Finding a Friend in School

Contributed by Kim Davis from the Indiana Institute on Disability and Community

When a student is in school, academics are the main focus. However, one aspect of learning that is not given enough emphasis is community building and developing relationships/friendships; the social aspect of education. Social goals and building friendships are mentioned in school conferences but are seldom fully explored and many times a student’s support team thinks academic success is the key to future accomplishments in secondary education and employment as well as helping to provide for a rich social life. This idea needs rethinking.

Social development implies that more than one person is involved, and that there are interactions with others and that there is participation in an activity. We are all social beings and need interaction to continually learn and develop. In schools, the word “social” is often found in the Individualized Education Program (IEP) annual goals:

Main Goal: Johnny will improve his social skills
Obj. 1: He will say please and thank you,
Obj 2: He will sit with a peer to play a game for 20 minutes, and
Obj 3: He will cover his mouth if he coughs.

Those are useful social skills, but are they the only type of goals that should be written in an IEP? There are other opportunities in school for true ‘social’ situations. Surely, if one thinks hard enough, other options can be discovered.

There are many opportunities for social interactions at school that are often overlooked due to limited time and the focus on keeping things moving. However, with some planning these opportunities can become excellent chances to develop and enhance social exchanges. It is important to think creatively in order to build in new chances for relationships to develop. Elementary, middle, and high school offers chances for building social networks, friendships and communities. At the secondary grade levels, there are more varied options offered by the school. At the each level, an adult, acting as a facilitator, may be necessary to get the relationship going or to offer ongoing support. Consider the following options as places that a student on the autism spectrum and his/her peers can begin to develop meaningful relationships. Remember, every relationship starts slowly and then grows as people get to know one another. What everyone needs is the opportunity. Here are some ideas to consider:

Getting on and off the bus:
Instead of a parent driving a student to school, have the student ride the bus or even carpool with a neighbor or classmate. If they have to wait, a peer or peers could wait in line for the bus along with the student with ASD.

Before school:
The student should be where other students are in order to participate with them; such as hanging out with peers in the gym, cafeteria or hall instead of simply going to the classroom.

In the halls:
A peer buddy could walk with the student with ASD to the next class or to the library, gym or cafeteria. Sometimes the student might need to leave early to avoid hallway congestion which could cause sensory challenges.

Before class starts:
Peers could assist the student in prepping for class or simply chat until class begins, just like other students do.

Class breaks:
Going to the restroom, getting a drink or simply having some down time in class could all be supported by peers.

Group activities in class:
Anytime there are group activities be sure the student with ASD is included in a group that has peers who know him or her, and understand the strengths and gifts of that student.

Lunch:
Include the students with ASD with everyone else and use peer support instead of having them sitting alone or at the special education table.

Recess:
This time has been described by one boy with ASD as his “personal hell” due to bullying, not knowing what to do, or no one interacting with him. This is the perfect time to have peers interact and support the student with ASD. They can rotate around by doing a different activity of interest with the student or introducing a new activity.

After school activities: These will be different for each level. Elementary activities may be after school day care or extended day programs. These certainly offer opportunities for student on the spectrum to play with their peers. Other events tend to be done in the evening for the family.

Middle and high school offers a variety of activities that are immediately after school such as clubs, music, or sports events.

Music: Many schools have a music program at holiday time. Students should have the chance to participate in those singing and musical events so their families can know that joy. Perhaps they do not sing every number but instead ring a bell, tap a drum, or hold a prop. The student should be there as much as possible.

At the middle and high school level there are more musical options that become available. Learning to play an instrument and joining band begins in middle school. This can lead to other opportunities such as a concert band, marching band, jazz band or pep band for sporting events. There are also drum line groups. Orchestras would play concerts and also for musical plays.

One does not need to play an instrument to enjoy music. Middle and high schools also have choirs and choral groups that sing at school events and also compete.

Finally, if a student really enjoys music there is always the need for band boosters who provide support to the various music activities at schools.

Drama: A theatre program may be available at middle school but for sure is available at the high school level. There are different parts of putting on a play that a student may enjoy besides being an actor with a role. The other aspects include: creating the set, managing the sound, adjusting the lighting, setting up and moving set props, cueing the actors, and the designing and creating of the costumes. Each aspect involves a different skill and may tap the interests of the student with autism.

Clubs/Organizations: Schools have an abundance of extra- curricular organizations that could be fun for any individual with ASD based on his/her interests. The huge interest in certain books or movies often creates a place to begin exploring ideas.

Here is a sample listing:

Art Club
Best Buddies
Book Club
Chess Club
Brain Game/Quiz Bowl
Digital Arts Society
Foreign Language Club
Environmental Club
Habitat for Humanity Group
Year Book
Newspaper
Ping Pong Club
Poetry Club
Science Olympiad
Spell Bowl
Student Council
Swing Dance
Backpacking Club
Black Culture
Diversity Club
Ham Radio Club
Gothic Club
Photography Club
Ski Club
Speech and Debate
SADD
Computer Games Club
Yearbook

Once again, the interest area of the student should drive the club or organization that he joins. Each club meets on a regular basis and that increases the chance for developing meaningful relationships.

Sports: Finally, there are athletic events at both middle and high school levels. Both boys and girls athletics offer a wide variety of opportunities for interactions from participating on a team to being a member in some other fashion. Options include: managers, scorekeepers, time keepers, equipment caretakers, equipment room managers and a batboy or girl.

Here is a potential list of teams to consider. Each offers different opportunities for participation.

Baseball
Basketball
Football
Volleyball
Golf
Tennis
Softball
Soccer
Track
Swimming
Cross Country
Wrestling

Of course with athletics comes cheerleading, or pom squad opportunities. These groups are also a big part of middle and high school. Here someone could participate in cheering but also in creating posters or signs for the school, making announcements, posting announcements or posters or creating any other team spirit materials.

Truly, some of these options may be more challenging than others when it comes to creating meaningful social interactions. But it is worth looking at them all, even small and successful interactions can eventually grow into true friendships. Everything can start small and build from there. Consider the use of peers in each situation to simply begin the process of relationship building and helping your students with building a community based on interests and skills. Their life and the lives of his peers will be greatly enriched.

Davis, K. (2010). Finding a Friend in School. The Reporter, 15(4). Retrieved from http://www.iidc.indiana.edu/index.php!pageID=3280

 

 

Rethinking Autism: Implications Of Sensory And Movement Differences

This article  was written by Anne M. Donnellan, University Of San Diego;  David A. Hill, Toronto, Ontario; Martha R. Leary, Halifax, Nova Scocia; and was published in the Disability Studies Quarterly,Vol 30, No 1 (2010)

Abstract

Descriptions of autism in the Diagnostic and Statistical Manuals of the APA and throughout much of the history of autism emphasize difficulties in social interaction, communication and imaginative play. Recent reports by self-advocates, neuroscientists and other researchers suggest that sensory and movement differences may play a significant part in the lives of those who live with autism. Sensory and movement differences may include difficulties in starting, stopping, continuing, combining and switching motor action, speech, thought, memory and emotion. A review of these reports, the experience of those with other movement differences, and implications for understanding individuals with autism are presented. Suggestions are included on how knowledge of sensory and movement differences may offer guidance in rethinking assumptions about autism characteristics, social interactions, communication and other supports. Authorship is considered equal. The authors wish to thank Dr. Gail Evra for her invaluable editorial assistance. I was intensely preoccupied with the movement of the spinning coin or lid and I saw nothing and heard nothing. I did it because it shut out sound that hurt my ears. No sound intruded on my fixation. It was like being deaf. Even a sudden noise didn’t startle me out of my world.

(Grandin, 1992)

People labeled with autism often move their bodies in ways that are unfamiliar to us. Some people rock, repeatedly touch an object, jump and finger posture while other people come to a standstill in a doorway, sit until cued to move, or turn away when someone beckons. As professionals trained to see these as autistic behaviors, most of us have interpreted such movements as both volitional and meaningless; or as communicative acts signaling avoidance of interaction and evidence of diminished cognitive capacity; or as some combination of these, and often have targeted them for reduction. We have taken a socially constructed interpretation of what we see and have built a “theory” of autism.

This paper challenges the traditional definitions of autism that give primacy to a triad of deficits in social interaction, communication and imaginative play (Wing, 1981; Diagnostic and Statistical Manual of Mental Disorders-IV (DSM-IV) (APA, 2000). The approach is both widely known and essentially unchallenged despite broad acknowledgement that autism is a condition that reflects some differences in a person’s neurology. Typically, the neurological implications have not become part of the description. Over the past two decades, however, researchers and self-advocates have begun to rethink this socially defined focus. They express concern that children and adults with the autism label may be challenged by unrecognized and significant sensory and movement differences (e.g. Hill & Leary 1993; Williams, 1993; Bristol, Cohen, Costello, Denckla, Eckberg, Kallen, Kraemer, Lord, Maurer, McIlvane, Minshew, Sigman, & Spence, 1996; Donnellan & Leary, 1995; Leary & Hill, 1996; Filipek et al., 2000; Donnellan, 2001; Sullivan, 2002; Dhossche, 2004; Bluestone, 2005; Nayate, Bradshaw & Rinehart, 2005; Endow, 2006; Jansiewicz, Goldberg, Newschaffer, Denkla, Landa & Mostofsky, 2006; Mostofsky et al., 2006; Leekam, Nieto, Libby, Wing & Gould, 2007; Markram, Rinaldi & Markram, 2007; Tomchek & Dunn, 2007; Gernsbacher, Sauer, Geye,Schweigert, & Hill Goldsmith, 2008; Green, Charman, Pickles, Chandler, Loucas, Simonoff, & Baird, 2009; Goldman, Wang, Salgado, Greene, Kim & Rapin, 2009; and Mostofsky, Powell, Simmonds, Goldberg, Caffo, & Pekar, 2009).

Researchers and others describe these differences using a variety of terms, such as motor problems, sensory-integration problems, inertia, sensory overload, apraxia, dyspraxia, echolalia, mutism, behavior disorder, catatonia, or clumsiness. To reflect the range and complexity of sensory perception and movement related phenomena, we use the term “sensory and movement differences” as it encompasses the dynamic interaction of sensation and movement (Gibson, 1979; Thelen & Smith, 1995) while acknowledging that many differences are merely part of the richness of human diversity.

Behavior is highly interpretable. Some behaviors may be communicative; some may be volitional. Some behaviors, however, may not be intentional. Rather, observed behaviors may be artifacts of the difficulties a person may be having in organizing and regulating sensation and movement. Still others may be subtle signals of the desire for relationship or expressions of meaning. Therapeutic and intervention-based approaches, designed to address perceived and identified challenging and problematic behaviors of individuals with autism, tend to oversimplify the complex nature of human interactions in an attempt to delineate and manipulate variables contributing to and sustaining particular behaviors.

As we have professionalized interactions with people with autism, we have trained professionals, parents and others to interpret what happens in terms of simple, binary views of behavior (i.e. good/bad or positive/negative), and to see behavior as controlled by immediate, situational antecedents and consequences. When we focus on these socially constructed expectations for behavior and communication in our fast-paced, super technological world, we miss opportunities to know and understand people who may experience their existence and interactions in very different ways. Behaviors may not be what they seem to be (Donnellan, Leary & Robledo, 2006).

Our interest in the topic of sensory and movement differences has grown from reports by many self-advocates with the autism label and their caregivers that disturbances of sensation and movement are a constant concern, frequently constraining the ability to communicate, relate to others and participate in life (e.g., Strandt-Conroy, 1999; Barron & Barron, 1992; Rubin, Biklen, Kasa-Hendrickson; Kluth, Cardinal, & Broderick, 2001). Organizing and regulating sensory information and movement in order to participate in social relationships may be frustrating for people with such differences. These differences can involve difficulties initiating and executing movements or difficulties with stopping, combining, and switching sensation and movement, including speech, thought and emotion (Hill & Leary, 1993; Donnellan & Leary, 1995; Donnellan, Leary & Robledo, 2006), making social relationships and many other activities very challenging and even overwhelming.

Self-advocates also report that they lack sensation or feedback from their bodies and may feel physically unaware of their facial expressions, position in space and movements (e.g., Blackman, 1999; Hale & Hale, 1999; Williams, 1996a, 1996b, 2003). Some experience the sights and sounds of their world as being painfully intense (Condon, 1985; Williams, 1992 & 1996b; Markram, Rinaldi & Markram, 2007). Extreme emotions can cause the individual to become stuck, unable to initiate or cease repetition of a movement. Self confidence and reputation often suffer when others assume a person is repeating an action “on purpose.” Sean Barron wrote, “All I wanted was to be like the other kids my age. It felt as if I was weird and strange on the outside, but inside I wasn’t like that. The inside person wanted to get out and break free of all the behaviors that I was a slave to and couldn’t stop” (Barron & Barron, 1992, p. 181). For many people, as for Sean, simple movements can lead to repetitions or perseveration, even when they want to stop the movement.

Our concern here is not to discard useful information already accumulated via a primarily socially defined approach to autism. Nor are we interested in enhancing a deficit-based approach to understanding autism, or in creating a new disability category. We do not propose to specify a cause of autism or a site of lesion or dysfunction within the central nervous system. Rather, we write to share our emerging awareness that people may struggle with difficulties that are not immediately evident to an outsider. That is, our experience of individuals with autism ought no longer to be assumed the same as their experience. Individuals with the autism label often describe experiences which are not immediately obvious to the rest of us but which may well affect our understanding of their behavior. These experiences frequently fit the definition of sensory and movement differences. Sue Rubin (August 4, 2007 personal communication) described her dilemma with intention and action: “When you said we could stay and asked dad to do the shopping for the Asperger’s barbeque, my body relaxed and autism let me eat the melon.” And two other autistic adults had the following interaction about sensory and movement differences. Judy Endow (personal communication on Facebook, January 25, 2009) described her experiences in relation to sensory and movement differences as follows:

I think the fluidity of access to various places in my brain is dependent upon neurological movement between places. I’m no scientist, but have always been able to “see” this inside of me. Sometimes my speaking is hindered, other times my thinking, and sometimes my physical movement. The hardest is when thinking is not working smoothly. When that happens, I have to line up one thought at a time, like train cars. I like it much better when my thoughts do not have to be methodically lined up, but are more fluid with colors coming in and out and swirling into unique and beautiful patterns. (My thoughts are in pictures and sometimes moving colors).

Phil Schwarz (personal communication on Facebook, January 25, 2009) commented on Judy’s description by using another analogy:

I think that processing bandwidth — what Judy calls “neurological movement between places” — is a critical factor in autism. I think that those of us who learn to cope develop adaptations that allow more parsimonious use of the bandwidth available to us: love of sameness, or of patterns, or of predictability (so that we can apply the bandwidth we do have to *deviations* from the predicted or from the patterns). There is a coherent autistic aesthetic sensibility, that is informed by this search for parsimony of bandwidth use, and for titration of excesses.

This paper explores some of the implications of sensory and movement differences in the development and experiences of individuals with the autism label. We note, of course, that some researchers and clinicians completely deny the possibility that individuals with autism might experience any problems with movement. Rimland (1993), a psychologist long a proponent of a biological approach to autism, wrote the following:

It has been widely recognized for many decades that the vast majority of autistic persons are quite unimpaired with regard to their finger dexterity and gross motor capabilities. They have in fact often been described as especially dexterous and coordinated. The literature abounds with stories of young autistic children who can take apart and reassemble small mechanical devices, build towers of blocks and dominos higher than a normal adult can, assemble jigsaw puzzles and climb to dangerously high places without falling. The files of the Autism Research Institute contain over 17,000 questionnaires completed by the parents of autistic children. Finger dexterity is one question we’ve asked about since 1965. Most parents indicate that their children are average or above in the use of their hands. The idea that autism is, or typically involves, a “movement disorder” is simply ludicrous. (p. 3)

Likewise, Mulick, Jacobson & Kobe (1993), behavioral psychologists, stated unequivocally that clinical experience argues against any motor/movement difficulties, particularly voluntary control of movement as in apraxia:

Scientific evidence for developmental apraxia in autism is lacking. Autistic youngsters are often characterized by better-developed motor skills than verbal skills, even real non-verbal problem solving talent… There is no research evidence at all to support the position that people with autism experience such global problems. The usual clinical finding, familiar to any psychologist who routinely works in this area, is that motor impairment and delay is much less common than communication disorder and delay (Jacobson & Ackerman, 1990, p.274). (Italics in original)

This common approach to autism pays scant attention to possible somatic difficulties resulting from neurological differences. Perhaps, this is a function of the dominance of psychology and psychiatry for the first 50 or more years of the autism story. Yet some psychologists and psychiatrists did report movement differences and even catatonic symptoms in autism long before Rimland or Mulick et al. and others denied the existence of such evidence (e.g. Damasio & Maurer, 1978; Wing & Attwood, 1987). More recently, many researchers have noted the presence of impairments in basic motor skills: gait, posture, balance, speed, coordination (e.g., Ghaziuddin & Butler, 1998; Jansiewicz et al., 2006; Noterdaeme et al., 2002; Rinehart et al., 2006).

Many neuroscientists now are stressing the significance and implications of motor and sensory difficulties in the development of children with autism. For example, Sutera, et al. (2007) looked at four year-olds who had been diagnosed at age two and received early intervention of various amounts and types. Of particular interest were the children who “lost” the diagnosis of autism by age four. Sutera, et al. found that the best predictor of this outcome for very young children with autism is motor skill at age two. Mostofsky (2008) noted this finding and addressed concerns about the exclusion of motor problems from the “core” features of autism in the Diagnostic and Statistical Manual, (APA, 2000) “…despite [an] abundance of literature suggesting otherwise.”

A growing number of researchers and clinicians in a broad range of disciplines continue to stress the importance of studying motor function in autism because, as Rogers and Benetto (2002) reported “….studies show that movement abnormalities are present early in children with autism, and may precede the emergence of the syndrome.” Mostofsky noted: “Motor signs can serve as markers for deficits in parallel brain systems important for control of socialization and communication.” For example, children with autism are often described as lacking reciprocity. Esther Thelen (1941-2004), an innovative researcher of infant development, upon reviewing the issue of motor development in autism asked: “How can you talk about “reciprocity” or lack thereof as a psychological phenomenon if the child has motor problems?” (1997 Personal Communication)

In the course of development, if individuals move and respond in idiosyncratic ways from infancy, they will experience all interactions within a unique frame that most certainly differs from that which is called typical. The cumulative effect of such interactions will be one in which all aspects of relationships, including how to establish and maintain them, may be markedly skewed from the broader cultural consensus and expected rules of how relationships work. (See Stern, 2005; Gibson, 1979; Thelen & Smith, 1995 for reviews of the complex and dynamic interrelationship of movement, perception, relationship and cognitive development.) Our experience and self-advocate reports have taught us that individuals with autism often are aware of their idiosyncrasies, may not be able to control them but do want communication, participation and relationship. In order to make this possible, we need to acknowledge and accommodate the differences so that communication, relationship and participation can happen.

Dynamic Interactions Of Nervous System, Body And Environment

As we have noted elsewhere (Donnellan, Leary & Robledo, 2006), the writings of many authors interested in movement describe a unity of perception, action, emotion, and thought. Moshe Feldenkrais (1904-1984), a physicist, martial artist, and renowned movement practitioner noted: “Our self-image consists of four components that are involved in every action: movement, sensation, feeling and thought” (Feldenkrais, 1972, p. 10). His method is two-fold and may involve independent “awareness through movement” exercises and more hands-on “functional integration” guided movement exercises with the physical assistance of a trained practitioner.

Likewise, in his fascinating book, Awakenings, Sacks (1990) wrote of the self-reports of his patients with post-encephalitic Parkinson’s disease who temporarily “awoke” through the use of the drug L-Dopa. They all had been sick from the same disease, encephalitis lethargica. The area of damage in the brains caused by the disease was clearly established. Nonetheless, each developed his or her own personalized version of movement disorder, and many of their difficulties were unknown to the medical staff until the patients became able to speak. The variety of manifestations of symptoms encompassed difficulties with many hidden aspects of human experience: perception of the passing of time; interest in normal activities; fatigue; memory; and recurring thoughts.

Thelen incorporated dynamic systems models in her innovative research on movement in child development (Thelen & Smith 1994; Thelen, 1995). In this view, perceptions, movement, thoughts, and emotions can be linked together by having coincidentally (and possibly routinely) co-occurred. Experience may selectively reinforce them as a bundle. They can be unbundled or softly assembled as required by the context. The individual is always operating within an environment or context and, as the context changes, systems scan, adjust, and shift as necessary to meet new demands. These contextual shifts play a vital role in movement. Context comes together in such a way as to allow the movement to emerge or not; a movement and, indeed, the person or persons are part of the context (Thelen & Smith, 1994). As Bateson (1972) told us years ago, context is far more than what is left when we take out the part we wish to study.

No single component is causal in determining the movement. As these are dynamic systems, the components are the context that determine the product. Thelen & Smith (1994) further explained that “…even behaviors that look wired in or program-driven can be seen as dynamically emergent: behavior is assembled by the nature of the task, and opportunistically recruits the necessary and available organic components (which themselves have dynamic histories) and environmental support” (p. 73). These may be actions, thoughts, words, memories or sense experiences. Recall Proust, where the smell of a cookie released the hundreds of pages of Remembrances of Things Past.

Thelan’s approach offers new ways to understand the inconsistent abilities and disabilities of individuals with the autism label. Speech is an example of dynamic behavior. Speech is not lost or gained; it emerges when all necessary components recruited, and appropriately regulated and organized, allow its production. Stress often makes speech difficult or even impossible. And stress need not be negative; excitement may also cause difficulties. Paradoxically, for some people with sensory and movement differences, stress also may help produce speech. While presenting with the authors at an Autism Society of America conference in July 1996, Arthur Shawlow, Nobel laureate in physics and father of an adult son with autism, reported that his son could say a complete, and original, context-appropriate sentence about once every eight to ten years. He asked the audience how many parents had similar experiences and at least 18 sets of parents raised their hands. They met and compared notes. Most of the labeled children of these individuals were able to speak under extreme, often negative, circumstances. Some had only spoken once or twice in a lifetime.

Reports of this kind are not unusual in the sensory and movement differences literature, among the autism community, or in our own 100+ years of combined experience with children and adults with the autism label. More common are phenomena such as echolalia, mutism, speech uttered only under unique circumstances, e.g. speaking what they have written. In the dynamic system model, the notion of emergence begins to give us a way to understand and perhaps support people with these differences. Strandt-Conroy (1999) compiled 40 hours of interviews with adults with autism who experienced such symptoms and more. Her interviews had to be adjusted to the specialized needs of the interviewees. Several could only answer written questions sent in advance; others if they were on the phone and in a warm bath. Likewise, the autistic people in Robledo & Donnellan (2007) each had personalized supports to enable them to participate in the interviews. We refer to these specialized arrangements as accommodations after Luria (1932) and Sacks (1990). We define accommodations as adjustments or adaptations of an interaction, a task, situation, or the environment that assist a person to temporarily get around difficulties organizing and regulating sensory information or movement (see Donnellan, Leary & Robledo, 2006 for examples).

Learning From Neurological Symptoms In Other Sensory And Movement Disorders

In our review of the history of movement differences, we found early descriptions of catatonia in the work of Kahlbaum, (1874/1973) which seemed startlingly familiar (see Hill & Leary, 1993; Donnellan & Leary,1995; Starkstein, Goldar & Hodgkiss,1995; Leary & Hill, 1996). In the nineteenth century there was no clear distinction between neurological and psychiatric symptoms. As the two fields diverged in the early twentieth century, however, some conditions gravitated into one or the other. Catatonia is presently defined as a characteristic of certain kinds of schizophrenia, though many have argued over the years for a more neurological view of the disorder (Rogers, 1992; Abrams & Taylor, 1976). The discussion of where to place catatonia and catatonic symptoms is once again topical because of the plan to update the Diagnostic and Statistical Manual of the APA, Some, in fact, are arguing for the inclusion of catatonia as a separate diagnostic category or under “movement disturbances” (Taylor & Fink, 2003; Fink & Taylor, 2006; Penland, Weder & Tampi, 2006; Caroff & Ungvari, 2007;). Irrespective of that discussion, it is useful to look at the symptoms described by Kahlbaum and other early and recent authors as these may illuminate the symptoms seen in individuals with autism and other developmental disabilities.

In Table 1, the characteristic features and symptoms on the left side of the table are borrowed from descriptors specific to several kinds of movement disorders, (Kalbaum, 1874; Fink & Taylor, 2006; Caroff and Ungvari, 2007;http://www.movementdisorders.org/disorders, 2009). The list of movement disorders symptoms is not in any particular order or hierarchy; rather, symptoms are listed randomly as taken from the above literature sources. The intent here is to show the scope of symptoms by feature that may account for certain behaviors seen in autism. Examples of behaviors listed on the right side of Table 1 appear there because they have been discussed in a previously published review of the autism literature and movement disturbances (Leary & Hill 1996). The majority of these have also been documented and observed throughout many years of clinical practice with a large number of individuals with autism across the life span.

Table 1. Characteristic Features of Substantiated Movement Disturbances and Evidence of Possible Overlap of Symptoms in Autism
Movement Disturbance Feature Symptom Evidence In Autism
Repetitive motor actions e.g., Tapping, touching, grimacing
Rhythmical, cyclical movements e.g., Rocking, shrugging, squinting, pouting
Lack of Initiation Requires prompts and cues to perform
Difficulty imitating other’s actions Both immediate and delayed motor imitation difficulties
Echophenomena Mimesis; elaborate copying of others actions — verbal and/or motor
Immobility Remains fixed and inert in position and posture for extended time periods
Withdrawal Isolates self away from focal activity and others
Grimacing Facial/oral-motor movements
Stereotypies Repetitive movements of the hands, limbs extremities and whole body
Aversion Of eye gaze and attention to other
Negativism Oppositional actions elicited with passive movement and overall behavior
Automatic obedience; Suggestibility Extreme compliance in response to verbal suggestion and environmental cues
Rigidity Muscles rigid to passive movement
Bradykinesia Slowness of movements, feebleness
Tremor Essential, intentional, rest, postural etc.
Forced grasping Of another’s hands, wrists, etc., or items in the environment
Akinesia Marked absence of action and movements
Akathisia Motor restlessness, moves about but not goal-directed
Ataxia Loss of coordination in motor action execution
Perseveration Motor or other repeated behavior after being elicited an initial stimulus
Ambitendency Appears “stuck” in indecisive, hesitant movements
Tics Motor and/or verbal
Obstruction; Blocking Incomplete movement towards a goal — “gets stuck” en route to goal
Difficulty with stopping, cessation of movement Will continue movements unless redirected or stopped by an external means
Mannerisms Uses intact and entire motor action sequences out of context e.g., salutes
Waxy flexibility Automatic ease and compliance with assuming unusual postures for extended time
Ballismus Violent, rapid and apparently involuntary actions and movements
Choreiform movements Rapid and apparently involuntary travelling and “dancing” ripples of movement
Catalepsy (posturing) Maintains seemingly uncomfortable and imposed postures for extended time
Athetoid movements Slow, writhing movements and actions
Spasms Muscular spasms of varying durations affecting muscle groups
Dystonias Sustained torsion due to muscle contractions in varied muscle groups
Impulsivity Actions and movements triggered suddenly
Self-injury, mutilation Disturbing and persistent attempts to inflict pain on self
Excitement; Frenzy Marked episodes of extreme amounts of activity for extended time
Aggression, Destruction Unprecipitated violent actions directed to others and the environment
Stupor Prolonged period of total immobility, lack of responsiveness and mutism
Rituals Object-related actions on objects as part of a routine, repeated event
Motility changes e.g. Toe walking, skipping, hopping
Changes in speech behavior e.g., Mutism; question repetition,; echolalia; verbigeration; logorrhoea; foreign accent; changes in prosody; difficulty modulating volume
Autonomic changes Changes in typical autonomic functions e.g., heart rate, perspiration, breathing, core body temperature

Leary and Hill (1996) analyzed the literature on symptoms associated with established movement disorders and those associated with autism. The greatest difference among these disabilities was the interpretation of the symptoms. In Tourette syndrome, Parkinson’s disorder and catatonia, there was a neurological interpretation of symptoms. A social rather than a neurological interpretation was applied if the person had a label of autism. That which is called a “tic” in a person with Tourette syndrome is most often assumed to be a ‘behavior’ (and often a conscious choice) in a person with autism. For symptoms interpreted through a neurological lens, individuals tend to be appropriately supported. In autism, symptoms are viewed frequently as behaviors to be reduced or eliminated, often with a negative intervention and results. Table 2 illustrates descriptions given to similar behaviors dependent on a person’s diagnosis.

Table 2. Differences in descriptions of behavior
Neurological terms Social Interpretation of behavior
Akinesia Non-compliance, social indifference
Festination Behavior excess, careless
Bradykinesia Lazy, slow
Bradyphrenia Mental retardation
Tics Aberrant behavior
Obsessions/ Adventitious behaviors Autistic behavior, ‘stims’

The sensory and movement differences reported by and observed in individuals with autism may have a significant impact on their and our ability to relate and participate in social interactions. A neurological view of symptoms possibly affecting autistic individuals will help us to understand further the nature of differences experienced by these individuals. While the psychological impact is very real as experienced first-hand by participants in such interactions, it is useful to suspend social interpretations of the symptoms so as not to mistakenly ascribe intent and volition to individuals whose behavior may be contrary to what really is intended and able to be communicated.

Detailed personal descriptions of movement and sensory differences found in other disabilities have given us some additional insight as to what it may be like for a person to deal with various symptoms, such as compelling impulses, a loss of conscious control, lack of initiation, akinetic moments and unusual ways of being in the world (e.g. McGoon, 1994). Frequently, the person has both the challenge of the movement difference and burden of blame and misunderstanding. In Strandt-Conroy’s (1999) research, it was often necessary to use vignettes from people with other sensory and movement differences to enable the autistic interviewees to recognize their own experience. Most expressed gratitude for the opportunity to learn about movement differences as they often had blamed themselves for their behavior and thought they were alone in having these difficulties.

Implications Of Sensory And Movement Differences For Understanding People Labeled With Autism

A Different Kind Of Science

Woe to that science whose methods are developed in advance of its problems, so that the experimenter can see only those phases of a problem for which a method is already at hand.

(Murphy,1939, p. 114).

We have stressed the neurological aspects of what are commonly thought of as autistic characteristics and behavior problems. We do not intend, however, to either suggest a whole new category of disabilities in autism nor to eliminate the psychological aspects. The issues here are similar to the challenges faced by those interested in Tourette syndrome. The syndrome was elucidated before the fields of neurology and psychiatry diverged (Gilles de la Tourette, 1885). For many years, psychiatry dominated the discussion and the treatment. In the past few decades, there has been a far greater emphasis on the neurology of the disorder. Yet, it is clear that it is not possible to separate the neurological from the psychological in a living human being. As Sacks suggests (1989) there is need for a different kind of science that views the individual as a whole person, mind and body. This shift has begun in Tourette syndrome. In addition, dynamic systems models of development suggest an emphasis on the unique history and the critical importance of context on the manifestations of the symptoms. Perhaps the present emphasis on discrete “autistic” behaviors tied to specific interventions should be seen in terms of more conscribed value and utility.

Developmental Versus Acquired Symptoms

In addition to the personalized nature of the characteristics and the dynamic nature of the manifestations of a movement difference mentioned above, it is impossible to overemphasize the importance of the developmental aspects of movement differences in autism vs. adult acquired disorders. For example, bradykinesia, or very slow movements, might have a wide range of effects on adults with acquired disorders such as Parkinsonism. In an infant or a toddler, the possible effects of slow responding or delayed initiating would surely have an effect on the entire trajectory of development even if the difference were intermittent or barely perceptible to the parents or professionals. Of course, we are not suggesting that these autistic people have Parkinson’s syndrome; rather, that they report sensory and movement differences which are not obvious to their caregivers, particularly parents of young children. Yet, the potential changes to the “dance of relationships” (Stern, 2000) alone would be worthy of many dissertations in child development. Still, the complexity of the task ought not deter us from attempting such inquiry because it could have enormous implications for our understanding of human development and diversity.

Interpretation Of Symptoms As Volitional

Many of us have accepted without question the implicit message that unusual movements presented by people with autism are always volitional and often pleasurable. Symptoms of sensory and movement difference in autism are consistently interpreted by others as autistic behaviors. Neurological symptoms, such as sudden, loud vocalizations; being in constant motion; extreme response to minor changes; unusual mannerisms and gait; and “unmotivated” laughter are examples of behaviors commonly thought to be performed “on purpose” and targeted for behavioral intervention. A social interpretation of these symptoms leaves people with the assumption that they occur as a matter of choice, apathy, or learned behavior. Aggression during an episode of catatonic frenzy is viewed differently if the neurological aspects of the person’s experience are considered. Typically, reprimands or contingent praise would not be used to change a recognized neurological symptom. As noted, the non-volitional aspects of behavior are rarely considered for people with autism. For example, the authors have all too often heard criticism and disparaging descriptions such as lazy or non-compliant applied to a person with autism who is in a non-responsive state. Frequently, the difficulty is related to stress, even the stress of excitement. An all too typical example is staff or family reporting that the child or adult refused to get out of the car or van to go to a place he or she seems to like. Intervention or support that is based on our social interpretations of symptoms may not always be helpful. Returning thenon-compliant person to home, school or program usually results in additional trouble. We need a clearer understanding of people’s experiences if we are to provide appropriate care and support that boosts self-confidence and is the product of collaboration rather than control. Donnellan, Leary & Robledo, (2006) offer many suggestions for accommodations that may help people with autism deal with these situations.

Interpretation Of Symptoms As Meaningless

Our assumptions about a person’s intention or meaning directly influence the way we respond moment to moment, the relationships we form, and the support we give to people. When we label aspects of a person’s behavior as meaningless, we may miss opportunities to extend learning and develop our relationships. Echolalia serves well as an illustration. In the early years of behavioral intervention for people with autism from 1960 to 1980, professionals assessing a child’s communication abilities were to assume that echolalia was the “meaningless repetition of a word or word group just spoken by another person” (Fay, 1969, p. 39), a non-functional, undesirable and “sick” behavior of autism (Lovaas, 1966; Lovaas, Schreibman & Koegel, 1974), and a communication disorder to be extinguished through behavior modification (Lovaas, 1977). In the 1980s, the fine and detailed work of researchers such as Baltaxe & Simmons (1977), Prizant & Duchan (1981) and Prizant & Rydell (1984) began to influence our assumptions about the intentions of autistic speakers and the possible communicative functions of both immediate and delayed echolalia. Many people now understand that echolalia is neither always meaningless nor always meaningful; rather it serves a variety of pragmatic functions on a sociolinguistic continuum. Although sometimes not intentional, echolalia may be used intentionally by many who lack other strategies for communicating to maintain relationships, improve their comprehension of spoken language and to express meaning (Kanner, 1946). Acknowledgement of a person’s efforts to accommodate, improvise and create meaning is a cause for celebration and an opportunity to improve communication and boost self esteem.

Interpretation Of Symptoms As “Not Interested” In Relating Or Communicating

People with autism often communicate, behave and participate in unique, very personal, perhaps idiosyncratic ways that require their partners to be more flexible and open than usual in interpreting meaning and intention. Differences in the way people are able to use their bodies and focus their attention leads many to assume that a person does not care to participate or communicate and does not desire relationship. These assumptions affect our expectations, the way we speak with them and the educational and social opportunities we offer to them. Under the “criterion of the least dangerous assumption” (Donnellan, 1984), it is safest to assume that relationships are critical to human beings for learning and development even if, and perhaps especially if, they have difficulties in these areas (Robledo, 2006; Fogel, 1993).

The Critical Importance Of Relationship In Learning And Development

The past 40 years have witnessed the growth of a body of knowledge, approaches and intervention methodologies designed to address the needs of individuals with autism. Often the kinds of intervention strategies at our disposal are based on ideas and theories that conflict with each other. The content of interventions may be highly prescriptive or more loosely defined. Research can be cited in support of the efficacy of almost any kind of approach for at least some individuals in some situations. We struggle as well to explain and describe that quality within any intervention that works and leads to growth and development between the partners involved. Perhaps the essential factor underlying any successful intervention has been overlooked or at least not credited in the research. We propose, along with a growing number of investigators, that the undefined element is the presence and nature of the relationship between persons in any interaction.

The role of relationship in learning is the centerpiece of sociocultural psychology. Sociocultural psychology views human development as essentially embedded and significantly dependent on interactions with more able and skilled members of the existing cultural and social context. While most of us believe that learning is enhanced by a facilitative relationship with a more mature thinker, western psychology has only recently directed attention to the nature of that relationship. Lev Vygotsky (1896 1934) was a Russian psychologist whose work described and defined the role of relationship in human development. His work emphasized the notion that cognitive and specific skill development is the result of internalizinginteractions with others within a relationship (Bodrova & Leong, 1996). Ylvisker and Feeney (1998) have translated Vygotskian theory into a support model that focuses on apprenticeship and collaboration between the person and another with more expertise in the areas where support is needed. The “tutor” provides collaborative mediation that is fine-tuned to the learner’s changing needs for support to enable participation in meaningful, project-oriented work. “The roots of cognitive, executive and communication functions, as well as behavioral self-regulation, are everyday social interaction routines” (Ylvisker & Feeney,1998, pp. 15-16). In the sociocultural models of development, relationship with others serves as the springboard for learning. Learning happens within a social context, within a dialogue with others. We acquire cognitive skills, knowledge and behavior regulation, not simply through memorization of facts or actions, but through our interactions in the social world where this knowledge has function and meaning.

Inconsistency In Abilities

People report sensory and movement inconsistencies, such as fluctuations in speed and clarity of sensory perception; unreliable ability to maintain or release body postures; delays in speed and accuracy of movement and speech; unpredictable changes in muscle tone; unwanted vocal, verbal and physical tics and extraneous, non-functional movement (e.g. Mirenda & Donnellan, 1986; Williams, 1996a; Strandt-Conroy, 1999; Harp, 2008). A sensory and movement difference is characterized by this inconsistency, causing stress for the most common of movements (Baggs, 2007). A person struggling with these performance characteristics may not be able to predict, plan for, or sustain effective participation. For example, a person with a 14 second delay in her ability to respond to others (Mirenda & Donnellan, 1986) is likely to be misinterpreted and misunderstood and unlikely to be offered time to respond. This is illustrated by Harp (2008) on her blog, Asperger’s Square 8 (used with permission).

 

Supporting Self Esteem

Humans carry inside themselves an image that includes reasons for, and the possibility of, change. We need to know that we are OK just as we are, even though there are things we may want to learn, or to do, better.

A current trend in early intervention for young children with autism is to provide guidance in massive quantities (e.g. 40 hours a week of one-to on-instruction). This guidance is naturally accompanied by frequent corrections and redirection. Given the intensity of this intervention, special care is needed to promote children’s self-esteem at any age.

Equally important is the need for positive, optimistic, respectful support for adults with autism. The paucity of quality programs, diminished opportunity for interesting lives, effects of medication and chemical restraint are just a few of the additional burdens on these individuals and their families. Issues of collaboration, personalization and comfort are also essential for children and particularly pressing for the adult population with the autism label. McGinnity & Negri (1995) offer helpful suggestions on how students and staff can learn to be more sensitive to the differences in those on the autism spectrum.

Collaboration, Personalization And Comfort

The growth of the autism industry over the past two decades has spawned no end of books, interventions, programs and products. Yet, the diagnosis of autism is not prescriptive of the type of supports needed for assisting any particular person to participate, relate and communicate. Supports for people with autism should be personalized, reflect the respect and dignity due to all people, and address the challenges with which people struggle to organize and regulate themselves in response to the sensory environment and their movement differences. Appropriate supports require a deep and local knowledge of the individual. This can be gained from those who know and appreciate them but often such information is not available. Then it is even more essential to spend significant time with the person in a variety of activities and settings and with people who respect and admire him or her. We need to learn to listen with all of our senses and compassion (Savarese, 2007; Lovett, 1996) and to “presume competence” in all interactions. We do not put people in jeopardy by overestimating their experience. We do look for competence instead of deficits and talk to people in age appropriate ways. And we model such interactions for all those who are, or may become, willing to know them better.

Moreover, we need to remember that in our journey of change, we all need allies who will collaborate with us to find the most comfortable and effective ways for us to learn to participate in our families, with our friends and as contributing members of our communities (Schwarz, 2004; Robledo & Donnellan, 2008; Hill & Leary, in press). This is particularly critical for those persons who are challenged by the movement differences that often make such comfort temporary, personhood elusive, and collaboration a mystery. There is much to be learned from self-advocates with autism as well as from individuals who share some of the symptoms of movement differences such as Tourette syndrome, Parkinson’s disorder and their supporters (e.g. Williams, 1992; McGoon, 1994). For example, individuals with Tourette syndrome have taught us that naming a behavior might make it much more difficult for a person to inhibit that behavior. It is roughly analogous to telling a stutterer not to stutter. Anyone familiar with classrooms and programs in autism will recognize the value of that cautionary comment.

Conclusion

When I was growing up, speaking was so frustrating. I could see the words in my brain but when I realized that making my mouth move would get those letters to come alive, they died as soon as they were born. What made me feel angry was to know that I knew exactly what I was to say and my brain was retreating in defeat …

(Burke, 2005, pp. 250-251).

Jamie Burke is a college student who now is able to speak the words he types with two fingers on his Augmentative and Alternative Communication (AAC) device. He requires no physical support for his typing yet continues to need the presence of a trusted support person as an “emotional platform” (Maurer, 1993) to execute his typing. It may be that the relationship allows him to be in a more optimal “space” to regulate the sensory and movement aspects of typing. We have proposed that many other individuals with the autism label may be challenged by sensory and movement differences in starting, stopping, executing, combining and/or switching actions, thoughts, emotions and speech. These symptoms have been described in the literature for many years but generally not integrated into our descriptions or understanding of autistic behaviors.

Sensory and movement differences often escape the notice of those of us who do not typically experience them but have been well described by autistic self-advocates and persons interested in individuals with autism and other disability labels. Ignoring these differences (or redefining them as autistic behaviors to be controlled) has made life unnecessarily more difficult for individuals with autism and those who care about and for them. Many of the assumptive errors we have made are based on our own social history. In the absence of clarity about the nature of these movement differences, we will continue to be forced into the default position of seeing all unfamiliar behaviors as intentional, deliberate evidence of intellectual impairments and even pleasurable. We have not proposed another list of deficits but a greater understanding of the complexity of what we call autistic behaviors and the necessity to rethink our assumptions about them. The task is not going to be easy. Such sensory and movement differences are manifest in autism and many other disorders in strikingly unique, personalized and dynamic ways that test present research (and teaching) strategies that rely heavily on a positivist-reductionist philosophy. Yet, some of the brightest scientific lights of the 20th century reminded us that the best way to approach objectivity in science is to view the phenomenon from as many perspectives as possible (Luria, 1939; Edelman, 1992; Shawlow, 1996, Personal Communication). As Einstein shared, “Not everything that counts can be counted and not everything that’s counted, counts” (Cunningham & Scott, 2004).

There is a long, continual path of misunderstanding to autism. People have been thought of, and referred to, as “non-persons,” “behavior problems” and sub-normal in every imaginable way. If they cannot speak, we assume they have little to say and offer only the most limited of communication options. Irrespective of the precision and intensity of our interventions, more often than not they experience isolation, segregation, homogeneous grouping, loneliness, pain and boredom as part of their customary care across the life span. Often their sensory and movement differences contribute to such outcomes as these leave the rest of us unaware of the true nature of their challenges.

Any view of autism at this time needs to reflect the experience of self-advocates with autism and others who describe sensory and movement differences, as well as the latest in the neuroscience and child development literature. We need a research agenda that focuses on understanding and supporting autistic people and others in more respectful, personalized and successful ways. It is the least dangerous assumption (Donnellan, 1984) to see all as full human beings who may have formidable and unfamiliar challenges to overcome and who, of course, desire social interaction, communication and participation.

Too often autistic children are raised to believe they are broken and need to be fixed. Adults with autism too often live lives of isolation and poverty. Understanding people’s experiences may lead to acceptance, accommodation and appropriate support. To continue down the same paths, well worn for 65 years, when all these data impel us to rethink our assumptions and broaden our path is unthinkable.

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Academic Supports for College Students with an Autism Spectrum Disorder: An Overview

Contributed by Marci Wheeler, MSW from Indiana Institute on Disability and Community

Each year more information about the college experiences of those on the autism spectrum is written by their parents, professionals and these students on the autism spectrum. “Temple Grandin” a biopic movie of Temple’s life premiered last year on HBO, and won several Emmy and other awards. Included in the film, of this very accomplished woman with autism, is a significant look at Temple’s experience at college. This film also reminds us that fellow college students need information to better understand their peers on the autism spectrum and how to include and support them. There is much more to college life than academics. Intellectually these students are often very bright but many may face a variety of “hidden challenges” that can undermine their ability to navigate a typical college campus and perform well in class. This article will discuss some of the challenges and possible academic supports for students on the autism spectrum.

There is a wide range of functioning and abilities seen across individuals diagnosed with an autism spectrum disorder. Generalities are hard to make except to say that communication and social skills deficits are present. There are also neurological differences that affect everyone on the autism spectrum. However, each person is affected in different ways. The sensory perceptions, motor skills, learning styles and coping strategies are often affected and may cause “hidden” challenges that are not understood by those supporting these students. As a result of these challenges the observable behaviors of students on the autism spectrum may make them appear inattentive, bored, rude, defiant or possibly even on drugs. Ritualistic or repetitive behaviors, an attachment to incongruous objects and additional unusual communication and social skills (especially under stress) can make some of these students seem odd and bring unwanted attention to them.

Some students on the autism spectrum may experience sensory overload and/or be distressed by the social and communication demands of a class. They may have learned “acceptable” strategies to cope and have the ability to stay focused on their intellectual pursuits such that they can navigate through their classes (at least the classes in their chosen major) and pass as “normal”. Some students expend a lot of energy, at all costs, to blend in and not be detected. Unfortunately, for some, this may result in them leaving the university without finishing a degree as the stress is too great. Also, on any college campus be assured that there are students who have not been formally diagnosed or students that are not diagnosed until their college years.

Professors and other instructors need to be aware of possible supports that a student on the autism spectrum might find necessary to participate in class and complete classwork. The following six sections briefly state a common concern for most students and list some possible issues and accommodations. Each student on the autism spectrum has unique needs and should work closely with instructors and other college staff to design an individualized plan of proactive support and response to challenges if they arise.

Communication Skills

By definition (following diagnostic criteria) all students with an autism spectrum disorder have some problems which may interfere with receptive or expressive communication. Some of these differences are very subtle and can lead to misunderstandings that are misinterpreted as volitional acts on the part of the student. Students with an autism spectrum disorder may be very articulate and have a large vocabulary which may “hide” their communication challenges. Those supporting students on the autism spectrum should become aware of each individual students weaknesses in this area. Some of these are listed below along with possible accommodations.

Receptive difficulties often experienced by students on the autism spectrum include processing verbal exchanges more slowly, misunderstanding sarcasm, idioms and jokes, very literal interpretation of words, and misunderstanding gestures and body language.

The expressive difficulties of individuals on the autism spectrum may include problems initiating communication; even for those students who at first glance may seem very articulate and even very talkative. Those on the autism spectrum may have trouble staying on topic, turn taking and following conversational “protocol”. Some may be slower to organize thoughts and speak, and/or their voice tone and volume may be unusual. Idiosyncratic use of words and phrases may be present.

Accommodations for a college student with an autism spectrum disorder might include providing the instructor’s lecture notes or a note taker to help key in on important information, providing study guides for tests, allowing a longer verbal response time from the student and allowing for important exchanges of information to be done in written form. It would also help for instructors to be clear, concise, concrete and logical when communicating as well as asking for clarification; don’t make assumptions about what students truly understand.

Social Skills

Social skills might not seem important in a class setting, but, in fact social difficulties can and do impact the classwork of many students on the autism spectrum. Many college courses require class participation and group work as part of earning a grade. Just going to class with peers necessitates the use of social skills. Some social difficulties and possible accommodations are discussed below.

The social challenges for a student on the autism spectrum include problems understanding others perspectives, sharing space and making eye contact. Many high functioning individuals with an autism spectrum disorder have extreme social anxiety and have difficulty negotiating with others, and interacting and working in pairs or groups. These students likely will not understand the “unwritten” classroom etiquette and will often misinterpret facial expressions and other non-verbal cues. Possible accommodations for students on the autism spectrum include allowing for short breaks to leave class and/or allowing the student to have a “social buffering” object which might include a computer, book or other object that initially might seem distracting or “out of place”. Honoring the student’s chosen level of eye contact w/o judgment can be helpful. If there is group work assigned for class the instructor might assist in the formation and monitoring of pairs or groups of students to assure the proper inclusion of the student with an autism spectrum diagnosis. Also providing written rules for asking questions and other classroom logistics (as needed) may support students with an autism spectrum disorder diagnosis.

Sensory Differences

Though currently sensory issues are not part of the diagnostic criteria for an autism spectrum disorder, sensory processing issues seem to affect the majority of these individuals. Some on the autism spectrum have an extreme over sensitivity or under sensitivity to input, from the environment to the five senses: sight, hearing, touch, smell and taste. A significant number of persons experience synesthesia. Synesthesia may affect any of the senses. Synesthesia is phenomena in which the actual information of one sense is accompanied by a perception in another sense. Listed below are some common sensory differences and accommodations that may be important in a class setting.

Common visual and auditory sensory difficulties experienced by students on the autism spectrum include florescent lights that may appear to flicker and certain “bright” colors that may produce “overload”. Someone may see better from a “different” angle or may hear low level frequency sounds emitted by florescent lights. Also certain “typical” classroom sounds may be perceived as “painful” such as the movement and use of desks, people and other objects in the room. Often a person on the autism spectrum may not filter out extraneous sounds and/or may hear sounds in the next room.

Sensory issues related to the sense of touch and/or the sense of smell may occur. For example, certain textures may be “painful” and/or individuals may crave certain textures. Students on the autism spectrum may be disturbed by people accidentally bumping them or the feel of a particular desk or chair. They may wear “unusual” clothing, footwear or accessories because of sensory differences. Also students may be sensitive to certain odors and certain smells may cause “overload”. Some who are very sensitive may be affected by scents from certain perfumes, deodorants and soaps.

Possible accommodations to support a student with sensory differences include allowing hats, sunglasses and tinted lens glasses to be worn and allowing ear plugs or ear phones. Also allowing the student to choose their seat and helping to assure it is always available may be important. If requested by the student, an alternative writing instrument for tests and assignments and/or a computer for in class work, tests and assignments might also be an appropriate accommodation.

A student with an autism spectrum diagnosis may find that a small sensory item brings comfort in class. It is likely, if a student uses a sensory item, that it is inconspicuous but this may not always be the case. Be aware that a student may make a last minute request for a seating change and/or to leave abruptly due to sensory overload. Help devise an acceptable plan to address urgent sensory issues for the student.

Motor Skills

Both fine and gross motor skills may be affected in individuals with an autism spectrum disorder. In addition motor planning and poor awareness of body in space are two areas that often affect motor skills for these individuals. Often fine and gross motor skills as well as motor planning skills are very uneven. Listed below are possible problems in these areas along with possible accommodations.

Fine motor challenges for students on the autism spectrum might affect writing, drawing, turning pages, using utensils, playing an instrument, using locks and keys, and manipulating small objects. Gross motor challenges may affect walking (may have “odd” gait), running, sitting and balancing. Motor planning and the awareness of the placement of their body in space can affect the ways in which an individual moves their body and is able to navigate themselves to accomplish all motor tasks.

Possible accommodations for students on the autism spectrum with motor skills difficulties include allowing a computer for in class work, tests and assignments, providing a note taker, allowing work assignments done at a slower pace, providing models and step by step instruction, providing extra time to take tests and providing readers and scribes (or technology that reads and takes notes). Further accommodations might need to be considered for students taking physical education courses in which motor skills differences might provide further complications.

Learning Style

Students with an autism spectrum disorder often have a very uneven learning profile. They often excel creatively in a non-conventional way. Students on the autism spectrum tend to have excellent long term and rote memory abilities. Executive functioning deficits cause these students many problems. Many are thought to be right-brained thinkers. Most need to like and trust an instructor before they can perform in a class. Some common learning challenges, strengths and possible accommodations are listed below.

Executive function challenges experienced by students with an autism spectrum diagnosis include general organization and planning skills, problems with impulsivity and problem solving and the ability to monitor themselves in the completion of a goal.

Along with the executive functioning deficits, common learning barriers include poor sequential learning, easily bored with repetition once something is learned, attention problems, literal thinking, nebulous sense of time and as mentioned previously, perspective taking deficits. Other issues that impacts learning for students on the autism spectrum are the fact that they need to understand why something is important, relevant or meaningful to them and they may not realize they are having academic difficulty until it may be too late or too difficult for them to rectify on their own.

The strengths of students on the autism spectrum can sometimes help them compensate for their weaknesses. These students can do quite well academically, especially in their chosen field, and their strengths should be respected and used whenever possible. For example these students may have extremely good visual and visual-spatial skills. They often learn best from whole to part (complex to simple) and they can be very creative; out of the box thinkers. These students can also show an amazing knowledge on topics of interest which is most often their major field of study at the university.

Possible accommodations for students on the autism spectrum to support their learning style include providing review sheets, work checklists, and “sub” deadlines and/or intermittent “check-ins.” If possible provide hands on learning, models, demonstrations and other visuals. If possible, pair with peer mentors who might help with feedback and provide “proof-read” opportunities and ongoing structure to keeping on target with work assignments.

Instructors can help support students on the autism spectrum by providing reinforcement at every opportunity. Other accommodations that might be helpful for some students are allowing advanced negotiation of deadlines, extra time for tests, and/or a separate “quiet” place for tests.

Instructors and other college staff can also encourage the use of calendars (computer, traditional, phone w/alarms). Most likely the student has experience with using an organizational tool or tools, of choice, before coming to college. However, sometimes in a new environment the tools and skills used and learned to compensate for executive function deficits do not transfer easily to a new setting. Because the setting has changed, the student may need time “extra” transition time to begin the use of these tools and to maintain routines in the new environment.

Coping Skills

Individuals with an autism spectrum disorder frequently describe themselves as dealing with a lot of anxiety and stress. Sensory sensitivities, social and communication expectations as well as transitions and unexpected changes often trigger this anxiety and stress. It is during these times when these students may display behavior that can seem bewildering, rude or disruptive. Most often when a student displays these behaviors they are doing what they know to do to cope. In fact, these sometimes “confusing” behaviors are often experienced as calming. Included below are examples of coping behaviors in which students with an autism spectrum disorder may engage and possible accommodations.

When under stress, students on the autism spectrum may engage in stress relieving activities which look odd and may even make others feel uncomfortable. These activities may include body rocking, pacing, waving or flapping hands or fingers repetitively, chewing on their clothing or body, “lecturing” on a topic of interest or they may display the “opposite” emotion for the situation. They also may abruptly leave the situation with no explanation before or afterwards.

A possible accommodation in helping the student cope, in the moment, might be to discretely ask the student if something is overwhelming and/or ask if the student needs help or wants to leave. Do not discourage or interrupt behavior unless truly disruptive and understand that student does not intend to be disrespectful. Allow sensory items and/or other “comfort” objects. A student, who is having a hard time coping, might not realize when s/he is being disruptive and needs to leave. The instructor and student can agree on a cue that the instructor can give to signal to the student that it is okay/time to leave. They can also agree on a signal, to inform the instructor when the student is overwhelmed or confused.

Ideally, preparing young adults with an autism spectrum disorder for the demands of college has started years earlier. With a proper diagnosis, individualized early intervention and careful transition planning, college students with an autism spectrum diagnosis, will be better prepared to advocate for themselves. At the same time college professors and other staff at post-secondary colleges and universities need to be prepared for students on the spectrum who are seeking to be a part of these institutions in greater and greater numbers. These students must be given reasonable accommodations to provide an equal opportunity for pursuing a college education. Many great minds and opportunities for society could be lost if individuals on the autism spectrum are not supported in their post-secondary academic pursuits.

Academic Supports for College Students with An Autism Spectrum Disorder:  Quick Overview

Note:

The information in this article is based on Marci Wheeler’s work at the Indiana Resource Center for Autism, Indiana Institute on Disability and Community at Indiana University-Bloomington; including her role as Advisor for the Students on the Spectrum Club at Indiana University – Bloomington.

If you need more information about supporting students on the autism spectrum in a university/college setting, please contact your local autism organization or campus office for students with disabilities to find out who can assist. Indiana residents can contact Marci Wheeler at mwheeler@indiana.edu or phone (812) 855-6508.

With Special Thanks to the members of the Students on the Spectrum Club at Indiana University – Bloomington for sharing their insights as they navigate the college setting.

Resources

Attwood, T. (2007). The complete guide to Asperger’s Syndrome. Philadelphia: Jessica Kingsley Publishers.
Harpur, J., Lawler, M. & Fitzgerald, M. (2004). Succeeding in college with Asperger Syndrome: A studentguide. Philadelphia: Jessica Kingsley Publishers.

Palmer, A. (2006). Realizing the college dream with autism or Asperger Syndrome: A parent’s guide to student success. Philadelphia: Jessica Kingsley Publishers.

Prince-Hughes, D. (2002). Aquamarine Blue 5: Personal Stories of College Students with Autism. Athens, OH: Ohio University Press.

Wolf, L.E., Brown, J.T,. Bork, G. R. K. (2009). Students with Asperger Syndrome: A guide for College personnel. Shawnee Mission, KS: Autism Asperger Publishing Company.

 

Autism Life Skills: 10 Essential Abilities for Children with ASD

By Chantal Sicile-Kira      Editorial Note: This article originally appeared in Advocate Magazine in 2008

 

Teacher: “What are your greatest dreams about your future?”

Jeremy: “I want to have my own house with roommates, good friends,

a fun job and be learning.”

 

Teacher: “What are your greatest fears about your future?”

Jeremy: “That I will not have enough money.”

 

Teacher: “What barriers might get in the way of accomplishing your goals?”

Jeremy: “You know I need good helpers. I need people that respect my intelligence.”

-Interview with Jeremy Sicile-Kira

Transition Year 2007-08

With two teenagers who will soon be out of school, there has been much reflection and soul searching taking place in my home lately as to whether or not we’ve made the right decisions as parents over the years. Rebecca, our  neurotypical teenager, has just started driving and is becoming more independent. In hindsight, there is not much I would do differently if we had to start raising her all over again.

My thoughts concerning Jeremy, our 19-year-old son with autism, are somewhat  different. Those who have seen him on the MTV True Life segment “I Have Autism” will remember his can-do spirit and his determination to connect with other people, but also how challenged he is by his autism. Obviously, there are many more options available to help people like Jeremy today than when he was a baby. Over the last few years, as we considered how to best prepare Jeremy for the adult life he envisioned, I wondered what we could have or should have done differently when he was younger.

This led me to think: What would today’s adults on the autism spectrum point to as the most  important factors in their lives while they were growing up? What has made the most impact on their lives as adults in terms of how they were treated and what they were taught as children? What advice did they have to offer on how we could help the children of today? I decided to find out. I interviewed a wide-range of people—some considered by neurotypical standards as “less able,” “more able” and in-between; some who had been diagnosed as children; and some diagnosed as adults.

The result of these conversations and e-mails became the basis of my latest book, Autism Life Skills: From Communication and Safety to Self-Esteem and More—10 Essential Abilities Your Child Needs and Deserves to Learn (Penguin, October 2008). Although some areas discussed seemed obvious on the surface, many conversations gave me the “why” as to the challenges they faced, which led to discussions about what was and was not helpful to them. No matter the differences in their perceived ability levels, the following 10 skill areas were important to all.

Sensory Processing

Making sense of the world is what most adults conveyed to me as the most frustrating area they struggled with as children, and that impacted every aspect of their lives: relationships, communication, self-awareness, safety and so on. Babies and toddlers learn about the world around them through their senses. If these are not working properly and are not in synch, they acquire a distorted view of the world around them and also of themselves.

Most parents and educators are familiar with how auditory and visual processing challenges can impede learning in the classroom. Yet, for many, sensory processing difficulties are a lot more complicated and far reaching. For example, Brian King, a licensed clinical social worker who has Asperger’s, explains that body and spatial awareness are difficult for him because the part of his brain that determines where his body is in space (propioception) does not communicate with his vision. This means that when he walks he has to look at the ground because otherwise he would lose his sense of balance.

Donna Williams, Ph.D., bestselling author and self-described “Artie Autie,” had extreme sensory processing challenges as a child and still has some, but to a lesser degree. Donna talks about feeling a sensation in her stomach area, but not knowing if it means her stomach hurts because she is hungry or if her bladder is full. Other adults mention that they share the same problem, especially when experiencing sensory overload in crowded, noisy areas. Setting their cell phones to ring every two hours to  prompt them to use the restroom helps them to avoid embarrassing situations.

Many adults found it difficult to tolerate social situations. Some adults discussed how meeting a new person could be overwhelming—a different voice, a different smell and a different visual stimulus—meaning that difficulties with social relationships were not due simply to communication, but encompassed the total sensory processing experience. This could explain why a student can learn effectively or communicate with a familiar teacher or paraprofessional, but not a new one.

The most helpful strategy was knowing in advance where they were going, who they were going to see and what was going to happen, so that they could anticipate and prepare themselves for the sensory aspects of their day. Other strategies included changing their diet, wearing special lenses, having a sensory diet (activities done on a regular basis to keep from experiencing sensory overload), undergoing auditory and vision therapy, as well as desensitization techniques.

Communication

The ability to communicate was the second most important area of need cited by adults. All people need a form of communication to express their needs, in order to have them met. If a child does not have an appropriate communication system, he or she will learn to communicate through behavior (screaming or throwing a tantrum in order to express pain or frustration), which may not be appropriate, but can be effective. Sue Rubin, writer and star of the documentary “Autism is a World,” is a non-verbal autistic college student and disability advocate. She often speaks about the impact of communication on behavior. She shares that as she learned to type she was able to explain to others what was causing her behaviors and to get help in those areas. In high school, typing allowed her to write her own social stories and develop her own behavior plans. As her communication skills increased, her inappropriate behaviors decreased.

Those with Asperger’s and others on the more functionally able end of the spectrum may have more subtle communication challenges, but these are just as important for surviving in a neurotypical world. Many tend to have trouble reading body language and understanding implied meanings and metaphors, which can lead to frustration and misunderstanding. Michael Crouch, the college postmaster at the Crown College of the Bible in Tennessee, credits girls with helping him develop good communication skills. Some of his areas of difficulty were speaking too fast or too low, stuttering and poor eye contact. When he was a teenager, five girls at his church encouraged him to join the choir and this experience helped him overcome some of his difficulties. Having a group of non-autistic peers who shared his interests and provided opportunities for modeling and practicing good communication skills helped Michael become the accomplished speaker he is today.

Safety

Many on the spectrum had strong feelings about the issue of safety. Many remember not having a notion of safety when little, and putting themselves in unsafe situations due to sensory processing challenges. These challenges prevented them from feeling when something was too hot or too cold, if an object was very sharp or from “seeing” that it was too far to jump from the top of a jungle gym to the ground below.

Many adults described feeling terrified during their student years, and shared the fervent hope that with all the resources and knowledge we now have today’s students would not suffer as they had.  Practically all recounted instances of being bullied. Some said they had been sexually or physically abused, though some did not even realize it at the time. Others described how their teacher’s behaviors contributed directly or indirectly to being bullied. For example, Michael John Carley, Executive Director of GRASP and author of Asperger’s From the Inside Out, recalls how his teachers made jokes directed at him during class, which encouraged peer disrespect and led to verbal bullying outside the classroom.

A school environment that strictly enforced a no-tolerance bullying policy would have been extremely helpful, according to these adults. Sensitizing other students as to what autism is, teaching the child on the spectrum about abusive behavior, and  providing him/her with a safe place and safe person to go to at school would have helped as well. Teaching them the “hidden curriculum,” so they could have understood what everyone else picked up by osmosis would have given them a greater understanding of the social world and made them less easy prey.

Self-Esteem

Confidence in one’s abilities is a necessary precursor to a happy adult life. It is clear that those who appear self-confident and have good self-esteem tend to have had a few things in common while growing up. The most important factor was parents or caretakers who were accepting of their child, yet expected them to reach their potential and sought out ways to help them. Kamran Nazeer, author of Send in the Idiots: Stories from the Other Side of Autism, explains that having a relationship with an adult who was more neutral and not as emotionally involved as a parent is important as well. Parents naturally display a sense of expectations, while a teacher, mentor or a therapist can be supportive of a child and accepting of his/her behavioral and social challenges. Relationships with non-autistic peers, as well as autistic peers who share the same challenges were also important to developing confidence.

Pursuing Interests

This is an area that many people on the spectrum are passionate about. For many, activities are purpose driven or interest driven, and the notion of doing something just because it feels good, passes the time of day or makes you happy is not an obvious one. Zosia Zaks, author of Life and Love: Positive Strategies for Autistic Adults, told me that, as a child, she had no idea that she was supposed to be “having fun”—that there were activities that people participated in just for fun. It was one of those things about neurotypical living that no one ever explained to her.

As students, some of these adults were discouraged from following their obsessive  (positive translation: passionate) interest. Others were encouraged by parents and teachers who understood the value of using their interest to help them learn or develop a job skill. For example, when he was little, author and advocate Stephen Shore used to take apart and put together his timepieces. Years later, this interest was translated into paid work repairing bicycles at a bike store.

Self-Regulation

Respondents believed this is a necessary skill for taking part in community life. Many children on the spectrum suffer from sensory overload. It can also be difficult for them to understand what they are feeling and how to control their emotional response. Dena Gassner, MSW, who was diagnosed as an adult, believes it is necessary for children to be able to identify their “triggers” and that parents and educators should affirm to the child that whatever he or she is feeling is important. Even if it does not make sense to the adult, whatever the child is feeling is true for him or her. Various methods can be used to help them become more self-aware over time, to recognize when they are approaching sensory or emotional overload and to communicate the need for a break. As they get older, giving them more responsibility for scheduling their own breaks and choosing their own appropriate coping strategy can be very empowering.

Independence

Independence is an important goal, but may take longer than expected. Zosia Zaks told me that parents of children with autism need to realize and accept that they will be parenting for a lot longer than parents of neurotypical children. She has a point, but I never thought I’d still be discussing certain self-care issues when my son was old enough to vote. For many that I interviewed, some skill acquisition came later in life, and many are still improving themselves and their essential skills. This is nice to know because so often, as parents and educators, we hear about the “windows of opportunity” in terms of age and can become discouraged by our own inner cynics and other well-meaning doubters (“If they haven’t learned by now….”).

When discussing self-sufficiency, many stated that the two greatest challenges were executive functioning  (being able to get and stay organized) and sensory processing. Doing chores and establishing routines helped some as children to learn organizational skills and responsibility—two essential foundations for self-sufficiency.

Social Relationships

Relationships are important to all human beings, but are difficult for many on the spectrum. The adults I communicated with make it clear they enjoy having relationships, including those who are mostly non-verbal, such as Sue Rubin and D.J. Savarese (who wrote the last chapter of Reasonable People). However, understanding the concept of different types of relationships and knowing the appropriate behaviors and conversations expected does not come naturally, and can be magnified for those who are non-verbal.

Many adults, such as Dena Gassner and Zosia Zaks, discussed the importance of teaching children interdependence skills—how to ask for help, how to approach a store clerk, how to network as they get older. For them, interdependence did not come as easily as it does for neurotypicals. Yet, asking people for assistance—what aisle the cookies are located in, the name of a plumber when your sink is stopped up, letting people know you are looking for a job or apartment—is how social and community life functions.

Self-Advocacy

Effective self-advocacy entails a certain amount of disclosure. All of the adults I spoke with believed that children should be told about their diagnosis in a positive manner. Michael John Carley, who was diagnosed following the diagnosis of his son, says he always felt different than others. Getting a diagnosis was liberating because then he knew why he felt different. On the topic of disclosure to others, some believe in full disclosure to all, while others choose to disclose only the area of difficulty.

Like many her age, Kassiane Alexandra Sibley, who wrote a chapter of the book Ask and Tell,  was improperly diagnosed before discovering at age 18 that she had an autism spectrum disorder. She had to learn self-advocacy skills the hard way. Like many I spoke with, Kassiane believes that teaching children when they are young to speak up for themselves is the most important gift we can give them.

Earning a Living

This is an issue of major concern for many on the spectrum. Some of the adults I spoke with struggled for years before finding an area in which they could work. The life skills discussed earlier in this article impact tremendously on a person’s ability to find, get and keep a job. Many people on the spectrum continue to be unemployed or underemployed, which means we need to rethink our approach in how we are transitioning our youth from being students to being contributing members of society.

Temple Grandin, who co-authored the book Developing Talents, says that parents should help their children develop their natural talents and that young people need mentors to give them guidance and valuable experience. Authors John Elder Robinson (Look Me in the Eye) and Daniel Tammet (Born on a Blue Day) both credit their Asperger’s for giving them the talents on which they have based their successful businesses. For those whose talents are less obvious, a look at the community they live in and the service needs that exist there can be an option for creating an opportunity to earn money.  My son Jeremy and his teacher created a sandwich-delivery business and a flower business on his high school campus as part of his work experience. Customized employment, including self-employment, is an option that, with careful planning and implementation, can be a solution for some.

In retrospect, there are different choices I could have made  in raising and educating Jeremy these past 19 years. However, after conversations and e-mails with many  different adults on the spectrum, I have concluded that there is one factor I would not have changed, the formula I used for providing a solid foundation for both of my children: Take equal parts love, acceptance and expectation, and mix well.

 

How To Find Your Strengths When You Aren’t Sure What They Are

By Brian R. King LCSW

This is the third of a ten part series I have decided to put together especially for you. I hope these lessons will serve as a road map of sorts on how to be on the Autism Spectrum and have a successful, happy life. So let’s get started . . .

Step 3: Acknowledge Your Strengths & Live Them Every Day

Are you ready to take a break yet? The first two lessons in this series required a lot of in-depth thinking, they really asked you to take a look at yourself and the way you think. So let’s take a break from that approach and be a little more straightforward for this lesson. This lesson is all about finding your strengths.

Now for those of us on the autism spectrum, we’re so used to being criticized and so used to having difficulty that it’s much easier to think that we have more weaknesses than we ever will have strengths. It doesn’t help that those who are looking to support us also have a tendency to emphasize our challenges instead of our strengths. They do this by emphasizing that we work diligently to overcome our weaknesses instead of living from our strengths. Now before you scream, “I DON’T DO THAT” at your computer screen, please bare with me and I will explain.

The obvious problem with emphasis on reducing or eliminating weaknesses is that you only get to develop the things that you give your time and attention to developing. So how do you learn to discover and develop your strengths with so little encouragement to do so?

What Makes Me Confident?

It is in living from our strengths that we have the greatest likelihood of experiencing a feeling of competence and success more often. It’s the experience of competence that is at the heart of our feeling of self-worth.

So by giving so much attention to our weaknesses you’re reinforcing the experience of incompetence and lack of success over and over each and every day of our lives.

We often talk about the need for balance in life, and this is critical in helping someone on the spectrum develop their self-worth while remediating areas of challenge. There must be equal if not greater opportunity for spectrumites to experience their strengths and the value of those strengths. Our strengths serve the purpose of solving the problems of our own lives as well as helping solve specific problems in the lives of others.

What Makes Something A Strength?

Words matter, so let’s be clear what is meant when I talk about a weakness, challenge, or strength. I think of a weakness as something I’m simply not good at or am unable to do. My penmanship sucks and the physical act of writing is painful to do, so how much time and effort do I put into improving it before I fire up my Dragon Dictate software (which I used to write this article by the way)? Does it make sense to work on the writing or use my gift of speaking?

A challenge can be thought of as a problem that is difficult to solve but is within your ability to solve once you determine the strategy for doing so. A strength is knowledge or skill that you use to solve a problem either for yourself or another person.

In fact, when you get down to it the simplest measure of how independent someone is lies in their ability to solve the everyday problems of their life. The way you measure someone’s contribution to society as a whole, can be measured by their ability to solve problems for others. For example, when a person is hired to do a job they are hired to solve a specific problem for their employer. I hire an accountant every year to do my taxes because my math skills are mediocre at best. Therefore, I enlist the strengths of an accountant to solve that problem for me.

Can You Read This?

If you are presently saying to yourself, “But I don’t seem to be good at anything. I don’t know what my strengths are,” then let me make one thing very clear to you. If you are able to read this then you are literate and that is a strength. One of the reasons we miss the strengths that are so abundant and right before our eyes, is that once we learn how to solve a problem such as tying our shoes, looking both ways before crossing the street, reading, or something more complicated like preparing a meal, it can become routine.

My suggestion to you, starting today, is to bring your routine strengths back into your awareness. Ask yourself, “What problems did I solve today? If you’re having a difficult time determining what problems existed today just make a list of everything you did. If you picked out something to wear then you solved the problem of, “What do I wear today?” In fact, every time you ask a question you are stating a problem and when you answer that question you are offering a solution.

The Strength In The Details?

When it comes to solving problems for others, as always those on the autism spectrum are constantly reminded of the problems they cause others instead of the solutions they provide. Which is why I make an all-out effort with my sons to emphasize how their actions solve problems in my life. When they help around the house I thank them and I thank them specifically. I don’t simply say thank you or thanks for helping. I say, “Thank you so much for helping me put the dishes in the dishwasher so quickly. That saved me so much time that now I’ll be able to play cards with you.”

I help them discover their strengths by pointing out the specific problems they solved and the specific things they did to help me solve it. The specific skill they used is their strength. Whether it be an ability to organize (not my strength by the way), an ability to stick with the project until it’s done, a tremendous eye for detail or any other specific ability. Letting them know that they had the knowledge or ability needed to solve your problem is HUGE.  In doing so you emphasize how they are specifically equipt to solve a problem for another person and expressing gratitude for it.

Did I Miss Something?

How many of your day to day strengths are you becoming more aware of now? Are their strengths that you don’t give yourself credit for? The last question to ask yourself is, “How many of the questions you answered today, and the other problems you solved, were done so to solve a problem for another person?”

It is important to be aware of the solutions we provide and the contributions we make not only to the quality of our own lives but to the quality of the life of others. It is in making our contribution to society that we ultimately feel our self-worth. When we feel that our presence in the world each day solves more problems than it causes, then we feel more worthwhile, then we feel like we are important to this world. To feel   the opposite is to feel worthless, to feel like a burden. That isn’t a feeling anyone deserves to have, so please be very cognizant of whether or not you are encouraging someone in your life to emphasize their challenges and the problems they cause over their strengths and the problems they solve.

Just Do It Already

I am so grateful that over the years I have developed the ability to express myself in written and spoken language. Something I am very aware that differentiates me from many of my fellow spectrumites including one of my own sons. I utilize this strength to the utmost and will continue to explore new ways to use it to its highest degree. Today alone I received two inquiries to speak to different groups on working with those on the Autism Spectrum. Not a coincidence when you live from your strengths.

My many challenges include poor memory; poor organization, poor math skills and I continue to have difficulty in social situations. Seems like a longer list, but because I focus so much on developing the one strength that solves problems for myself and others here we are. I am able to articulate my experiences in a way to help other people gain insight into theirs. By choosing to do that instead of beating myself up over the other things I’m not good at, my life and the lives of those who enjoy what I write are a little better.

There is so much I could say on this subject, but I hope what I have shared gives you enough to seriously reconsider how you view yourself in terms of what you’re good at instead of what you aren’t. Hopefully you realize you have far more to offer yourself and even more to offer this world than you’d ever considered.

We’re all in this together.

Contact:

Phone Number: 630‐778‐3447

Fax: 630‐6893‐9004

Email: Brian@SpectrumMentor.com

Website: http://SpectrumMentor.com

 

Making (and Keeping) Friends: A Model for Social Skills Instruction

Contributed by: Dr. Scott Bellini, Associate Director from Indiana Institute on Disability and Community

“I am not asking for my child to be the life of the party, or a social butterfly. I just want her to be happy and have some friends of her own. She is a wonderful kid, and I hope someday others can see that.”

Social Skill Deficits in Autism Spectrum Disorders

Indeed, many parents of children with autism spectrum disorders (ASD) echo this sentiment concerning their child’s social functioning. They know that their child has many wonderful qualities to offer others, but the nature of their disability, or more precisely, their poor social skills, often preclude them from establishing meaningful social relationships. This frustration is amplified when parents know that their children want desperately to have friends, but fail miserably when trying to make friends. Often, their failure is a direct result of ineffectual programs and inadequate resources typically made available for social skills instruction. For most children, basic social skills (e.g., turn taking, initiating conversation) are acquired quickly and easily. For children with ASD, the process is much more difficult. Whereas, many children learn these basic skills simply by exposure to social situations, children with ASD often need to be taught skills explicitly, and as early as possible. The present article addresses social skill deficits in young children with ASD by providing a systematic five-step model for social skills instruction, with particular emphasis placed on an emerging intervention strategy, video self-modeling (VSM).

Lack of “Know-How” Versus Lack of Social Interest

Impairment in social functioning is a central feature of ASD. Typical social skill deficits include: initiating interactions, responding to the initiations of others, maintaining eye contact, sharing enjoyment, reading the non-verbal cues of others, and taking another person’s perspective. The cause of these skill deficits varies, ranging from inherent neurological impairment to lack of opportunity to acquire skills (e.g., social withdrawal). Most important, these social skill deficits make it difficult for the individual to develop, and keep meaningful and fulfilling personal relationships. Although social skill deficits are a central feature of ASD, few young children receive adequate social skills programming (Hume, Bellini, & Pratt, 2005). This is a troubling reality, especially considering that the presence of social impairment may lead to the development of more detrimental outcomes, such as poor academic achievement, social failure and peer rejection, anxiety, depression, and other negative outcomes (Bellini, 2006; Tantam, 2000; Welsh, Park, Widaman, & O’Neil, 2001). And the lack of social skills programming is particularly troubling given that fact that many social skill difficulties can be ameliorated via effective social skills instruction.

The long held notion that children with autism spectrum disorders lack an interest in social interactions is often inaccurate. Many children with ASD do indeed desire social involvement, however, these children typically lack the necessary skills to interact effectively. One young man I worked with illustrates this point quite well. Prior to my visit, the school staff informed me of his inappropriate behaviors and his apparent “lack of interest” in interacting with other children. After spending the morning in a self-contained classroom, Zach was given the opportunity to eat lunch with the general school population (a time and place that produced many of the problem behaviors). As he was eating lunch, a group of children to his right began a discussion about frogs. As soon as the conversation began, he immediately took notice. So too did I. As he was listening to the other children, he began to remove his shoes, followed by his socks. I remember thinking, “Oh boy, here we go!” As soon as the second sock fell to the ground, Zach flopped his feet on the table, looked up at the group of children and proclaimed, “Look, webbed feet!” The other children (including myself) stared in amazement. In this case, Zach was demonstrating a desire to enter and be a part of a social situation, but he was obviously lacking the necessary skills to do so in an appropriate and effective manner.

This lack of “know-how” could also lead to feelings of social anxiety in some children. Many parents and teachers report that social situations typically evoke a great deal of anxiety from their children. Children with ASD often describe an anxiety that resembles what many of us feel when we are forced to speak in public (increased heart rate, sweaty palms, noticeable shaking, difficulties concentrating, etc.). Not only is the speaking stressful, but just the thought of it is enough to produce stomach-gnawing butterflies. Imagine living a life where every social interaction you experience was as anxiety provoking as having to make a speech in front of a large group! The typical coping mechanism for most of us is to reduce the stress and anxiety by avoiding the stressful situation. For children with ASD, it often results in the avoidance of social situations, and subsequently, the development of social skill deficits. When a child continually avoids social encounters, she denies herself the opportunity to acquire social interaction skills. In some children, these social skill deficits lead to negative peer interactions, peer rejection, isolation, anxiety, depression, substance abuse, and even suicidal ideation. For others, it creates a pattern of absorption in solitary activities and hobbies; a pattern that is often difficult to change.

A Five Step Model

  1. Assess Social Functioning
  2. Distinguish Between Skill Acquisition and Performance Deficits
  3. Select Intervention Strategies
  4. Implement Intervention
  5. Evaluate and Monitor Progress

The following section will summarize my five-step model of social skills instruction (Bellini, 2006). Before implementing social skills instruction, it is important to begin with a thorough assessment of the individual’s current level of social skills functioning. Once the assessment is complete, the next step is to discern between skill acquisition deficits and performance deficits. Based on this information, the selection of intervention strategies takes place. Once intervention strategies are implemented, it is then imperative to evaluate and modify the intervention as needed. Although I use the term “Steps,” it is important to note that the model is not perfectly linear. That is, in real-life applications social skills instruction will not follow a lock-step approach from step one to step five. For instance, it is not uncommon for me to identify additional social skill deficits (step one) while I am in the middle of the implementation process (step four). In addition, I am continually assessing and modifying the intervention as additional information and data are accumulated.

Assess Social Functioning

The first step in any social skill training program should consist of conducting a thorough evaluation of the child’s current level of social functioning. The purpose of the assessment is to answer one very basic, yet complicated, question: What is precluding the child from establishing and maintaining social relationships? For most children, the answer takes the form of specific social skill deficits. For others, the answer takes the form of cruel and rejecting peers. And for yet other children, the answer is both.

The evaluation should detail both the strengths and weakness of the individual related to social functioning. The assessment should involve a combination of observation (both naturalistic and structured), interview (e.g., parents, teachers, playground supervisors, the child), and standardized measures (e.g., behavioral checklists, social skills measures). I have developed the Autism Social Skills Profile (ASSP) to assist in the identification of typical social skill deficits in children with ASD, and to measure the progress the child is making in the program. Kathleen Quill (2000) also provides an excellent social skills checklist for parents and professionals in her book, Do-Watch-Listen-Say. It is important for the child’s team to ascertain current level of functioning and effectively intervene at the child’s area of need. For instance, if the evaluation reveals that the child is unable to maintain simple one-on-one interactions with others, then the intervention should begin at this level and not at a more advanced group interaction level. Or, if the evaluation revels that the child does not know how to play symbolically or even functionally with play items, then the intervention will probably begin by teaching play skills prior to teaching specific interaction skills. After a thorough assessment of social functioning is complete, the team should then determine whether the skill deficits identified are the result of skill acquisition deficits or performance deficits.

[Author’s Note: A detailed description of social skills assessment is beyond the scope of this article. More information on this topic, including a copy of the ASSP, can be found in the author’s book, Building Social Relationships]

Distinguish Between Skill Acquisition and Performance Deficits

After a thorough assessment of the child’s social functioning and after identifying the skills that we will teach, it is imperative to determine whether the skill deficits are the result of skill acquisition deficits or performance deficits (Elliott & Gresham, 1991). Simply put, the success of your social skills program hinges on your ability to distinguish between skill acquisition deficits and performance deficits!

A skill acquisition deficit refers to the absence of a particular skill or behavior. For example, a young child with ASD may not know how to effectively join-in activities with peers; therefore, he/she will often fail to participate. If we want this child to join-in activities with peers, we need to teach her the necessary skills to do so.

A performance deficit refers to a skill or behavior that is present, but not demonstrated or performed. To use the same example, a child may have the skill (or ability) to join-in an activity, but for some reason, fails to do so. In this case, if we want the child to participate we would not need to teach the child to do so (since she already has the skill). Instead, we would need to address the factor that is impeding performance of the skill, such as lack of motivation, anxiety, or sensory sensitivities.

A good rule of thumb in discerning between a skill acquisition deficit and a performance deficit is to ask the question, “Can the child perform the task with multiple persons and across multiple settings?” For instance, if the child only initiates interactions with mom at home and not with his peers at school, then you should address the initiation difficulty as a skill acquisition deficit. I hear the statement a lot from school personnel, “The child interacts fine with me, so it must be a performance deficit, right?” Not quite. In my experience, children with ASD tend to interact better and more easily with adults, because adults typically make it easy for them; the adults do most of the conversational “work” for the child. To use a baseball analogy, just because Tommy can hit Dad’s soft, underhand pitches at home, doesn’t mean he has mastered the skill well enough to hit pitches thrown by his peers on the playing field. Sometimes adult interactions with children with ASD are similar to throwing a child a soft, underhand pitch. Although they are positive and well intended, they do not adequately prepare the child for more difficult peer-to-peer interactions.

Too often, social skill deficits and inappropriate behaviors are incorrectly conceptualized as performance deficits. That is, we tend to assume that when a child does not perform a behavior, it is the result of refusal or lack of motivation. In other words, we assume that the child who does not initiate interactions with peers has the ability to initiate, but does not want to initiate (performance deficit). In many cases, this is a faulty assumption. In my experience, the vast majority of social skill deficits in young children with ASD can be attributed to skill acquisition deficits. That is, children with ASD are not performing socially because they lack the necessary skills to perform socially—not because they do not want to be social or refuse to be social. If we want young children to be successful socially, then we have to TEACH them the skills to be successful! Therefore, it is essential to focus on skill development when implementing social skills instruction.

The benefit of using a skill acquisition/performance deficit model is that it guides the selection of intervention strategies. Most intervention strategies are better suited for either skill acquisition or performance deficits. The intervention selected should match the type of deficit present. That is, you would not want to deliver an intervention designed for a performance deficit, if the child was mainly experiencing a skill acquisition deficit. For instance, in the example above, if Tommy has not mastered the skill of hitting (skill acquisition deficit), all the reinforcement in the world (including pizza!) will not help Tommy hit the ball during the game. If we want him to be a skilled hitter, we need to provide Tommy additional instruction on the mechanics of hitting a baseball. The same is true for social skills. If we want a child to be socially fluent, then we need to deliver effective social skills instruction. In contrast, if Tommy does have sufficient hitting skills, but lacks the motivation to “do his best,” then the reward of cheese and pepperoni may be all he needs to excel on the playing field.

Once a thorough social skill assessment is completed and the team is able to attribute the social difficulties to either skill acquisition or performance deficits, social skills instruction is ready to begin. There are a variety of strategies that can be delivered to young children with ASD. The most important thing is that the strategies being delivered are appropriate to the unique needs of the child and that a logical rationale can be provided for using the intervention. The following strategies provide a sampling of techniques that can be implemented to teach successful social interaction skills to children and adolescents with ASD. Other than peer mediated interventions (PMI), the strategies listed below are designed to address skill acquisition deficits. However, some of the strategies (in particular, video self-modeling and social stories) work equally well in addressing performance deficits. In addition, it is imperative that the child be reinforced continually for his effort and participation in the program.

Selecting Intervention Strategies: Accommodation and Assimilation

When selecting intervention strategies, it is important to consider the notion of accommodation versus assimilation. Accommodation, as it relates to social skills instruction, refers to the act of modifying the physical or social environment of the child to promote positive social interactions. Examples of this include: training peer mentors to interact with the child throughout the school day, autism awareness training for classmates, and signing your child up for various group activities, such as little league, or Boy or Girl Scouts. Whereas accommodation addresses changes in the environment, assimilation focuses on changes in the child. Assimilation refers to instruction that facilitates skill development that allows the child to be more successful in social interactions. The key to a successful social skills training program is to address both accommodation and assimilation. Focusing on one and not the other sets the child up for failure. For instance, one family that I worked with did a wonderful job of structuring playgroups for their child, and keeping their child active in social activities. However, they were becoming increasingly frustrated with the fact that their son was not making friends and still having negative peer interactions. The problem was that they were putting the cart before the horse. They provided their child with ample opportunity to interact with others, but they weren’t providing him the skills necessary to be successful in those interactions. Similarly, providing skill instruction (assimilation) without modifying the environment to be more accepting of the child with autism also sets the child up for failure. This happens the moment an eager child with autism tries out a newly learned skill on a group of non-accepting peers. The key is to teach skills and modify the environment. This ensures that the new skill is received by peers with both understanding and acceptance.

Social Skills Strategies

As stated previously, social skills often need to be taught explicitly to children and adolescents with ASD. Traditional social skills strategies (such as board games about friendships and appropriate classroom behavior) tend to be too subtle for many children with ASD. For instance, a school counselor was frustrated with the progress she was making with a student with autism. She stated that the program was showing positive results with “other kids in the group,” but the student with autism didn’t seem to “get it.” Indeed, he was not “getting it!” The reason was quite apparent. The school counselor was attempting to teach the students about the concept of “friendship.” This is acceptable for some children, but for children with ASD it tends to be a too subtle form of instruction. That is, instead of spending countless hours teaching the child about “friendship,” the instruction should have focused on skills the child could use to make and keep friends. Experience tells me that the concept of friendship is much easier to understand once you have a friend or two!

There are number of important questions to consider when selecting social skill strategies. For instance, does the strategy target the skill deficits identified in the social assessment? Does the strategy enhance performance? Does the strategy promote skill acquisition? Is there research to support its use? If not, what is your plan to evaluate its effectiveness with your child? Is it developmentally appropriate for your child? The following is a list of social skill strategies that have demonstrated effectiveness in teaching social interaction skills to children with ASD.

The following section summarizes various social intervention strategies that have been designed to promote social interaction skills in young children with ASD, including peer-mediated instruction, thinking-feeling activities, social stories, role-playing, and video- modeling.

Peer Mediated Interventions

The use of peer mentors is one example of an effective strategy for young children with ASD. Peer mediated interventions (PMI) have been frequently used to promote positive social interactions among preschool aged peers (Strain & Odom, 1986; Odom, McConnell, & McEvoy 1992). Peer mediated instruction allows us to structure the physical and social environment in a manner to promote successful social interactions. In this approach, peers are systematically trained to make social initiations or respond promptly and appropriately to the initiations of children with ASD during the course of their school day. Peer mentors should be classmates of the child with ASD, have age-appropriate social and play skills, have a record of regular attendance, and have a positive (or at least neutral) history of interactions with the child with ASD. Peer mentors should also be made aware of the behaviors associated with autism in a manner that is respectful and developmentally appropriate for the age group. The use of peer mentors allows the teacher and other adults to act as facilitators, rather than participate as active playmates. That is, instead of being a third wheel in child-child interaction, the teacher prompts the peer buddies to initiate and respond appropriately to the child with ASD and then get out of the way!. The use of peer mentors also facilitates generalization of skills by ensuring that newly acquired skills are performed and practiced with peers in the natural environment.

For more information on peer-mediated interventions, see Vanderbilt/Minnesota social interaction project play time/social time: Organizing your classroom to build interaction skills. (Odom & MCConnell, 1993).

Thoughts and Feelings Activities

Recognizing and understanding the feelings and thoughts of self and others is often an area of weakness for children with ASD and is essential to successful social interactions. For instance, we continually modify our behavior based on the non-verbal feedback we receive from other people. We may elaborate on a story if the other person is smiling, looking on intently, or showing other signs of genuine interest. On the other hand, if the other person repeatedly looks at her watch, sighs, or looks otherwise disinterested, we may perhaps cut the story short (I said perhaps!). Children with ASD often have difficulty recognizing and understanding these non-verbal cues. Because of this, they are less able to modify their behavior to meet the emotional and cognitive needs of other people.

The most basic thought and feeling activity involves showing the child pictures of people exhibiting various emotions. Pictures can range from showing basic emotions such as happy, sad, angry, or scared, to more complicated emotions such as embarrassed, ashamed, nervous, or incredulous. Begin by asking the child to point to an emotion (i.e., “point to happy”), then ask the child to identify what the character is feeling (i.e., “how is he feeling.

Many of the young children I work with seem to pick up the ability to identify emotions quite easily. When they do, it is time to move on to more advanced instructional strategies, such as teaching them to understand the meaning or “why” behind emotions. This requires the child to make inferences based on the context and cues provided in the picture. That is, based on the information in the picture, ask “why is the child sad?” The pictures should portray characters participating in various social situations and exhibiting various facial expressions or other nonverbal expressions of emotion. You may cut pictures out of magazines, or download and print them from the Internet. You may also use illustrations from children’s books, which are typically rich in emotional content and contextual cues.

Once mastery is achieved on the pictures, move to television programs or video footage of social situations. Many of the programs that air on Sprout or Noggin, are excellent resources for this procedure because they portray characters in social situations, and display clear emotional expressions. You can use the same procedure as for the pictures, only this time the child is making inferences based on dynamic social cues. Simply ask the child to identify what the characters in the video are feeling and why they are feeling that way. When the scenario moves too quickly for the child, press pause, and ask the question with a still frame. (Make sure your machine has a clear picture when on pause.)

Patricia Howlin’s book Teaching Children with Autism to Mind-Read offers helpful information and resources in this area of instruction. In addition, there are a number of software programs on the market that address both emotions and perspective taking abilities (seeMind-Reading: An Interactive Guide to Emotions by Simon Baron-Cohen).

Social Stories

A Social Story is a frequently used strategy to teach social skills to children with disabilities. A Social Story is a non-coercive approach that presents social concepts and rules to children in the form of a brief story. This strategy could be used to teach a number of social and behavioral concepts, such as making transitions, playing a game, and going on a field trip. Carol Gray (1995; 2000) outlines a number of components that are essential to a successful Social Story, including: the story should be written in response to the child’s personal need; the story should be something the child wants to read on her own (depending upon ability level); the story should be commensurate with ability and comprehension level; and the story should use less directive terms such “can,” or “could,” instead of “will” or “must.” This last component is especially important for children who tend to be oppositional or defiant (i.e., the child who doesn’t decide what to do until you tell him to do something…then he does the opposite!). The Social Story can be paired with pictures and placed on a computer to take advantage of the child’s propensity towards visual instruction and interest in computers. I have found that children with ASD learn best when Social Stories are used in conjunction with Role-Playing and used as a social primer. That is, after reading a Social Story, the child then practices the skill introduced in the story. For instance, immediately after reading a story about joining-in an activity with peers, the child would practice the skill. Then, after reading the story and practicing the skill, the child would be exposed to a social situation where she would have an opportunity to perform the skill. For more comprehensive guidance on creating a Social Story, see Gray, 1995.

Role Playing/Behavioral Rehearsal

Role-playing or behavioral rehearsal is used primarily to teach basic social interaction skills. It is an effective approach to teaching social skills that allows for the positive practice of skills (Gresham, 2002). Role-playing involves acting out situations or activities in a structured environment to practice newly acquired skills and strategies, or previously learned skills that the child is having difficulties performing. Role-plays can be either scripted or spontaneous. In the latter, the child is provided with a scenario (e.g., asking another child to play with him), but not with the specific script. Typically, I combine scripted and unscripted elements to each role-play. For instance, the child might be provided with an opening statement or question, but the rest of the interaction would be spontaneous.

I use role-playing to teach a variety of interaction skills, particularly those involving initiating, responding, and terminating interactions. In one scenario, the child is required to initiate a conversation with another person, who is engaged in a separate task. Consequently, he would have to ask to join in, or ask the other person to join him in an activity. The latter typically proves to be most difficult for children with ASD.

During the first few sessions, it is not uncommon for the child to get “stuck” in conversations and interactions, often for minutes without knowing what to say or how to proceed. During the early sessions, the child should be given ample time to process and respond to the role-play scenarios. As the sessions progress, speed and proficiency should gradually increase.

Video Modeling and Video Self-Modeling (VSM)

Video modeling is without a doubt the most effective social skills intervention strategy that I have used with young children with ASD. A video modeling intervention involves an individual watching a video demonstration of a behavior and then imitating the behavior of the model. Video modeling may be used with peers, adults, or self as a model (video self-modeling). Video self-modeling (VSM) interventions have the added advantage of providing the child with a visual representation of success…their own success! VSM can be used to promote skill acquisition, enhance skill performance, and reduce problem behaviors. It integrates a powerful learning medium for children with ASD (visually cued instruction) with an effective evidence-based intervention modality (modeling).

An emerging body of research demonstrates great promise for the use of video modeling (peer or adult as model), and video self-modeling (VSM), as a therapeutic modality for children with ASD. Bellini and Akullian (in-press) conducted a meta-analysis of video modeling and video-self modeling research across 20 peer-reviewed studies and involving 63 participants with ASD. Results suggest that video modeling and VSM are effective intervention strategies for addressing social-communication skills, behavioral functioning, and functional skills in children and adolescents with ASD. Specifically, these procedures promote skill acquisition and that skills acquired via video modeling and VSM are maintained over time and transferred across person and settings. That is, video modeling and VSM appear to be effective interventions for children across the spectrum of autism from early childhood to adolescence. Interventions produced rapid increases (or decreases in some cases) in targeted skills with a median intervention length of nine video viewings. In addition, the median duration of the video clips shown to participants was only three minutes.

VSM interventions typically fall within two categories, positive self-review (PSR) and video feedforward (Dowrick, 1999).

PSR refers to children viewing themselves successfully engaging in a behavior or activity that is currently in their behavioral repertoire. PSR may be used with low-frequency behaviors or behaviors that were once mastered, but are no longer. In this case, the individual is videotaped while engaging in the low-frequency behavior and then shown a video of the behavior. An example of a PSR intervention for preschoolers would be to video record the child participating with peers (low frequency behavior) and then show the child the video. Buggey and colleagues (1999) used a PSR intervention to increase responding behaviors in young children with ASD. The children in the study viewed videotapes of themselves answering questions while engaging in play activities. Although answering questions was a low frequency behavior for these children, the videos were edited to portray the children as fluent in their responses (i.e., non-responses were edited out of the video). The intervention produced rapid increases in unprompted verbal responding.

Video feedforward, another category of VSM interventions, is typically used when the individual already possesses the necessary skills in her behavioral repertoire, but is unable to put them together to complete an activity. For instance, the child may have the ability to get out of bed, brush her teeth, get dressed, and comb her hair (morning routine), but cannot perform these skills in the proper sequence. A video feedforward intervention would videotape her engaging in each of these tasks and then splice the segments together to form the proper sequence. The same may be done with typical social interaction sequences. For instance, the child could be videotaped demonstrating three different skills: initiating an interaction, maintaining a reciprocal interaction, and appropriately terminating the interaction. The three scenes could then be blended together to portray one successful, and fluent social interaction.

Feedforward is also a good option for children who need additional assistance, or support, to complete tasks successfully. The notion of “hidden supports” is an important component of video feedforward interventions. For instance, the child may be videotaped interacting with peers while an adult provides assistance through cueing and prompting. The adult prompt is edited out (i.e., hidden) so that when the child views the video segment, she sees herself as independent and successful. Feedforward requires additional technological capabilities, as compared to PSR, but it typically requires a smaller quantity of raw video footage.

For additional instruction on conducting VSM intervention, please refer to the Video Futures Project at the University of Alaska, Anchorage, http://www.alaskachd.org/products/video_futures/index.html .

For additional information on editing home movies, check out the helpful website, How Stuff Works, at:http://computer.howstuffworks.com/video-editing.htm

Implement the Intervention

Once you have assessed social skill functioning and identified skills to teach, discerned between skill acquisition and performance deficits, and selected intervention strategies, it is time to implement the strategies. Social skills instruction should be provided in multiple settings (home, classroom, resource room, playground, community, etc.) and by multiple providers. There is no “best” place to teach social skills, though it is important to keep in mind that the purpose of all social skills instruction should be to promote social success with PEERS, in the NATURAL environment. As such, if the child is receiving social skills training in a school resource room (or by a private therapist), it is imperative that a plan be put in place to facilitate transfer of skills from the resource room to the natural environment. Parents and teachers should look for opportunities to prompt and reinforce the skills that are being taught in the resource room or clinic.

Rate of skill development differs greatly from one child to the next. Some children will begin utilizing their new skills after only two or three sessions, while other children may require over three months to before they begin to “get it” and start using their newly learned skills. Of course simply using or trying a skill is just the first step towards social success. The child will take additional time to master the social skills that he is learning and developing. Gresham et al. (2001) recommended that social skills training be implemented more frequently and more intensely than what is typically implemented. They concluded that “thirty hours of instruction, spread over 10-12 weeks is NOT enough” (p. 341). Social skill instruction should be intense (as frequently as possible) and encompassing (in every environment the child enters).

Assess and Modify the Intervention

Although “Assess and Modify” is listed as the last stage in the intervention process, it certainly is not the least important. In addition, it also is not the last thing to think about when designing a social skills program. Typically, as soon as I am able to identify the social skill deficits to be addressed, I begin to develop the methods for evaluating the efficacy of the intervention. To use a basic example, if the target of the intervention is social initiations, then I might take baseline data on the frequency of initiations with peers and adults. I would then continue to collect data on social initiations throughout the implementation stage. Accurate data collection is essential in evaluating the effectiveness of the intervention. It allows us to determine whether the child is benefiting from the instruction, and how to modify the program to best meet the child’s needs. In school settings, accurate data collection is a legal imperative. When I work with school teams, the focus is on integrating the social skills program with the child’s behavioral and social objectives. As such, Stage 5 is typically a very important aspect of IEP development, implementation, and integrity.

Case Example

The following case study illustrates the use of a social skills intervention for a young girl diagnosed with autism. “Kelly,” was a kindergartener with low average verbal ability. Although her vocabulary was in the average range for children her age, she seldom used her language spontaneously with classmates and teachers. She spoke only when asked direct questions and interacted only when others initiated the interactions. Consequently, Kelly spent the majority of her playground time by herself, with little peer interaction. A social skills assessment concluded that she had significant skill deficits in initiating interactions, and maintaining interactions with peers. A social skills intervention was designed to increase the frequency and length of social interactions with peers. Data on peer interactions (initiations and responses to peers) were collected in both a structured playgroup, and during recess. Two peer mentors were selected to participate in a structured playgroup with Kelly. The peers were instructed to initiate and to respond promptly to Kelly’s initiations. The peers were also provided developmentally appropriate information regarding autism and Kelly’s behaviors, which included hand-flapping. Also prior to the playgroup, Kelly was read a social story related to initiating social interactions. Each time the story was read, Kelly was given the opportunity to practice initiation skills via a role-playing procedure. The children participated in a playgroup three days a week for two weeks. During the playgroups, Kelly was prompted to initiate interactions with the peers, and she was prompted to respond promptly and appropriately to the peers when they initiated interactions with her. The playgroups were videotaped over the two-week time period. The video footage was then edited to exclude the continual prompting and coaching provided to Kelly. The edited tapes portrayed Kelly fluently and effectively interacting with her peers. The tapes were shown to Kelly in 5-minute increments for two weeks. For Kelly, the VSM procedure facilitated immediate increases in initiations and responses to peers in both the play setting and on the playground. By the end of the school year, Kelly had developed relationships with two other children, friendships that continue to this day.

The purpose of this article is not to provide an all-inclusive list of social skills strategies available for children with ASD. Instead, the present article presents a social skills training model that assists families and professionals in the delivery of social skills instruction. In addition, not all programs are appropriate for every child. Great care and planning needs to be put forth to ensure that the strategies used in the program meet the individual needs of the child. Therefore, a multi-dimensional intervention strategy that addresses the individual characteristics (both strengths and weaknesses) of the child is imperative. In the example above, Kelly received weekly social skills instruction, in addition to speech and occupational therapy. Kelly needed a full compliment of strategies to be successful socially. As her mother told me, Kelly may never be the life of the party or a “social butterfly.” However, with the delivery of an effective social skills program, Kelly has been given an opportunity to develop the skills necessary to develop meaningful personal relationships. And the rest of us have been given the opportunity to meet a truly wonderful child.

References

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Article re-printed with permission from the Indiana Resource Center for Autism, at the Indiana Institute on Disability and Community, Indiana University Bloomington.


Bellini, S. (2009). Making (and keeping) friends: A model for social skills interaction. The Reporter, 8(3), 1-10.