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.

 

Why When You Don’t Know What You Want, You Get A Lot Of What You Don’t Want

By Brian R. King LCSW

This is the fourth 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 4: What Do I Want?

How many times have you heard someone on the spectrum complain about how much they don’t like the way things are going in their life? How often do you ask them, “Well what do you want instead?” Only to have them respond, “I don’t know.” This is one of the greatest challenges when parenting or working with a spectrumite. See if these interactions seem familiar as well.

# 1

I want people to accept me for who I am?

Who are you?

I don’t know.

# 2

I wish people would treat me better.

How would you like them to treat you instead?

I don’t know.

# 3

I wish I had friends.

Who do you want to be friends with?

I don’t know.

And the list goes on and on.

Parents ask all the time, “How do I motivate my child?” Teachers ask, “How do I get them to want to do their work?” When asked, “Well what do your children or students want? Guess what the answer is . . . “I DON’T KNOW.” In these scenarios both parents and teachers are more interested in compliance. They want the children to meet their needs and don’t stop to consider the child’s needs.

So if you as a parent or teacher don’t know, how can the child? In the meantime, you aren’t getting anywhere, you aren’t creating anything and you aren’t happy because instead of getting crystal clear on what you want, you settle for what the world gives you.

Think of it this way. You don’t have to do anything to grow weeds, they grow everywhere, without help from you. But if you want to grow a garden you need to get rid of the weeds and do what is necessary to grow the garden you want. Including pulling out the weeds.

So if you continue to sit in the place of “I don’t know” then the weeds of life will grow around you automatically until you decide what to do instead.

Life sucks because you allow the weeds to grow. Make sense?

Why Don’t You Know?

There are many reasons why spectrumites respond to questions with “I don’t know” a lot of the time.

1. Too Tired. I for one do it a lot when I’m tired. My son will ask me a question repeatedly and at that time I’m so tired it’s hard to think about his question because my brain is too tired to do the work.

At the end of a long school day parents ask their child, “How was your day?” and get “I don’t know.” Your child is exhausted and needs time to wind down, they’re likely too tired to answer.

However, if you ask that question when they’re feeling more alert and focused you’d likely get a very different answer.

2. Not Interested. Saying, “I don’t know” is also an effective way of getting rid of a conversation they don’t want to have. It is difficult to have an open ended conversation with someone when you don’t know the point or how long it’s going to last. Therefore, you protect yourself from the uncertainty by saying “I don’t know” so the conversation doesn’t occur.

The way to add more certainty for the spectrumite is to be concrete. For example, “I’d like to ask you a question about your day and then I’ll leave you alone.” That’s pretty darn clear wouldn’t you say?

3. Lousy Question. Too often the question you’re asking is too vague.

“How was your day?” starts an avalanche of thoughts the spectrumite now needs to sift through to give you an answer. It’s like trying to find your way through a snowstorm. “Did you learn anything interesting in science class today? is far more specific and easier to answer. If they answer “Yes” you ask, “What did you learn that was interesting?” If they answer “No” you can ask what they did learn.

4. Difficult to Consider. In many cases the question you’re asking requires them to look too far into the future. Since spectrumites see things right in front of them more clearly (forest versus the trees), seeing further out requires them to consider more variables. This can be very overwhelming because it requires them to both multitask and consider hypotheticals instead of facts. At best I can only plan a week at a time.

5. Isn’t An Option. Here’s the biggie. A spectrumite who is constantly being told what to do and who to be learns that what they want isn’t an option so they stop considering it. Instead they follow the lead of those who they’ve learned they’re responsible to make happy. READ THAT ONE MORE TIME PLEASE!

I work with clients who are always asking what they should do, what I think they should do and other variations. When I finally get past the “I don’t knows” it comes down to fearing they’ll making a decision that others will be unhappy with. They eventually learn to fear decision making.

So What Now?

It can be difficult to reverse the fear of decision making which is the most common challenge I experience when working with spectrumites. But let me give you a few ideas to get you started.

First, instead of judging or criticizing the decision, be curious about it. Ask, “Could you explain why you did it that way?” You may very well get, “I don’t know.” Especially if a person acted on impulse instead of thinking it through.

If the person becomes defensive it’s likely because they hear judgment in the question. So clarify, “I didn’t say anything was wrong with your decision, I’m just wondering why that?”

Next, Point out simple decisions the person makes that have a positive result. For a small child, something as simple as,

“Do you like your ice cream cone?”

“Yes.”

“Are you glad you chose chocolate?”

“Yes.”

“Sounds like you made a good decision then huh?

“Yes.”

With my thirteen year old this is a common conversation. When he decides to handle his frustrations by talking back and slamming doors he looses privileges. When he decides to take a break to collect himself and then sit down with my wife and I to talk it out, he ends up feeling much better.

Since we have that comparison, when he begins the road to door slamming I can ask him, “Is what you’re about to do going to get you what you want?” I then wait 5-10 seconds for the question to sink in then add, “The decision is yours.”

Contact:

Phone Number: 630‐778‐3447

Fax: 630‐6893‐9004

Email:Brian@SpectrumMentor.com

Website: http://SpectrumMentor.com

Your Opportunity: The Freshman College Experience

This post is by Autism College’s  first guest blogger,  Kerry Magro, who was diagnosed with PDD-NOS at age four. Now as an adult who has autism, he is a recent graduate of Seton Hall University’s prestigious Leadership Development Honors program, majoring in Sports Management. In 2008 as a college sophomore he started the first Student Disability Awareness club in Seton Hall’s history to help spread awareness and raise funds for those affected by autism and other disabilities.*

Here’s the scenario: You’re a college freshman. You’re on your way to THE higher learning experience of a life time. There is a catch though. As an individual with autism going into college you are in a distinct unknown class which is both good and bad. If you look at some websites today you may see how many people go to college from a certain race/demographic. With a learning disability though, especially autism, we don’t know the numbers of who’s going to college today and who’s not. What we do know is that an estimated 500,000 people with autism will become adults within the next decade. This means that your story, through your college experience, can inspire so many.

With so much still unknown it means that many people are still unaware of autism at the college level. Granted some programs know what they are doing, many still have a very long way to go. I can tell you though my life has changed so much because of my college experience with autism. When I was 4, I was diagnosed with pervasive developmental disorder- not otherwise specified (PPD-NOS). Almost 18 years later I made my dreams come true by receiving a diploma from Seton Hall University. I went through so many challenges to get there but because I faced those challenges I’ve become a stronger individual by far. Because of the uncertainty, it’s how you prepare now which will ultimately be all the difference in your college experience.

So where do you start? Many of the steps are very basic and most of them involve just one word which awareness. The steps that I tell people through a few blogs I’ve wrote is broken down into these…

  1. Making sure you understand who the faculty members are for your program (director, disability specialist, etc.)
  2. Understanding what accommodations they offer (extended time on tests, private rooms for exam periods, individual note-takers, etc.)
  3. Finding out if there is a disability support student organization (important in regards to making sure students have a “voice” and community that can promote acceptance and diversity).

Ideally these steps will put you ahead of the game. Still you will need to have a strategy for how to assess your Individualized Education Program (IEP) in College. I was the unfortunate soul who realized 2 weeks within college that I no longer would have an IEP. No one ever told me that my IEP would be stripped away, even during my exit interview. As I know this is August you can’t just go back to High School and do this but I would take any and all notes you have from your exit interview from High School and assess where you are as a whole. Find out what your strengths and weaknesses are and then after you figured that out what accommodations they offer (step 2 above). I would suggest doing all of these steps with a parent/guardian as well to make sure you don’t miss anything while going through the trials.

Other Mentions I usually tell people are:

  • Prepare to self-advocate. Many schools will make you sign a paper before they let parent involvement happen and even then they push independency.
  • Figure out whether you would feel comfortable living in a college dormitory. With proper documentation, you can ask for a single room to make your transition easier!
  • Speed Reading Courses (many are available at college institutions for students of all ages around the U.S.! You can also look for online video instructions, such as the one here)
  • Asking for a learning buddy (an upcoming sophomore to help show you the ropes)
  • Maintaining healthy reading and exercise habits (30 minutes a day for each) to keep the mind sharp in the summer
  • Reaching out to local and national autism-related organizations (such as the Autism Society and Autism Speaks) to talk with experts in regards to self-help and support groups.
  • Buy a SMARTPEN!

Finally, my last word of advice is to have fun! Many people say college is the best time of your life and it really can be if you let it. Remember, autism can’t define you, only you can define autism. At the same time PLEASE remember to give back. As I said, you’re voice is the key to our autism movement. So many famous people with autism today are much older and to promote forward progress we need new generals and new voices to come to the front and join in. Because Autism in college is still unknown a college education could very well be that first step…

* If you would like to contact Kerry  directly about questions/comments related to this post, he can be reached at his Facebook Fan Page or at kerrymagro@gmail.com. Please feel free to read his other college post which references some of his work in this post from The Autism Society of America here  (scroll down the page) along with his Autism Speaks college blogs here.

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

 

Life Skill – Toilet training (For Children with Difficulties)

By Prof Eric Lim, Kits4Kids Foundation, August, 2009

Toilet training is teaching an entire new skill. Teaching new skills to children with autism spectrum disorders works best when the steps to the task are organized into simple pieces. Teaching must also be consistent at all times and become predictable to the child in terms of rewards and consequences. In order for toilet training to be successful, the child must move from depending on reminders (timed trips to the bathroom) to recognizing the signs of a full bladder and taking the necessary actions him/herself.

As parents we look forward to that time when our child is finally toilet trained. We expect our child to learn to use the toilet as part of the growing up process. Not every child is alike, some children are difficult to train and may make toilet training harder on the parent. Learning to use the toilet is part of socialization. Children become interested in training when they become aware that other children and adults use the toilet. They assume that using the toilet is part of being considered a “big boy or girl.”

Most children enjoy the recognition and gratification they receive from adults when using the toilet as well as the rewards that come their way. However, young children with autism have trouble applying the same social interaction reason to toileting. They also are being asked to change set routines and rituals and they also may not be aware of or able to control their bodies just yet.

Signs of Readiness

For children on the autistic spectrum, it’s recommended to look for signs of readiness. Signs may include the following:

• Awareness that he or she has wet or soiled, a desire to remove the wet or soiled diaper (pulling at it, taking it off, digging in it, and or vocalizing displeasure.
• Getting a clean diaper, or taking you to the bathroom
• Ability to imitate actions (sitting on the toilet)
• Responds favorably to some form of positive reinforcement (a learned behavior increases after you reward it with something the child likes)
• Stays dry/clean most nights

When to start toilet training a child with autism:

• Many children with autism train later than the average age. Many succeed at urine training before bowel training. Many take longer to train, some reports suggest up to a year to become dry and two years to become clean.

• Start toilet training when you can be positive and the child is able to: sit comfortably on a potty chair or toilet for a couple of minutes, stay dry for at least 60 minutes, is aware of being wet or dirty, is showing interest in other people going to the toilet, showing some signs of cause and effect, and is willing to cooperate. Be prepared for it may be a long learning process.

Communication Problems with Toilet Training

For children with a communication deficiency visual learning may be an appropriate way to teach toileting skill. Does the child understand language? Does he or she understand “potty”, “diaper”, “dry pants”, “toilet”, “bathroom”, or any other words, signs, or pictures/symbols that may convey the idea of toileting. Children with Autism may have difficulty understanding and associating words with actions and most will at least need more time to process what you say. Can the child express the urge or need to use the toilet? Expressive language is almost always a problem for children with an autistic disorder. It will be important to be able to read their cues and/or teach a way to express the need or urge to use
the toilet.

Special consideration for children with autism:

• A child with autism may not be able to communicate a need to go to the bathroom, therefore body signals from the child, routines, and visuals might be significant aides.

• The child with autism may learn to use the toilet at home and be unable to adapt to a new situation easily.

• A child with autism may have sensory difficulties such as discomfort by the hard toilet seat, being afraid of water splashing, or want to play in or watch the swirling toilet water.

• In public bathrooms children with autism sometimes fear the hand dryers, have problems with the doors, the way the toilet flushes, or any number of challenges.

• Having a bowel movement is often harder and occurs less often. Some children go off alone and squat, some insist on wearing the pull-up or diaper to make a bowel movement, some fear that it hurts, some smear feces, and others want to be clean so much that they react to getting anything dirty on them.

• Rule out any medical problems and account for fears that may have developed due to pain from constipation or urinary tract infections in the past.

Before you begin toileting make sure your child does not have a medical problem which would interfere with making toilet training a success. This can be ruled out by the family physician after a routine physical. Contact your physician if you notice any unusual signs like too much or too little urination, painful urination, urinates frequently or unable to hold urine. The same applies to concerns with stool. Children with Autism have a higher than expected rate of bowel problems (constipation or loose stools or both) and require extra care if this is the case.

Making Toilet Training a Success

• Before starting, keep a record for a few days, charting every 20 – 30 minutes whether your child is dry, wet, or dirty. Some diapers have a strip that changes color to make this easier. Chart periodically, maybe once a day each week after starting training to keep track of progress, problems, and tendencies.

• When you start training, prepare the environment with the needed equipment and remove extra distractions.

• Plan a schedule that will match the report you gathered. If you child usually stays dry for an hour, anticipate to take him/her to the bathroom about 10 minutes before. Try to match the schedule to the natural cycles of the day.

• Plan the routine that you will have your child follow and make a picture chart of that routine so that your child and everyone who helps him can follow it. Change the cue level by decreasing examples as the child achieves the skill.

• Watch for signs of readiness such as when your charting shows being dry for an hour, your child indicates in some way that she is wetting or soiling diapers, indicates in some way that she has soiled or is wet, regular bowel movements, or interest in others going toilet.

• Keep positive, praise attempts, praise being dry and clean, use reinforcement and give your child time.

• When your child has some success with understanding toileting help him/ her learn to indicate that they are going to the toilet with a sign, word, or picture or several of these. Children today often use potty, pee and poop, but signing toilet may work or a picture of the toilet may be helpful. Visual cues as part of your routine helps the child tell you when they have to go potty.

Visual and Verbal Cues in Toilet Training

• Give a visual and verbal cue –such as an auditory giving the child a buzzer or bell. Decide what verbal cue you will use such as go potty, go pee, or go to the bathroom. If you use a signs, pair it with the verbal cues.

• Enter the bathroom with the cue needed (verbal, light touches, taking the child’s hand, or more physical assist).

• Pull pants down to ankles with cue

• Sit down with cue

• Pee or poop or both with cues

• Get toilet tissue and wipe with cue

• Stand up with cue

• Wipe, if needed, and throw tissue in toilet with cue

• Pull up pants with cue

• Flush toilet with cue

• Turn on water and wash hands with cue

• Turn off water and dry hands with cue

Use visuals: For many children, having a picture of a toilet or potty chair as a cue to go helps. You might also make a picture schedule to sequence the major activities of the day adding the toilet pictures before or after these. Children have learned to go on their own in this way. The pictures can be laminated and put on with Velcro or inserted in plastic sleeves so you or your child can take them off or change the order. There are also videotapes about using the potty that some children with autism have reacted well to. Other parents have made videos for their child to watch, some have paired music with the pictures. Model for you child, use books and pictures sequences about going to the toilet. Visuals
help your child know what to do, remember what to do, and learn from the sequence.

Use imitation: Imitation is a type of visual. Many children with autism are delayed in their imitation abilities, but many do watch carefully to what is going on around them even if they don’t seem to immediately imitate. Watching someone close to their size use the potty may be useful, but it is helpful for them to see that going to the bathroom is something everyone does. Some children might respond to the use of a doll to go through the steps.

Teach privacy and modesty: Most young children undress anywhere and don’t care who sees them go potty. However, as they are approaching four years of age, they often begin to want more privacy. Children’s needs must be considered and children have to be taught what society expects. Consider teaching your child to undo and pull down pants only in the bathroom as well as pulling up and fastening pants before leaving the bathroom. Once your child is toilet trained teach him to close the door. Also you might want to consider teaching your child when and where he must
be clothed or covered and not naked. Teach them to ask for ask for help with bathing.

Use words that are appropriate: Some children with autism are constant with the words they heard when very young and will not change to more appropriate words later. However, if you are aware of the need to be age appropriate it usually works to use the words that everyone else of the same age is using.

Ideas for Specific Problems That May Be Encountered:

• Resists sitting or doesn’t sit and relax long enough: Encourage your child to sit with his/her clothes on. Make sure the seat of the potty chair or the toilet is comfortable to your child, maybe it needs to be softer, maybe lined with a diaper, maybe warmer, or maybe your child’s feet need to be more stable. Some children may need to have the hole on the toilet smaller and experimenting with various sizes of seats or even covering the toilet with a towel or cardboard may help. Give your child a reason to sit such as his special reward that he/she gets while sitting. Use modeling by sitting together or having a doll or favorite stuffed animal sit. Give the child a visual or auditory cue about how long to sit by a visual timer or the length of a song. Help your child relax while sitting by providing support for feet and body where needed and rubbing your child’s legs. Sometimes children are so tense that they can’t relax and go.

• Afraid of flushing or excessively interested in flushing: Encourage your child to play in water that swirls in other places than the bathroom and at appropriate times. Always let your child know when you are going to flush the toilet when he/she is in the bathroom. Gradually bring your child closer to the toilet by providing a place for the child to stand while you are flushing. When your child is ready allow him/her to flush and either run or stay and watch. Establish a rule that you only flush once then you are all done.

• Afraid of public bathrooms: stalls, hand dryers, different sinks, toilets that flush automatically: At first, it may be necessary to be aware of the public bathrooms you may frequent to know what is likely to cause your child problems. Some of these can be avoided like being far away from the dryer and not walking under it and practicing with soap dispensers and sinks that go on by themselves in a fun way. Protect your child from toilets that automatically flush since some splash a lot. The more you know about the quirks of the public restroom the more you can prepare you child. The handicap stalls are wider and more accessible many a sink next to the toilet.

• Playing in water or with toilet paper: Take the toilet paper off the roll and put it up until your child can master the use of it. Put safety catches on toilets until your child can understand that toilets are not places to play. Allow lots of water play in appropriate places and even swirling water to watch such as in “tornado bottles”. Lower water toilets aren’t as much of a temptation while sitting. Use tissues that are folded or pre-measured, a box of wipes, and folded toilet paper are helpful.

• Resists being cleaned or not wanting to be dirty: Sometimes smearing of feces begins by the child trying to clean himself. They may try to clean up then make a mess. For whatever reasons your child may be having trouble in this area it is wise to stay as calm as you can. Establish a clean up routine that is not especially rewarding, but is comfortable and quick. Make sure the wipes are big enough and comfortable enough for your child including temperature and texture. If your child gets some feces on his hand and is distraught help the child wipe it as soon as possible. Show the child that they can wash their hands clean with soap and water. Sometimes as children with autism grow older they become upset when something happens like a toilet overflowing or they get their hands dirty and react
out of proportion, so we want to assure them early on that this can be fixed quite easily.

• Fear of having bowel movements or constipation: This is a common problem for many children with autism at some time in their childhood. It may be contributed to by diet, not sitting long enough, not being able to relax, their activity level, or various other factors. It is helpful to help a child recognize that the grunting and squatting he/she is doing helps make a bowel movement and that is good. Many children go and hide in a corner to do their poop and resist a change. Help them move closer to the bathroom and perhaps identify where to squat by using a plastic mat as the spot. Gradually influence the action to the potty or toilet over time the child associates the grunts and pushes as signals.
A child may have to go in the diaper even while sitting for a while so try a diaper-lined toilet seat. If a child experiences constipation on a regular basis bowel movements may be uncomfortable and you may need to seek advice from you doctor.

• Trouble in standing while urinating: When your son is sitting to urinate and completely toilet trained or when he shows an interest in standing he may need help. A visual chart of how boys use the bathroom may be helpful. For example action pictures of a boy putting the seat up, standing while urinating and aiming in into the toilet. Sometimes boys do not want to touch their penis because they may have been told not to touch on some occasion. A male in the family may need to demonstrate how to point and aim. Something may be used for a target like a floating paper, a Cheerio, or colored toilet water.

• Regression in toileting: Sometimes a child who is fully toilet trained will begin to have many accidents. Evaluate changes that have occurred and what information or additional supports may help your child feel comfortable again. Some reasons regression may occur are after an illness, after a parent has been away, after a move, after starting school, after a baby has been born, or when going to the bathroom has been painful. Your child may be in a situation where he doesn’t have the skills to tell someone he needs to go and holds it too long. His supports may not be in place. Sometimes at school there is something about the environment or the schedule that is causing problems for your child.
Go back to all the original supports that worked and put them back into your child’s life while reassuring your child that he/she can and will succeed.

Consistency in Toilet Training

Your child can be toilet trained. However, training your child with autism will likely take more planning, attention to detail, and consistency than training typical children. (Remember that all children with autism are different and some are easy to train.) You have to organize the sequence and provide a schedule and consistency until your child understands how all this relates to his body functions. Keep your expectations realistic and reinforce your child for trying as well as for success, always reassuring the child that he/she will succeed and there is plenty of time to try, and be persistent.

 

Moving Into the World of Employment

Contributed by Cathy Pratt, Ph.D., Director and Chris Filler, Professional and Parent, Ohio from Indiana Institute on Disability and Community

Every three years, the Indiana Resource Center for Autism (IRCA) is legislatively mandated to conduct a needs assessment survey. As part of this survey, families are asked questions about topics such as insurance coverage, Medicaid waivers, impact of educational programs, interactions with the criminal justice system, and other relevant topics. The past two surveys have asked family members with children no longer attending school programs about the employment of their sons/daughters on the autism spectrum.

In 2006, the IRCA survey showed that 61% of individuals (over age 18) represented in the survey were unemployed, 14% worked in sheltered workshops and 25% worked in community jobs. Those who are currently employed work an average of 21 hours per week and have a median annual income of $6,516. This figure is troubling considering the dramatic increase in the number of those receiving educational services under the eligibility category of ASD, and the realization that this population will soon be entering the adult service system en masse. It’s also troubling because it illustrates the misunderstandings among many professionals concerning the realities and range of ASD.

Families advocating on behalf of their sons/daughters on the spectrum will come to realize that many adult providers have not received current and accurate information on autism. This lack of knowledge will impact eligibility and the types of services the person will receive. Below are 10 recommendations of information that adult service providers will need to know.

  1. Adult service providers need a thorough understanding of ASD, the spectrum and the diagnosis. It is not unusual for there to be tremendous misunderstandings about Asperger’s and those at the “upper” end of the spectrum. Often these individuals are perceived as being willful or manipulative. For those with more significant disabilities, there is a misunderstanding about the potential gifts and talents they may possess. Adult service providers must understand the complexity of ASD, and that there are no generalized services that will work for all. They must understand that ASD is neurological and not a mental illness or emotional disorder.
  2. Those with ASD require a creative and careful assessment process. Many people with ASD often have unique skills that are not necessarily obvious during a traditional assessment process. They may possess skills suited for a specific “niche” that could lead to successful supported or competitive employment. Identification of these skills often occurs through careful observation, interviews with those who know the person well (e.g., family members or the individual him/herself) and a longitudinal assessment process. Several hours of traditional assessment or a checklist of vocational skills often misses the person’s unique and most important strengths.
  3. Be willing to think “outside the box.” Traditional vocational programs are not always the most appropriate or successful. Vocational/employment programs, supports and services all too often seem to be offered in terms of available options, instead of what the person needs and is interested in doing. Due to some people’s narrow focus and need for functional routines, there are situations when all of the available/traditional options for employment are equally unsuccessful. Sadly, there are times when a person is forced into an inappropriate setting and fails miserably. Agencies may then conclude the person is unemployable, rather than searching for a job match that acknowledges skills and talents. Do not assume that the person with ASD that struggles with communication and socialization has that same level of challenge in all areas. In fact, assume the opposite! Many areas of skill will be significantly more developed than social-communication skills.
  4. Be aware of sensory processing challenges. These challenges often limit many with ASD if gone unrecognized and un-accommodated. The person with ASD’s perception and ability to tolerate or cope with the sights and sounds of a typical work environment can be quite different than that of their co-workers. Accommodations can be made and coping skills can be developed. However, this does not happen automatically, quickly or under threat of losing a job. In fact, the person will likely shut down or quit rather than deal with the situation or attempt to explain the difficulties. This does not mean that the environment needs to be silent or rigid. It does mean that opportunities to periodically leave a stressful environment should be available and without consequence. Environmental control or accommodation can dramatically change the quality and quantity of the work or product, while presenting the person in the most positive light.
  5. Build on strengths. This should be the philosophy when working with any person. However, the strengths of those with ASD may be less obvious and may be more narrowly focused than those of others that come to the attention of agencies that provide employment services. Rather than addressing deficits, opportunities should acknowledge strengths and interests, when possible.
  6. Prepare, prepare, prepare. Be certain the person understands what is to happen during the assessment, work site trials and work training processes. Some require visual supports to assist in this area. Others may need to visit and explore the environment. In some cases, a verbal description and explanation of the situation, schedule and expectation may be sufficient. However, always err on the side of concrete and visual supports.
  7. Communication should not be all talk. Fewer words often are better. People have a tendency to talk too much to folks on the spectrum, regardless of whether the person is verbal or not. They assume that a verbal person will be able to understand verbal expression equally as well as other employees. This is misleading as some with ASD may use many words, but have limited receptive language. Be prepared to use more written and concrete communication and directions. Develop schedules, visual sequences of tasks, and information about the written and unwritten “rules” of the work culture. Employers and co-workers should be aware that the words they say may not communicate meaning as much as environmental reminders and cues. And finally, realize that many of these individuals do not understand sarcasm, innuendos and double meanings. As a result, the directions that we provide may be confusing or meaningless.
  8. Consider carefully the environment and predictability of the job. Workshop-type settings often are the worst for those on the spectrum. These settings typically contain many people, loud noises, and a lack of privacy or a place to get away. Even the person that seems less capable may perform better in a community setting with support than in a sheltered setting. Intermittent employment may not be a good idea either. Seasonal, ever-changing jobs increase the likelihood of anxiety, stress and behavioral escalation. This does not mean to place the person in a boring or static situation. This does mean that the predictability and stability of the employment will go a long way in creating an efficient and successful employee. If the job is one that offers change, use environmental and organizational supports to create predictability and structure.
  9. Social expectations require instruction. Social challenges are a hallmark of the ASD diagnosis. These challenges extend beyond the school years and can dramatically affect the person’s ability to successfully integrate into a work setting. Be prepared to help the person understand the social expectations (“rules”) of the job. These often are “unwritten” or “hidden” rules of the work culture, and can be critical for acceptance. Do not assume the person will “read” the social climate and adjust. It will not happen. Instead, prepare the person by teaching expectations. Rehearse how to greet, ask for help, “small talk,” compliments, etc. The employer should be aware that if social errors occur on the job, these should be calmly addressed in a very direct manner. Subtle suggestions will not work.
  10. Systems must work together (delays can be deadly!). The traditional “hand-off” between school and adult services over a few weeks or even several months often ends in delays in service or employment, misunderstandings and even failure in achieving a successful outcome. Agencies must work with schools to identify students early, begin to actively work with the school team to get to know the student, and begin to identify adult services and potential employment. Timelines vary from state to state and agency to agency. Funding and eligibility requirements may get in the way of a smooth transition. It goes without saying that funding will always be an issue. However, agencies must begin to create opportunities to work together systematically so that the transition is “seamless,” or at least does not unravel all together.

One final thought for family members: As your son or daughter moves from the public school system, which has clear legislative entitlements, to the adult world of eligibility, it is important to have a vision for your child. Examine the possibilities. An issue of the Autism Advocate highlights stories of success that occurred because family members pushed the system and expected a different type of future for their child. Hopefully, these exceptional stories will become common occurrences someday.


Pratt, C. & Filler, C. (2007). Moving into the world of employment. The Reporter, 12(2), 1-2, 13.

 

Free Q & A on Back to School Tips with Dr. Peter Faustino, moderated by Chantal Sicile-Kira

By the end of the summer, most of us parents are happy to see summer end knowing our ASD children will have routine and a schedule back in their lives (and so will we).  But  we dread the stress related to the start of a new school year.  There are ways to lessen the stress and help prepare both your child and the teacher for a new and hopefully successful new school year.

Autism College hopes to help this year by offering you a two hour free Q & A with Visiting Professor, Dr. Peter Faustino, school psychologist, moderated by Chantal Sicile-Kira. Both Dr. Faustino and Chantal have written on the topic and are looking forward to answering your questions and giving you tips to prepare your child, yourself, and the teacher for the start of a successful new school year! Whether your child is fully included or in a special day class there are ways to prepare and alleviate some of the stress of the transition from summer to school, especially when there are teachers new to your child or teenager.

Join Dr. Faustino and Chantal on Monday, August 22, 2011 from 6:00 to 8:00pm PST on the topic : Tips for Reducing the  Back to School Stress for Children with Autism, Parents and Educators.

Dr. Peter Faustino has been working as a school psychologist for more than 12 years.  He is currently the President of the New York Association of School Psychologists (NYASP).  NYASP – the state affiliate of NASP (www.naspweb.org) – serves children, their families, and the school community by promoting psychological well-being, excellence in education, and sensitivity to diversity through best practices in school psychology.  Dr. Faustino joined the Bedford Central School District in 2003 to work at the Fox Lane Middle School. Dr. Faustino also maintains a private practice with the Developmental Assessment and Intervention Center (DAIC) in Bedford Hills, NY.  He presents frequently at national conferences, schools, and parent organizations.

To sign up for the webinar, please signup for our newsletter here. Already signed up for the newsletter? Click here.

Modern Love

by Chantal Sicile-Kira

Editorial Note: This article originally appeared in Spectrum Magazine in the February/March 2010 issue.

My son is pining for a girlfriend. He’s on Facebook.

Relationship Status: Single

Interested In: Women

Looking For: Friendship, Dating,  A Relationship, Networking.

Political Views: Go Obama!

About Me:  I like to listen to music and walk on the beach. I can type with one finger. I have autism.

Jeremy is quite a catch – he’s buff from working out at the gym, has an endearing personality, and he starred in an award-winning episode of the MTV ‘True Life’ series.  Never mind that he is autistic, and needs help with everyday living skills, and probably always will. (In my opinion, he should be looking for a traditional wife who will take care of him, instead of a girlfriend, but I digress).

One night recently I woke up at 3:00 am to find that all the houselights had been turned on. Usually a sound sleeper, Jeremy had been making the rounds.  I heard him downstairs and decided to investigate. He was looking through my husband’s collection of architecture books. He found the one he was looking for, Las Vegas: The Fabulous 50’s, and flipped it open to the section on strip clubs and showgirls. “Why are you up, Jeremy, what’s going on?” I asked. “I’m thinking about girls,” he replied.

Oh, how I miss the prepubescent years when Jeremy was examining the guitars in the music magazines and not the beautiful models holding them. Although Jeremy has been showing an interest in females for some time, he is now communicating that guitar magazines just don’t do it for him anymore. I long for the days when his choice of reading and viewing materials ran along the gamut of Dr. Seuss’s ABC and Sesame Street when he wasn’t occupied with his school work.

The show that finally got his attention away from Big Bird is Entourage, which is basically a show about how four good friends from the East Coast now living in LA try to get laid and avoid relationships in between acting gigs.  There is a lot of eye candy for the guys on here (and the male actors are not so bad-looking either). Dusty, one of Jeremy’s tutors, nicely offered us the DVD of the first season as a gift.  Jeremy got hooked. When asked what he liked about it, Jeremy spelled out, “I like that they are good friends.” So I bought him Friends, which I thought was a little tamer but still dealt with friendships, but after watching two episodes, Jeremy didn’t want to see anymore. Frankly, there isn’t enough female nudity to keep his interest. I guess it wasn’t the male bonding between the main characters on Entourage that he was focusing on.

My main concern for Jeremy up until now has been where will he live, what can he do to earn money, what will happen when my husband and I are no longer alive. Not a week goes by when I don’t think about this and research the possibilities and create possible scenarios in my mind. He is now 20 years old, the same age as the young adults I worked with in a state institution for the developmentally disabled, years before Jeremy was born (I guess you can catch autism by osmosis). It is one thing to help people with autism and their families with the emotional detachment of a professional; it is quite another to be caring for and planning for your precious child. Because at the end of the day, it is the parents who are responsible, and it is difficult emotionally as well as practically to try and create a future for your loved one. Already just thinking of providing the basic necessities of food, shelter and work for your loved one with autism is a constant worry (unless he is a trust fund baby). But loving caresses, physical intimacy, love, and a relationship with someone who is with you because they choose to be, not because they are related to you – are also basic necessities, the kind you can’t pay for even if you have the money.  I am not immune to the sadness embedded in the emails from parents of young adults writing to me for advice, asking for answers; asking me what they should do, how are they going to cope.  I feel their pain, my heart aches as it mirrors my own distress.  We have barely enough energy to make it through an autism –filled day, let alone plan for the tangible – and less tangible – future needs of our children.

My son learned to communicate by spelling out on a letter board and has been doing it now for about 4 years.  The way he describes what autism is like for him, it sounds like a less severe form of  “locked-in syndrome,” similar to what Jean Dominique Bauby, the editor in chief of Elle suffered.  Bauby, had a stroke and lasped into a coma and when he woke up he could move only his left eye.  He wrote his memoir The Diving Bell and the Butterfly, blinking out a code representing the letters of the alphabet presented to him on a letterboard.

Jeremy is clear about what he feels and thinks.  “Being severely autistic means being stuck in a body that doesn’t work well with no way to communicate.  People ask do I feel emotions. Yes I do, I just can’t show them. Like when my mom helps me I am really grateful, but I can’t get my face to move. You know autism is very different from being retarded and the difference is that nothing seems different to me.  I am the same as you inside.  I can’t control my body but I am smart.”

Before my son could communicate his feelings, I had no idea how he felt about people and relationships. To look at his body language, which he can’t really control, you would think he does not want to be around people. Yet, he wants to connect so badly with people his own age and he struggles to find ways to communicate this. His quest to connect with friends was effectively documented on MTV:  Jeremy masters assistive technology in order to have a voice, yet  has difficulty  staying in a room full of noisy people at his own party.

On his 19th birthday, Jeremy let me know for the first time that he was unhappy with his birthday presents. When I asked him why, he spelled, “ I want a cell phone.”  “What do you want with a cell phone? You are nonverbal,” I exclaimed. “I want to text my friends,” he spelled. He sees how adept his younger sister, Rebecca, is at connecting with her friends via text, and he was hoping to do the same. This cell phone business has been difficult. Those little keyboards are not easy considering the visual processing and motor problems my son has. And the only real friends he has (sadly) are his tutors. But, I know he is lonely and wants to connect. So he got a cell phone.

Since Jeremy keeps bringing up girls, I suggested he join Facebook and work on his communication skills, as this is important for any kind of relationship. “Do you think I will really find a girlfriend on Facebook?” he asked. “It’s not that simple, but you will meet people and you can connect with others right from your home and practice communicating,” I told him.  Now, he goes on Facebook about every other day with one of his tutors. He likes to see if he has any friend requests and to comment on what he is doing.  What are you doing right now?  Jeremy is thinking the girls at the gym are hot.

Mark, one of his tutors, suggested that Jeremy start working out. He took Jeremy to check out  different gyms.  Once they had narrowed down their search, Jeremy and I went to discuss membership terms. When it came time to ask questions, mine were the usual, “What is the initial membership fee? What will the monthly payments come to? ” I asked.  Jeremy’s questions at the first place were a bit different. “Are the girls nice here?” he spelled out. “Are they pretty?”

As we arrived at the second place, LA Fitness, the doors flew open and more than a dozen gorgeous, shapely young women came running out. Jeremy was all smiles. We walked in and the receptionist said “You’ve just missed the Charger Girls! They just left.” Jeremy was even happier – a Charger Girls poster is the only athletic memorabilia hanging in his room.   “I like this place! This is where I want to come workout.” commented Jeremy.  Jeremy got straight to the point with the salesman. “Do the Charger Girls really work out here? Are they good at sports? What is their schedule?”

Jeremy joined LA Fitness, and goes regularly there with either Mark or Troy, another tutor. This past Christmas, Jeremy spelled out “I want to buy a calendar with pictures of girls for Troy,”  he spelled. “Uhhh…. OK, ask Janine to take you to the mall,” I replied. Jeremy is, after all, over 18.  Sure enough, Jeremy came back with a calendar aptly titled “Hot Buns.” I’ll leave the rest to your imagination. I’m sure he was inspired by the Charger Girls.

When Troy came over the following Wednesday as usual to take Jeremy to the gym, Jeremy gave him the calendar. Now, Troy is an ex-Navy guy, single dad of an 8-year-old girl, and works in a middle school classroom for students with aggressive behaviors. He is not your shy, withdrawn type. However, he looked perplexed when Jeremy handed him the calendar. “Jeremy, thank you, and I’m honored you thought of me, but why are you giving me this calendar?” Jeremy rocked excitedly back and forth and spelled out, “Because you are the best tutor to help my mom understand she needs to find me a girlfriend.”  “Jeremy, I know you need a girlfriend, the question is how to find one,” I said. “Troy is the best tutor to help,” insisted Jeremy.

I asked Jeremy what he wants in a girlfriend. “When I think about having a girlfriend I am thinking about sex,” he explained.  I asked, “Is sex all you think about?” “That really is not the main thing. I want a relationship. I want to have someone to talk to and laugh with,” he replied.

We have discussed a lot about what it means to have friendships and relationships and the meaning of love and how that is different from just having sex. He is beginning to understand the complexity of how it is not that easy and that, yes, being autistic and all that entails for him, it will be difficult. But that even without autism, having a loving intimate relationship with another person is not a given. “I think finding love is not easy for anyone. What I mean is that most people greatly search for love but do not find true love. I know this because I frankly see that my aunt is not married and she is a great person.”

I ask him, “What does love mean for you?”  “Love for me means that someone likes my way of thinking about life and the same philosophy about living. Love is not a prisoner but it makes you realize that you care about this person more than anyone else.”  I could not have said it better myself.

While Jeremy has his eye on Entourage for inspiration, I have my sights set on Big Love. Having three wives, a 3-house suburban home, an extended family and strong community ties  – it sounds like a better model for what Jeremy’s future should look like. With three wives, Jeremy would have the love and intimacy he craves, and the women would have plenty of respite.  This arrangement would also solve the housing problem and our worries about what will happen when his father and I are no longer alive. For now, I keep searching for ways for him to connect and relate with people, and to keep alive the flame of hope he carries in his heart that one day, he will find true love.