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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.

Sam‘s 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

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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 son‘s 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 son‘s 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

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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 &

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Kameenui (1995), early experiences with print and interaction with adults modeling literate

activities strongly influence a child‘s 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. Britton‘s approach to writing was purely curricular, however,

and did not really address the development of writing abilities on an individual level. Rather, a

child‘s 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 Dunn‘s 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

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Britton‘s 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 one‘s 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

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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 Down‘s 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

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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

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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 wouldn’t 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 ―Kanner‘s autism‖ from the then-current practice of diagnosing these children with

childhood psychosis. Kanner‘s 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‖

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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 Kanner‘s 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 Kanner‘s subjects, but with significant

differences. While Asperger‘s 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,

Asperger‘s children ―developed speech before school age, typically had large vocabularies and

reasonable grammar‖ where Kanner‘s 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

culture–unconventional, unorthodox, strangely ‗pure‘ and original‖ (p. 252).

In the decades following these published papers, Kanner‘s ideas about autism drew attention

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from clinicians and researchers while Asperger‘s languished in postwar Europe, largely forgotten.

Frith (1991) rightly points out that the word ―autism‖ tends to ―conjure up Leo Kanner‘s memory‖:

―Kanner‘s 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 Hoffman‘s 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 Rimland‘s book, Infantile Autism, in 1964 (p. 303).

Asperger‘s 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 ―Asperger‘s Syndrome‖

and who characterized the syndrome by a ―triad‖ of impairments affecting social interaction,

communication and imagination (Wing, 1981). Wing outlines and elaborates on Asperger‘s

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

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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;

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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 author‘s 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

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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 children‘s literacy learning without making sense of children‘s interactive

lives, the who, what, where, why, and when of their language use.‖ (Dyson, 1995, p. 36). A

writer‘s 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

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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 person‘s ability to communicate intuitively and to effectively ―read‖ other people‘s

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.

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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 late-

developing 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

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The study described in this article draws on a four-week study in which I examined Sam‘s

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 Sam‘s

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, Sam‘s language arts teacher. Lisa‘s interview addressed Sam‘s

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 Sam‘s 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

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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 individual‘s 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 discipline‘s 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 Emig‘s (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

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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 son‘s 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

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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 subject‘s

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 subject‘s 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 I‘d just met or didn‘t 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 parent‘s 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

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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 don‘t just wonder. I‘m not just curious. I need to know. For my child‘s 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 I‘m trying to study.

Context

The context of this study is twofold: first, the study‘s 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 wasn‘t

normal–-it wasn‘t 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 Sam‘s 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. Dyson‘s (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. ―He‘ll grow out of it,‖ she said. Sam‘s 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

don‘t 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, Sam‘s 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, Sam‘s 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 teacher‘s 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. Barry‘s assessments: Sam was lacking tact and didn‘t 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 teacher‘s 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...‖ Sam‘s

excruciatingly slow writing process was now more of a handicap than ever before.

At home, I began to observe, as a researcher might, Sam‘s 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 he‘d left out letters, or erase and rewrite sentences because he‘d 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 didn‘t want

to do it, even when he‘d 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 Sam‘s 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 didn‘t get the answers wrong on classroom tests.

He simply didn‘t answer all the questions. Sometimes he wouldn‘t 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 district‘s 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 Parent’s Guide, 2000, p. 4). In Sam‘s 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, Sam‘s 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 Sam‘s 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 Sam‘s 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 doesn‘t participate in the activities of the classroom, usually choosing to

pursue things on his own terms. ―I don‘t 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 disability–the 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. Sam‘s 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 Sam‘s 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

Sam‘s 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 he‘s 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 Sam‘s

characteristics and behaviors, she believed he may have something called Asperger Syndrome. I

had never heard of it. ―I‘ll send you some materials on it,‖ she said. ―We should have your son

evaluated.‖

The Diagnosis of High-Functioning Autism

People with Asperger’s 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 Sam‘s 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 still–and continue to be–serious. 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 high-

functioning 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 person‘s 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. Sam‘s academic progress was directed by an IEP

prepared by the school‘s director, Sam‘s 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.‖ Sam‘s 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 newspaper–requires 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. ―It‘s five paragraphs,‖ he said, then

groaned. ―It‘s 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. ―I‘ll never finish,‖ Sam said. ―It doesn‘t matter,‖ I said. ―I

told your teachers that I wasn‘t 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, let‘s start with the next

paragraph. Don‘t worry about how many paragraphs you need in all,‖ I said. Sam did not respond.

―Let‘s go out to the kitchen. You‘ll 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 you‘ll 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. Sam‘s 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 couldn‘t know about the

things he‘d already thought of since I hadn‘t read what he wrote–a sign of his pragmatic difficulty.

He said he had already thought of ―no homework‖–-an understandable wish under the

circumstances.

T: Well, let‘s brainstorm.

N: Why don‘t you just tell me?

T: Because it‘s your paper.

N: [groan] I‘m never going to finish.

T: What would be good about not going to school?

N: I don‘t remember.

T: Do you like waking up early to get ready for school?

N: No.

T: Well, there‘s one thing.

N: 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: I need one more thing.

T: Why don‘t you think of things you don‘t like about school?

N: I already put ―no class work.‖

T: What about something you can’t do or have because you‘re at school?

N: 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 couldn‘t 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, that‘s 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. Can‘t

change it. Then I‘ll 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 Sam‘s 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 what‘s there.‖ I asked what she felt Sam‘s 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 I‘m 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, Sam‘s 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 wasn‘t 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 it‘s 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 project–some 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

Pragmatic

Deficits

Perseverative

Behaviors

Writing

Workshops

w/ Peers

Social skills

in groups are poor Lack of

empathy impairs

feedback

Overly

literal communication impairs peer

interaction

Behaviors

can interefere with peer interaction &

cause annoyance

Feedback

from

Teacher

Difficulty in

―reading‖ what

teacher means unless very

direct

Possible lack

of understanding of

written feedback

Revision

Activities

Revision for

an audience‘s increased understanding

seems foreign

General

linguistic difficulty and inflexibility

Difficulty in

getting to and staying on task due to distraction

Pre-Writing

Activities

Difficulty in

interpreting the intent of the assignment

Conceptual

links are often weak General linguistic difficulty

Difficulty in

getting to and staying on task due to distraction

Physical Act

of Writing

Behaviors

involving hands or fingers can interfere Perfectionism

Drafting—

Audience &

Purpose

Sense of

audience is distorted or nonexistent

Difficulty

with metaphorical language Impaired

cohensiveness

Difficulty in

getting to and staying on task due to distraction

Executive

Dysfunction

Planning

abilities often severely impaired

Getting

materials

organized is difficult

Finding

needed materials (pencil, papers) can be

difficult

Impaired

self-monitoring & management affect time &

fluency

Deficits in

cognitive flexibility impacts ability to

entertain alternatives

Special

Interests

Student may

insist on special interest in writing or steer

subject to that

interest

Student may

insist on special interest in writing

Tendency to

steer conversations to special interest

Lack of

motivation if paper is not related to interest

Motor

Clumsiness

Coordination

needed for writing can be quite poor

Frustration

can cause student to abandon the

assignment

Developmental

Delays

Speech delays

can contribute to linguistic immaturity or lack

of confidence

Fine motor

skills needed for writing often delayed

Social skills

may be age-delayed & affect peer relations

Student may

not be ready to

reach teacher‘s expectations for

grade level

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 surroundings–in this case, a child diagnosed with HFA at age nine with a well-

educated 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 arise–problems 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 sophistication–his 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 verbal–another common characteristic of children with

HFA–and 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 types—handwriting 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 tools—paper, pencil—and in managing

the paperwork—assignment 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.

Drafting—Audience & Purpose

In this study, Sam wrote three drafts of the assignment. The first draft was two handwritten pages

and was incomplete—it 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 subject‘s 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 person—to ―read‖ their minds and comprehend that reading—then 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 Sam‘s 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 it‘s fine the way it is,‖ he‘d 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. Sam‘s 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

doesn‘t consider the need for background information in order to ―bring the reader up to speed‖—

after all, the writer knows, it‘s 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 itself—finding words, developing ideas—and 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 they‘ve been asked (or even ordered) to

stop.

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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. Sam‘s 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 student‘s 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 group‘s 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 student‘s writing

52

progress rather than merely impose their own words or voice on the writing. In reading the

teacher‘s 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 Sam‘s case, the teacher‘s comments—those 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 expectations—the 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 Sam‘s 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 doesn‘t see the connections—these problems must be addressed in any

meaningful revision. What if you can‘t 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 correction—getting 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. ―It‘s 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 dysfunction—an 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 writers—those that typically teach others how to write at all levels—can

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 hard—on 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 factors—cognitive, relational and physical—combined 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?

What‘s hard about writing for them? Those questions guided my research and I would like to

address them in a global fashion now. What‘s different? What‘s 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 it‘s

not literal, not fact-based, emotional rather than logical, intuitive rather than scientific, well, no

one‘s quite sure what the outcome will be in an interchange. A painful reality for someone that

craves–no, needs, requires–order 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 don‘t 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 reader‘s needs is not ignored–it 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.

It‘s 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 haven‘t 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 that‘s just

for the so-called ―normal‖ child going through the ―normal‖ stages of development. Learning to

write involves everything–the body, soul and mind, all integrated, with each new skill learned or

acquired hopefully building on all prior skills. It‘s 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 you‘re thinking.

It is, of course, the telling others what we‘re 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 them–these 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

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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 children‘s 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

people‘s genes, their physiology, anatomy, cognition, or their early life experiences. This

taken for granted knowledge allows us to postulate theories about people‘s 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? Isn‘t 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

child‘s 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 de-

emphasizing 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

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