February 24, 2008
Asperger’s Syndrome and the Voyage Through High School: Not the Final Frontier
By Graetz, Janet E Spampinato, Kim
James begins his college day like most other students. He gathers his books, notebooks and pens, and starts the walk across campus. For most college students, the walk is an opportunity to talk and laugh with friends. James, however, walks alone, unable to make eye contact with his peers. He appears uneasy and anxious as he approaches the classroom door, only to find it locked when the instructor was supposed to open the door before 8:00 a.m. His heart beats faster. As other students gather, the noise level of laughter and friendly chatter increases making James even more uneasy. Finally the apologetic instructor arrives, unlocks the door and the noisy students file in. James immediately walks to his usual seat only to find another student already there. James tenses up. The instructor prompts everyone to be seated and James awkwardly slides into an unoccupied seat at the front of the room. His heart is racing as class begins. James sees the instructor's mouth moving, but is unable to process what is said. James drops his head and thinks that maybe college isn't for him. Our college campuses are seeing an increased number of students like James. While the characteristics differ from student to student, James is representative of a student with Asperger's Syndrome (AS). Twenty years ago, many students with Asperger's Syndrome did not see college as a postsecondary option. Today, more high school students living with Asperger's Syndrome expect college to be in their future, looking forward to an environment where they may finally shine. High school counselors may be unfamiliar with the intricacies of AS and unsure as to how to advise these students. In addition, college admission counselors may also be uncertain as they advise students with AS regarding college life. There is a need for both high school and college counselors to better understand students with AS.Asperger's Syndrome
Asperger's syndrome is a neurological disorder included in the spectrum of autism disorders. Although Hans Asperger first identified children with "autistic personality disorder" in 1944, the condition that became known as Asperger's Syndrome was rarely acknowledged until 1981 when Lorna Wing published an account of 34 cases of the disorder in children (Gillberg 2002). Unfortunately, since the 1990s, the United States has been experiencing a dramatic increase in the numbers of children with Autism Spectrum Disorders (ASD). The Centers for Disease Control now states that ASD may affect as many as one in 150 births (CDC 2007). Asperger's Syndrome appears to be more prevalent among males than females, with males making up approximately 75-80 percent of diagnoses. This may not reflect the actual incidence among females since females learn to compensate for their impairments because of differences in socialization (Attwood, et al. 2006). Because the etiology of autism is not known, current research is focusing on several factors including a genetic predisposition, neurological dysfunctions and environmental toxins (Heflin and Alaimo 2007).
Individuals with ASD are said to exhibit characteristics that fall into a "triad of deficits" that include (a) communication, (b) socialization, and (c) interests and activities. The Diagnostic and Statistical Manual of Mental Disorders IV Text Revised (DSM-IV-TR) lists five sub-types of Pervasive Developmental Disorders, the umbrella term that encompasses characteristics of individuals who exhibit the "triad of deficits": (a) Autistic disorder, (b) Asperger's disorder, (c) Rett's disorder, (d) Childhood disintegrative disorder, and (e) Pervasive Developmental Disorder- Not Otherwise Specified (PDD-NOS) (APA 2000). For children and adolescents with Asperger's Syndrome, difficulties in communication and socialization and their tendency to focus on specific topics and interests will last throughout their lifetime affecting their opportunities for socialization, education, and employment.
Students with AS may display impairments in both expressive and receptive communication. They may develop an extensive vocabulary, yet lack affect when speaking or use odd words and phrases. Their enthusiasm regarding topics of interest may lead to overly talkative encounters which others can find tedious (Attwood 1998). At other times, individuals with AS may seem at a loss of words, especially during times of anxiety. Since it is frequently difficult to verbalize feelings and emotions, adolescents with AS may not say anything when extremely upset.
Impairments may extend to nonverbal communication and include odd body postures, limited use of gestures, and limited eye contact (Heflin and Alaimo 2007). In addition, language use, or the pragmatics of language, may also be severely affected. Idiomatic phrases, such as "It's a dog-eatdog world" may be literally interpreted.
Other difficulties include initiating and sustaining a conversation. While the individual with AS may want to follow a given verbal directive, their difficulties in processing auditory information make this an impossible task. This can be especially problematic when the individual with AS is participating in a group discussion and must shift focus from one member to another while interpreting quick verbal messages.
Socialization difficulties may be the distinguishing trademark of Asperger's Syndrome. While typically developing children eagerly interact with their parents and peers, children with AS may prefer to be alone and fail to engage others (Heflin and Alaimo 2007). Adolescents and young adults with Asperger's Syndrome may lack Theory of Mind, the ability to understand that others may have different thoughts, feelings and interests (Baron-Cohen 1998). If someone lacks the ability to imagine the state of mind of another, they may also have difficulty understanding the motives of another's behavior. A teen with AS may not fully understand why the crowd goes crazy when the football team makes the winning touchdown. They will hear the cheering and see the happy faces but will not experience the same feelings of overwhelming joy. They lack "social contagion," the ability to get caught up in the emotions (whether good or bad) of others.
Many adolescents with AS want to socialize with others, but find the task overwhelming and frustrating. This can be especially true of adolescent boys trying to make conversation with teenage girls. Because the nuances of how to interact with others is not understood, their behavior is frequently misunderstood as strange or weird.
"An acquaintance is not a friend. A girl who smiles at you is not your girlfriend." These social rules seem so obvious that one may question why they need to be taught, yet adolescents with AS will not learn them by observing others and by mere placement in social situations. The development of socialization (understanding of social rules) and eventual autonomy can take a lifetime for an individual with AS to develop. They may leap at the opportunity to attend college because they assume that their presence on a college campus will result in immediate friendships (something that perhaps did not occur in high school). The adolescente with AS probably wants friends, but is unsure how to go about obtaining them. Whereas typically developing adolescents now seek the social support of their friends, close friendships may not be realized by students with AS. They may not experience the "friendsickness" experienced by typically developing students because close friendships are not a part of their past.
Interests and Activities
As a result of impaired executive functioning (the ability to plan, organize, change plans and set goals), individuals with AS may be very rigid and inflexible in their thinking. Restrictions may be seen as an insistence for sameness in regard to activities, topics of discussion or even the arrangement of dorm furniture. Individuals with AS may also have a preoccupation with specific topics and are unwilling (or unable) to change topics (Scott, Clark, and Brady 2000). While the preoccupation of a specific topic can be a hindrance, it can be a strength when the adolescent with AS can align the interest to specific classes and a possible career.
While other individuals on the autism spectrum may display cognitive impairments, individuals with Asperger's Syndrome have normal to gifted IQs. They will complete their high school education, obtain diplomas and seek further education. For some students considering higher education, college may provide an environment in which they can explore interests without ridicule and experience personal growth. However, for other students, the challenges of adolescence combined with the emotional stressors and challenges of higher education are particularly overwhelming (NCSPES 2000).
Adolescence and Emotional Development
Many terms have been used to describe the typically developing adolescent: moody, immature, irresponsible, sexual, confusing, and egocentric. Certainly the adolescent stage of life is difficult for many teens and can be especially problematic for adolescents with AS. Although Erikson (1968) claimed that identity development and emotional development occurred during the stage of adolescence, other researchers state that identity formation begins in early childhood and is a lifelong task (Graham 2004). While emotional development includes an array of topics, three areas are most influential: (a) the parent-child relationship, (b) socialization/ friendships and (c) cultural/environmental conditions. Parent/Child Relationship
Whereas typically developing young children seek parental comforting and interaction, children with AS may not feel the presence of this bond. This lack of emotional connection may be the result of an impairment in the limbic system, our emotional seat of the brain (Bauman and Kemper 2007). Children with AS may become attached to "objects" more readily than with parents/caregivers (Klin, Jones, Schultz, Volkmar, and Cohen 2002). Parents of children with AS with "good intentions" may attempt to fill the void when friendships are lacking. The parental supports that should have naturally given way to supports from close friends may not occur. For this reason, parents frequently continue to solve problems, make decisions and ask the questions for their child with AS. The typically developing adolescent is able to leave the family and forge ahead on his or her own. While typically developing children may find this refreshing, this can be anxiety-provoking for students with AS who may prefer the structure of high school and familiarity of family routines.
Sociocultural and Environmental Factors
Adolescent emotional development is influenced by sociocultural and environmental factors. The development of emotion regulation (ER) is influenced by what the child observes in other family members, parental styles and practices, and the emotional climate of the family (Morris, Silk, Steinberg, Myers and Robinson 2007). The family dynamics are a result of (a) the age of the family members, (b) race, (c) religion, (d) economic status, (e) gender, and (f) family rituals and traditions (Turnbull, Turnbull, Erwin, and Soodak 2005). The emotional development of each of its members is related to these factors and changes over time.
In an emotionally stable family, the adolescent is able to explore his boundaries within a supportive environment. While society may influence behavior, it is within the family that the child learns how to regulate his emotions and feelings. With successful regulation, a child is able to (a) change their emotional tone dependent on the context of the situation, (b) modulate their expressions of emotion (from slightly irked to a full rage), and (c) identify coping strategies needed at times of stress.
Frequently, family members with AS may perceive their experiences as very different from other family members, and therefore may seek the companionship of other individuals with AS. Using terms like "aspies," in conversation suggests that individuals with AS see themselves as like-minded individuals who group themselves together. When referring to individuals without Asperger's Syndrome, they may frequently use the term "neurotypical" or "NT." (These terms are not meant to be disrespectful.)
Although not always visible, students with AS may face discrimination in the classroom and the social arena. While previous studies have shown that prejudice and discrimination can have an effect on persistence for minority students, it is not known whether students with AS face similar challenges (Cabrera et al. 1999). If adolescents with AS feel diminished and lack self-esteem in high school, they may be less likely to pursue higher education, though academically prepared to do so.
Challenges of the College Admission Process
At the secondary level, the Individuals with Disabilities Education Improvement Act (IDEA) mandates the provision of assistance for students with disabilities. This assistance is usually geared around services and is available in middle school and high school. At the postsecondary level, the Americans with Disabilities Act (ADA) and the Rehabilitation Act are the primary mandates for the provision of assistance, usually in the form of accommodations and support. The concept of individualized services gives way to a set menu of accommodations depending on the individuals' disability as students experience a new level of independence. The supports formerly experienced in high school may suddenly decrease or disappear as the student with Asperger's Syndrome finds himself responsible for his or her own needs on a college campus. As we have seen, the emotional development of the adolescent with AS may be at risk as they exit the high school setting and seek higher education.
In college, students must identify themselves as having a disability to receive reasonable supports that will assist them in academic performance. For individuals with Asperger's Syndrome, the academic support such as increased time for test-taking and note- taking may be useful, but other support and services, especially those within the social/relationship domain, may not be addressed. Unfortunately, most university offices of disability support may not understand the complexities of the diagnosis. While the academic supports may provide some assistance, the greater issues of social and emotional well-being and coping with feelings of fear, anxiety and excessive stress may go unaddressed. Counselors both within high school and in the college admission office can assist students with AS to make informed decisions regarding their future.
Implications for Counseling
With limited knowledge of this disorder, high school and postsecondary counselors, and university faculty and staff may be faced with a distinct disadvantage in their efforts to address the needs of this population. To ensure success of students with AS, educational professionals must have a thorough understanding of Asperger's Syndrome and reflect on how their practice can best meet the needs of these individuals.
Tips for working with students with AS:
* They tend to be visual, concrete learners. When working with them, limit verbosity and provide visuals to promote understanding. For example, as a high school counselor, you may have a student complete a visual diagram that helps him to see a timeline for the college submission process:
Figure 1. A Visual Representation for Goal Setting 1
* Since auditory processing may be impaired, give ample time for students to reply to questions or instructions. Pause between sentences or use written instructions.
* Promote self-advocacy and self-determination. Students in high school need to begin asking the questions and learn how to seek assistance. Unfortunately, students with Asperger's Syndrome may be accustomed to the close support of a paraprofessional or special education teacher. There will be no hand-holding in college.
* Have them hear the experiences of others who are on college campuses. When they hear about a typical day, they gain insight on types of problems other students faced and resolved.
* Have students explore types of financial assistance. AS students can have trouble holding a job freshman year because the transition to college is overwhelming.
* Make students aware of the differences between supports provided in high school and those offered by colleges and universities. High schools ensure success (a high school diploma or certificate of completion), whereas colleges need only provide access.
* Have prospective students contact the disability support services office at various universities to see the types of supports provided. Universities provide academic support, but may not provide the social and emotional supports needed.
* Discuss careers that align to their specific strengths and interests. Have the student examine the college/ university that will provide the skills for that career.
* Discuss the acceptance rates of various schools and what that means.
* The leap from high school (where considerable supports have been provided) to a four-year university may be too great. Have students consider a more gradual transition to college life (for example, they may first take a class at a community college; the following year they may live at home and take a reduced load at a four-year university; the third year they may feel very comfortable and decide to live on campus in a single room; their fourth year they may consider living on campus with roommates).
* Assist students as they identify the coping skills, resources and supports for successful transitions. For example, a student who is "too truthful" may be taught to write his feelings in a personal journal. Identify one individual who can provide positive feedback and objective, on-going support (e.g., mentor, coach, university counselor).
* Encourage parents to see their new roles in the lives of their adolescent children. Parents of students with AS have been the gatekeepers and the problem-solvers for their children, it is time to pass the torch.
* There is a culture that encompasses individuals with Asperger's Syndrome. If you are counseling several students with AS, encourage them to meet as a group to discuss their fears, hopes and dreams regarding the transition to college.
* Have the student begin to identify what the role of the family will be in college. How frequently do they anticipate visits? Who will be paying the bills? What will they do during vacations?
Preparing for college is a process that can be both difficult and rewarding. While playing critical roles, adolescents, parents, and high school and college personnel are all affected by this process. Because so many individuals are required to interact to ensure the success of college admission, both professionals and students need to be prepared both personally and professionally. Difficulties with communication and socialization, combined with problems and planning in any aspect of this process may discourage a student from the college application process and perhaps risk hindering their overall success. The college admission process for both the "typical" student and the student with AS enables them to learn from challenging situations thereby converting potential roadblocks into personal strengths, new possibilities and a greater relation to lifelong success. Socialization difficulties may be the distinguishing trademark of Asperger's Syndrome. While typically developing children eagerly interact with their parents and peers, children with AS may prefer to be alone and fail to engage others.
Whereas typically developing young children seek parental comforting and interaction, children with AS may not feel the presence of this bond. This lack of emotional connection may be the result of an impairment in the limbic system, our emotional seat of the brain
In college, students must identify themselves as having a disability to receive reasonable supports that will assist them in academic performance. For individuals with Asperger's Syndrome, the academic support such as increased time for test-taking and note- taking may be useful, but other support and services, especially those within the social/relationship domain, may not be addressed.
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DR. JANET E. GRAETZ is an assistant professor of special education at Oakland University (MI) in the School of Education and Human Services. She has published several studies and book chapters on interventions for elementary and secondary students with Autism Spectrum Disorders. Her research interests include adolescents and young adults with Asperger's Syndrome.
KIM SPAMPINATO is a licensed professional counselor at the Generations Counseling Center, LLC, in Rochester, Ml and the clinical counselor of the School of Education and Human Services Counseling Center at Oakland University (MI). She specializes in working with parents and young persons diagnosed with Autism Spectrum Disorders.
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