Beyond Brochures

How to research and evaluate premium college support programs for students with learning disabilities.

By Wendy Byrnes and Eileen Crumm, Ph.D.; Finding Solutions LLC

GETTING STARTED

In recent years, more and more students with disabilities have graduated from high school and entered the post-secondary educational environment of college or vocational training.  The good news is that in response to this population’s unique learning profiles, a growing number of programs that offer support to those students have emerged.  Such programs may offer a menu of specialized or premium services that can include academic tutoring, liaison with post-secondary programs, coordination services, life skills instruction, social skills training, coaching and mentoring, vocational education, job internships and job placement.

Students with disabilities that are leaving high school should look for classes or a course of study that interests them.  It may include community college, vocational and certificate programs or a university.  This is a daunting task for many students, as they plot their course in life – hopefully independently.  College is achievable with preparation and meaningful supports and it is particularly important that students take ownership of their future, whenever possible.  A question that must be asked is “Who is holding the expectations for what will happen once a student leaves high school?”  Parents and professionals need to continue to mentor and advocate for the transitioning student while aligning future expectations with desires and capabilities.

While supported programming holds the promise of helping a student transition to a productive, young adult life, no one program will provide a panacea.  Due diligence should be done when investigating various options and looking well beyond any program’s brochure and marketing efforts is an absolute must.  The old adage of “wherever you are, there you go!” provides a healthy measure of truth for consideration in whatever plans are made.  Students and their families (along with professionals that may support the transition process) should be informed and empowered to find the most current and appropriate range of options.

As the demand for specialized support programs has increased, so then has the supply. Recognizing an opportunity for additional areas of service, various colleges, universities, for profit and nonprofit organizations have attempted to fill a void for services.  However, the population they propose to serve is far from homogeneous.  Rather it consists of young adults who share a tremendous desire to succeed and be independent, but have varying ability and skills to do so.   This means that a program needs to have both depth and breath in order to successfully serve its intended clientele of young adults with disabilities.

Some students with disabilities who enter college may be unprepared to manage their new-found independence and freedom.  They may struggle with navigating the new terrain of a college environment and be more fragile emotionally and socially. The fortitude of even the highest achieving student is tested when managing the ever-changing priorities of juggling classes, course work and living away from home.  For students with organizational or processing issues, the stress may be magnified many times over.

Programs that support students should be earnest and committed to the initial and long- term success of the student.  Students and parents may be vulnerable to programs that appear to make big promises and in the end, deliver less than desirable results.

Building a quality program takes time, expertise and commitment.  But to meet the rise in demand, programs can be put into place too quickly.  They may not have robust organizational structures and could fail to meet the divergent needs of their target population.  Others are too new to show any real or meaningful outcome data, so it becomes difficult to judge whether attending such a program would actually help a youth to become a successful adult.  The mission of any program selected should match the individual student’s expectations and needs.

Families who have pursued independent programming or services in the past for their children may have more familiarity with the specialty program or school selection process.  However, others that have used public school services or may be sending a young adult off for the first time will find they are navigating in unfamiliar terrain that can be overwhelming.  Investigation, planning and close examination of potential programs ahead of time can save costs and avoid buyer’s remorse in the long run.

PROFILE OF THE SERVICE PROVIDER

First, exactly what kind of program is being considered and what college(s) or vocational programs does it affiliate itself with?  Is the program embraced and supported by the faculty and administration of affiliated institutions?  How inclusive is the program with regard to the general population of students?  Are services centralized or decentralized and what other resources may be available such as counseling, writing centers or assistive technology labs?

Check that the associated colleges and vocational programs are ones that the student would actually want to attend.  Ensure that the classes that he/she may take (whether it be ceramics or physics) will be offered at the institutions affiliated with the support program.

It would be important to visit places like the office of specialized services of the associated  campuses and get a feel for how they deliver overall educational services and supports to students with disabilities.  Although both the Americans with Disabilities Act and Section 504 of the Vocational Rehabilitation Act of 1973 protect students in higher education, some schools and programs are much more willing to make accommodations for students with disabilities than others.  Ask to see printed materials that professors and staff are given to explain various disabilities and the rights and responsibilities of students.  Choosing a program that works with an institution offering relaxed time tables for completion of degrees or certificates may be a key element of success for some students.

Another factor to consider is how long the college support program has been operating as some programs are rapidly expanding to multiple sites.  Some of the sites may be more established, or offer a different mix of studies, or have a more inclusive student culture.  Families and students considering a support program should see how transparent the organization is in the way they operate. Try to get an understanding about the philosophy of the support organization to see how they actually view their work. Ask questions about the experience, training and stability of the staff working with students.   How is staff hired, trained and managed?  Is there a separate curriculum (for example on life or social skills) that is offered to or required of students?  What is the ratio of students to staff?

Find out if the support program is a for profit entity.  Contact the Better Business Bureau to see if there have been any complaints or actual lawsuits lodged against it.  If it is a non-profit, ask about the stability of the funding to run the program long-term.  In either case, get detailed information about the “real price” for attendance.  Think about additional costs that may not be covered in the price quoted in the brochures such as housing, additional daily living expenses and out-of-state tuition for the associated college or university etc.  Is there financial assistance for students entering the program or support applying for it? Has the program developed any additional links to public funding like the Department of Vocational Rehabilitation or Department of Developmental Services when appropriate?  A very clear picture should emerge about the financial commitment involved

APPLICATION PROCESS

How are student’s applications reviewed to make sure they are appropriate for the program?  Is their a mandate for complete disclosure to ensure the safety of all students?  What is the ratio of students who apply to students who are accepted? What is the general age range and make up of the student body?  What does the interview process like?  How competitive are the placements for the program?  Is there a minimum SAT score and/or other academic requirements to meet?  What kind of supplementary information is required as part of the process such as psycho-educational testing or proof of disability in order to be considered for admission?

How involved is the student in the process?  Does the support program require new students to review and agree to a standard of behavior?  Does it provide liaison to the college to ensure that the student’s disability is appropriately disclosed and that the student can avail of all the supports they are entitled to?  Are students expected to know how to explain their disability to staff during an interview?  If a student takes medication, are they expected to know what it is, what it is for and whether they manage their medication on their own?

As students move toward programming beyond high school, so much is expected or inferred and while the chronological age of the student may be 18, maturity and baseline knowledge about self-care may be delayed or emerging.  As part of the preparation or application process for college or added support program, families need to think through the level of independence for each student and the upfront knowledge and skill level required to manage classes as well as personal lives.

Students leaving high school may be surprised to find out that the special education process as they may have come to know it has ended and that they will now encounter a new system of accommodation only verses accommodation, modification and remediation.  It is important to know about (and obtain) the type of current documentation needed to show how a student’s disability may affect them.  Effort is no longer rewarded as much as results and students should be prepared to understand the shifting expectations in college.  Assessments that have been completed on behalf of a student need to include recommendations that trigger accommodations.

Another critical question in the investigative process is how is actual recruitment into the support program facilitated?  Are there student enrollment targets that sites may be trying to meet?  Do consultants, management or admissions staff get incentives for getting students through the door and for keeping them there? How likely is staff retained by the program to pressure students to stay in order to receive said incentives?  How much time do the admissions people spend in the actual program to know what is currently happening “on the ground?”  What information can they provide on the make-up of the group of students in the program?

Families should check to make sure that marketing efforts and materials presented actually match the specific services that are delivered.  Be weary of the brochure that looks too good to be true.  Some support programs spend a great deal on marketing efforts to woo students and parents can get caught up in the pressure to place their child.

CONTENT OF THE PROGRAM

Some programs offer a menu of services while others offer a more standardized model.  Whichever may be chosen, it is essential to know what is on the menu for a student.

Transitioning to a new school environment is huge for any young adult.  Therefore, the first issue that comes to mind is finding out what support exists for the student as he or she transitions into the setting.  Are there initiation or orientation processes? What kinds of additional services (if any) exist for any ongoing problems or concerns?  Does the program appoint a mentor or “go to” person for an individual student?  What is the activation process the student would use if they needed a specific support?  How available and approachable is staff to deal with student’s concerns?  How well does the student actually articulate their concerns, challenges or needs so that others can support them in their requests?

Beyond academic support, what is in place for assisting students who may have health issues, mental health struggles or a general breakdown in day-to-day functioning?  Does the program have a list of trusted allies to which a student can be referred?  What training is in place for staff to spot potential problems including abuses, aggression or violence?  Is staff trained to recognize when a student may be considering self-injury or suicide?

Is there programming in place for students to support those that are shy, socially awkward or isolated?  Are students encouraged and supported to join in the broader community?  Are activities mandatory and how are they selected?  What happens if a student is fearful to attend group activities?  How are disagreements or insults among students handled in a group?  How is leadership and compassion encouraged?  For particular students, social success may be far more critical than academics as a marker of present and future victories.

When a student falters or experiences additional trouble, what happens?  Are there measures in place to assist the student?  What happens if the student remains unsuccessful?  How willing is the program (and any educational entity related to it) to keep a student enrolled?  Is there assistance to look at other options if the current option fails?

Once a student has reached the age of majority, communication will (and legally should be) primarily be with the student and the educational entity and program.  Waivers must be signed by students if parents expect to be in the loop for exchanges of information.  Some programs want ongoing parent support and others may discourage it.  It is important to know the policies and expectations ahead of time.

If a student is going to be housed on campus or nearby, check out how solid, stable and conveniently located the housing is.  Is housing that is owned and operated by the program or institution itself offered?  What oversight is involved?  Who handles maintenance?  Are there significant leasing commitments to think about?  How are shared expenses for roommates handled?  Is there a student handbook that covers rules for co-existence including policies for drug and alcohol use?  What is the policy for having guests in the rooms or apartments including boyfriends or girlfriends that spend the night? What happens when roommate issues arise or how might an initial roommate selection process take place?  How are matters settled in a dispute?  If students are in dorms, what kind of resident adviser support might they get?

Equally important to note is if housing is in a safe neighborhood with nearby amenities.  Is it accessible to public transit and are students given any support or instruction to utilize whatever transportation options are available?  If the students are housed in apartments, is the general public living there as well and who makes up that population?  Families may want to look at crime and local police blotters to see if there has been violent crime reported in the area.  Is there limited access to student housing (and supports) during holidays and school vacations?

SERVICE DELIVERY

The next crucial piece to consider is how services are delivered.  Does the student self-select for services?  What if they need additional organizational support?  What kinds of external organizational supports exist?  Does someone regularly check in with the student including making sure that outside class assignments are completed, tutoring sessions attended? Is anyone tracking the overall well-being of the student?  Are there records to track services that have actually been rendered?

Ask program staff about the kinds of classes that students actually take.  Are they credit or non-credit classes?  How many students actually complete a degree? If students are taking classes at the support program’s site such as study, life or social skills, how is that measured in terms of success and building upon emerging or existing skills?  How is that reported and documented?  Is there an opportunity for fluidity in the program or is it more rigid in the way it delivers standard services?

If parents must sign a contract for services, be careful when reviewing and BEFORE signing.  Take care to see how iron-clad the contract is and whether there is an escape clause if the program is not successful or a failure to deliver promised services can be substantiated.  Can services be prorated?  Is there a varied selection of services to choose from?  Must a student sign up for all services if only certain services are needed? Is there a dispute resolution process in place for programmatic or contractual issues?

Last but certainly not least, a program should encourage a student with a disability to become the very best self-advocate they can possibly be.  Who will help them to understand the ongoing and changing process for asking for appropriate accommodations with regard to their classes or in the workplace if they are learning a vocational trade? Students with disabilities must access post-secondary programs that will steadfastly support them in their earnest efforts to succeed not only academically but in self-awareness and self-determination.

OUTCOMES FOR STUDENTS

Every parent wants to believe that they are sending their child off to a program that offers positive results.  With that in mind, what are the reported outcomes of graduating students like?  If it is a newer program, what kinds of grades and progress are students making that have entered the program?  How is success measured?  Some programs feel that getting a student integrated into the general scheme of college life and then letting them spread their wings on their own IS success.  Others may want to follow the student through the entire program.  Ask for references to gage other’s experiences with the program.  Check for blogs that might exist about the program as commentary can be quite sobering to read and content should be checked for its validity.  There are also a number of blogs and posts on social media that document local dorm and apartment living so bear that in mind when looking.

CONCLUDING THOUGHTS

Post-secondary, supported programs should create an atmosphere of authentic hope tempered with realism.  Many supported programs accept students well past the age of eighteen and there is time to prepare and amass more coping skills and maturity before utilizing a comprehensive supported program if one is actually needed.  But students must be ready and motivated before they commit to the program that appears to have the best set of services and supports to assist them in their unique journey toward personal independence and achievement.  Being a wise and knowledgeable consumer who has done the needed ground work to find a support program with integrity and commitment to its students will certainly be worth every bit of time and effort involved.

 

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.

 

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