Abstract
In this study, adults with Asperger syndrome (AS) and caregivers of children with AS provided firsthand accounts of school-related challenges and influential instructional practices. A total of 94 participants (59 parents, 27 adults with AS, and 8 unspecified) completed an online survey containing open-ended questions about their (or their children’s) school-related experiences. Participants identified specific areas of need (e.g., bullying, misunderstood intentions) related to understanding children with AS. In addition, participants described teacher qualities and instructional practices (e.g., strategies for communicating that the child is an asset, methods of structuring the environment for success) that had a positive impact on their (or their children’s) school experiences. Implications for teacher training and school-based interventions are highlighted.
Asperger syndrome (AS) is characterized by a significant impairment in social interaction accompanied by restricted, repetitive, and stereotyped behaviors or interests (Klin & Volkmar, 2003). The prevalence of AS is estimated to range from 0.03 to 6 per 1,000 children, although the prevalence rates may be affected by diagnostic criteria as well as assessment methodology (Mattila et al., 2007). According to the Diagnostic and Statistical Manual of Mental Disorders (4th ed.; American Psychiatric Association, 2000) criteria, to receive a diagnosis of AS, there must be no evidence of clinically significant delays in either language or cognitive development (Eisenmajer et al., 1996). Although their formal language skills (i.e., phonology, syntax, semantics) may be well developed, individuals with AS frequently have difficulties with social or pragmatic uses of language (Landa, 2000). These difficulties in communication and social interaction are likely to affect the quality of life of individuals with AS (Brewin, Renwick, & Schormans, 2008). One area in which this impact is particularly important is in the schools. The difficulties associated with AS may influence a child’s experience in the schools in many contexts, including peer relationships, learning, and interactions with teachers or staff.
Humphrey and Lewis (2008) argued that individuals with AS “face a number of barriers that may prevent them from making the most of their education” (p. 24). The overall academic achievement of many children with AS is average or above average, but they often display an uneven pattern of performance with distinct strengths and weaknesses (Griswold, Barnhill, Myles, Hagiwara, & Simpson, 2002). However, the fact that a child is performing well academically may mask other important areas of impairment. Many of the core characteristics and associated features of AS are poorly matched to typical school environments (Kunce, 2003). For instance, traditional classroom environments may place a heavy emphasis on group learning activities that require the very kinds of social interaction that are the most challenging for individuals with AS. For the most part, the deficits associated with AS are not readily apparent to many observers, thus making the disability “invisible” to the teachers and school personnel who are counted on to provide support (Brewin et al., 2008; Carrington & Graham, 2001; Portway & Johnson, 2005).
Even though the characteristics of AS may cause impairment in important areas of functioning, children with AS are often placed in general education classrooms with teachers who are likely to have relatively little training or understanding of AS (Church, Alisanski, & Amanullah, 2000; Helps, Newsom-Davis, & Callias, 1999). Although teachers may be receptive to having a child with AS in their classes, there is a clear need for greater training for teachers and school administrators (Brewin et al., 2008; Helps et al., 1999; McGregor & Campbell, 2001). A critical piece of this training should be on understanding the complex challenges faced by children with AS in the schools. There are several excellent resources for understanding AS (Attwood, 2007; Prior, 2003) but far fewer pertaining specifically to creating supportive school environments or to the implications for teacher training (Brewin et al., 2008).
Research on interventions for autism spectrum disorders is extensive and growing. The bulk of this research focuses on comparative experimental evaluations of comprehensive programs and interventions targeting a specific skill or area of development (Humphrey & Parkinson, 2006). However, there is also unique value in “insider accounts” of the experiences of individuals with AS and their families (Billington, 2006; Chamak, Bonniau, Jaunay, & Cohen, 2008; Muller, Schuler, & Yates, 2008). Firsthand accounts provide a compelling lens through which to examine educational issues and begin to better understand how students with AS perceive their school experiences.
The purpose of the present study was to examine school-related challenges and instructional practices through the unique perspectives of individuals with AS and their caregivers. Qualitative methods allow us to give a voice to a population that is often missed or misunderstood in our schools. Although researchers in several previous qualitative studies have provided compelling data on the experiences of individuals with AS (Billington, 2006; Brewin et al., 2008; Carrington & Graham, 2001; Jennes-Coussens, Magill-Evans, & Koning, 2006), the present study adds to this body of work in several ways. First, we obtained data from a more extensive sample that includes adults who can speak of their past experiences across levels of development. Although there are many similarities across developmental stages, there also are substantive differences across time in the prominence and manifestation of the characteristics of AS (Portway & Johnson, 2003). For instance, Church and colleagues (2000) found that, although peer relationships were a consistent source of difficulty across development, other issues (e.g., sadness, anxiety, and rejection) only became salient at later stages of development.
Second, we sought qualitative information on what worked well, and not just the challenges associated with AS. Focusing on a strengths-based approach may have a positive impact on many areas of a child’s life (Winter-Messiers et al., 2007). Finally, we used a method of data collection (i.e., online open-ended surveys) that may be particularly well suited to the population of individuals with AS. Online communication, by its very nature, may allow unique insights into the perspectives of those with AS by providing a medium for communication that removes many of the barriers normally present in face-to-face interactions (Mitchell, 2008). In this study, individuals with AS and their parents were given a forum to share their thoughts about relationships with teachers, peers, and their own social and academic outcomes. These “insider” accounts can be used to inform educational practices by helping teachers and other school personnel understand the challenges and the impact that they can have on the lives of these students (Billington, 2006; Carrington & Graham, 2001; Humphrey & Lewis, 2008).
Method
Procedure
We recruited participants by posting a message on two websites: (a) Aspergers Syndrome Education Network (www.aspennj.org)—a site providing education, support, and advocacy for parents of children with AS—and (b) Wrong Planet (www.wrongplanet.net)—an online resource and community for individuals with AS and autism. We chose these sources because they specifically targeted the two desired categories of participants: caregivers of children with AS and adults with AS. These sites also were desirable because they regularly post research opportunities for their visitors. On each site, we posted a recruitment message that invited parents/caregivers of children ages 6 to 18 years old who have been identified as having AS and adults (>18) who have been diagnosed with AS. Because we recruited participants entirely from online sources, we were not able to assess whether respondents (or their children) actually had received a clinical diagnosis of AS.
Participants
A total of 94 participants completed the online survey about their school-related experiences and AS. Approximately 68% of participants in the sample reported being the parent of a child with AS (6 male, 49 female, and 4 unspecified). In all, 80% of the children described by these parents were male. There were 27 respondents (4 male, 19 female, and 4 unspecified) who self-identified with AS, with 1 identifying as both a parent of children with AS and an adult with AS. A total of 8 respondents did not specify whether they were a parent or an individual with AS. Because responses to demographic questions were not required, a notable portion of participants did not provide complete information for many of the demographic questions. The proportion of missing responses varied by question. Therefore, the statistics reported below pertain only to the participants who responded to a given question. The average age of participants was 38.37 years (SD = 10.26, n = 78). Individuals who self-identified with AS were younger (M = 29.00, SD = 11.25) than parents of children with AS (M = 42.29, SD = 6.74). Of the respondents who specified race or ethnicity (n = 80), the majority self-identified as White/Caucasian (88%), with an equal percentage of American Indian, Asian, Black/African American, Latino/Hispanic, and Hawaiian/Pacific islander comprising the remainder of the sample. Individuals from 23 different states participated, with the largest percentage coming from the Middle Atlantic (38%) and Pacific regions (20%) of the United States. Pennsylvania (26%) and California (16%) were the most frequently represented individual states.
Measures
Participants completed an online survey consisting of four open-ended questions about their (or their children’s) experiences in school. The questions were as follows:
Think of your/your child’s school experiences up until this point. What would you say has been the most significant challenge related to AS? In other words, in what ways have the characteristics of AS affected your/your child’s experiences in school?
Think about discussing your/your child’s school experiences with an audience of teachers or school personnel. What are some things that you wish they understood better about AS?
Teachers have the potential to make a lasting difference in children’s lives. Have you or your child had a teacher (or other school personnel) who has had a particularly positive impact on your/your child’s school experience? Please describe what it was about this teacher or person that made such a difference.
Think of your/your child’s experiences in the classroom. Please give an example of something that was very beneficial to his or her school experience (e.g., learning, peer relations, etc.). In other words, describe something that you or the teacher tried that worked particularly well.
Analysis
To analyze the data, we conducted a thematic analysis using an inductive method of identifying themes (Braun & Clarke, 2006). In this method, themes were closely connected to the raw data; no specific theoretical framework was used to select salient themes. Four researchers independently read all of the individual responses for a given question and noted potential ideas reflected in the responses. These ideas were compared and discussed as a group. Then each researcher independently generated potential themes, which were subsequently discussed and modified through consensus. Then, two of the researchers assigned each individual response (or partial response) to one of these themes. After individual responses were allocated to themes, we reevaluated how well each of the stated themes reflected the individual responses and modified individual themes accordingly.
Results
We constructed the questions above to evoke responses that reflect positive and negative experiences in the schools. Specifically, Questions 1 and 2 pertain to challenges and areas of need, whereas Questions 3 and 4 focus on characteristics and behaviors that had a positive impact on individuals with AS and their families. Although responses for each question above were analyzed separately, there was considerable overlap among the themes generated. For instance, teacher characteristics were often-mentioned responses to Question 4, which was intended to identify effective strategies or practices. Therefore, we integrated themes generated from Questions 1 and 2 into a single category reflecting areas of need. Themes from Questions 3 and 4 generally fell into one of two categories reflecting teacher qualities or practices that made a positive impact. Table 1 presents an overview of the major themes in each of these categories along with the percentage of responses that related to each theme.
Overview of Themes Identified by Participants
Note: AS = Asperger syndrome. Numbers in parentheses indicate the percentage of respondents whose answers reflected each theme. Values were calculated separately for the areas of need (Questions 1 and 2), and qualities and practices (Questions 3 and 4) categories. Because a single response may reflect several themes, percentages may not add up to 100%.
Areas of Need
When asked to describe the challenges and areas of need associated with AS in the schools (i.e., Questions 1 and 2), respondents often wrote at length about their experiences. As a whole, their responses reflected a desire for greater understanding of AS among teachers and school personnel. Many respondents wrote eloquently about the need to look beyond the problem behaviors to understand the inner experience of the individual child and the strengths he or she brings to the classroom. Below are major themes and illustrative quotes reflecting what respondents wished that teachers and school personnel knew. Following each quote is a notation indicating the question (e.g., Q2 = Question 2), whether the participant was an adult with AS or a parent of a child with AS, and the respondent number (e.g., R45 = Respondent No. 45).
Theme 1: That AS exists
Respondents frequently stressed that there is a need for teachers and peers to understand that AS is a neurological condition that is largely outside of the child’s control. Because AS is a relatively new diagnosis, many people are not aware that it exists let alone the many subtle ways it can affect a child’s experience. As one parent noted,
It get’s [sic] really frustrating when other’s [sic] don’t see it as a problem. Because he does fine academically and is not a behavior problem, his needs don’t NEED to be addressed. But school is where children learn to socialize and be a part of society. He is missing out on a big part of the school experience. (Q2, Parent, R45)
Another respondent reflected back on the consequences of a lack of awareness:
I was not diagnosed until adulthood, even though there were indications that I probably had Aspergers. Teachers and medical professionals were just not aware of Aspergers back then. I think back to some of the meltdowns I experienced as a child and I know now that I was reacting to unexpected changes or disruptions of my daily routine. My parents and teachers would have been able to deal with me so much more effectively if they had known I had Aspergers. (Q2, Adult, R35)
Theme 2: That each child with AS is an individual
Many respondents emphasized that the AS label describes the group and that it would be counterproductive to assume that everyone with AS is alike. As one father described it,
You met another kid on the spectrum? That’s nice. Here’s another one. Not the same one. Another one. He’s also (to quote a t-shirt) not a defective dog, he’s a cat, who is happy being a cat. (Q2, Parent and Adult, R4)
However, many responses also described the importance of recognizing that individuals with AS also are similar to “neurotypical” peers in many ways. For example,
He is a CHILD [emphasis in original] first. Yes, some of his mannerisms and needs can be taxing, but he is a child and worthy of the same compassion as any other child. Do not focus on the “disability,” but rather [sic] his tremendous “abilities.” (Q2, Parent, R9) Children on the spectrum do have feelings—they may be expressed in an unusual way and the individual may have trouble regulating them in social acceptable manner, but we do have feelings. (Q2, Adult, R26)
Theme 3: That the behaviors of individuals with AS connote differences not deficits
Most of the responses explicitly or implicitly acknowledged the ways in which individuals with AS differ from their peers. However, respondents also urged others to understand that doing things differently is not necessarily an indication of impairment.
Aspergers is not a disease that must be corrected. It is a different way of thinking that must be taught—differently. (Q2, Parent, R37) Tics and stims are difficult for school personnel to understand. Sometimes we do things because it’s soothing or comforting and sometimes because they feel good. Also, just because you don’t hear the lights, doesn’t mean that we don’t. We don’t do things wrong, we do them different [sic] and that is not bad. (Q2, Parent and Adult, R4)
Theme 4: That the motives and intentions of individuals with AS can be misunderstood
In all, 39% of the respondents stressed that it is important to look beyond surface behaviors. The behaviors and characteristics of AS are only a snapshot of the whole person and do not define the person’s identity. What appears to others to be defiant, rude, or indifferent behavior may actually reflect something else.
Please understand that I do not mean to be rude. I am not ignoring you, or the other children, deliberately. I am not intentionally being insulting or inappropriate. I really do not know that my behavior is socially inadequate, and if I appear to be ignoring you, I am probably either completely unaware of your presence, or I do not realize that you require any sort of response. I need these things spelled out for me, probably repeatedly, and in a gentle manner. It is hard enough for me to figure out facial expressions and tones of voice, without having to realize that you are angry with me for something I cannot help as well. (Q2, Adult, R13) I wish they understood that my behavior wasn’t intentional. I didn’t seek attention by not speaking, eye contact was taxing to maintain . . . It was difficult to regulate my emotions sometimes. I sometimes felt like I was performing in a daily production and when I got home I could finally relax. I was very quiet and reserved in school, my anxiety was rarely visible so teachers thought I was willful and rude. (Q2, Adult, R30)
Theme 5: That individuals with AS are often socially isolated, teased, or bullied by classmates and that the teacher (the school) must set the tone for acceptance
Although being the victim of bullying and teasing is not unique to AS, 50% of the respondents described the potentially devastating impact that this behavior can have for a child with AS. Not only does behaving “differently” invite bullying but also individuals with AS frequently lack the social skills required to successfully navigate these situations.
My problems were mostly from my peers who bullied me because (in my view) of a lack on [sic] understanding on their part combined with the instinctive reaction of children to exclude or harm those who don’t fit in on a physical and/or social level. I.E. same as a person with a stutter or glasses could be bullied by peers if they were the only one in a class. (Q2, Adult, R23) I wish they understood that “it takes two” is not an appropriate approach to one-sided bullying, it ends up punishing the victim. I wish they understood that the reason I was always in trouble wasn’t that I was bad, it was that the other kids did all kinds of things outside the view of the teacher, and then provoked me into a response that was in front of the teacher, and laughed when I got in trouble. (Q2, Adult, R1)
Theme 6: That individuals with AS want to fit in but trying to do so often has a high cost
Almost 10% of the respondents described the “invisible” nature of many of the challenges associated with AS. They reported experiencing considerable stress and angst over social and academic situations that most people see as normal everyday occurrences. As a result, respondents often described the cost associated with trying to conceal their differences. Similar to participants in previous studies, they often described the experience as masquerading (Carrington & Graham, 2001).
He may seem perfectly fine in your classroom but he’s using up every bit of energy he has to appear that way to you. By the time he gets home in the afternoon, he’s absolutely exhausted. Doing 2+ hours of additional work at home can be near impossible some days. (Q2, Parent, R59) I’ve gotten very good at ignoring things that are distressing me. People don’t let you do things when you look like you are in pain; when you have to deal with the nigh-constant sensory hell that is high school this is a problem. In order to participate I had to will myself not to react. Unfortunately, that means that I appear to go from looking vaguely distressed to flat out panic fairly quickly. In actuality I may have gone through all the intermediate steps internally, but on the outside it can seem to come out of nowhere. It also doesn’t help that I often have to consciously think about my body language . . . Finally, when I am feeling very overloaded, but also very unsafe, I’ll actually start unconsciously smiling and speak in an almost cheerful tone, before going completely ballistic. I think I understand my unconscious’ logic in this—having people fussing over me only means that I have to deal with more stimulus [sic] and more social cues (people tend to get really offended if you do not react to fussing properly). When I’m overloaded, this only makes things worse; I need people to leave me ALONE [emphasis in original] until I’m able to get back under control. (Q2, Adult, R11)
Teacher Qualities That Had a Positive Impact
As a whole, respondents described teachers or other personnel who were open to differences and who were child centered as having a positive impact on the school experience. Respondents stressed the importance of teachers who were flexible in their approach and who showed genuine concern and respect for the student. Specific themes and illustrative quotes pertaining to teacher qualities follow:
Theme 1: Teachers who tolerated, accepted, or even encouraged differences or individuality rather than conformity
Participants suggested that these teachers were not threatened by differences and didn’t take things personally. Instead, they valued the ways in which they (their children) were different from other students.
When I was in school, I was just the exceptionally weird, exceptionally smart kid, so teachers pretty much guided me along and helped me by suggesting books to read, etc. I did have a teacher that had us do a journaling exercise. In one entry, I was whining about all the things that I tried to be “normal” and he told me that I should think about just not trying for once and being myself. I would feel more successful. It took me a lot of years to figure out what that meant, but I finally figured it out and I live by that. Don’t try to do what you think everyone else wants or needs you to do, just be yourself. (Q3, Parent and Adult, R4) I was considered impossibly odd during my school years and even my teachers often shared this opinion. I had one teacher who wrote in my progress report that I shouldn’t try to force myself to act like the other students . . . that I would find adulthood much more tolerant of individuality than adolescence, and as far as he was concerned, I was fine just the way I was. I never forgot him. (Q3, Adult, R35)
Along these lines, one parent emphasized how important teachers are for setting a tone for the classroom.
Don’t embarrass him in front of the other students. Chances are, he’s dealing with more than his fair share of bullying and teasing from his classmates. You, the teacher, can make a huge difference—positive or negative—in the way other students view a child with AS. As the leader of the classroom, you set the tone. Be careful not to set a tone that give the others license to bully that child with AS. (Q2, Parent, R59)
Theme 2: Teachers who overcame initial impressions or recognized that the “usual” would not work
According to 10% of the participants, these were teachers who were willing to rethink their practices; they were flexible and willing to adapt what they did in the classroom.
It is common for elementary grades to have “programs” at the end of the year for the parents. Methods that his teachers have used include: Being the curtain puller instead of a performer. Sitting in the group holding a Ukulele but not being expected to actually play it or to sing. Sitting him next to a classmate with Cerebral Palsy to hand him the needed props. (That made him feel that the classmate was the performer and not himself) . . . A very different and valuable help was to let him come in the building early and get to his classroom rather than making him line up outside. The chaos of six classrooms of kids trying to form correct lines was too difficult. He later revealed that one of his great difficulties in this was trying to figure out which line was his. Classmates that he had learned to identify by face, looked like completely different people from behind. (Q4, Parent, R37) Her most recent teacher made a point of telling our child regularly “I am not giving up.” So many of the teachers had just thrown up their hands, but this teacher was not going to give up AND SHE LET OUR CHILD KNOW IT [emphasis in original]. Every time our child stormed out of the classroom because she was mad, frustrated or not getting her way, the teacher would say “I’m not giving up.” Every time our child whined that the work was hard, the teacher would say “I’m not giving up.” Every time our child got mad at the higher expectations the teacher was placing on her, the teacher would say “I’m not giving up.” This teacher also made a point of telling our child that she was an important part of the class and that they missed her when she chose to storm out or not participate. It took about 3 and a half months and up to 4 hours in the hallway, but eventually, with persistence, our child got the message and made the choice to participate in the classroom and to take a leadership role. (Q4, Parent, R49)
Theme 3: Teachers who showed empathy, respect, and liking for the child
Participants emphasized the importance of teachers who showed genuine caring, liking, or respect for the child and who didn’t personalize the child’s behavior. They frequently noted how respect and liking are important for all children, but are especially meaningful for children with AS.
In middle school I had the same teacher for two years and he was the first teacher to respect me. He never demanded I participate, yelled, or belittled me. He let me be while encouraging my abilities. It was the first time I felt the pressure melt and I enjoyed the academics. (Q3, Adult, R30) Patience, kindness and acceptance are crucial. These kids are so often facing distain [sic] and rejection that being sincerely liked by someone—anyone—at school is the only relief they get all day. (Q3, Parent, R57)
Theme 4: Teachers who took the time to understand the individual child or AS
Participants described teachers who readily sought resources or feedback to guide their practice. These teachers made a point of learning about the child from the parents and took a problem-solving approach to finding what works.
His teacher last year was absolutely wonderful. She actually spent 2 weeks prior to school with her nephew (same age as my son) who has AS to prepare herself to acknowledge and assist with his needs from her own personal experience as well as the information I gave her about my son. It worked wonderfully. She asked questions when needed, and we worked together whenever there was an issue that needed to be addressed. (Q3, Parent, R9) Yes! His sixth grade teacher learned more about Aspergers in general and my son in particular in a three hour discussion with me after school than his three previous teachers and the special ed teacher combined had learned about it. She was a veteran teacher and had a child of her own with another disability. She didn’t feel threatened by his being different. The mistakes made by previous teachers were that they went to one extreme or the other of trying to force him to be normal or to give up on him and leave him in the corner with no expectations of improvement. This teacher was able to give him space when he needed it, but also to push him a little when he could handle it. (Q3, Parent, R37)
Several respondents mentioned that teachers who made a difference were ones who had prior experience with disability or AS. However, it is important to note that many, if not the majority, did not mention this as a characteristic of teachers who made a difference.
Specific Strategies or Practices That Had a Positive Impact
When asked to describe specific strategies or practices that worked well, participants emphasized behaviors that communicated that the child was an asset not a burden, and stressed the importance of structuring the environment in ways that encouraged success. They also highlighted specific actions that can provide social support for the students. For the most part, the strategies and practices described below would be beneficial for most children. However, as the accompanying quotes illustrate, these practices may be particularly influential for children with AS.
Theme 1: Incorporate the child’s interests in any way possible—Allowing them to lead when appropriate.
His teacher realized that my son’s “obsessive interest” revolved around sprinklers, fire alarms and fire bells. He asked my son to bring in some of his collection and made it a point to design many of his Algebra classes around these items. (Find the circumference of the fire bell . . . .) My son not only got an A in that class but for the first time, actually looked forward to going to school in the morning. It was huge for us! (Q3, Parent, R59)
Theme 2: Provide child with choice (and responsibility) rather than forcing them to conform.
I had just begun to study high school physics and was utterly bored by learning the differences between scalars and vectors and how to calculate them. To me, this was basic beyond belief and could not hold my attention. I flipped around randomly . . . and encountered optics. I immediately learned how the diagrams were constructed—they were so logical and intuitive—and began to expand my knowledge from there on in. Instead of redirecting me to the class’ current work, my physics teacher trusted that as a near-adult I would be responsible for my learning choices, and instead freely discussed optics with me, allowed me to draw diagrams on his whiteboard before class, and, when the class began to learn optics, allowed me (along with my aforementioned two friends) to teach the introductory class on the subject. In allowing me to pursue my fascination, my physics teacher ensured that my interest in his subject was maintained, encouraged me to learn more about his subject, and made me feel comfortable and well-regulated in his class. (Q4, Adult, R13) The teacher intuitively understood my child and how to teach him. She gave him work that was at his intellectual level, and let him choose what he wanted to do—all of it or some of it. This was a first grade teacher providing fourth grade materials. She was flexible and understanding and knew how to teach kids, depending on their learning styles. She didn’t sweat the behavioral issues. She just “got it.” (Q3, Parent, R52)
Theme 3: Use positive reinforcement rather than punishment.
First they used incentives and that seemed to work well. I turned things around with my son by telling him he had to earn what he wanted. If he wanted to play video games, he had to do his homework. In the past, I was punishing him by taking them away. I was punidhing [sic] both of us. (Q4, Parent, R55)
But many participants also stressed that using reinforcement strategies does not absolve students of responsibility.
He didn’t let her get away with not answering his questions. She would try to just “zone out” and not pay attention if she was asked a question she didn’t know or want to answer, but he made her be accountable. He did it in a positive way, though, he was never mean about it. (Q4, Parent, R87)
Theme 4: Provide visual prompts or guides (e.g., schedules or agenda, rules, or expectations) for handling common situations.
In the 4th grade, visual cards were used to help identify my son’s emotions . . . By taking charge of identifying how he was feeling at a given point in time, it forced him to look inward. He also, at the end of the day, provided his overall impression for the day, “today was a good day,” “today was a bad day.” This helped him link the feelings he was having at different points during the day to his overall emotional attitude. Sometimes it worked, sometimes it didn’t but visual cues seemed to be the answer for quite a while. (Q4, Parent, R58) My child is pretty much a visual learner. Teachers that would have homework assignments/explanation of the things they taught on the board has always been beneficial. Lists of what is expected in the classroom. An agenda for the entire week of what they will be learning in the classroom, any quizzes or tests, and homework assignments. (Q4, Parent, R68)
Theme 5: Make the child’s environment predictable (e.g., follow predictable, consistent routine or schedule; plan ahead; explicit instructions and goals; break down tasks, notes ahead of time; be explicit or direct in expectations).
It is the abstract [sic] like inference or reading between the lines, metaphors he is horrible at, but gets it if personally explained—may take some pondering . . . He did well with logic and inference problems when given a grid or formula to solve them. We had a written schedule that started with him brushing his teeth, down to his school subjects, snacks, music practice and ended with him going to bed. He was in control of enforcing the schedule, which he was good about following, and wasn’t at the mercy of someone else changing it or getting in the way. (Q4, Parent, R56) Early on . . . my son used a velcro board with the time and activity he would transition to next . . . it is the only thing that helped him through those early years. He had to always know ahead what was happening next. (Q4, Parent, R60)
Theme 6: Give an opportunity for the child to take a break (e.g., escape stimulation, squishy ball, ear plugs).
One thing that worked particularly well in my situation was as simple as allowing me to leave the room and take a break. I sat by the door so that I could slip out without disturbing the other students and when overstimulated, I unwound in an empty classroom. The benefits included a sharp decrease in confrontations, increased alertness, improved mood (both for myself and the teacher!) and a two letter grade increase among other things . . . The overwhelming noise level sent my anxiety level to a near-fever pitch, made it exceedingly difficult to focus, and on the rare occasions, escalated to a battle of wills that sometimes ended in principals [sic] office. All of which could be avoided by something as simple as leaving the room. (Q4, Adult, R26) Letting my son sit at his own desk instead of a group table and letting him have a “distracter” = something to hold on to (small squishy ball) during group activities to keep his mind focused on what is going on. (Q4, Parent, R73)
Theme 7: Facilitate learning by using multiple ways for them to present what they know (e.g., hands-on activities, context).
My best experience in the classroom was an alternative school format where there were activities all around. Any one of them could be a learning activity. Children were not forced to do anything, because anything we could possibly do in the room was designed to be educational. This fit well with my natural learning style, which is to learn things by doing them in context, not in the abstract stripped of all context. (Q4, Adult, R1) My son’s teacher made teaching fun. He took things that the children were interested and turned them all into teaching techniques. Like a diorama [sic]. The child picked what they wanted to do and they took such pride in the work. (Q4, Parent, R15)
Theme 8: Offer special instruction/classes related to social adjustment.
One of my peers taught me slang meanings and that would help some AS students socially if introduced to them. Perhaps a small one on one after school to help them understand what their peers say. For example, a rubber being slang for a condom as well as meaning eraser. This particular slang word caused me problems until it was explained to me along with other slang terms. (Q4, Adult, R23) Another good thing last year was the social group for girls. A lot of good topics and good practice. One student who was aware of my daughter’s diagnosis was able to socially interpret for her, without judging her. She was able to tell her when someone was teasing her, or when someone was being kind. A peer mentor of this type would be invaluable to Aspergers kids. It’s also less stigmatizing than having an adult aide, which my daughter also has. (Q4, Parent, R46)
Theme 9: Provide a sense of safety or protection from the stressors in the child’s environment.
The school my son attends is large and the cafeteria is noisy, busy and huge. He has very few friends and trying to find someone to sit with was very stressful to him. He was allowed to eat in the guidance office or with the teacher described above when he had no one to eat with in the cafeteria. It helped him to know he could eat in a quiet spot away from everyone else, especially when there was no one to sit with. (Q4, Parent, R59) She was very understanding and wrote him a letter and frequently voiced to him that if he ever needed anything or was getting frustrated with someone to come find her. She even told other teachers (years following) that she told him that he should let them know and come to her. So she had taken it upon herself to be his “safe place” and openly let others know, so that it was very known where he could be found and who would know how to help. (Q4, Parent, R44)
Theme 10: Take action to promote acceptance or understanding among the child’s peers.
Please help me to make friends. I am not very good at it, and teachers (especially in younger years) have a major influence on students. Practice inclusion, mutual respect, intolerance for teasing and bullying, and do whatever subtle encouragements you can think of to bring me out of my shell and to show other children that I can be a good person to have for a friend. (Q2, Adult, R13) His 8th grade Algebra teacher . . . was incredibly supportive of my son—he made it a point to “talk him up” to the class when he did something right. Not to the point of making the other kids resent him but to the point of making the other kids see that, “Gee, this kid is really a cool kid. You might want to get to know him better.” (Q3, Parent, R59) My son’s 4th and 5th grade teacher . . . saw how he was treated differently by the other boys in class . . . not meanly but just differently . . . and made an effort to get my son more involved with his peers and them more involved with him. He made a point of acting impressed and wowed by my son when he made his “observations.” This in turn made the other boys have more respect for my son and his abilities instead of focusing on what he couldn’t do . . . like be good at sports. (Q3, Parent, R45)
Discussion
In this study, adults with AS and parents of children with AS reflected on their positive and negative experiences in schools. The themes that emerged from our analysis are consonant with prior research in this area (Church et al., 2000; Humphrey & Lewis, 2008). For instance, in a study of young adults with AS and their parents, Portway and Johnson (2003) identified social isolation and exclusion as major challenges faced by students with AS. Like the participants in our study, their sample also highlighted the emotional strain associated with trying to “fit in.” Similarly, our results coincide closely with those of Brewin et al. (2008), which documented lack of awareness of AS and social interaction difficulties as significant areas of concern. However, the participants in our study also emphasized several important issues (e.g., qualities and practices that had a positive impact, the need to value differences) that have not been well documented in other research.
Challenges for Teachers and Schools
General education teachers are increasingly likely to encounter students with AS in their classes (Humphrey & Lewis, 2008). When presented with more students who think or act differently, it will be necessary for teachers to think or act differently. Our respondents offered compelling evidence that viewing differences in a new light and rethinking instructional practices communicates respect for the children. By focusing on the children’s strengths and building on their interests, schools can facilitate learning, relieve stress, and promote social development. The types of behaviors and practices that made a difference for our respondents will certainly be a challenge given the many demands on teachers’ time and the schools resources. However, it is important to note that many of the teacher behaviors (e.g., acceptance of differences, empathy) and instructional practices that made a difference for this sample (e.g., being flexible with assignments and homework, allocating time for breaks, providing visual prompts) did not necessarily require extensive time or resources. Similarly, some researchers have outlined strategies for building on a child’s strengths in ways that are relatively simple but powerful (Winter-Messiers et al., 2007).
Training in the Schools
To meet the needs of these children in the schools, we need well-prepared teachers who bring expertise and confidence into their practices. There is an increasing demand for training related to AS in the schools, but the nature of this training may be particularly important. In all, 17% of our respondents indicated that there is a need for teachers and other school personnel to recognize that AS exists—that it is real. However, Hinshaw (2007) suggested that more accurate knowledge or awareness of a disorder by itself may not always result in lasting changes in attitudes or behavior. Hinshaw recommends that educational interventions intended to reduce stigma should focus on individuals’ competencies and adaptive potential rather than on deficits. Our data also suggest that this training must emphasize the importance of recognizing the individuality of each child; there is no cookie-cutter approach for working with AS. Training programs must go beyond simply promoting awareness of AS and its core “symptoms.” Knowing the common characteristics of children with AS is an important first step, but our data are interpreted to suggest that training also should include an exploration of how these characteristics interact with teacher qualities and the school environment. In that regard, listening to the voices of those with AS and their caregivers can be a valuable tool in the training of teachers and other school personnel.
Resolving Tensions
There were conflicting demands in many of the responses to our questions. Our respondents suggested that effective teachers were flexible but predictable. They had high expectations but were not too harsh or critical. They set clear rules but were still child centered. They allowed for differences but didn’t ignore similarities. They provided support without creating dependency. The teachers who made a difference for the respondents in this sample seemed to balance these tensions. In many ways, what makes a teacher effective for children with AS are the same behaviors and characteristics that make a teacher effective with other children. However, the presence or absence of these characteristics may hold special significance for children with AS.
Moving beyond the influence of individual teachers, our results were interpreted to suggest that a cultural shift may be essential to responding to the needs of children with AS in schools. Many of our respondents passionately described the school environment as challenging for reasons that most people do not typically think about; social cues and social scripts that come naturally to most people are likely to be particularly difficult for students with AS. Therefore, problems associated with AS may not show up in obvious ways or until they are very serious. Schools, partly out of resource demands, may respond more readily to students whose problems are more visible. To more effectively meet the needs of children with AS, and other children for that matter, schools need to think proactively about the role they can play in creating an environment that builds on strengths and values differences rather than simply reacting to problems as they arise.
Limitations and Future Directions
One major limitation of the current study is that we had no way of verifying that participants had received a formal diagnosis of AS. Although we did include having a formal diagnosis as an inclusion criteria in the consent form, it is possible that some of our participants or their children had not actually been diagnosed with AS. Thus, if the experiences of those who have been diagnosed are characteristically different than those who simply claim to have been diagnosed, our results may not generalize well to the population of students with AS. However, as stated above, many of the themes that emerged in our study are consistent with those of other researchers in this area. At the very least, our results can be interpreted to provide insights into how schools can respond to children who show characteristics of AS, whether diagnosed or not. In addition, because this was an online survey, participants may differ in important ways from the broader population of individuals with AS and their parents (e.g., greater involvement in advocacy efforts, socioeconomic status, length of time since diagnosis). Finally, these are the perceptions of individuals and parents; we are missing the perceptions of teachers. There is a need to look at teacher perceptions of students with AS and the impact of these perceptions on the classroom environment. Specifically, future researchers should investigate the AS-related experiences of teachers and other school personnel to explore how well they coincide with those of the individuals with AS and their parents.
In sum, there was a broad consensus among our respondents that teachers can make a significant difference in the lives of children with AS. Although teachers may not be immediately aware of their influence, many of our respondents indicated that the actions of just one or two individuals made a lasting impact on the child’s future. Our results provide some insight into the diverse ways in which school personnel can make a difference for students with AS.
Footnotes
Acknowledgements
Special thanks to Jeffrey Rudski for his feedback on the questions used to prompt participants in this study.
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) declared the following financial support for the research, authorship, and/or publication of this article: This research was partially supported by a research grant from Muhlenberg College.