By Hannah Gould, M.Ed.
Children who experience social success are those who are able to accurately assess a situation, recognize what is expected and appropriate, and act in a way that “goes with the flow” of what is going on. Some children seem to be able to do this almost magically. As social dynamics shift subtly from one situation to the next, these children adjust and thrive. For these children, social skills are learned quite naturally through experience and observation. For children with Asperger Syndrome this kind of social “learning by osmosis” does not effectively occur. Children with AS tend to miss much of the information conveyed by non-verbal social cues (body language, tone of voice, etc.). They may simply not attend to this information, and the cues that they do notice are often misinterpreted. This leads to frustratingly awkward social interactions and ineffective behavioral responses.
Effective strategies to teach social skills and address behavior are as varied and diverse as the unique individuals who make up the AS population. The intention of this article is to provide a frame of reference through which to view and respond to the challenges our children face. Several areas of difference in the typical learning profiles of children with AS make learning social skills difficult:
The patterns of behavior that result from these learning differences are familiar to anyone who knows a child with AS.
Strategies and Interventions: The good news is that children with AS are very capable of learning and developing their social skills. They can make effective progress with appropriate interventions that capitalize on their many strengths. These skills will not be learned by observation as they often are with ‘typical’ peers, so they need to be directly taught. Children with AS often have excellent verbal skills. Their strong language skills, auditory attention, and rote memory for rules and strategies can help them to access social information.
Direct verbal instruction: Skills will need to be taught directly and intentionally, just as academic curriculum is presented. Practical rules and strategies should be presented to the child in a clear, verbally explicit, logically sequenced manner. Once taught, strategies should be reviewed and practiced in a variety of settings. Parents can find ways to reinforce these skills at home using the many challenges and learning opportunities that daily life presents. Flexible teachers and specialists can take advantage of the time that may be freed up by rapid rote learning. For example, while other students are drilling and practicing spelling words, the student with AS might be studying idioms or reading and responding to social stories.
Specific skills and strategies should be taught based on the most immediate needs of the individual child. Some areas of focus might include:
Effective Consequences: While the behavior of children with AS can seem odd at best and downright unmanageable at worst, it is important to keep the perspective that inappropriate behavior is not likely to be intentionally disruptive or defiant. In fact, children with AS rely heavily on rules and clear expectations in order to feel safe. These children frequently misinterpret situations, resulting in out-of-sync and ineffective behavior. They may become easily overwhelmed or feel threatened by unfamiliar social situations or seemingly chaotic surroundings. Structure and predictability is their safety net, and unexpected glitches in their routines can send them into a tailspin.
Inappropriate behaviors offer important opportunities to help children reframe their understanding and to teach alternative responses. Once the child’s emotional state is defused enough to hear it, the situation and behavior should be processed with an adult in a calm and direct way. A more appropriate response should be presented verbally, and the child should be given the opportunity to practice this response in a safe setting (such as role-playing with a parent or counselor or with peers in a social skills group). Punishment without this type of processing is likely to add to the child’s feelings of anxiety and confusion. Punishment involving taking away preferred activities such as computer time or reading is not likely to be effective and can deprive the child of a much needed outlet for stress.
Consequences should be as consistent and predictable as possible. Set clear limits and give warnings to let the child know exactly what the consequence will be if the behavior continues—and follow through! This takes away some of the feelings of unfairness, and also helps the child develop an understanding of cause and effect. Natural consequences should be pointed out whenever possible (e.g. “When you yell at John, he does not want to give you a turn.”). Communication between home and school is crucial to address behaviors with consistency. Knowing that adults at home and at school are on the same page will also help to alleviate the child’s anxiety.
Conclusion: There are many services available to help children with AS develop their skills and become more successful. Social skill groups, pragmatic speech and language therapy, occupational therapy, and special education services may all play a role in meeting the needs of your child. Whatever approach is taken, be clear and consistent in your expectations. Patience, flexibility, and creativity combined with a realistic perspective on the needs of your child will pay off. Parenting or teaching a child with AS is hard work—but remember that our children are working hard too!
Hannah Gould works as an activity group therapist at Academy MetroWest in Natick, MA, (508) 655-9200. The Academy provides weekly social skills groups in a gym-based setting for children ages 6-14, including many with AS. Ms. Gould is also a certified teacher of students with special needs. She provides educational consultation & private tutoring services.
by Debra Cash
Note: As AANE approaches it’s tenth year anniversary, Dania has been thinking of many families who attended her first parent support group in the earliest years—the stories parents used to tell, and the very different stories she hears from parents today. Journalist Debra Cash interviewed three mothers about the progress their children have made during this decade. Below are their stories.
Jacob used to tell people he had been expelled from second grade. He could read by the time he finished kindergarten, but until fourth grade still routinely wrote his “Cs” backwards. “He’d look at the letters and know they were backwards, but it’s a different part of your brain that tells you how to do the task,” explains Jacob’s mother, Elisse Ghitelman. Jacob’s first grade teacher cared for him and tried to accommodate him; his second grade teacher didn’t have the same degree of empathy and creativity.
For a while, Elisse thought that perhaps the problem was that Jacob was an only child and that he was merely having trouble adjusting to a social situation that included peers. When he tried to injure another child in class, however, it was clear that even having an aide in the classroom would not be sufficient.
At 8, Jacob was diagnosed with Asperger’s. He went on a small dose of antidepressant to help him handle his anxiety and frustration, and his parents accepted an outside placement for him at the Manville School in Boston. Manville is a Chapter 766 school, meaning the public school district funds Jacob’s tuition and transportation. Manville’s “therapeutic milieu” approach kept Jacob in the classroom instead of isolating him from other students.
School had been “a place of failure for my son,” Elisse remembers, but over time, “he started to see that the people [at Manville] were on his side, and have enough success that he was willing to push himself some more.” Jacob, of course, had a lot of catching up to do. “If you’ve never physically written anything, it’s harder to put together a cohesive sentence on a page. If you don’t have legs, you don’t worry about how to run. When you get prosthetic legs you don’t necessarily know what to do with them.”
With the attention of the skilled teachers at Manville, Jacob made dramatic progress. He learned to write an essay using a graphic organizer, where the student “maps out” the points he wants to make, drawing circles for each main topic and denoting supporting paragraphs by drawing branches off each circle. A speech pathologist working with him over the course of three or four years helped him master “all the little steps you have to learn: how do you start a conversation, how do you switch a topic, what happens if you get off the topic, and how do you end a conversation and not just walk away.”
School achievements are relatively easy to identify and applaud. Elisse was more astonished when, in 4th grade, Jacob told her that he wanted to learn to snowboard. “He’s had a lot of OT for gross and small motor issues, but he had this idea it was what he wanted to do. I thought to myself, “If he hates it he hates it. He can do it for however long and then quit.”’ She asked friends to identify a good beginner’s snowboarding program, and found one at Cranmore, in the Mt. Washington valley in New Hampshire. It was expensive, but Elisse set up a private lesson so that Jacob could have the instructor’s undivided attention. “He had the time of his life. He did a day and a half or so with at most two kids in a lesson. He told me “I just love this, mom!”’
“Jacob’s not a natural athlete but he fell down and got up and fell down, and got better at it. I think he learned that sometimes a thing is hard but if you keep trying you’ll get better. It gave him a kind of confidence in himself that he may not have gotten otherwise.”
Now, at 13, snowboarding continues to be Jacob’s passion. He snowboards regularly during the winter and hangs out with other kids. Elisse remembers Dania Jekel explaining that hobbies like skiing and snowboarding are often well suited for children with AS, because the activity doesn’t depend on sitting around and talking.
Elisse suggests that other parents whose children have AS remember that developmental delays are just that—delays. “They’re not ready to act the way we’d like them to be,” she says. “You need to be satisfied with progress and not worry about whether your child has reached certain milestones. By age thirty, almost everyone will have the same set of skills. No one will know that your kid got them at age nine instead of at six.”
Elisse also strongly suggests that parents find other adults to teach their children difficult tasks whenever possible. “There are pieces only you work on at home as a parent—things like coming to the table for dinner, taking a shower every day—but someone else can teach him to tie his shoes, which can take hours out of your day. There are parents who make themselves crazy on top of the stress of raising their child and problems with the school and [society’s] general lack of understanding. If you pick your battles, it helps you to maintain your sanity.”
Yolanda vividly remembers the moment she fully recognized that her daughter Sarah had problems. The shy kindergartner, who always gravitated to a train set in any toy store or classroom, disappeared one day during recess. Her teacher panicked. Teachers and other students raced around the school yard and then back into the classroom, calling out Sarah’s name, but there was no reply. Finally, they found the little girl safe and sound, hiding under a table. She was playing with a doll, and had simply decided that she didn’t want to answer.
Once the initial concern was eased, Sarah’s teacher was outraged and very upset. Didn’t Sarah understand that everyone had been frightened about her? Didn’t she have any empathy? Why wouldn’t she apologize for what she had put everyone through? The school psychologist got involved but that evaluation was inconclusive. The Kolinski’s took their six year old to Children’s Hospital in Boston. The diagnosis was Asperger’s Syndrome.
In many ways, the Kolinskis were very lucky, her mother says today. Sarah started first grade with an aide, and continued to have at least one extra adult in all of her classes through her junior high years. The Kolinskis didn’t experience many of the bureaucratic obstacles other families with a child who has AS have had to deal with when their children begin to have trouble in school. But lucky doesn’t mean things were easy. By the end of fourth grade, Sarah was acting depressed. A trial of Ritalin didn’t help her concentrate: it just made her more angry and disrupted her sleep. Sarah was taken off the medication and her mom started going to support group meetings at AANE.
“In a way I was in denial. I had a hard time with the diagnosis,” Yolanda says. “My husband read about Asperger’s Syndrome, but I’d start crying and I just couldn’t.” But by 4th grade, it was time for Sarah to be reevaluated. After Dr. Daniel Rosenn confirmed the AS diagnosis, “I started reading,” says Yolanda. “I still feel, guilty, that if I had been educated [earlier] I could have helped her a lot more, could have sat down with a teacher and told her what works for Sarah and what doesn’t. But at first, I was so concerned with protecting Sarah that I didn’t mention her diagnosis to anybody. She had an aide, but the school only had her IEP, not her plan from Children’s. We should have insisted on including those records in her file when they were planning services.”
Today, with appropriate aides in the classroom, Sarah is a 14 year old who wouldn’t think of skipping the half day when her school day is delayed because of snow. Her teachers are impressed that she never, ever misses a day of handing in her homework! She is close to her ten year old brother, who, Yolanda says, has taught his parents a lot about how to be patient with his big sister.
Most amazing to her mom and dad, Sarah has a few friends. She is still quite shy, but with a little nudging from her parents, occasionally enjoys going to the movies with her brother or a friend. She likes the daughter of her aide, a girl close to her own age, and the three of them sometimes go out together.
Sarah spends hours on the computer communicating with her best friend, a girl she met as a toddler, and who goes to a different school. Instant messaging is easier for Sarah than face-to-face meetings, as it is for many teens with AS.
“We feel every year that Sarah makes a leap,” says her mom. “When they are little you ask how is she going to survive? And now we are talking about college and she wants to go. I think she’s on the right track.”
As a young child, Daniel knew everything about garden hoses and sprinkler systems. He knew which neighbors had “back-and-forth” sprinklers for their lawns, and which used the type that went “round-and-round.” Looking back, his mother recalls he had all the signs of Asperger’s Syndrome: a singsong intonation to his voice, problems connecting with other children, talking only about what he wanted to talk about. He knew how to run the family’s phone answering machine, but not how to pretend to be a fireman or a policeman. Daniel knew how to do real things, but he didn’t know how to play.
At six, he fell ill with strep throat and then, mysteriously, developed motor tics. Daniel’s parents took him to Washington, D.C. where the National Institutes of Health were conducting a research project known as PANDAS: Pediatric Autoimmune Neuropsychological Disorder Associated with Strep. A keen neuropsychologist suggested that Daniel might have Asperger’s and at age 8, he received a formal diagnosis.
At the time, Daniel was enrolled in a private Jewish day school. Half of the day was spent in Jewish subjects and Hebrew, the rest was devoted to secular topics including math, reading and history. “He had a teacher who thought I should put him in a public school where he would have [special education] services, but he’s really obsessed with Jewish religious stuff, so I couldn’t see taking him out of the school,” Jane remembers.
The school had never worked with an inclusion aide, and it was not clear if an aide would enable Daniel to stay at the school. In addition, Daniel’s parents would have to find an aide and pay the aide’s salary. After a great deal of discussion, and with the full support of the school’s administration, they decided to give this approach a try.
Daniel was lucky. For his first aide, Jane found Chaya, a lovely young graduate student who was majoring in special education. Chaya not only loved Daniel but was also “very politically astute.” Although Daniel’s teacher for that year initially resisted having another adult in the classroom, she found over time however that the aide benefited the entire class from having an extra helper available. The aide freed up the teacher to focus on the rest of the class when Daniel was having a hard time; when Daniel did not need her immediate help, Chaya was also able to serve as an extra helper for his classmates.
Today Daniel is 15 and in tenth grade. His current aide, Jonathan, has been with him for four years and now helps Daniel about ten hours a week. Jonathan, who is in his 20’s, is old enough to be mature but young enough to be “cool and fun.” Jonathan has even taught Daniel socially appropriate ways to challenge his natural teen rebelliousness. Just the other day Jane suggested that he eat more neatly at the table and Daniel’s response was “Oh, I’ll consider that request.”
When Daniel moved to a private Jewish high school, his mom met with the teachers the spring before he started, explaining Daniel’s needs and how to work with an aide in the classroom. She spoke to the teachers and administrators again the week before he started school, and again a couple of weeks into the first semester, so that she could answer any questions they might have and strategize around what was happening in the classroom. Teachers very much appreciated the AANE literature and newspaper articles Jane shared with them.
“Daniel is a lovable kid, sweet and polite, and they could see his struggles,” Jane explains. “He used to get so upset about little changes in his routine. If class was supposed to end at noon and it ended at 12:03 he got hysterical. That doesn’t happen anymore.
“We still have more progress to make,” Jane says, but she and Daniel have certainly come a long way. “I do remember feeling very overwhelmed when Daniel was younger. He had so many different issues that I didn’t know whether to start with OT, a social skills group, or a behaviorist. Dania and AANE have been an amazing resource for me. Since Daniel was in a private school, I didn’t have the guidance of a special education department, and Dania helped me set priorities. She gave me terrific guidance and advice. The other parents in Dania’s support group was really great too—it was really reassuring to talk with parents who were struggling with similar issues. I was also fortunate to have some great personal friends who supported me through those years.
“Now that Daniel is older, I see how much progress he has made, how much he has learned and matured. Now we can concentrate on refining his social skills. I no longer feel so overwhelmed, but whenever I have a major decision to make, I call AANE, confident that Dania will give me great suggestions and guidance.
“I remember thinking: this is my most important job in my life, to bring up my child to be as good a person as he can be, a person that other people like to be around, so he can make his way in life. It was my mission and if I didn’t do it, no one else was going to do it.”
By Rick Chefitz
My name is Rick Chefitz and I have a relatively unknown learning disorder called Nonverbal Learning Disorder. I also have been given a diagnosis of Asperger's Disorder. Admitting that there is problem is the first step in a long journey of self-discovery, of becoming the best person that I can be. It has been a long road, but at least the 33-year journey has not been boring!
Nonverbal learning disorder (NLD) has affected me in many ways. It has affected me socially: I have had immense trouble fitting in with others, including trouble getting close with my family. I have had trouble getting and keeping a job; I am living with my dad as at present I cannot afford to live on my own. In short, my learning disorder has prevented me from having the life I want to have.
My problems began literally from day one as I was born prematurely. My problems were so severe that my mom took me to doctor’s to see if there was anything wrong with me. I was even tested for autism but did not meet the criteria. However it was shown that I had poor language development (thought to be due to hearing trouble), stereotypic and ritualistic behavior, difficulty relating to people, poor frustration tolerance, and hyperactivity. Of course, this was due to having NLD and my reactions to the world around me. In fifth grade I took an IQ test; I got a 111 on the verbal but only an 80 the performance. However, no one knew what it all meant. I was simply considered an “exceptional child.”
I grew up in Canton, a suburb of Boston where I spent my entire childhood. School was rough. Academically, I was the classic C student, and I needed special help just to get those grades. I had problems with reading comprehension, geometry and trigonometry, and Spanish. I hated school. Most of the time I simply stared into space.
I also had problems with the other kids. Though I made a few friends, who also had special needs, I did not have the social life I wanted. I did not really date and felt cut off from what “everyone else” was doing. All I wanted was a normal social life and it seemed like it would not happen.
I went to college at the University of Hartford determined to get a “fresh start.” After all, hardly anyone would know me from my past. Any problems I had when I was little were history —I thought! Besides, both my brother and sister, who were not exactly “Mr. and Ms. Popular” in high-school, found their places in college and did extremely well academically, socially, and in extra-curricular activities. I wanted to follow in their footsteps and become a major success story!
The “fresh start” did not happen. I was still different from everyone else. I was picked on mercilessly by the other kids, even being called Rain Man. Again I made a few friends, but was shunned by the majority. And again I did not date at all. Academically I was a well-below-average student. I majored in political science, but I zoned out in most of my classes. As a result I did not learn much in college beyond the “bumper-sticker” level of sophistication. I transferred to the University of Massachusetts at Amherst hoping for another fresh start, but the results were not dramatically different. I was picked on a lot less but I still did not have many friends (though the friends I did make were good ones). I still struggled academically just getting by, needing five years overall to get my degree. I actually tried much harder then most of the others—I just was unable to show it.
But my problems really began after college, when I tried to earn a living. I moved back to the Boston area—though this time I actually lived in the city. I have had more jobs than just about everyone else, it seems. The longest I have lasted at one job is just over a year and a half; my average length of employment in a job is a whopping six months. I got fired from many temp jobs—jobs I thought were beneath me because I have college degree. I flunked out of jobs such as political campaign work, sales, customer service, and various clerical jobs (I could not keep up with the paperwork). My biggest job success has been in accounts payable, but even there I was isolated from the other people and occasionally screwed things up, like the check runs. I was having these problems even when the there was a real labor shortage; when the economy tanked, I was in real trouble.
Socially, I had a very slow start. I did not make my first new friend in Boston until after being there for over a year. I kept moving from apartment to apartment every two years—and the places I lived in often got worse. I was not making the money I needed to really have a life here. As a result, I was able to do only the minimum socially.
I could not understand what was wrong. There was no question I was in a very competitive area. Even if I did not have NLD, I would have had a lot of trouble as it is simply hard to meet people here. As for work, it is also very hard as Boston in general is very fast-paced and work obsessed—and I could not make the grade. I saw Boston as the reason for my problem.
But Boston was only part of the problem. After I suspected I might indeed have a learning disability, I underwent a whole battery of tests and learned that I have always had NLD (officially categorized as a cognitive disorder with visual-spatial processing deficits). I was also officially given the diagnosis of Asperger's as it is the DSM-IV, the "Bible" of mental disorders. The mystery had been solved! I now realized I had been missing all those nonverbal social signals all those years: I was trying to get by on just words which carry less then 15% of the message. Therefore I was making social decisions on a daily basis on less then 15% of the available information! I also realized I did not do well in school because of my poor visual memory and inability to “think in pictures.” Most people with AS are good at thinking visually, but I am not. That is the biggest difference between AS and NLD and is why I fit the NLD label. However I have the same social (to a lesser extent), vocational, and executive functioning issues as most others with AS.
Things are slowly getting better for me. I am getting better at managing my disorder and coming up with compensatory strategies. I have made some friends. I have also been involved with AANE, going to some of the social events as well as joining a discussion group. I am also involved with an NLD e-mail list. I was just on the adult panel at a conference in San Francisco run by the Nonverbal Learning Disorders Association (NLDA), and that was an incredible experience.
I have also done well on the job. I worked for close to a year at a local hospital, filing medical records, and improving my time management and work habits. After years of frustration with vocational rehab, I started seeing a new career counselor who specializes in people with disabilities. Rather than trying to fit clients into “the system,” my counselor believes it is the clients’ needs that are paramount. I realize now that I am a good match for the accounting and finance field. It fits my ability with numbers and ability to do detail-oriented work. It also fits with my introverted personality as social skills are not as important in this field (though even there they can be helpful).
The journey is not over. It has just begun. I want achieve a rebirth or a Renaissance. I still believe that success is possible, but it has to be on my own terms. All my life I had tried to be like “everyone else.” I have given up on that “dream,” but now I have a new dream: to accept myself as I am, and live the best life that I can live.
Q.: My child currently has an Individualized Education Program (IEP), but is not making adequate progress socially or emotionally. The school district refuses to provide additional supports and services, because in their view my child is doing satisfactorily academically. How can I advocate to get services that address my child’s social and emotional learning needs? What can I do to ensure that the Team puts these services into the IEP?
Answer: Unfortunately, this is a common problem. All too often, school districts fail adequately to address the complex social, emotional, behavioral, and pragmatic language learning needs that result from Asperger’s Syndrome. This is especially true if the student is passing from grade to grade. However, the special education laws provide clear and strong protections for these students.
The first thing that parents and advocates need to keep in mind is the law’s requirement that every IEP address the student’s unique needs. See 34 C.F.R. §§300.1, 300.26, 300.347. Federal law makes clear that an IEP must address not only the student’s needs “to enable the child to be involved in and progress in the general curriculum,” but also the “other educational needs that result from the child’s disability.” See 34 C.F.R. §300.347(a)(2). Thus, the IEP must address “all of a child’s special education and related services needs, whether they are academic, physical, emotional or social.” Arlington Public Schools, 8 MSER 187, 195 (BSEA 2002)(citing Lenn v. Portland Sch. Comm., 998 F.2d 1083 (1st Cir. 1993), and 34 C.F.R. §300.300(a)(3)(i))(emphasis in original). Federal law states, in addition, that the services provided under an IEP should prepare the student for employment and independent living. See 34 C.F.R. §300.1(a). Moreover, the law explicitly recognizes that a child with a disability may be entitled to services even if that child is advancing from grade to grade. See 34 CFR 300.121(e)(1).
Under Massachusetts law, in order for a student to “progress effectively in the general education program,” he or she must show “documented growth in the acquisition of knowledge and skills, including social/emotional development,” consistent with the student’s chronological age, developmental expectations, and individual educational potential. 603 CMR 28.02(18)(emphasis added). For example, a student with Asperger’s Syndrome who exhibits significant delays in his or her social skills and language pragmatics (social isolation, communication difficulties, lack of awareness of social conventions and codes of conduct, etc.) can and should receive necessary services and accommodations to address these needs, even if the student’s academic progress is on par with age expectations. A student can also receive services to ensure that he or she is able to generalize behavioral and social skills to various settings. See, e.g., Northbridge Public Schools, 9 MSER 96, 108 (BSEA 2003)(discussed below); Medford Public Schools, 8 MSER 329, 349 (BSEA 2002). Often a child’s emotional development may be overlooked, or the parents may be told that this issue is not the “school’s problem,” because academically the student is progressing at or above grade level. Parents need to make clear that the school is a crucial partner at each stage, up through and including high school (or, in appropriate cases, to age 22), in developing the social, communication and coping skills necessary for the student to live and work independently.
When advocating for services and accommodations to address social and behavioral needs, parents and advocates should utilize the section of the IEP entitled “Present Levels of Educational Performance; B: Other Educational Needs.” (This is normally on page 3 or 4 of the IEP.) It is very important to check off all of the specific areas of need resulting from the student’s Asperger’s Syndrome. Depending on the child, these may include “adaptive physical education,” “extra curriculum activities,” “social/emotional needs,” “communication” (all students),” “behavior,” and/or “nonacademic activities.” This page also includes a box for “other,” where needs such as occupational therapy/sensory integration can be specified. If the IEP specifies that the student’s learning needs include social and emotional areas, then the IEP must provide goals, services, and supports to meet each of those needs. 34 C.F.R. §300.347(a). Parents and advocates should make sure that any specialized instruction or service that the student will require is reflected in the section of the IEP entitled “Service Delivery.” (This section, often referred to as the “service delivery grid,” is normally on page 8 of the IEP.)
Recent decisions by the Massachusetts Bureau of Special Education Appeals (BSEA) illustrate the strong protections available to address all of a student’s learning needs resulting from Asperger’s Syndrome. One case involved a 12-year-old student with Asperger’s Syndrome and Attention Deficit Hyperactivity Disorder (ADHD) who displayed significant impairments in pragmatic, social, adaptive, and organizational skills, despite superior cognitive functioning. The BSEA held that the school district’s proposed IEP for the student was inappropriate because, “despite the professional awareness that Asperger’s Syndrome is, fundamentally, a disorder of pragmatics, no specific services tailored to this area of need were proposed in the [student’s] IEP.” The hearing officer ruled that the IEP was inappropriate because it failed to include “services addressing the most critical areas of need as identified by [the student’s] parents, teachers and evaluators: social and language pragmatics.” Wachusett Regional School District, 103 LRP 35897, BSEA 03-3728, 9 MSER 205, 209 (2003)(emphasis added).
Another recent case involved a nine-year-old with Asperger’s Syndrome, ADHD, and bipolar disorder. Despite the student’s adequate academic progress, his behavioral and social learning needs resulting from his disability significantly impaired his functioning at school, at home, and in the community. The hearing officer found that the student needed more intensive direct instruction and practice in social and behavioral skills than he was receiving during the school day. She observed that, “unless the Student learns to generalize social and behavior skills, it will be very difficult for him to become more independent and to remain in the mainstream as he gets older, and falls further behind his peers.” Ultimately, the hearing officer ruled that the student was entitled to additional social/behavioral skills instruction and practice in both an extended day (after-school) and extended school year (summer) program. The hearing officer also required the district to provide the student with compensatory services to make up for its violation of his rights over the preceding two years. Northbridge Public Schools, 103 LRP 21936, 9 MSER 96, 109 (BSEA, May 20, 2003).
Another important issue for parents to remember is that the law requires school districts to ensure that students with disabilities participate in nonacademic and extracurricular services and activities to the maximum extent appropriate to the needs of the student. Thus, as appropriate and based on the needs of the individual student, the IEP should also address any services or accommodations necessary for a student with Asperger’s to participate in activities such as athletics, recreational activities, special interest groups or clubs sponsored by the school district, and vocational opportunities and training. See 20 USCS § 1414(d)(1)(A)(iii); 34 CFR §§300.306, 300.553.
In summary, the law clearly requires school districts to meet the unique learning needs of students with Asperger’s Syndrome and to ensure that these students are prepared to succeed in jobs and the community. Parents and advocates can use these legal tools to make sure that the school district addresses all areas of a student’s educational need (including academic, social, emotional, and behavioral) that result from Asperger’s Syndrome. These provisions of the law are critical to help ensure that students with Asperger’s Syndrome receive equal educational opportunities. (Don’t miss 5/2/05 Q&A at AANE! See more about MAC & their work at: www.massadvocates.org.)
by Steph Geheran
This article is the outline of a talk Stephanie Geheran prepared and delivered at a meeting of the Pathways Parent-Faculty Program at Brookline High School. Their mission is to educate, inform, support, and help students, parents, and faculty to prepare for and make smoother transitions from the K-8 schools to the high school.
Steph also addressed our wider community at the 2004 Autism Awareness Day last April.
My name is Steph. My “diagnosis” is Asperger Syndrome. I am 19, and a graduated last spring from Wellesley High School. I am currently working part time while attending classes at Mass Bay Community College.
My aim today is to address the struggles & challenges a student with a neuro-difference may encounter, and ways in which they may be transformed into successes. I can only speak and provide advice/guidelines from my own personal perspective. Please bear in mind there is an extensive variety of neuro-differences and experiences out there, and different methods prove effective for different people. So these are only very loose, general suggestions and concerns that you will hopefully find enlightening or helpful.
High School can have a vast and overwhelming atmosphere; there are few places a student can evade human contact, other than a bathroom stall!
“Homebase,” or a safe, isolated space which is accessible for escape at all times, is essential, and should be equipped with a source of calming stimulation such as music, food or candy, and perhaps something akin to “stress balls” if the student has tactile needs.
Certain areas of school/times of day may be particularly overwhelming and anxiety-producing. For example:
The most important and helpful attributes of teachers, administrators, and special educators are open-mindedness, compassion and approachability. A non-threatening authority figure will be much more valuable than a looming disciplinarian. Everyone should be prepared to learn as well as teach.
All staff, every teacher, should be informed of the student’s differences by a parent or special educator; they should be conscious of specific proclivities and, most importantly, how crucial it is to remain sensitive, patient, and understanding. This will better enable the teacher to address the student’s needs and create a comfortable learning environment.
Communication among adults is especially vital for students who have difficulty advocating for themselves.
The teachers, of course, aren’t the only ones who need to be enlightened. An effort should be made to promote awareness in the student’s peers. This should be done in a way that doesn’t “single out” any students with neuro-differences or cause them to become self-conscious. Perhaps some type of awareness program can be incorporated into a pre-existing curriculum. The head of the English Dept. at my high school approached me of her own accord to discuss inserting the extraordinarily realistic and intuitive novel The Curious Incident of the Dog in the Night-time by Mark Haddon into the English curriculum. She wanted to make sure children who identified with the protagonist would not feel singled out.
Be open-minded to unconventional learning techniques: When I wasn’t exactly thriving in my academic studies, a truly amazing special educator proposed the innovative idea of me leaving the classroom to pursue more “hands-on” learning experiences. I worked with children who had special functional needs at a therapeutic horse-back riding stable (keeping a journal for scholarly merit). I also worked with a class of children with special cognitive needs. Both were enlightening, luminous, effective, and inspiring experiences, combining my arenas of interest with legitimate academic activity.