ORIGINAL RESEARCH ARTICLE

published: 16 November 2012

INTEGRATIVE NEUROSCIENCE doi: 10.3389/fnint.2012.00107

An exploration of sensory and movement differences from

the perspective of individuals with autism
Jodi Robledo 1*, Anne M. Donnellan 2 and Karen Strandt-Conroy 3
1
School of Education, California State University San Marcos, San Marcos, CA, USA
2
School of Leadership and Education Sciences, University of San Diego, San Diego, CA, USA
3
Parkview School District, Orfordville, WI, USA

Edited by: Parents, teachers, and people who themselves experience sensory and movement
Elizabeth B. Torres, Rutgers differences have consistently reported disturbances of sensation and movement
University, USA
associated with autism. Our review of the literature has revealed both historical and
Reviewed by:
recent references to and research about sensory and movement difference characteristics
Antonio Pereira, Federal University
of Rio Grande do Norte, Brazil and symptoms for individuals with autism. What is notably infrequent in this literature,
Gary W. LaVigna, Institute for however, is research that highlights the perspective of the individual with autism. If
Applied Behavior Analysis, USA we wish to truly understand the experience of sensory and movement differences for
Trevor McDonald, Education
Associates Inc., USA
individuals with autism, we must explore their experiences and perspectives. This study
presents a qualitative analysis of more than 40 h in-depth inquiry into the lives of five
*Correspondence:
Jodi Robledo, School of Education, individuals with the autism label. Data were sorted into six categories: perception, action,
California State University San posture, emotion, communication, and cognition. The insights into sensory and movement
Marcos, 333 S. Twin Oaks Valley differences and autism offered by these individuals was illuminating. We found that the
Road, San Marcos, CA 92096-0001,
USA.
data strongly supported the presence of disruption of organization and regulation of
e-mail: [email protected] sensory and movement differences in the lived experience of these participants with
autism. The present data suggests that in autism this disruption of organization and
regulation is amplified in terms of quantity, quality, intensity, and may affect everyday life.
These data contribute to a more expansive view of autism that incorporates the possibility
that autism is a disorder that affects motor planning, behavior, communication, the sensory
motor system, and the dynamic interaction of all of these.
Keywords: autism, sensory and movement differences, first-person accounts

INTRODUCTION of papers by Donnellan, Leary, and Hill spells out in detail the
The history of autism reflects the prevailing understandings and effect this dichotomy has had on our understanding of autism
misunderstandings about human development and communi- (Hill and Leary, 1993; Donnellan and Leary, 1995; Leary and
cation that characterized professional writings in psychology, Hill, 1996; Leary and Donnellan, 2012). They posit that assuming
psychiatry, and special education over the past 60 years. In the mind can be studied separately from body ignores the impor-
absence of a clear understanding of cause or symptoms, many tance of felt experience on the development of social interaction,
definitions and theories about autism have been developed. Most communication, and behavior. Even in the more recent research
often the descriptions offered by the professionals pay little atten- that studies the body (motor differences) and autism, there is
tion to the experience of people who live with autism. little understanding of the potential affect of these differences
Seventy years after Leo Kanner’s original paper on autism on social, communication, and behavioral functioning (see Leary
(1943), the orthodox “scientific” thinking is that autism is a and Donnellan, 20121).
separate psychiatric disorder, reliably distinguishable from other Leary et al. (1999, as cited in Donnellan, 2006) have defined
human conditions, likely the result of absence or error in or a sensory and movement difference as a difference, interfer-
affecting the social brain. Moreover, the abilities of the per- ence or shift in the efficient, effective utilization and integration
son with autism can be reliably and validly determined through of movement; a disruption in the organization and regulation
our psychological and behavioral assessments (e.g., DSM-IV-TR, of perception, action, posture, language, speech, thought, emo-
American Psychiatric Association, 2000). This view draws on a tion, and/or memory. Typically, the word “movement” refers to
dualistic tradition in psychology and psychiatry that separates observable actions, such as posture, muscle tone, head and eye
mind and body (seeRogers, 1990; Damasio, 1994). It leaves out movements, facial expression, vocalization, speech, whole body
a long and rich history of writing and research which suggests movements, reaching, gesturing, running, and walking. Here, the
that individuals with a variety of disabilities or disorders may,
in fact, be experiencing differences in their sensory, motor, per-
ceptual, and other systems, which confound and confuse the 1 For additional references of sensory and movement literature see Leary and
picture (e.g., Kahlbaum, 1874/1973; Bleuler, 1911/1950). A series Hill, 2012, pp.101–115

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Robledo et al. First-hand accounts of sensory-movement differences

use of the word movement is consistent with research that consid- 2005; Goddard and Goddard, 2012). Sue Rubin, a non-verbal
ers internal mental processes of sensory perceptions (touch, taste, individual with autism who independently uses augmentative and
smell, vision, hearing, and proprioception), language, thoughts, alternative communication described her difficulty with initiating
and emotions as aspects of human movement. speech: “I rarely find the strength in my autistic capabilities to ini-
A review of published first-hand accounts of autism and tiate a conversation. There may be times where something pertinent
research studies with participants with autism revealed numer- eats away at me until either I find a moment where my body and
ous references to sensory and movement differences in the areas mind coincide and I am able to go get a device to converse with.”
of perception, action, emotion, communication, and cognition. (Rubin, in Biklen, 2005, p. 85)
Each area will be briefly described below. Individuals with autism in first-hand accounts also described
Perceptual differences, such as differences in hearing, vision, differences in cognition (e.g., Jolliffe et al., 1992; Williams, 1994;
smell, taste, proprioception, and synesthesia were all noted Grandin, 1995). Temple Grandin (1995) outlined her thought
in numerous published first-hand accounts (e.g., White and process in her book entitled “Thinking in Pictures.” She explained
White, 1987; Cesaroni, 1990; Barron and Barron, 1992; Grandin, that she translates spoken and written words into “full-color
1992, 1995; Williams, 1992, 1994; McKean, 1994; Blackman, movies, complete with sound, which run like a VCR tape” (p. 19)
1999; Mukhopadhyay, 2000; Rubin, in Biklen, 2005). Tito in her head. She labeled this technique as visual thinking. To cre-
Mukhopadhyay described his perceptual experiences as a “frag- ate new images, she takes parts of “video memories” (p. 21). To
mented world perceived through isolated sense organs” (2000, p. recall a memory she replays various video memory tapes until
74). Jim, a research participant in a study conducted by Cesaroni she finds the information she is searching for. Her videos, how-
indicated, “Sometimes I know that something is coming in some- ever, sometimes trigger a series of free associations. Sometimes
where, but I can’t tell right away what sense it’s coming through” certain words can also trigger the incorrect association and
(Cesaroni, 1990, p. 74). she can look for an incorrect video, which she says leads to
First-hand accounts of autism also revealed challenges with misunderstandings.
controlling, executing, and combining action or movements It is essential that the exploration of autism include sensory
(Volkmar and Cohen, 1985; Cesaroni, 1990; Grandin, 1992; and movement differences and involve the people who experi-
Williams, 1992, 1994; McKean, 1994; Hale and Hale, 1999; ence autism first-hand for a number of reasons: (1) professionals
Mukhopadhyay, 2000; Frugone, in Biklen, 2005; Mukhopadhyay, investigating autism from a perspective that separates mind and
in Biklen, 2005; Goddard and Goddard, 2012). Alberto Frugone body may have overlooked sensory and movement differences,
described his challenges with action and movements: “Right from and/or their possible effect on behavior; (2) published first-hand
the beginning of an action, I was conscious of my inability to access accounts of autism suggest that this is a fruitful area for inves-
motor planning and I was lost in an unacceptable motor silence” tigation; (3) in studying autism we need to elicit information
(Frugone, in Biklen, 2005, p. 190). Charles Hale described his from one of the most valuable resources—people with the label
difficulty with actions and movements: of autism.
Most of the disciplines studying autism have investigated
I think my movement disorder is most apparent in the fact that I am
autism through clinical research looking at significant group
unable to respond to someone or something, when my intelligence differences. This pursuit has brought valuable information but,
would tell me to respond in an appropriate manner. For instance, in addition, has brought about confusing, confounding, and
when I should be smiling, sometimes I know that I am not smiling contradictory results. Researchers are beginning to explore the
but may be even frowning. This causes me a great deal of pain and experience of autism through a critical disability perspective by
makes me look as though I am not comprehending when, in fact, I am including the perspective and experience of people with autism
crying to respond in an appropriate manner. (Hale and Hale, 1999, (e.g., Strandt-Conroy, 1999; Broderick and Kasa-Hendrickson,
p. 32) 2001; Biklen, 2005; Robledo and Donnellan, 2008). Biklen (2005)
summarized the importance of qualitative methodologies in a
First-hand accounts of autism described challenges with reg- field that has been dominated by positivist research:
ulating emotions (e.g., Cesaroni, 1990; Barron and Barron, 1992;
Jolliffe et al., 1992; Williams, 1992, 1994). Sean Barron described In one central way, their accounts diverge dramatically from the
that he could not control his emotions and he was terrified of his prevailing clinical literature . . . Their richness suggests the dan-
“feelings and temperament” (Barron and Barron, 1992, p. 118). ger of privileging other forms of research about autism as more
Many first-hand accounts described stressful feelings and anxi- deserving of authority or as being in some way uncontestable.
ety as predominant emotions. Another individual with autism, Their forcefulness and consistency should signal clinical researchers
Therese Jolliffe commented: “It [stress] occurs at any time, but to question every assumption brought to the topic of autism.
(p. 281)
always when I know I have to go somewhere stressful. Sometimes
the pain is so bad that my whole body becomes stiff and then I am
unable to move.” (Jolliffe et al., 1992, p. 14) MATERIALS AND METHODS
Communication challenges were also noted in numerous A qualitative research design was utilized in this study to gather
first-hand accounts of autism (e.g., Cesaroni, 1990; Barron and data aimed at describing the experience of sensory and move-
Barron, 1992; Jolliffe et al., 1992; Williams, 1992, 1994; Grandin, ment differences in individuals with autism. Qualitative designs
1995; Blackman, 1999; Mukhopadhyay, 2000; Rubin, in Biklen, foster interpretations and descriptions that allow understanding

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Robledo et al. First-hand accounts of sensory-movement differences

of the concept being studied (Ferguson et al., 1992). Further, from an early age. In her early childhood, her father, a physi-
qualitative research attempts to create a naturalistic paradigm cian, sought out advice but disregarded many of the explanations
in which the researcher is able to understand an individual’s of autism given to him during the late 1960s and early 1970s.
experiences. Kathy-Xania was appreciative of that fact and said that as a
result of her father’s actions, she was educated with her non-
PARTICIPANTS disabled peers. Kathy-Xania attended college and earned her
Five people with the diagnosis of autism participated in this study. bachelor’s degree. She is divorced from her husband and lives
It was anticipated that obtaining data from this population would independently.
be challenging due to the well-documented social, communica- Barbara was a 40-years-old female. At an early age Barbara was
tion, and behavioral challenges experienced by many people with placed in a psychiatric institution. At age 17 she became an outpa-
this diagnosis. For that reason, the researchers used a variety of tient of the institution and lived with a foster family for 10 years.
methods to obtain meaningful data. These methods included in- During that time she attended 1 year of college. She decided to
depth interviews, questionnaires, and participant observations. leave college and began working in the kitchen of a nursing home.
All aspects of this study conformed to the Institutional Review She held the job for 22 years despite her dislike of the job. She lives
procedures of the School of Education, University of Wisconsin- independently receiving support from her siblings, especially her
Madison. sister, Ruth.
There were five-independently communicating participants Matt was a 19-years-old male. Matt’s parents were given a
in this study. Each person was sought through a number of diagnosis of autism when Matt was 18 months old. His mother
associations involving people with autism. They were each con- was very supportive of Matt and advocated for his inclusion
tacted regarding the research and depending on their personal in school and the community. Matt received special education
preferences, were provided with background information regard- support throughout his school years. During high school, Matt
ing their involvement. Subsequent to this, informed consent attended all regular education classes. Matt is extremely skilled
was sought. At the outset of the study, participants were asked in mathematics and subsequent to his participation in this study
to provide information regarding his or her autism, including he received a bachelor’s degree in mathematics from a major
Asperger’s syndrome or autism spectrum disorder. Confirmation university.
of diagnosis was obtained from a review of past records, inter-
views with family or involved staff members, and/or direct INSTRUMENTATION AND DATA COLLECTION
observation of the individual. Although we intended to use Each participant was asked to identify their preferred method(s)
pseudonyms, all participants asked that their real names be used. for data collection (i.e., face-to-face or phone interviews, com-
For purposes of this paper, only the participant’s first names were pletion of written questionnaire, and/or participant observation).
used. A brief description of each participant at the time of data In order to optimize their participation in the interview process,
collection follows. those interested in completing interviews were given a choice
Geneva was a 57-years-old female. At age six, Geneva was diag- as to how, where and when they would like to be interviewed.
nosed with encephalitis. Early in Geneva’s educational experience Additionally, any accommodations an individual needed to make
she received little to no help in school despite the fact that, she the interview more productive were provided. One such example
was having difficulties. In third grade, school staff investigated included the option to respond to oral questions in writing.
Geneva’s learning problems. Testing was done but no assistance Depending on individual preference and the extent to which
was given to her. It was not until junior college that the discrep- individuals were able to participate in extended interviews, mul-
ancy between Geneva’s receptive and expressive language skills tiple interviews of varying length and format were completed.
was discovered. She was tested and given a list of her learning dis- While no set number of interviews was required of participants,
abilities. Subsequent diagnostic labels include: Aphasia, Dyslexia, the total time taken to complete interviews was in the vicinity of
Sequential Learning Deficit, and Epstein Barr Syndrome. Later 40-h. Prior to beginning each interview, the researcher conduct-
in life she went to doctors including Dr. B. J. Freeman at the ing the interview talked informally with the participants to create
University of California Los Angeles’s Neuropsychiatric Institute, rapport.
and was diagnosed with a form of high functioning autism known If the participant wished to complete a questionnaire packet,
as Asperger’s syndrome. he/she was asked to select a method of sharing information
Jean Paul was a 29-years-old male. He was diagnosed with (e.g., E-mail, U.S. Mail or telephone). Also, any accommodations
autism and mental retardation at age 3. Professionals recom- needed to make the questionnaire more productive were provided
mended to his mother that he be placed in an institution while and included the option for further oral explanation of question-
she underwent psychotherapy. During his early days in school, an naires or the completion of portions of the questionnaire during
attempt was made to place Jean Paul in a program designed for telephone conversations.
the cognitively disabled. Jean Paul’s mother did not listen to the In addition to the use of interviews and questionnaires,
medical or school personal. Instead she worked very hard to pro- participant-produced data (e.g., drawings, writings) were
vide her son with the needed resources. As a result of Jean Paul’s reviewed and observations of four of the five participants who
and his mother’s hard work, Jean Paul has two college degrees. selected face-to-face interviews were completed.
Kathy-Xania was a 33-years-old female. Kathy-Xania remem- The researchers approached the interviews from a primary
bered experiencing information and her surroundings differently principle of qualitative interviewing by providing “a framework

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Robledo et al. First-hand accounts of sensory-movement differences

within which respondents can express their own understandings was collected, all the interview transcripts were analyzed and
in their own terms” (Patton, 2002, p. 205). In order to provide a themes or categories were changed or expanded upon. For exam-
framework, a minimally structured interview format was used. ple, the themes “memory” and “thoughts” were combined into
A variety of predetermined questions were derived from the category of “cognition.” Initially, data were coded using two
the professional literature and published first-hand accounts of descriptors that were typed before each excerpt. The first descrip-
autism. These questions were used as a guide rather than a tor was the area (e.g., perception/vision). The second descriptor
script during the interview. Possible interview questions were was a specific attribute (e.g., difficulty integrating visual stim-
sorted into nine categories: hearing, vision, touch, action, pos- uli). After these two descriptors had been assigned, data were
ture, emotion, communication, cognition, and general. Examples sorted into categories. These excerpts were again read and changes
of interview questions included requests for information on the were made to the categories and codes. After all the data were
extent to which elements in the environment provoked an adverse collected from the participants, all interview transcripts, ques-
response in the individual, whether movement or control of the tionnaires, coded data, and researcher notes including notes
body was problematic, and what accommodations assisted the from the document review, and notes from listening to the
individual in these situations. Upon completion of questions in audio tapes were re-analyzed to confirm themes/categories and
a specific topic area, participants were asked if they had any addi- codes.
tional information or examples they wished to add. Information
provided by the participants was reviewed after each interview RESULTS
and was used to develop structured questions for subsequent For clarity of presentation data will be presented in six categories:
interviews. perception, action, posture, emotion, communication, and cogni-
Four of the five participants stated that the phone interview tion. It is important for the reader to note that there is a dynamic
was a better format because it allowed them to be more active in interaction among these areas as no category operates in isolation.
the dialog. One participant described that they were best able to
respond to questions during a phone interview if they were also PERCEPTION
taking a bath. To ensure adequate information from the partici- Sensory and perceptual differences related to hearing, vision,
pants they were asked to think about certain topics ahead of time and touch were common in the experiences of participants.
and additional response time was offered. Challenges with proprioception were also described; however,
A questionnaire written at approximately the 6th grade level these findings will be presented in the “posture” category. Some
was created using the professional literature and published first- participants indicated differences in smell and taste, but they will
hand accounts of autism. Vignettes incorporating the themes not be reported here as differences in hearing, vision, and touch
introduced earlier were presented in the questionnaire packet yielded the greatest amount of data.
and participants were asked about the extent to which their
own experiences were similar to or different from those in the Hearing
vignettes. After each vignette additional questions were asked. Auditory differences were noted in the experiences of partici-
Questionnaires included short answers, multiple choice, and fill- pants. For some, certain sounds evoked physical pain and anxiety.
in the blank answers. For others, sounds elicited emotions not necessarily related to the
Along with the audiotaping of each of the interviews, memos present context. Some participants indicated differences in their
and field notes during and after each interview were completed ability to selectively focus on auditory input.
(Lincoln and Guba, 1985). Memos involved the researchers in Jean Paul indicated that ambulances, airplanes taking off, and
writing ideas, thoughts, assumptions, concepts, and relationships loud screechy noises are problematic, creating a sense of “having
between concepts that emerged while interviewing, coding the the jitters.” Similarly, Matt explained his painful reaction to certain
data, consulting with others, or contemplating what had occurred sounds:
during data collection (Strauss, 1987).
The researchers reviewed portions of dairies, newspaper arti- Especially things like gunshots, loud motors, and brass bands. My
cles, drawings, poems, and photographs from three of the five mom took me through a drive-thru car wash once when I was in
participants. Any artifact or documentation (i.e., diaries, draw- grade school and I was terrified. The brushes sounded to me like the
sound of intense machine gun fire, but I could not communicate well
ings) that the participant wished to share with the researchers
enough to explain why I got so upset.
was used for document and artifact review. Memos were written
up about each document. These artifacts assisted the researchers
Barbara discussed how sounds triggered her emotions. She
with gaining an in-depth and more complete understanding of
said, “It seems like there is something in my brain that certain noises
the participant.
trigger my emotions the way pain does.” She described how the
sound of a crying baby could “agitate and anger” her. Barbara
DATA ANALYSIS further explained:
Data analysis occurred throughout the data collection phase using
the constant comparative approach (Charmaz, 2000, 2006). This Some sounds make me feel really bad in the pit of my stomach. I feel
allowed the researchers to collect data, analyze it, and then col- angry and aggressive and out of control; feeling aggressive towards
lect additional data. Information was shared with participants someone who doesn’t deserve it makes me feel guilty. I get very agi-
to confirm interpretations of the data. As the participant data tated. I may yell at people. My behavior gets out of control. It can

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Robledo et al. First-hand accounts of sensory-movement differences

ruin my mood sometimes for days. The effects of the noise last much affects her adversely, leaving her feeling sad and depressed. She
longer than the noise itself. explained, “I can feel my body chemistry change when there is sun.”
Jean Paul, Matt, and Geneva spoke about negative and painful
She expressed concerns during a phone interview as the reactions to certain visual stimuli. Geneva said, “There are certain
researcher conducting the interview had recently had a baby. types of light I cannot tolerate—they make me nervous. If I am in
Barbara was very fearful that she would hear the baby over a hall and it is too bright, I can’t handle it, I have to put a sun hat
the phone. She explained, “If you really understand how I feel on.” She also said she was not able to handle fluttering fluorescent
about babies, you’d move heaven and earth to keep that baby away lights because that type of light “absolutely turns my stomach into
from me.” knots. It does a trip on my nervous system.” Even the sun can be
Through her questionnaire she indicated that these emotional problematic. Geneva explained that when she walks out the door
reactions caused her problems including: on a bright day her eyes take up to 3 min to adjust:

a) I complain a lot and then get criticized a lot; b) If I know I Because it hits my head like a lightening bolt. I have to stand there
can’t get away from bad sounds I get irritated and depressed; c) with my eyes closed and hold on to something so I don’t fall over
If I anticipate a situation where there may be bad sounds, I get because a lightening bolt goes through my head when the sun hits
depressed, feel helpless; d) sometimes a loud sound will provoke me my head. Then I have to wait a minute and then slowly open my
to tears. eyes.

Whenever Barbara is in public she wears earplugs and a radio Other lighting, such as strobe lights, wreak havoc on Geneva’s
headset. She said, “this can provide competing sound which may emotions, nervous system, and perception which may lead her to
be distracting so I won’t focus so much on the bad sounds.” She feeling nauseous, dizzy and provoke panic attacks.
also indicated that she was appreciative for those who allow her Challenges with eye contact also emerged from the data. Matt
to leave noisy situations: “It really helps when other people under- explained, “It is painful for me to look people in the eye . . . This
stand. I feel guilty mostly because of others’ reactions. It’s painful to lack of “eye contact” sometimes make people (especially teachers)
be criticized.” think I’m not paying attention to them.” Barbara explained that
Kathy-Xania noted that she experienced times when sounds she avoided eye contact as well:
faded in and out making it difficult at times to focus on auditory
input. She hypothesized that when there was too much “static” I can hear a person better if I don’t look at their face. When some-
in the sound it was more likely to fade in and out. Kathy-Xania, body talks, I tend to turn my ear towards them, because I want
noted: to hear what they’re saying.... Well, what I mean if I’m look-
ing at them, it’s kind of a mild distraction, because you know, if
somebody is talking, I concentrate more on listening more than
It is hard to hear when a person has static in their voice. I don’t
looking. So when I’m making an effort to listen, I’m not making
like it when babies cry. I don’t like static. I don’t like high-pitched
an effort to look, so sometimes when I’m listening to somebody,
noise. I don’t like hearing gunshots. I do hear gunshots. I don’t like
I might look away from them, but I might turn my ear towards
gunshots, I don’t like kids screaming. I don’t like staticky voices.
them.
I don’t like some of those old women who have those horrible
voices.
At times, Barbara was able to make eye contact, yet it was
atypical:
Vision
Participants described several different types of visual differences:
I feel that looking into someone’s eyes is intrusive, like I’m staring at
unique interactions with colors, stimulation or pain caused by them. I have been criticized in the past for how I’ve looked at other
visual stimuli, different responses to lighting, and challenges with people and about my facial expressions. I can do the right thing in
eye contact. the wrong way and not even know what it is that I’m doing wrong.
Primarily, participants spoke about negative reactions to visual If someone was doing something I was interested in, I might stare at
stimuli. Barbara, however, described that at times she greatly them.
enjoyed bright lights and certain combination of colors. For
example she described enjoying looking at traffic lights, “if they Touch
are put together right; modern ones disappoint me.” Barbara also Participants described challenges with tactile input. Both hypo-
indicated she had a strong need for visual stimulation: and hyper- reactions to touch were described. Barbara described
her hypersensitivity to fabric, sweat, and touch. She indicated
In other words, I crave light and colors. I always feel my best on that she does not wear any clothes that feel sticky or make her
a bright, sunny day. I like rooms to be brightly lit and if you saw sweat. She only wears loose fitting clothes such as cotton or cot-
my apartment, you’d see that I papered the walls with all kinds of ton polyester combinations. She also described having a sensitive
pictures. I turned an art gallery out of it. scalp. Barbara recalled when she had long hair:

Kathy-Xania also spoke about her need for bright light. She Hair was a big battle for me when I was growing up because you
indicated that she has been told that she experiences seasonal- know how when your hair’s long enough—it gets in the way, and
affective disorder. She described that a few days of cloudy weather even if you tied it back, the little fuzzies will work their way out

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Robledo et al. First-hand accounts of sensory-movement differences

and tickle your face. But I’m talking about if there were tangles in to hide the urges if I’m feeling really bad. I want people to let me
it, and I pulled it. That would drive me nuts... I over react to painful be. I’ve had all kinds of people who thought they were helping me
stimuli. stop doing things. I have been endlessly criticized about how different
I looked, criticized about all kinds of tiny differences in my behav-
This reaction to painful stimuli was extremely problematic ior. There’s a point where you say to hell with it, its impossible to
when it came to touching during medical procedures. As a child please you people.... No one ever tried to really understand what it
was like to be me.... I wish they had accepted some of my behaviors I
Barbara was very scared, over-sensitive and over-anxious about
didn’t have any control over. You don’t criticize people with cerebral
anything medical. She shared a story she had written about the
palsy.
experience.
Kathy-Xania explained her sense of touch as more hyposen-
sitive. She said, “I have a high pain tolerance, except around my Participants expressed challenges with execution of move-
mouth... I have a very high pain tolerance... I like deep pressure... I ment. Differences could result in problems with starting or
prefer deep pressure over light pressure.” Like Barbara, Kathy-Xania stopping movements. Barbara discussed how she wished she
also had an aversion to sweat. She stated: had better coordination. Her difficulty and lack of coordination
caused her frustration. Balance was also difficult for Barbara.
I just don’t like sweat. It’s like disgusting. It’s wet and sticky... But my Motor coordination was difficult for other participants.
neck—especially the back of my neck where my hairline is. Yeah, I just Kathy-Xania had been told her movements were different. As
don’t like it and I don’t usually get as hot as easily as other people. But she said, “I was sitting on the floor and when I got up after looking at
I don’t like sweat. I think it’s because I don’t like wet feeling and sweat a couple of books, my friend said I got up like an animal does.” She
is wet. said that she was aware that her movements were different, but she
was not quite sure how her movements differed from others. One
Geneva explained that her sense of touch and pain is much observation she made was that her lack of depth perception had a
different than others. She described that sometimes when she cut dramatic affect on her movements. She said sometimes when she
herself she most likely would not feel pain. She stated, “I didn’t needed to go up the steps she got down on all fours. She said she
feel the skin being pierced because I don’t have normal feeling in was able to execute the movement of walking up the stairs on two
my skin. I don’t have normal sensitivity in my skin.” She further feet, but it was very challenging. For that reason when she was at
explained how some of her body was unresponsive to some touch home or was unable to execute the movement she might need to
while other parts of her body (e.g., the back of her neck) were “crawl” up the steps.
very sensitive. She said that in “some areas my sensory system I Participants mentioned challenges around combining two or
have deficits, in other areas I have super sensitivity. That goes back more movements or actions. Geneva said that she was able to
and forth.” combine two tasks but she would easily “lose the rhythm.” She
Geneva described avoiding touch from people she did not recalled the example of learning to dance:
know well. She explained that if a person that, she had not seen
touched her she would get “scared out of my heebie jeebies—I will I tried to learn a very simple line dance. I could not learn my footsteps
jump a foot in the air... Startled, heart pounding, panic attack.” and my hand movements at the same time. I had to teach my feet
Geneva said that there were certain clothes that she was not able to how to do it then stand still. I had to hold on to a rail, teach my feet
wear mostly because of the material used in making the garment. their steps then lean against the wall with my feet out balancing me
For example, she needed to wear cotton underwear rather than and learn my arm steps. Then hold on to the bar and learn my torso
synthetic underwear. If she did not wear the cotton underwear steps and then from there you learn what to do with the hips. Slowly,
she would sweat, itch, and break out in a rash. I turn the music on slow and I very, very, very slowly start the feet
and very slowly add the hands then very, very slowly add the torso,
etc. Everything has to be thought out, that is what is so annoying.
ACTION
There are just a very few things that I do two things at the same time
Participants revealed difficulties with controlling, executing, and without thinking them through as I am going.
combining movements. Most participants discussed difficulties
controlling movements. Jean Paul described difficulty with hold-
ing his body still, particularly when he was nervous. Matthew At times, Geneva needed to separate tasks out while other
spoke about difficulty controlling his actions, even basic day-to- times combining was necessary. For example, “If I am running
day motor actions. and I look away from the sidewalk, I’ll trip on the next thing on
Barbara also discussed challenges with controlling her move- the sidewalk.”
ments during times when she felt nervous, excited, or overloaded.
She described, “I had an automatic urge to touch my body—rub POSTURES
my thighs or my stomach and chest.” Barbara expressed that she The trouble that some individuals with autism have with action
became upset and felt criticized when others did not understand may be due in part to differences in postures. A few experiences
her challenges related to controlling her actions: from participants as they related to posture are briefly noted.
As a teenager, Barbara was told that she grinned and that oth-
I want to stop doing anything that doesn’t look normal. But if I ers “. . . didn’t like my posture or how I sat at the dinner table. My
am feeling really bad inside, I want people to see the distress sig- body just never seemed to be in a position that was acceptable.” She
nals for what they are. I want people to understand I don’t want explained that she did not choose her body postures rather than

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Robledo et al. First-hand accounts of sensory-movement differences

her postures were a result of the way her body positioned itself in indicated that she, too, felt like she was on an emotional roller
space. coaster. She explained:
Other participants noted difficulties with proprioception and
posture. Geneva, illustrated the difficulty in knowing where her There is a lot of rage in me and I think that is due to a lot of expe-
body was in space. Geneva said not only was this “a frustrating riences that I have had. When I get rageful it is usually an event or
annoyance” it could be life threatening as in the time “where I an emotion or something that I have to be to work. Dealing with, like
almost died because I was drowning in a pool because I couldn’t find I am going to be going to the Social Security office on Tuesday with
up.” Geneva said that she was best able to focus on the task at hand my social worker and just, well, I am trying to get health benefits and
it just pisses me off to no end. If I read about the economy and read
when she had some body awareness. For example she was better
things like that—I start raging.
able to think and communicate during the interview because she
was sitting with her body supported in a recliner or the bathtub.
This accommodation of the recliner or bathtub assisted her both Challenges with identifying their own emotions were also dis-
physically and emotionally. cussed by participants. Geneva spoke extensively of this. She
provided herself with a mental checklist that assisted her with
identifying her own emotions. For example, she said:
EMOTIONS
Participants discussed challenges with expressing, controlling,
I go into a room and I see somebody I knew in school. I don’t fully
identifying, and/or changing emotions. In addition, many partic- remember the relationship because I didn’t really know them that
ipants spoke about specific accommodations that allowed them well. But an intense emotion comes inside of me... I have to stop
to manage their emotions more effectively. and think are my hands sweating, is my stomach in a knot, is my
Participants varied in how they described their challenges with face turning red or white, am I shaking or frozen in my steps, is my
emotions. Most felt they had the most trouble with expressing breathing fast or slow, do I feel a panic reaction or do I feel magnet-
emotions. Barbara described challenges with both expressing and ically drawn. I have to go through this checklist until I get enough
controlling emotions: guesses to identify—Oh, I must have liked him.

I think I’ve had times where I wasn’t able to express how I was feeling Embarrassment would involve a different checklist. Geneva
and sometimes it was hard to experience my feelings directly. And said, “I wouldn’t want to look but I did want to look. There would
one of the biggest problems was that I tried to express how I felt and be a polarity between looking and not looking. My face would be
people just didn’t understand, my feelings were just so much different warm and I would want to run in both directions....” Panic “poses
than another person that they just simply disregarded it. a breathing off, makes us feel like we are in a straight jacket that is
slowly being tightened....To us a panic attack is more like an attack
She went on to say: of horror.” The checklist for happy would be:

I had a problem with controlling my behavior. I did a lot of crying Somebody gives me something that I have never seen before, but I
and a lot of complaining and I tried real hard to express my feelings have never wanted one but it would be useful. I have to put it into a
to them, but people just didn’t understand my feelings. I didn’t have scenario to make it make sense. When I discover my hands are trem-
the same kind of feelings other people had. bling ever so slightly and I have got this giggle inside my stomach and
when I look at my face on the inside I have got this smile, this itty
bitty smile, and I am looking around at other people, especially the
Kathy-Xania described a different experience with expressing gigglers, and I try to pick up on what they might be thinking or what
emotions. She stated: they are saying and I would go through this and the last thing that
would go make up my mind would be do I want to put it under the
I don’t cry easily. I feel it inside, but I don’t always show it on the table or do I want to take it home? Do I want to accidentally leave it
outside. I think I get affected by things very easily... With me, it’s all under the table or take it home?
in my face. Usually if anything happens, emotionally, it’s usually—
my head gets affected first.... Expressing it and with me, expression Participants also talked about difficulty identifying or under-
tends to be hard... The emotions with people like me are much more standing the emotions of other people. Kathy-Xania explained
intense. We have them, they’re just intense and expressed differently... that she could identify and understand anger, friendship, loyalty,
It’s how we express it. I think it’s there, but the expression is maybe
and dishonesty. She expressed that she has difficulty understand-
different.
ing sexuality and jealousy. As she explained:

Participants discussed challenges with controlling and modu- I mean all the sexuality stuff I have really very little understanding
lating their emotions. A few participants described their emotions of. I acknowledge it. I know it exists, the emotions people have about
as a “roller coaster.” Barbara described her emotional roller coaster that area—I just don’t understand. I have envy and jealousy myself
connected by extreme depression and intense excitement: “I could but not over things of other people.... It’s hard for me understand why
get very upset very easily, but I couldn’t get over it.” On the other they would have those feelings.
hand, Barbara indicated, “there have been lots of times that I wasn’t
really able to feel my feelings directly and there were some things I Although Kathy-Xania and other participants stated that they
couldn’t deal with directly because it was too painful.” Kathy-Xania have difficulty identifying the emotions of others, all participants

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Robledo et al. First-hand accounts of sensory-movement differences

disagreed with the assumption that individuals with autism lack focused on her outward behavior. As she stated, “No one cared
a theory of mind or are unable to take the perspective of others. about how terrible I felt from the inside.” Barbara wanted oth-
Participants expressed feelings they experienced and also spoke ers to understand, help her understand, and to support her. Jean
about relating to another person’s feelings. It was apparent that Paul agreed. He said that connecting with and providing feed-
for these participants there was a difference in understanding back to a person with autism on his/her level without criticism
emotions, not an absence. was extremely helpful.
Participants talked extensively about accommodations they Matt described a variety of strategies to deal with stress. He
have used to manage their emotions. Barbara described often hid- explained that some books, pictures, and electronic equipment
ing her emotions and isolating herself, however, this made her feel (e.g., computers, Game Boy) reminded him of home. This mem-
miserable. She explained that when she personified objects and ory of a quiet, safe place created a calming feeling and allowed him
projected her feeling to that object, she felt better: to better deal with stress. While these and other strategies were
helpful, he explained that other people often did not understand
It seemed in order for me to have any happiness, I had to personify his strategies. He explained others’ reactions to his strategies:
objects and treat them like they were human....Well, lots of times I
would project my feelings onto something, rather than being able to Some of these things upset my teachers because they don’t understand
feel them directly.... I don’t know how to explain it. Lots of times I why I do them. And I couldn’t communicate well enough to explain
would say the feelings that I had I wasn’t able to feel was like maybe things, even to myself. For example, my parents said I banged my
feelings of pleasure—like for me to enjoy something—I’d have to head a lot when I got frustrated when I was young. But I usually
sense that one of my fantasy objects enjoyed it too. banged it on soft things so it didn’t hurt much. Sometimes when I
am mad now I still swing my head through the air. But I don’t hit
Barbara further explained: anything with my head. Head banging motions help me deal with
my nervousness.
When I could interact with a personified object I felt content. For
example, I personified the building where I went to high school and COMMUNICATION
called it Troy. When I could talk to the building or interact with
Participants described challenges with both verbal and nonver-
it, I felt content. At that time I got no good feelings from being
around people. There was always tension when I was around peo- bal communication. Specifically participants described challenges
ple because I never fit in and I had nothing in common with people with speech execution and control, rhythm in conversation,
and there was no sense of connection, objects were my only source of and using and understanding nonverbal communication. Many
comfort. described the dynamic interaction between speech and emotions.
Barbara described difficulty with speech execution and con-
Two other participants also described personifying objects. trol. She described how emotional reactions caused changes in
Geneva personified a large stuffed rabbit. This personification her ability to control her speech:
provided Geneva with a comforting feeling. Kathy-Xania found
the feeling of security when holding wooden puzzle pieces of I know my voice is loud now—but when I talk about emotional
California, Texas, Montana, and Africa. things, it just bursts out of me—there’s just so much pressure. In fact,
Participants talked about the impact of stress on both their lots of times my voice sounds bad—it’s only part of the emotion—you
emotions and their behavior. Barbara explained that she tried to know—it’s sort of like be thankful it’s only a whine—I’m holding in
“stay out of a situation where I am stressed. Otherwise, there is no a scream.... But if an autistic person’s voice is loud, it’s not because
they’re trying to be loud, it’s because there’s tension there. An autis-
controlling my emotions.” She described feeling stress, nervous-
tic person is sitting on a powder keg of emotions. And it’s gotta go
ness, and depression caused by criticism from others regarding somewhere—and perhaps talking loud is the only way they can get
her behavior. Barbara added: any relief from that tension. It’s the only outlet that I had that worked.
If I was angry, I could exercise, I could do anything but it wouldn’t
The more people that criticized me—what it did was made me angry do any good. Talking or yelling or something was the only thing that
and want to rebel. When people criticized me a lot I just didn’t like gave me any relief at all.... My voice was the only emotional release. It
being around them and I got angry a lot and I cried a lot. And it just was the only safety valve on that pressure. But the funny thing about
simply—it caused more tension. In fact it just took a bad situation it—was the more people nagged me, the more it aggravated what it
and made it worse. There were times when I was in a situation where was they were nagging me about.
I sometimes had to act a little bit silly to keep myself from getting
upset because if I would have had that defense mechanism I would
have just fallen apart.... Well sometimes I felt so nervous that some- Kathy-Xania also described difficulty controlling her speech
times I would have to act silly. In order to keep from getting upset.... and vocal outbursts when she was emotional, even if the emo-
If I got upset I stayed that way. I had to really do everything I could to tion was excitement. She described often making “uncontrollable
try and avoid getting that way....because I have been hurt so much. sounds” when she heard the name of a geographic location.
I have so much bitterness. And I have to deal with forgiving a lot of Kathy-Xania also commented on how difficult it was for her to
people. understand the rhythm or pattern in conversations. She explained
that this was exacerbated when the subject matter was “historical
Barbara further explained that, she felt isolated and that no or talking about something I really like. I want to jump in there you
one understood how hard things were for her; instead they only know. But I never know when to jump in and often get it wrong.”

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Robledo et al. First-hand accounts of sensory-movement differences

Participants also described challenges with becoming stuck in She described that “passing in society or keeping your outward
words or phrases and/or sounds. Jean Paul described repeating appearance looking typical” required a “huge portion” of her men-
words and phrases over and over again. As he said, “I could not tal energy. As a result she created a variety of accommodations
stop, even when I wanted to.” Geneva described similar challenges to reduce the amount of energy or thinking needed to complete
with speech execution: a cognitive task. She summarized some of her thinking and the
accommodations she had created for herself to be a more effec-
There would be a lot of times that I would stop in mid-word and tive thinker. For example, Geneva described her optimal studying
maybe repeat a syllable and go into verbal perseverations. I would experience in college:
start to say things, I would use the wrong words. Like I would say:
‘let’s go into that store’ in my mind, but the words would come out I would go in the bathroom and start the bath water, right?
‘let’s go in that box’.... I would lose my train of thought constantly. Then I would get this desk I had made to go across the bathtub, then I
would put the notebooks on there and my textbook and then I would
put the tape recorder with the taped book from books for the blind on
Participants also described challenges with using and under- the commode seat and I would read the text, hear the tape and take
standing nonverbal communication. Barbara said, “As a child notes at the same time and if at any point something happened to my
growing up, as an autistic person, I could not read body language.... concentration that it stopped or something, I could just stop the tape
because all that was too abstract.” She further explained: and go back.

I don’t understand body language. And I had very little body lan- This atmosphere seemed to organize her system. Geneva
guage. My face tended to have a blank expression on it a lot. And I explained further using a computer analogy:
did not have body language or understand body language but they
put all the burden of that on me. As if I was suppose to change it. It Now, comparing my mind to a computer, it is like I have the input
was neurological but they didn’t recognize anything as neurological. I card but the output card is all jumbled up. There is no alphabeti-
think eventually I started to develop more body language. But it was cal order and half of them are missing but the input is there. But I
just something that took a long time to develop. But one of the things can’t get to the output.... I have no idea why. Somebody will ask me a
that happened is that I had a very high level of nervous tension so question and I will say I will have to get back to you and I just have
I just looked and acted very nervous. And a lot of times I grinned a to forget about it and walk around till the stuff pops up and it pops
lot because of tension. And lots of times I laughed so I wouldn’t cry up eventually or sometimes it doesn’t.
because I knew if I didn’t act silly that I would get upset and I really
had to struggle just to keep myself together. Geneva also described that one of the major difficulties she
experienced was because:
Barbara further explained:
People don’t realize the major problem that nobody ever sees or real-
izes is how much conscious thinking we have to do just to function.
I’d sometimes look like I wasn’t paying attention because I’d be pre-
Walking takes thinking. So if I am walking and you ask me a ques-
occupied or I’d grin, or I’d grimace, or I’d frown. I got criticized for
tion I could trip or I could mess up the sentence and put the wrong
my facial expressions. I got criticized for things that happened auto-
word in. Or have to stop and say, ‘what did you say?’ I can walk with
matically. I got criticized for things I had no control over. Things
my girl friend down the street and carry on a conversation as long as
other people don’t think about. Normal people’s faces look like they’re
she is right there but I have to look down at the sidewalk. I have to
supposed to look—when you’re autistic—your face does not look like
keep track of where the sidewalk is and where any obstacles are and
you’re supposed to look. Different things go on inside you. Different
all that stuff and sometimes if I have to keep walking and I feel like
things show on the outside. It’s automatic. Nobody sits around and
I am going to blow any second I make sure the path is clear ahead of
says I’ll move this muscle here—I’ll move this muscle there—I’ll put
me and close my eyes and continue walking.
this muscle there—they don’t stare in a mirror and think—move
this muscle, move that muscle, yeah that’s the look and practice that.
Nobody does that. But my facial expressions I got criticized for. Kathy-Xania described herself as an “entirely visual thinker.”
She said that the way she thought was:

COGNITION Similar to Temple Grandin—and that’s why I like countries and

Data from the categories “memory” and “thought” were com- states so much. Because it is all visual to me. History is movement. It
bined into the category of “cognition.” Thought processes of the is movement. Economy moves and countries move. People, countries
individuals from this study proved unique and distinctive. and their governments have their ups and downs and I like looking
Geneva had been told that she was born mentally gifted. She at pictures and maps and flags. It is all visual to me. It is like a story.
described her IQ scores: I can just visualize it all.

What they didn’t know was that I may have been as high as 150 to Kathy-Xania’s mind also connected many ideas and words. For
begin with. I am about 135 now, but I may have been as high as 150, example, she enjoyed hearing where people were from. When
but I used everything over 100 to pass in society. So I brought it down, she heard one of the researchers was from Wisconsin she said
down, down to where now it is 135 where it should be 150 but I have that the first thoughts that came to her mind were “University of
to pass in society. Wisconsin, Madison, Cheese, History, my name is Yon Yonson and I

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Robledo et al. First-hand accounts of sensory-movement differences

come from Wisconsin.” In fact, she voiced some of these thoughts DISCUSSION
during the interview. She said: We started this project with the conceptual model of sensory and
movement differences and a conviction that it is important to lis-
I always have to know what city people come from but there are times ten to people with autism. This model was based on that offered
I don’t always ask, especially if I am dealing with a business situation by Hill and Leary (1993), Donnellan and Leary (1995), Leary
or whatever. I usually deal with business at hand. But usually I am and Hill (1996), and Leary and Donnellan (2012). Sensory and
very compelled to know what city people are from or places they have movement differences is a disruption in the organization and reg-
been to, you know. ulation of perception, action, posture, language, speech, thought,
emotion, and/or memory. This definition guided data collection
Barbara’s thought process also involved such connections. and analysis. We found that the data strongly supported the pres-
These connections however, often lead to intrusive thoughts. She ence of disruption of organization and regulation of sensory and
stated: movement differences in the lived experience of these participants
with autism. Typically developing people experience sensory and
I think in some situations it’s just harder for me not to have intrusive movement differences as well, of course. However, the present
thoughts. Some autistic people, they say, block things out or they shut data suggests that in autism this disruption of organization and
things down or whatever. My mind doesn’t think—I’m not able to regulation is amplified in terms of quantity, quality, intensity, and
stop an intrusive thought or block something out unless it’s something may affect everyday life. For example, recall how Barbara found it
really, really, really mild—but if it’s severe, it all comes in and there’s almost impossible to let go of an intrusive thought, how she was
no way I can stop it. I’m not able to tune out anything.... Intrusive often not able to move past a negative emotion, or how the effects
thoughts would be nonsense syllables or something. I don’t under-
of an unpleasant noise lasted much longer than the noise itself.
stand why this is—but if I was trying to study a foreign language
The professional literature on autism, from Kanner (1943) to
or if I tried to study anything with odd-sounding words, I’d get non-
sense syllables and stuff would pop in my mind and anxiety. It doesn’t the present relies heavily on the “etic” or outsider view (Pike,
make a bit of sense. I don’t know why it happens. 1950; Berreman, 1966). The assumption, unstated but generally
operationalized, is that our experience of these individuals is
essentially the same as their own. Here, we have attempted to offer
As a result, “it takes a lot of concentration and I’m not able to
the “emic” view, i.e., at least some of their experience, in their
process that much information at one time.” Barbara stated that
own voices. With this information, we might begin to understand
when she does not put forth a great deal of conscious effort she
that when Barbara looks away in a conversation it could be her
has a hard time staying focused. She explained:
best accommodation in order to understand our words. And per-
haps we could see her behavior as less a social inadequacy that fits
Like if I was in the music room and I saw a musical instrument or the our definition of autism than an individual’s best attempt to over-
record player was turned off, I would have intrusive thoughts about
come a sensory problem that otherwise would interfere with her
songs in my mind. Or if I was trying to read my geography assign-
attempt to interact. And, this information might inform teach-
ment, a whole bunch of nonsense syllables would pop into my mind
and would be triggered by funny-sounding names. Just stupid things ers and therapists who have been taught that they must get eye
like that—that wouldn’t amount to a hill of beans, but I would just contact before providing instruction. In another example, recall
get this terrible anxiety and boy, I would just scream. that Geneva described her need to think about how to walk in
order to walk. For most non-autistic individuals, this is auto-
Matt explained that, excessive stress could be problematic for matic, smooth, and fluid. She described further challenges when
his processing of thoughts. He described how some people pres- combining walking and speech. Geneva explained that she had
sure him by yelling at him to respond. He explained, “This type to look down at the sidewalk while having a conversation with
of pressure causes my thought processes to ‘crash’ like an overworked a friend so that she could continue to talk and walk. Without
computer disk. It’s like my thoughts are trying to get out of my head knowing this was an accommodation used by Geneva one might
at once and I can’t deal with it.” assume her behavior indicated a social deficit.
Barbara and Kathy-Xania each explained that sometimes they Additionally, these data suggest that sensory and movement
had “cognitive overload.” This might happen when either of them differences are not the same for all people with the autism label,
had difficulty integrating different areas such as thought, per- nor always the same for any given person. Moreover, those of us
ception and action. Both gave the example of driving. Barbara who support people with autism should be mindful that:
explained her experience of driving:
Movement disturbance can clearly have a profound effect on a
person’s ability to regulate movement in order to effectively com-
When you’re driving you have about 20 different things you have to
municate, relate, and participate with others. Once this possibility is
keep track of—traffic going in all different directions—you have to
acknowledged, it becomes necessary to suspend absolute trust in one’s
watch the traffic, the light’s red, then it’s green, then it’s red, then it’s
intuitive interpretation of actions and intent. Behaviors may not be
green—you have to pay attention to whether the light’s red and green
what they seem. (Leary and Hill, 1996, p.44)
and go to the corner—pay attention to the speed limit and the signs
and staying in your lane and watching all the other cars at the same
time—I could pay attention and not see something else. I might avoid Our understanding of each individual requires awareness of
hitting a car only to hit another one. the dynamic, multi-layered, contextually determined aspects of

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Robledo et al. First-hand accounts of sensory-movement differences

organization and regulation. It is a tall order, worthy of our autism than the typical patterned response of other non-labeled
attention. people; and (3) areas may affect these individuals in an unusual
For the purpose of this study, it was necessary to describe vari- and dynamic fashion which is highly dependent upon external
ous areas separately, it is important to remember that perception, and internal context.
action, emotion, communication, cognition, and posture oper- Interviewing individuals with autism about sensory and move-
ates in an interactive dynamic fashion (see Thelen and Smith, ment differences was challenging. At times, despite their interest
1994; Thelen, 1995). Continual interaction occurs across the areas in the topic, it was difficult to know the “right” questions to
in a dynamic process. These connections seem to be dependent elicit information in some areas, such as posture and cognition.
on context. Context includes a wide variety of factors not lim- Though the vignettes helped, it was not always clear if the partici-
ited to overt, observable stimuli. Context also includes emotional pant actually experienced differences but was unable to articulate
status, environmental stimuli, memory triggers, etc. Recall that the information or if the person did not experience challenges in
many participants discussed the effect of stress on their ability a particular area. Each of the categories discussed in this study
to organize and regulate their perceptions and movements. In warrant further investigation.
other words, a person’s ability to function is highly dependent These individuals are considered “high functioning,” and yet
on context, which is ever shifting, and the unique and intimate live with challenges that are poorly understood by their commu-
interconnections of the various areas may contribute to sensory nity, colleagues and peers and seldom reflected in professional
and movement difference for an individual with autism at any descriptions and studies. Despite the occasional difficulties, qual-
moment in time. itative research that seeks the perspectives and experiences of
One obvious implication is that “interventions,” medical, people with autism is essential if we seek to understand how
behavioral or educational, ought not be pre-packaged nor sensory and movement differences impact these individuals. In
assumed to work for all people with autism. They must be per- particular, we need to explore whether and to what extent these
sonalized accommodations (Luria, 1932/1976; Sacks, 1990) and sensory movement difficulties create or contribute to the diffi-
personalization requires that we “learn to listen” (Lovett, 1996) culties that we experience as impairments in social interaction,
to the individual rather than rely on our preconceived notions of communication and behavior. We must listen carefully to individ-
our own expertise on the topic. Moreover, it must be said that uals with autism and be willing to incorporate their perspectives
each of the participants (and many others with the autism label into our learning.
to whom we have spoken) expressed gratitude for the informa- Many experts in the field of autism, especially and specifically
tion about sensory and movement differences. While they knew people with autism (Kathy-Xania, interview; Barbara, interview;
their own experience, and could talk about it, they did not know Geneva, interview; Ne’eman and Kapp, personal communica-
that others had similar experiences. Moreover, they thought they tion, July 29, 2012), disagree with much of the explanation of
were to “blame” for their challenges, because they had so often autism currently available in the autism literature. Kathy-Xania
been blamed by others and subjected to so much behavioral (interview) and others (Mackay, 2003; Biklen, 2005) suggest that
modification with the goal of eliminating behavior beyond their there be more qualitative studies to gain the perspective of people
own volition. The separation of mind from body noted earlier with autism. This study supports the notion that more quali-
(Damasio, 1994) has contributed to this situation where the lit- tative research, including in-depth interviews, case studies and
erature concentrates on “mind,” leaving most autistic people to first-hand accounts, that elicit the experiences and perspectives
deal with problems of their bodies on their own. Their experi- of individuals with autism would be prudent. These data would
ence described here and in first-hand accounts suggests that a contribute to a more expansive view that incorporates the pos-
change on our part as professionals is essential. With sensitiv- sibility that autism is a disorder that affects motor planning,
ity and humility about how little we actually know compared to behavior, communication, the sensory motor system, and the
what we think we know; this more personalized path could have dynamic interaction of all of these (Herbert, 2012). Current defi-
significant effect in some lives affected by autism (Donnellan, nitions may fail to communicate the depth, breadth, and infinite
1999). variability in the experience of autism.
We are not saying sensory and movement differences are the Five participants identified with the label of autism provided
cause of autism; in fact, occasional challenges or differences in data for this study. People with autism have well documented
perception, action, emotion, communication, cognition, posture social and communication difficulties. For that reason, a variety
are part of our shared human experience. We all occasionally for- of methods were used to obtain meaningful data.
get why we went into a particular room and have to return to For in-depth interviews, we selected only verbal people with
the original context to remember. We sometimes have trouble autism who were able to articulate at least a portion of their
with a sound or a touch under the “wrong” circumstances, for experiences. All research participants were able to communi-
example. For people with the autism label, however, these differ- cate independently. This may have limited the generalizability to
ences may have at least the following effects: (1) that sensory and individuals with autism who are not able to articulate in the con-
movement differences may be more problematic for people with ventional manner or through augmentative or alternative forms
autism because of the magnitude of differences they experience of communication. Furthermore, all the participants in the study
with intensity, duration, rhythm, rate, frequency and /or timing were white middle to upper-middle class. In addition, the ratio
of movement they experience; (2) events, stimuli and experiences of females to males in this study (3:2) is not representative of the
in the world seem to elicit different response in some people with ratio of females to males in the literature, which is one to four/five.

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Robledo et al. First-hand accounts of sensory-movement differences

Certainly further inquiry is needed that explores the experiences For example, how does pain tolerance and internal auto-
of less articulate verbal and nonverbal men and women with regulation of temperature impact individuals with autism? What
autism as well as exploring the experiences of individuals with is it about the areas of perception, action, posture, emo-
autism from various socioeconomic backgrounds. There is suffi- tion, communication, and cognition that affect these individ-
cient information in the first-hand accounts of autism to suggest uals in an unusual and interdependent fashion? What is the
that such inquiry would be a contribution to our understand- role of external and internal context on the experiences of
ing of all people with the autism label (Barron and Barron, individuals with autism? How might current treatments and
1992; Grandin, 1992, 1995; Williams, 1992, 1994; McKean, 1994; teaching strategies be modified to include the possibility of
Blackman, 1999; Hale and Hale, 1999; Mukhopadhyay, 2000; sensory and movement difference in autism? What types of
Biklen, 2005; Goddard and Goddard, 2012). personalized accommodations are helpful to individuals with
Finally, this research raises new questions that, when answered, autism?
may further expand current definitions and understanding of We hope this research will serve as a catalyst for additional
autism. How do differences in magnitude of intensity, dura- studies that explore the experience of sensory and movement
tion, rhythm, rate, frequency and /or timing of movement differences in autism. This will encourage the collaboration of
create challenges for people with autism? Do differences in individuals with autism and professionals in fields such as neu-
intensity, duration, rhythm, rate, frequency and /or timing of rology, psychiatry, neuroscience, education, psychology as well as
movement occur more frequently in people with autism? Why basic biological sciences so that autism is explored through the
do different type of events, stimuli and experiences in the lens of more recent relevant research on how the brain and body
world elicit different responses in some people with autism? work.

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