You Can Know Me Now If You Listen: Sensory, Motor, and Communication Issues in a Nonverbal Person With Autism

Abstract

This case report describes an intensive approach to treating autism and provides an intersection between a first-person narrative paired with intervention and outcomes. In-depth conversations between a person with autism and an occupational therapist provide insight into understanding differences and difficulties in sensory processing and regulation, praxis, and communication. Individuals with autism may be intellectually and emotionally intact but hampered by deficits that interfere with the ability to move the body efficiently. These sensorimotor deficits underlie the ability to communicate with others and to develop relationships. This article illustrates the benefits of an intensive therapeutic program designed to address sensory and motor differences underlying communication, as well as the vital role the occupational therapist plays in addressing these underlying differences to improve functional communication and social participation.

Full text

The American Journal of Occupational Therapy 547
You Can Know Me Now If You Listen: Sensory, Motor,
and Communication Issues in a Nonverbal Person
With Autism
KEY WORDS
• autism
• communication
• effectiveness
• movement
• sensory processing
Rachel Freret Shoener, BSOT, OTR/L, is Supervisor
of Occupational Therapy at the TALK Institute and School,
395H Bishop Hollow Road, Newtown Square, PA 19073;
rach530@gmail.com
Moya Kinnealey, PhD, OTR/L, FAOTA, BCP, is
Department Chairperson and Professor, Occupational
Therapy, Temple University, Philadelphia.
Kristie P. Koenig, PhD, OTR/L, is Assistant Professor
in the Department of Occupational Therapy, New York
University Steinhardt, New York.
This case report describes an intensive approach to treating autism and provides an intersection between a first-
person narrative paired with intervention and outcomes. In-depth conversations between a person with autism
and an occupational therapist provide insight into understanding differences and difficulties in sensory process-
ing and regulation, praxis, and communication. Individuals with autism may be intellectually and emotionally
intact but hampered by deficits that interfere with the ability to move the body efficiently. These sensorimotor
deficits underlie the ability to communicate with others and to develop relationships. This article illustrates the
benefits of an intensive therapeutic program designed to address sensory and motor differences underlying
communication, as well as the vital role the occupational therapist plays in addressing these underlying differ-
ences to improve functional communication and social participation.
Shoener, R. F., Kinnealey, M., & Koenig, K. P. (2008). You can know me now if you listen: Sensory, motor, and communica-
tion issues in a nonverbal person with autism. American Journal of Occupational Therapy, 62, 547–553.
Rachel Freret Shoener, Moya Kinnealey, Kristie P. Koenig
What do we believe versus what do we know about people who do not speak and who
cannot tell us about themselves? (Donnellan & Leary, 1995, p. 97)
There is growing evidence to suggest that the high prevalence of mental retardation
reported in people with autism is not supported by empirical data and that mea-
sures of intelligence are inadequate to take into account “the interfering symptoms
of autism on the process of assessment” (Edelson, 2006, p. 74). Autism self-advocates
who have gained access to communication after being classified as mentally retarded
have articulated the power of misassumption. As Rubin stated, “I was sadly assumed
to be mentally retarded. No one made the distinction in real life if I was labeled
mentally retarded or was mentally retarded” (Rubin et al., 2001, p. 418).
When David, the key informant in this case report, gained access to commu-
nication at age 14, he vividly described the experience of living with a sensory regu-
latory disorder, dyspraxia, and having no means of communication despite his
intelligence. David is an 18-year-old student diagnosed with pervasive developmen-
tal disorder not otherwise specified, apraxia of speech (a neurological motor speech
disorder), and dyspraxia (a sensory-based movement disorder).
I began so angry typing and never had dreamed to be having dreams ever, then the typ-
ing here in OT freed my little voice to be heard and I could release anger finally, and
I could need no more to hold in all my thoughts because I can tell in real words finally
all I needed, and little by little through years of daily struggle of working the muscles
and trying to focus to stay still and really learning to feel my body move when I walk
or talk and control movements.

548 September/October 2008, Volume 62, Number 5
David attends a private school for students with language
disorders, autism spectrum disorders (ASD), and apraxia of
speech. The curriculum is characterized by an emphasis on
speech and language using the Association Method, intensive
speech therapy, intensive occupational therapy, and the rapid
prompting method (RPM; Mukhopadhyay, 2007). The asso-
ciation method is a multisensory, phonics-based curriculum
that systematically teaches children with language disorders
to speak, read, and write fluently (DuBard & Martin, 2000).
Speech therapy is provided intensively to develop precise
articulation, oral motor control, and verbal fluency.
Intervention is specifically designed to reduce or alleviate the
student’s difficulties in decoding, organizing, associating,
storing, and retrieving information pertinent to the produc-
tion of clear, articulate speech. Occupational therapy is pro-
vided using a sensory integration approach, a relationship-
based approach, and principles of motor learning and motor
control. Sensory integration focuses on somatosensory, pro-
prioceptive, and vestibular experiences to improve sensory
modulation and establish body scheme as a foundation for
praxis and motor planning. A relational approach is based on
respect for people and building a relationship on trust, which
leads to the student’s desire to be engaged in learning and
relationships (Greenspan & Wieder, 1998, 2005). RPM,
developed by Soma Mukhopadhyay, focuses on the initiation
of responses without physical support using tactile, visual,
verbal, and auditory stimuli (Mukhopadhyay, 2007). RPM
focuses the student’s attention on written alphabetic and
numeric symbols to provide a communication method for
people who are primarily nonverbal.
After several months of using these methods, David
learned to independently communicate through typing.
Through this newfound ability to communicate, David has
shared many insights, including his difficulties with body
movements, his sensory challenges, and his love of life by
having found a means of communicating with others.
Through these descriptions, occupational therapists can gain
insight into guiding effective interventions. Like people with
cerebral palsy, Parkinson’s disease, or stroke, those with
autism may be intellectually and emotionally intact, even
though their bodies do not reliably allow them to demon-
strate who they are and what they know. The importance of
occupational therapy cannot be overstated. In David’s words,
We want to be heard but it’s hard and in here being [in]
OT has helped me tell my story of [a] happy life that’s come
since being able to talk, but before that I had to be cautious
because I was so much overlooked to be ignorant and to be
able to share.
Occupational therapist: What was it like for you to finally
be able to communicate?
It was heaven.
Assessment Results
Occupational therapy is based on the principle that engage-
ment in occupation includes the subjective (emotional or
psychological) aspects of performance and the objective
(physically observable) aspects of performance (American
Occupational Therapy Association, 2002, 2003). David’s
goals, based on a thorough evaluation, were to address the
developmental parameters of sensory processing and modu-
lation, motor/praxis, emotional/relational, and communica-
tion/cognition. Table 1 displays initial evaluation results for
David as well as the current results of the Sensory Profile
(Dunn, 1999). Administration of standardized testing
revealed significant difficulties with balance, strength, gross
and fine motor skills, visual motor skills, and motor plan-
ning/praxis skills. Although David was unable to complete
these assessments in 2002, he was able to complete them in
2007 after intervention, and the results are summarized in
Table 2. Clinical observations provided further evidence of
both difficulties and progress in these areas, as described in
Table 1. Sensory Profile Test Scores for David
Category/Section
Difference Rating
2002 2007
Sensory Processing
Auditory processing Definite Definite
Visual processing Typical Typical
Vestibular processing Definite Definite
Touch processing Definite Typical
Multisensory processing Definite Probable
Oral sensory processing Definite Typical
Modulation
Sensory processing: endurance/tone Definite Typical
Modulation: body position/movement Definite Probable
Modulation: movement/activity level Definite Probable
Modulation: sensory input/emotional Probable Typical
Modulation: visual input/emotional/activity Definite Typical
Behavior and Emotional Responses
Emotional/social responses Definite Probable
Behavioral outcomes of sensory processing Definite Probable
Thresholds for response Definite Definite
Factors
Sensory seeking Definite Typical
Emotionally reactive Definite Probable
Low endurance/tone Definite Typical
Oral sensory sensitivity Definite Probable
Inattention/distractibility Definite Definite
Poor registration Typical Typical
Sensory sensitivity Definite Definite
Sedentary Definite Definite
Fine motor/perceptual Definite Definite
Note. Typical = within 1 SD from the mean; probable = within 1–2 SD from
the mean; definite = ≥2 SD from the mean.

The American Journal of Occupational Therapy 549
Table 3. The primary therapist who obtained these clinical
observations is certified in the Sensory Integration and Praxis
Tests from the University of Southern California/Western
Psychological Service and has extensive experience providing
occupational therapy using a sensory integrative frame of
reference. David’s behaviors and skills were analyzed by
administering specific observations that include those origi-
nally defined by A. Jean Ayres as “clinical observations”
(Blanche, 2002). His present levels were documented in his
individualized education plan each year. Annually, David
participated in occupational therapy evaluations involving
standardized and nonstandardized assessments to document
changes over time. The evidence indicated sensory process-
ing difficulties involving modulation of his sensory system
and dyspraxia, a sensory-based movement disorder.
Goals and Plan for Intervention
Specific goals and interventions were designed according to
David’s needs for functional performance and engagement
in meaningful occupations at school and at home. David has
been an active participant in an intensive academic language
program and intensive intervention during speech and lan-
guage therapy (8 hr weekly) and occupational therapy (6 hr
weekly). Table 4 details David’s daily schedule at school,
including academic instruction and specific therapeutic
interventions. Occupational therapy intervention occurs at
the school in treatment rooms fully equipped with numerous
ceiling hooks for suspended equipment, therapy balls, mats,
fine motor activities, visual motor activities, and a variety of
gross motor equipment. Occupational therapy involves a
sensory integration approach using key constructs that dem-
onstrate fidelity to occupational therapy–sensory integration
intervention. These include ensuring physical safety, present-
ing sensory opportunities, maintaining appropriate level of
alertness, challenging his postural and bilateral motor con-
trol, collaborating in activity choice, and challenging his
praxis and organization of behavior (Parham et al., 2007).
Although David’s challenges can be recorded as severe and
his progression slow, he has demonstrated tremendous
improvement in his adaptive responses and functional prog-
ress in all areas over a 5-year period.
Sensory Processing
The prevalence of a sensory processing disorder in the gen-
eral population (5%–14%) is significantly less than in the
population with ASD (80%–90%; Ahn, Miller, Milberger,
& McIntosh, 2004; Huebner, 2001; O’Neill & Jones,
1997). Through his typing, David described his sensory
processing disorder:
Table 2. 2007 Test Scores for David
Sensory Integration and Praxis Tests
(Ayres, 2004) Subtests SD from the M
Postural praxis –3.00
Sequencing praxis –3.00
Oral praxis –3.00
Bilateral motor coordination –2.66
Praxis on verbal command –3.00
Bruininks–Oseretsky Test of Motor Proficiency,
2nd edition (Bruininks & Bruininks, 2005) Age equivalents
Fine motor precision <4.0
Fine motor integration <4.0
Manual dexterity <4.0
Upper-limb coordination 6.3–6.5
Bilateral coordination 4.6–4.7
Balance 4.10–4.11
Running speed and agility 5.0–5.1
Strength 4.10–4.11
Beery–Buktenica Developmental Test of Visual–
Motor Integration, 5th edition (Beery & Beery, 2004) Age equivalents
Visual perception 2.11
Motor coordination 3.3
Visual–motor integration 3.6
Table 3. Clinical Observations and Functional Skills
2002 2007
Significant difficulty motor planning
to imitate body positions
Able to imitate body positions with
close approximation
Significant difficulty motor planning
to gesture during conversations
Emerging use of gestures, such as
reaching out to touch a person’s
shoulder and pointing to indicate
desired objects during conversations
Required facilitation to manage and
don clothing; difficulty buttoning
shirt
Able to dress independently; able to
orient to the front of the shirt and
don independently; buttons shirt
independently
Unable to perform smooth projected
action sequences; slow responses
Able to demonstrate smooth pro-
jected action sequences such as
catching a ball when thrown to the
side, away from midline
Often displayed rigid and jerky
movements; decreased balance and
slow responses
Smooth and fluid movements;
improved balance, for example can
stand and balance to tie his shoe
Difficulty with visual attention and
eye contact; significant difficulty
integrating vision with whole body
movements
Attends visually with greater ease;
engages in eye contact easily for
several seconds at a time during
conversations; improved integration
of vision with whole body move-
ments, such as to walk on uneven
surfaces while looking at the visual
environment
Initial typing began by pointing very
slowly to one letter at a time using
large movements from his shoulder
Types using small hand and finger
movements; learning to isolate
and individualize each finger with
increased speed and accuracy

550 September/October 2008, Volume 62, Number 5
Perceptions of senses: the senses all don’t work right and I
struggle to think, Really each time I use my body I can’t feel
my body; it feels stiff, I can’t move how I want; no muscles
work; they are really cement, The ears work but the sounds
are mixed up with all the sounds around the room, Sounds
are accosting me, I see but my body really can’t move in
response to each hard thing around me, Taste is ok, it’s
extreme; smell is all inside the room and that’s overwhelming
to my head and brain.
Intervention, Progress, and David’s
Response
David is actively engaged in an individually designed sensory
diet (Frick & Hacker, 2001) four times daily with specific
sensory experiences to facilitate regulation and to increase
his body awareness. Intervention includes a “brushing and
buzzing program” (tactile input and deep vibration massage
to skin, muscles, and joints) and “heavy work” (involving
active proprioception, such as pulling and pushing with
added resistance). David also participates in therapeutic lis-
tening, a modified program specifically designed to desensi-
tize sound sensitivity and to improve auditory processing
(Frick & Hacker, 2001; Hall & Case-Smith, 2007). Because
his auditory system is highly sensitive, his program was scaled
back, slowly increasing listening time as he was able to accept
more auditory input.
The OT helps my body move better. OT much improved my
senses. They used to need more controlling me, but OT has
made my body calm, and now OT helps me use my body
how I want instead of it controlling.
In response to his sensory diet:
Touch is now heightened, From brushing, I’m now feeling
my body for how to each time move, and it feels good know-
ing where it is now instead of moving it to feel it, but now I
know I can move because it’s now usable. It’s getting easier
to move and think together.
David is able to discuss his “self-stimulative” behaviors,
which are common in people with autism. He indicates that
these “behaviors” serve a purpose beyond simply stimulation
of the body and can be better described as “self-regulatory.”
Although self-stimulative behaviors have been viewed as
atypical or disruptive, it is important to understand the
underlying reasons for these actions and fashion an appropri-
ate therapeutic intervention (Koenig, Stillman, & Kinnealey,
2006; Stillman, 2003). David’s self-regulatory actions fre-
quently involve vocalizations, moving around the room, and
Table 4. Example of David’s Schedule: Academic Areas and Therapeutic Interventions
Occupational Therapy: Individual therapy sessions focus on the developmental parameters of sensory
processing/modulation, motor/praxis, emotional/relational, and communication/cognition.
Example of a typical session:
Sensory diet/body wakeup: Sensory diet provided according to his individual needs and may include brushing and “buzzing,” body awareness activities provid-
ing proprioception and joint/skin compression with active muscle contraction such as wall push ups or prone wheelbarrow walks over peanut. Therapeutic
listening provided before therapy session.
Active sensorimotor activities: Activities such as prone in net swing, holding dowel horizontally and bilaterally, reaching in front or to side to knock down tar-
gets, walking down a balance beam while focusing visual attention across the room to read a sentence.
• A primary focus of each activity is developing a trust relationship between the therapist and individual.
• Each activity is adjusted and fine tuned to provide a “just-right challenge” in each of the five developmental parameters listed previously mentioned. Each
activity focuses on combining language and body action.
Association Method: The Association Method (DuBard & Martin, 2000) is a systematic, multisensory, phonics-based method used to develop fluency of reading,
writing, and oral language skills. Speech and language pathologists work in the classroom with the teachers to collaborate on his specific needs and learning pro-
cess. The occupational therapist provides ideas to adapt the classroom environment and materials based on his needs as well as to provide intervention for regula-
tion, sensory support, and writing or typing abilities.
Snack Time, Sensory Diet According to His Needs, and Motor Group: Motor planning activities are coupled with language. For example, jumping rope while
counting by 10 or basketball drills involving passing, dribbling, or shooting while naming capital cities in the United States (concepts from a history lesson).
Language Group Lesson: Language groups such as calendar or journal discussions are taught by teacher or speech and language pathologist. These language
groups are important for the motor memory and auditory memory practice of sequencing sounds into syllables, syllables into words, and words into sentences,
ultimately developing automaticity of speech and language.
Lunch Time
Recess: Group activities coordinated by occupational therapists and teachers, such as baseball, kickball, or gross motor activities on playground equipment.
Sensory Diet According to His Sensory Needs
Speech Therapy: Individual therapy sessions focus on articulation, proper rate of speech, breath support, volume, the development of auditory memory, and the
automatic recall of language.
Academics From Curriculum: Math, science, and history units are taught according to his academic level. Language components from the Association Method
are targeted and reinforced during this time to increase verbal communication, and Rapid Prompting (Mukhopadhyay, 2007) principles are used to enable him to
express his true level of comprehension of the subject matter through typing.

The American Journal of Occupational Therapy 551
stroking his face. These actions appear to be used for differ-
ent purposes at different times—sometimes to assist with
calming and decreasing anxiety, sometimes to block out
bombarding sensations, or sometimes to organize his
thoughts. Regardless of their importance, David is self-
conscious about these actions and would like to stop.
Really they help me to calm and be watchful really around
the room and feel better, We need them and can’t control
always like breathing.
Occupational therapist: Are there things someone could
do that might help you with these behaviors?
Yes to let me get really a lot of movement breaks before sitting
and concentrating for a long time.
Occupational therapist: How do you describe what it
looks like when you are attending to something?
Always aware, never secure.
Motor Skills, Praxis, and Movement
Differences
Praxis is defined as the ability to have an idea of what to do,
plan and sequence the action, and execute the action (Ayres,
1979; Miller, Anzalone, Lane, Cermak, & Osten, 2007).
The idea, plan, and ability to act are based on the sensori-
motor understanding of our bodies and what they can do.
When we give our bodies “commands,” they should respond
in the way we intended. The inability to do this is dyspraxia,
a sensory-based movement disorder in which people have
difficulty with volitional and controlled body movements
(Miller, Cermak, Lane, Anazalone, & Koomar, 2004; Miller
et al., 2007). Dyspraxia can also be found in the face and
mouth, which interferes with facial expressions and speech.
In spite of movement differences and dyspraxia, receptive
language and cognitive ability can be intact (Davis, 2001;
Donnellan & Leary, 1995; Leary & Hill, 1996.)
Donnellan and Leary (1995) described movement dif-
ferences in people with ASD, Parkinson’s disease, and cata-
tonia as an interference or shift in the efficient or effective
use of movement occurring when a person is starting, stop-
ping, executing, continuing, combining, or switching move-
ments. There is ongoing research on movement differences
and motor challenges for people with autism (Davis, 2001;
Donnellan & Leary, 1995; Greenspan & Wieder, 1998,
2005; Leary & Hill, 1996; Mostofsky et al., 2006;
Teitelbaum, Tietelbaum, Fryman, & Maurer, 2002). For
people like David, developing and executing a motor plan
efficiently is difficult and frustrating. He explained,
Moving my body is impaired and I can’t move and think at
the same time. My body feels like cement and moving takes
so much hard concentration.
Intervention, Progress, and David’s
Response
David’s therapy program has been designed to incorporate
body awareness with motor planning and use of each of the
senses: to look, speak, hear, and move at the same time.
To type I move one hand, but to speak takes my mouth which
always never moves right, I have words I want to share all
the time. Teach me how...Really just moving is hard.
Occupational therapist: How is it different now than
before OT?
Absolutely much easier.
Communication and Behavior
In OT there’s happiness, in [this school] there’s happiness
because here I find my place . . . learning only lessons of hope
necessary like air for lungs and learning lessons of kindness to
myself, seeing me not as retarded, forgotten, less than human,
but as a smart mind trapped and slowly pushing through the
dismal body to show my brilliant mind.
From an educational background and knowledge of the
human body, the sensory systems, and psychosocial con-
cepts, the occupational therapist has the preparation to be
able to provide a safe place to voice emotions, difficulties,
and accomplishments. Occupational therapists must have a
primary focus on intervention that enables the individual to
develop volitional control of his or her body while presuming
intellectual competence. David is an example of a student
for whom a team of professionals was willing and able to
provide intensive intervention and support. His improved
motor abilities enabled him to communicate and participate
more fully in his daily life.
The enhancement of therapy when ongoing communica-
tion is incorporated can be multifaceted. As Rubin et al. (2001)
stated, “Our view is that competence should be presumed, with
the burden on the teachers and others around the person to
find ways of helping the person communicate” (p. 427).
I am able to type out all my thoughts and feelings about
autism and being a boy struggling and really enslaved by
it and then [this school] gave me the ability to type and be
heard after 14 years of no one hearing me or knowing that I
had any intelligence and now I’m working on speaking and
being confident with my voice and having friends. I only
secretly dream for independence and for love and to have
friends that see the real me and that want only to be nice
to each person in the world no matter how difficult or how
they struggle in life to be or what they look like in physical
appearance because it’s the heart that lives and love for the
inside is all each person really wants in life and it’s all I want
and it’s all autistic kids dream about.

552 September/October 2008, Volume 62, Number 5
Discussion: Shifting Our Thinking
Learning how to interact and respond to the world is often
extremely difficult, frightening, and intimidating for people
with autism. Personal narratives from people with ASD,
coupled with their responses to interventions, can give the
therapist insight into how significantly a person’s sensory
processing, motor challenges, and communication difficul-
ties impede independence. Occupational therapists can
play a key role in reducing the interference of ASD on
occupational performance. David’s narrative highlights the
following key principle: Always presume intellect and
believe in the potential for competence (Koenig et al.,
2006; Stillman, 2003).
It is important to demonstrate belief in the student’s intel-
ligence through daily interactions. Edelson (2006) highlighted
the inability to accurately empirically test the intelligence of
people with ASD and suggested that autism may be a perfor-
mance deficit rather than a cognitive deficit. David’s narrative,
in conjunction with previous intelligence testing that wrongly
placed him in the mentally retarded range, highlights the
danger of not presuming intelligence. The “least dangerous
assumption” suggests that when there is no absolute evidence,
it is essential to make the safest and most respectful assump-
tion that would be the least dangerous to the individual if
proven to be false (Rossetti & Tashie, 2002).
Conclusion
David continues to receive occupational therapy services
with the goal of greater self-regulation and freedom of move-
ment, with full participation in relevant occupations and
independence as primary goals. He often discusses his goals
for making friends, going to college, teaching about autism,
and living independently.
Occupational therapist: How do you see yourself?
A teenager who has a lot of struggles but determined to
conquer.
David has dreams and goals for the future:
Here the dreams mean taking my hand to help me to walk
and talk and invite someone into my life and thoughts and
to know each other like life friends. Those are my dreams.
I dream for the world to be hearing my voice, to change
people’s ideas about some struggles of autism, and for hope to
be realized by others with autism.
Personal narratives provide insight into a process that
goes beyond what can be measured (Jones, Zahl, & Huws,
2001). What does it mean to listen to David’s voice? David’s
narrative contributes to a new understanding of what it means
to be a nonverbal individual with autism. It does not mean
that David speaks for everyone on the autism spectrum. By
their nature, single case reports inevitably raise questions of
whether conclusions can be generalized to a larger population.
Nevertheless, important elements from this study are sup-
ported from existing literature, including the motor and per-
formance difficulties that may be mistaken for a generalized
cognitive deficit (Davis, 2001; Donnellan & Leary, 1995;
Edelson, 2006; Greenspan & Wieder, 1998, 2005; Leary &
Hill, 1996; Mostofsky et al., 2006; Teitelbaum et al., 2002);
the frustration that may be observed and misinterpreted; and
the need for professionals to initially presume a higher intel-
ligence than is readily apparent in people with these disorders.
Rubin’s narrative highlights that full participation for people
with autism “includes having a stake and effect in redefining
the notion of ability and diagnostic classifications associated
with presumed ability or disability” (Rubin et al., 2001, p.
426). Professionals have an ethical obligation to seek methods
for communicating with people with ASD that will access
their intelligence and free their voices. s
Acknowledgments
We offer a special thank you to David for sharing his won-
derful insights with us. Thank you, Bill Stillman, Jeannetta
Burpee, and Melinda Kotler, for your amazing determina-
tion and sincere passion that inspires all who work along side
you. Thank you to our colleague, Monica Conte, for your
insight and skill in cotreating David. Thank you to the
Magnolia team, Jackie Brown, Jeremy Miller, Suzanne
Hartman, Michael Meehan, Antonelle Fragment, and Linda
Murray, for the opportunity to collaborate on a daily basis
and provide such a wonderful learning environment for
students and professionals alike. Thank you to the people
with ASD who are teaching us so much—most important,
how to listen to your voices.
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