakeslee, A. (1997). Activity, context, interaction and authority: Learning to write scientific papers in situ. Journal of Business and Technical Communication, 11(2), 125-169. Brandt, D. (1990). Literacy as involvement: The acts of writers, readers, and texts. Carbondale, IL: Southern Illinois University Press. Britton, J., Burgess, T., Martin, N., McLeod, A., & Rosen, H. (1975). The development of writing abilities (11-18). New York: Macmillan Education. California Department of Developmental Services (2003). Autism spectrum disorders: Changes in the California caseload; An update: 1999 through 2002. Sacramento, CA: California Health and Human Services Agency. California Department of Education (1998). English-language arts content standards for California public schools, kindergarten through grade twelve. Sacramento, CA: CDE Press. Dunn, P. (1995). Learning re-abled: The learning disability controversy and composition studies. Portsmouth, NH: Boynton/Cook Publishers, Inc. Dyson, A. H. (1995). Writing children. Written Communication, 12 (1), 4-46. Emig, J. (1971). The Composing Processes of Twelfth Graders. Urbana, IL: National Council of Teachers of English. Englert, C. S. (1992). Writing instruction from a sociocultural perspective: The holistic, dialogic, and social enterprise of writing. Journal of Learning Disabilities, 25 (3), 153-172. Flower, L. & Hayes, J. (1981). A cognitive process theory of writing. College Composition and Communication, 32 (4), 365-387. Flower, L. (1994). The construction of negotiated meaning: A social cognitive theory of writing.

64 Carbondale, IL: Southern Illinois University Press. Fombonne, E. (2003). Epidemiological surveys of autism and other pervasive developmental disorders: An update. Journal of Autism and Developmental Disorders, 33 (4), 365-382. Frea, W. (1995). Social-communicative skills in higher-functioning children with autism. In R. Koegel & L. Koegel (Eds.) Teaching children with autism. Baltimore, MD: Paul H. Brookes Publishing Co. Frith, U. (1991). Asperger and his syndrome. In U. Frith (Ed.), Autism and Asperger syndrome. New York: Cambridge University Press. Frith, U. (1989). Autism: Explaining the enigma. Malden, MA: Blackwell Publishers Inc. Gee, J. P. (1989). Literacy, discourse and linguistics. Journal of Education, 171(1), 5-17. Gillberg, C. (1989). Asperger syndrome in 23 Swedish children. Child Neurology, 3, 520-31. Grandin, T. (1995). Thinking in pictures and other reports from my life with autism. New York: Vintage Books. Gunn, B. K., Simmons, D. C., & Kameenui, E. J. (1995). Emergent literacy: Synthesis of the research. Eugene, OR: National Center to Improve the Tools of Educators. Retrieved October 23, 2002, from http://idea.uoregon.edu/~ncite/documents/techrep/tech19.html Harris, K., Schmidt, T., & Graham, S. (1997). Every child can write: Strategies for composition and self-regulation in the writing process. In Teaching ever child every day: Learning in diverse schools and classrooms. Newton Upper Falls, MA: Brookline Books. Hayes, J. (1996). A new framework for understanding cognition and affect in writing. In C. M. Levy & S. Ransdell (Eds.), The science of writing: Theories, methods, individual differences Developmental Medicine and

65 and applications. Mahwah, NJ: Lawrence Erlbaum Associates. The H.E.L.P. Group. Village Glen: A place where students belong...fostering social and communication skills. Pamphlet, undated. Hooper, S. & Bundy, M. B. (1998). Learning characteristics of individuals with Asperger syndrome. In E. Schopler, G. Mesibov, L. Kunce (Eds.), Asperger syndrome or highfunctioning autism? New York: Plenum Press. Jones, D. & Christensen, C. (1999). Relationship between automaticity in handwriting and students' ability to generate written text. Journal of Educational Psychology, 91 (1), 44-49. Klin, A., Sparrow, S., Marans, W., Carter, A., & Volkmar, F. (2000). Assessment issues in children and adolescents with Asperger syndrome. In A. Klin, F. Volkmar, & S. Sparrow (Eds.), Asperger syndrome. New York: The Guilford Press. Klin, A. & Volkmar, F. (2000a). Diagnostic issues in Asperger syndrome. In A. Klin, F. Volkmar, & S. Sparrow (Eds.), Asperger syndrome. New York: The Guilford Press. Klin, A. & Volkmar, F. (2000b). Treatment and intervention guidelines for individuals with Asperger syndrome. In A. Klin, F. Volkmar, & S. Sparrow (Eds.), Asperger syndrome. New York: The Guilford Press. Klin, A., Volkmar, F., & Sparrow, S. (Eds.). (2000). Asperger syndrome. New York: The Guilford Press. Koegel, L. (1995). Communication and language intervention. In R. Koegel & L. Koegel (Eds.) Teaching children with autism. Baltimore, MD: Paul H. Brookes Publishing Co. Koegel, R., Koegel, L., Frea, W. & Smith, A. (1995). Emerging interventions for children with autism: Longitudinal and lifestyle implications. In R. Koegel & L. Koegel (Eds.) Teaching

66 children with autism. Baltimore, MD: Paul H. Brookes Publishing Co. Kunce, L. & Mesibov, G. (1998). Educational approaches to high-functioning autism and Asperger syndrome. In E. Schopler, G. Mesibov, L. Kunce (Eds.), Asperger syndrome or highfunctioning autism? New York: Plenum Press. Landa, R. (2000). Social language use in Asperger syndrome and high-functioning autism. In A. Klin, F. Volkmar, & S. Sparrow (Eds.), Asperger syndrome. New York: The Guilford Press. Lave, J. & Wenger, E. (1991). Situated learning: Legitimate peripheral participation. New York: Cambridge University Press. Lindemann, E. (1995). A rhetoric for writing teachers (3rd ed.). New York: Oxford University Press. Los Angeles Unified School District. (2000). A parents guide to special education services (including procedural rights and safeguards). Los Angeles: LAUSD Division of Special Education. Luria, A. R. (1979). The making of mind (M. Cole & S. Cole, Eds.). Cambridge, MA: Harvard University Press. MacNealy, M. S. (1999). Strategies for empirical research in writing. Boston, MA: Allyn & Bacon. McCarthy, L. P. (1987). A stranger in strange lands: A college student writing across the curriculum. In Bazerman & Russell (Eds.), Landmark essays on writing across the curriculum. Davis, CA: Hermagoras Press. Merriam, S. (1998). Qualitative research and case study applications in education. San Francisco, CA: Jossey-Bass Publishers.

67 Mestel, R. (2003, May 13). California autism cases nearly double in 4 years. [Electronic version]. Los Angeles Times. Retrieved May 14, 2003 from http://www.latimes.com/la-sciautism13may13,1,3187884.story. Myles, B. S. & Simpson, R. (2002). Asperger syndrome: An overview of characteristics. Focus on Autism and Other Developmental Disabilities, 17 (3), 132-138. Nash, J. M. (2002, May 6). The secrets of autism. Time, 46-56. Newcomer, P. & Barenbaum, E. (1991). The written composing ability of children with learning disabilities: A review of the literature from 1980-1990. Journal of Learning Disabilities, 24 (10), 578-593. Nunkoosing, K. (2000). Constructing learning disability. Journal of learning disabilities (an online journal), 4 (1), pp. 49-62. Odell, L., & Goswami, D. (1985). Writing in nonacademic settings. New York: Guilford Press. Ozonoff, S. (1998). Assessment and remediation of executive dysfunction in autism and Asperger syndrome. In E. Schopler, G. Mesibov, L. Kunce (Eds.), Asperger syndrome or highfunctioning autism? New York: Plenum Press. Paul, S. (2000). Students with disabilities in higher education: A review of the literature. College Student Journal, 34 (2), 200-210. Poindexter, C. C., & Oliver, I. R. (1998/1999, December/January). Navigating the writing process: Strategies for young children. Reading Teacher, 52 (4), 420-423. Rogers, J. (2000). Invitations to literacy: A case study of a child with autism. Unpublished doctoral dissertation, University of Georgia. Russell, D. (1999). Activity theory and process approaches: Writing (power) in school and society.

68 In T. Kent (Ed.), Post-process theory: Beyond the writing-process paradigm. Carbondale, IL: Southern Illinois University Press. Sacks, O. (1995). An anthropologist on Mars. New York: Vintage Books. Sacks, O. (1970). The man who mistook his wife for a hat and other clinical tales. New York: Touchstone. Safran, S. (2001). Asperger syndrome: The emerging challenge to special education. Exceptional Children, 67 (2), 151-160. Selzer, J. (1983). The composing processes of an engineer. College Composition and Communication, (34), 178-187. Siegel, B. (2003). Helping children with autism learn: Treatment approaches for parents and professionals. New York: Oxford University Press. Siegel, L. (2001). The complete IEP guide: How to advocate for your special ed child (2nd ed.). Berkeley, CA: Nolo Press. Smith, I. (2000). Motor functioning in Asperger syndrome. In A. Klin, F. Volkmar, & S. Sparrow (Eds.), Asperger syndrome. New York: The Guilford Press. Street, B., Venezky, R., & Wagner, D. (1999). Literacy: An international handbook. Boulder, CO: Westview Press. Tager-Flusberg, H. (1994). The relationship between language and social cognition: Lessons from autism. In Y. Levy (Ed.), Other children, other languages: Issues in the theory of language acquisition. Hillsdale, NJ: Lawrence Erlbaum Associates. Tantam, D. (2000). Adolescence and adulthood of individuals with Asperger syndrome. In A. Klin, F. Volkmar, S. Sparrow (Eds.), Asperger syndrome. New York: The Guilford Press.

69 Twachtman-Cullen, D. (1998). Language and communication in high-functioning autism and Asperger syndrome. In E. Schopler, G. Mesibov, L. Kunce (Eds.), Asperger syndrome or high-functioning autism? New York: Plenum Press. Vygotsky, L. (1986). Thought and language (A. Kozulin, Trans. & Ed.). Cambridge, MA: The MIT Press. Vygotsky, L. S. (1978). The prehistory of written language. In Mind in society: The development of higher psychological processes (M. Cole, V. John-Steiner, S. Scribner & E. Souberman, Eds.) (pp. 105-119). Cambridge, MA: Harvard University Press. Vygotsky, L. S. (1993). The collected works of L. S. Vygotsky, volume 2: The fundamentals of defectology (Abnormal psychology and learning disabilities) (J. Knox & C. Stevens, Trans., R. Rieber & A. Carton, Eds.). New York: Plenum Press. Wertsch, J. (1998). Mind as action. New York: Oxford University Press. Wing, L. (1981). Asperger syndrome: A clinical account. Psychological Medicine, 11, 115-129. Wing, L. (1991). The relationship between Aspergers syndrome and Kanners syndrome. In U. Frith (Ed.), Autism and asperger syndrome. New York: Cambridge University Press. Wood, M. (1995). Parent-professional collaboration and the efficacy of the IEP process. In R. Koegel & L. Koegel (Eds.) Teaching children with autism. Baltimore, MD: Paul H. Brookes Publishing Co.