By Debra Cash
David likes to make people laugh: he performs a very convincing imitation of Dustin Hoffman’s deadpan delivery in the classic Hollywood film “Rainman.” “Rainman,” in fact, provided David’s only image of an autistic person when, three years ago, he learned that he had “symptoms consistent with Asperger’s Syndrome.”
His diagnosis was a startling revelation. “I didn’t expect the neuropsych guy to find anything,” he remembers. “I always knew there was something different about me, but I thought he’d say ‘You’re a little off-kilter, David.’” But when David sent his parents a print-out of information about Asperger’s from the AANE website, their reaction was “Ohmigod, David, this is dead on. Your picture should be up here!”
He laughs about it now, but coming to terms with his diagnosis, and his mix of strengths and limitations, hasn’t always been a comfortable journey. He has alternated between denial of his diagnosis and the other extreme “where I started to define myself as somebody with AS, not David—‘Mr. Asperger’s.’ ”
David is 36, holds an advanced academic degree, and now considers himself “almost neurotypical” or “NT.” But that “almost” complicates both his professional and personal lives. “Sometimes I think if I just swim out to the horizon maybe the gulf is not that big—I can do it,” he says. “The horizon’s not that far. But you keep swimming and swimming and I’m further than I think I am, or further than I want to think I am. It might be easier to be more disabled, then you wouldn’t know how tantalizingly close you are! I have a friend who is a dentist, a few friends in computers, and they all have real professional jobs. I get along with people who are basically NT, and they really like me. They don’t like me because they have sympathy for me—they really like me.” It saddens him that he is not able to have the type of life his friends take for granted.
Nevertheless, David is resilient—a survivor with a remarkable ability to learn, and to grow in self-awareness. For the last few years, he has worked primarily in grants and contracts management for nonprofits. Over time, he has learned to recognize his strengths and limitations—the nature of his “learning curve”—and apply this self-knowledge to the world of work.
“Every time I have a new job,” he explains, “the biggest problem is that I always feel like I should know things. At the beginning it’s easy to ask questions, because I’m not supposed to know anything. Even if I have experience in the field, I don’t know how they do it. I learn fast, I go up the curve—but other people keep going and I plateau a lot faster.” As the job becomes more routine “it’s hard for me to ask questions because I feel like I should know the answer. My boss is so busy, I always feel like I’m wasting his or her time asking a question I might be able to figure out. My current boss likes the work I am doing, but with that comes more independence.”
Some of the problems come with being too literal. “I’ve had to learn that when people say ‘I need this now,’ it means it should be a priority—not that you have to drop everything. My boss doesn’t mean right now—it’s a euphemism.”
“I have to constantly slow myself down. It’s like a motorcycle, I want to get into 5th gear and fly down the highway. I have to stop myself, and be more disciplined, and downshift. I have to stop, reflect, and it’s grueling having to constantly hold myself back. So I’m always beat mentally when I leave work.”
Nonetheless, David knows that he is intelligent and does good work—and that he has a lot to offer to an organization if he finds the right supervisor and working environment that will give him the support he. He compares himself to a pearl hidden in an oyster. “People might have to spend a little more time with me, giving me feedback, writing down instructions, spending a little more time at the beginning. But if they are willing to take the time and pick through the oyster, in the end they’re going to find the pearl. The pearl is me, who has integrity and is a hard worker: dedicated, loyal, resilient, intelligent.”
David finds that disclosure is “easily the single biggest issue I have to deal with.” He feels he made a mistake at a number of preliminary interviews by disclosing that he has Asperger’s Syndrome before he landed the job. However for him, disclosing is going to be essential once he has been in a job for a while, and has demonstrated that he is a valuable worker. With temporary jobs, disclosure has not been a significant issue. But as his tenure in a job grows, and supervisors expect that he will no longer have many questions about how to do things, he has to disclose his diagnosis—and explain what Asperger’s is—in order to forestall a supervisor becoming impatient and irritated at continuing requests for explicit, written instructions. “It’s always the easy way out not to disclose. But ... I’ve seen that if I don’t disclose, I risk losing my job. So it’s a pretty strong incentive.”
David has developed a number of strategies for helping to organize his life. He says that AANE’s “Where Are My Socks?” course (led by Susan Shamus in spring of 2003) really helped him. “I have a really good memory and I like to rely on it,” David says. “It’s the random, disparate things that are hard for me. The program helped me crystallize that if something has steps I can write them down. But... [I end up] having 25 different answers to 25 different questions on eight different topics on a single 8 ½ x 11 piece of paper! 3 x 5 index cards may be the way to go for me.”
David owns his own home. He loves the freedom of living alone, although he reports that his parents consider him a slob. “I can cook a little bit. I keep it real simple: grill up a piece of salmon or a burger, pasta or nachos.” He has been involved in an activity club whose members go to wine-tastings, restaurants, baseball games, and the theatre. His attempts to date and find a girlfriend have been disappointing so far. “All my dates are ‘one and done.’ They go so well on the phone, but when we meet in person it just flops, every time. People say “Why are you being so negative?” I say, I’m just being realistic. I’ve been down this road a lot of times—I know where it leads. I’m trying to modify my personal behavior just like I’ve modified my work behavior. But it’s a lot harder because you go to work every day—you don’t get a date every day!”
Nonetheless, David believes that the life-long challenge of living with Asperger’s is something he is prepared to face. Each month, each year, he makes progress, and luckily he have a good support network. His parents and his therapist let him “bounce things off them.” Recently he has begun to give talks to groups of clinicians and others interested in Asperger’s Syndrome, in the hope that sharing his story will help other people who were diagnosed with Asperger’s as adults.
“I had to learn that instead of going through a brick wall, I had to take a couple of steps back and look around and ask: Can I go around the wall? Maybe there’s a rope I can grab and go over the wall…but I can’t just walk straight into the wall and think that things are going to change. I need to make some adjustments because I can’t make Asperger’s go away. I have to learn from my mistakes and be a little more creative and be more self-observant.”
Despite his struggles, David thinks that for himself, and for other adults with AS, things can only get better. “I think of myself as high on the continuum,” David says. “My advice to my Asperger’s peers would be: just try to hang in. There’s a lot of us out there. Asperger’s puts me in this category with all these other people and we all have to do our best with the cards we were dealt.
“Asperger’s is the diagnosis du jour and it’s getting a lot more influence and attention now. We’re kind of on the ground floor of something that is going to be really big. Everyone wants to do something to better the world and I kind of think of this as what I’m trying to do. I’m trying to help. If I can be a role model for people, that’s great.
“There’s no magic pill—believe me I wish there was—but as people do more research, and Asperger’s gets more into the limelight, it is going to get easier. This was the hard part. The more you learn about it—once you decide to face it head on, which is what I recommend—you can know there are people out there who have jobs, who have girlfriends. It’s quality of life. If God gives you oranges do you want to throw them at him—or make orange juice?” David laughs aloud. “I’m trying to make orange juice.”
Debra Cash reports on the arts for WBUR and was a long-time contributor to the Boston Globe. She conducted this interview with David in conjunction with editing an expanded version of AANE's guidebook for adults, "Living, Loving and Working," which will be available early in 2004. Contact or respond to David via AANE.
by Grace Peng
Summer is over. Back-to-school worries have replaced camp worries. But all too soon, January will arrive, and with it the angst over summer programming. Every year it’s the same frantic search for a program to help my son have an enjoyable summer and still learn the social communications skills he needs. Forget “preventing regression,” which is all that the school is legally responsible for. I want progression! Summer presents the perfect block of time to immerse him in learning and practicing social skills in a less stressful environment—but there is a dearth of appropriate programs available.
I’ve tried a few traditional camps for typical children. However, even with an aide, he was overwhelmed by the pace of the camp and the changes that frequently occurred. Rather than learning from social situations, my son was just trying to survive them. One year I tried a camp for children on the spectrum. It was very expensive, required a four hour drive every day, and, as it turned out, he was too high functioning for the group he had been placed in. Another year I tried to get him into Camp Youthcare, a highly recommended camp for children with Aspergers. He was one of a hundred applicants for six spots. I felt stymied.
This year I finally worked out a solution: I started a camp for children on the spectrum at our school. My husband and I had intended to donate $10,000 to charity this year—and my husband’s company matches employee contributions. So with $20,000 seed money, I approached Camp Youthcare’s director, Dr. Scott McLeod, about consulting with my school system to start up a similar camp. He was very interested.
I then approached the school. Superintendent Mickey Brandmeyer welcomed the opportunity of creating a more appropriate summer program in Lincoln. The school already had a handful of students on the spectrum (and more would be entering in the fall). In summer of 2002, these students had attended a camp run by the town’s recreation department—with mixed results.
Planning for summer 2003 began in October 2002, and involved the school, Youthcare, and the town’s recreation department. The program that evolved from this collaboration had effects that reached far beyond the summer: children are still benefiting from the program and so is the school.
The reason is the staff. In a wise move, the school administration recruited the camp’s staff from within its own special education department. This meant that all the training and experience the camp staff received would remain at the school in the fall. Before camp started and while it was in session, the staff were required to take a 36 hour training program on working with children who have ASD (Autism Spectrum Disorder). Youthcare’s Lori Hodgins conducted the training; AANE’s board president Stephen Shore was a guest speaker in one session. The staff received 3 graduate level credits for this course. My son’s new aide for fourth grade got both the training and the opportunity to work with him in the less stressful camp environment, which should make the transition into fourth grade easier for both of them.
The program ran seven weeks. The program was only four days a week, so that the staff had three-day weekends. One day each week, camp ended two hours early to allow time for planning and consultation. I worried at first on whether there would be enough time at three and a half days per week for the children to learn skills. In retrospect, I think the advantages of having staff that were happy and not burnt out far outweighed the disadvantages of a shorter program.
The site of the school camp was adjacent to the site of the town recreation department’s camp. Due in large part to the cooperative spirit of the recreation department’s director, the school camp was able to join the town camp for swimming twice a day, and for some field trips which allowed the children time to be with their grade level peers. One older child in fact, sometimes joined the town camp for activities when the school camp ended. Another child, who is a recent immigrant, had a hard time at the town camp and, at the request of the recreation department, spent a much more enjoyable two weeks at the my son’s camp.
There were eleven children in the program. More had been offered a spot but some parents declined. Some were uncomfortable about the specialized nature of the camp and wanted an integrated environment for their children. Others were afraid of the stigma attached to attended a special needs camp. With such small numbers, the children were divided into two groups: a first through second grade group and a third through fifth grade group. Each group had a full time SPED-certified lead teacher. The older group of five children also had two aides, and the younger group of six children had three aides. The chief architect and program director of the camp was a speech therapist from the school, who had past experience working with nearly all the participating children. In addition there were SPED-certified teachers who taught language and social skills to both groups. There was also an academic tutor.
The enthusiastic camp staff developed the curriculum, drawing on the intensive training they received, observations of Youthcare’s groups, the individual needs and interests of the participating children, and their own creativity. In addition to the twice daily swimming, once a week field trip, and afternoon academics, the children participated in drama, arts and crafts, group games, social skills groups, language groups, and science. Due to the small numbers, schedules could be somewhat customized to the particular child. For example my son, who has less language and more social needs than some of the other students, received social skills twice a week and language once.
The activities were geared towards addressing group and individual goals. Group goals were reviewed and posted during each activity. Students were reminded (both verbally and in writing) about the behaviors necessary to meet the goals. I thought several of the activities were very clever ways of reinforcing social understanding. For example, each child was asked to construct a paper thermometer which measured not temperature but topics that they found interesting so that at the top of the thermometer were their special interests and at the bottom the topics they did not want to talk about. Then the “interest-o-meters” were placed around the room as concrete reminders that everyone has different interests. Teachers referred to these interest-o-meters frequently. They asked the children were asked to find topics they could talk to each other about, based on their interest-o-meters. Another interesting art project was a “compliment paper chain.” Each child received a paper chain created by the other children in the group; a compliment was written on each link.
The staff was great, and willing to be flexible. One of the teachers asked my son whether he skateboarded, since he was wearing a skateboarding tee shirt. He didn’t, but he wanted to learn. The teacher offered to teach my son. He didn’t quite master skateboarding, but the lessons lead to all the kids bringing in their scooter boards and he had an opportunity to scooter around with the other children—something he doesn’t get to do at home.
The school even attempted to support parents with their difficulties in raising a child with special challenges. Three parent discussion groups lead by Dr. McLeod were offered during the summer. Unfortunately, the majority of the parents did not take advantage of these opportunities.
The program was a win-win situation for everyone. The school administration got a program that parents were happy with, and a great training venue for their staff. The teachers got a chance for professional development. The parents got an appropriate program for their children without driving miles to reach. Most importantly, the children got a place where they can learn and enjoy being children.
Not everyone has the resources to enable them to donate $10,000, nor are matching funds available for everyone. But if ten parents from the same or neighboring schools got together and contributed $2000 each, which is less than the cost of a private specialized camp (most cost upwards of $3500), you would have matched the money I contributed. The cost of the program Lincoln provided was much more than the $20,000 I gave. In fact, my donation was used primarily to pay for the Youthcare training program. But offering to donate a substantial amount of money is a very effective way to begin talking to your school system. School administrations are so bombarded with demands that I think most would welcome a serious offer from parents to be a substantial partners with them in developing the right program. If anyone has any questions or would like to discuss what I did, please feel free to contact me at 781-259-3708.
For next summer, I am hoping we can expand the camp in Lincoln to serve twenty children. One drawback of this past summer was that there were so few children that not everyone had good peer matches. Although we have yet to discuss budget and staffing, I feel confident. The administration just made a presentation of this year’s program to the School Committee. One school committee member called it a “gem of a program.” With any luck, I’ll never have summer camp angst again!
Reviewed by Steph Geheran, a senior at Wellesley H.S.
There is an achingly expansive, seemingly impassable void that imposes itself between the mentality of the neurotypical population, and that of those innately imbued with Asperger’s Syndrome. Characterized by conjecture and nourished by ignorance, the schism can only be spanned by an enlightened understanding of the latter’s anomalous mindset. Mark Haddon offers us just that in his humorous, compassionate, and luminously perceptive novel, The Curious Incident of the Dog in the Night-Time.
The reader is given a privileged position, as she or he is situated behind the sincere eyes of Christopher Boone, an intellectually gifted fifteen-year-old with an enthusiasm for mathematics and some significant neurological differences. Though he can effortlessly recite every prime number up to 7,057, the adolescent protagonist can only identify two distinct facial expressions. He is repelled by the colors yellow and brown, and by contact between foods on his plate, as well as physical contact that exceeds touching hands.
Though not partial to human company, Christopher nurtures an ardor for dogs which leads him to investigate the bizarre murder of a neighborhood poodle. With the help of his teacher and mentor Siobhan, he begins to collect and document evidence, possible motivations, and suspects related to the crime. The intrepid boy is rocketed through a bewildering trajectory of encounters, including a hostile confrontation with a police officer, who is ignorant of Christopher’s condition. Each interaction is breathtakingly believable, as Christopher inwardly laments his social qualms. The author reveals the baffling uncertainties that accompany Christopher’s attempts to process the world’s overwhelming landscape of nonverbal communication, symbols, sarcasm, and human expression. Because we readers know how Christopher sees each situation, we understand why he does what he does—even when other characters in his world are surprised by his unusual actions.
Through the convincing character’s candid introspection, we are shown how his inherent anxieties dominate his decisions, from hitting the aforementioned police officer to declining offers of tea and cookies from his amiable neighbor. More importantly, we are apprised of Christopher’s inspiring determination, and the courage he must marshal to approach the demands and fundamental challenges of everyday life. It is within the trials of being neurologically dissimilar that its requisite fortitude is revealed, and The Curious Incident… respectfully underscores that.
It is immeasurably satisfying to see a text so keenly sensitive to the apprehensions, dreams, passions, and all those inimitable qualities exclusive to the realm of Asperger’s Syndrome. To those on the neurotypical side of the gap, it provides a guiding overpass. It reminds people with AS of our capabilities, our potential, and the fact that we are not isolated in our experience.
By Stephen Rothenberg, Psy.D.
Dorms, parties, cute girls, hot guys, roommates, new friends—let’s face it, college life is, in large part, about the social scene.
Finally, you’ll be able to come and go as you please. Your parents won’t be there reminding you to study, brush your teeth, eat your vegetables, etc. And you won’t have a curfew. Moreover, college is about finding yourself and your independence.
It sounds exciting, but for most freshmen it can also be a little overwhelming. You have to get yourself to classes and exams on time, do your own laundry, pay your own bills, balance your own checkbook, find your own meals and determine your own schedule. However, it’s not just the daily routine that worries most freshmen. Although some won’t admit it, most freshmen are also worried about fitting in, being cool and making friends. For students with Asperger’s Syndrome, the desire to be part of the group and connect with others, while at the same time making the grade academically, is equally important—but often more challenging.
If you have Asperger’s, this is probably not news to you. You’ve had to work hard to learn social skills, and, guess what? It’s all paid off! You’re in college now. It’s your chance to make a fresh start. People in college are often more socially accepting than high school students. So, take a deep breath and get ready for the next challenge and the time of your life!
Most students with Asperger’s Syndrome find the college social scene to be both exciting and challenging. If unprepared for the social situations that lie ahead, students with Asperger’s may find their college social lives very unfulfilling. At first you may feel isolated and overwhelmed. You may be tempted to run into your dorm room, slam the door, and shut it all out. But there are strategies you can follow to find your path through the “blooming, buzzing confusion” of the college social scene.
Below, I describe three sets of strategies for making “Good Connections” at college. Following these strategies will help you adjust to college social life.
#1: Strategies for Living with Roommates
Many freshmen come to college never having had to share a room with anyone—never mind sharing one with a complete stranger! You and your roommate(s) may sleep at different hours, have different grooming habits, and enjoy different music and interests. Maybe you will turn out to be best friends and maybe you won’t. Either way, what really matters is respect and consideration. You are both going to have to make some compromises, and that involves open communication.
So, how does someone with Asperger’s discuss and resolve issues with his or her roommate? First, by getting off your “soapbox,” listening and really taking seriously the roommate’s concerns. (I.e., don’t lecture your roommate about your needs or the roommate’s mistakes.) And second, by learning how to express your own needs in a polite manner.
Practice active listening: Active listening is a very important skill for people with Asperger’s to learn and implement. What is active listening? Active listening involves hearing what the other person has said and then repeating it back to them to make sure you understood correctly. An example would be:
Roommate: “It bothers me when you start calling people late at night.”
You: “Sorry, I didn’t know it bothers you when I call people late at night.” Then you can add, “I’ll try to get my calls done earlier or I’ll leave the room.”
Once you and your roommate have gotten to know each other better, and it feels safe enough, you may want to mention that you have Asperger’s, and explain to your roommate what that means. Knowing about AS may help your roommate understand you a little better, so that the two of you can communicate better and get along better.
What’s important to your roommate is important, AND what’s important to you is important too. You will have to balance paying attention to both your needs and the needs of your roommate and that involves open communication. You will need to express your needs directly but politely to your roommate.
Learn to use “I Statements” to avoid putting other people on the defensive. “I Statements” work because they focus on your feelings about a situation, without placing blame. “I Statements” are made up of three parts:
An example would be:
Using “I Statements” is a polite way to express your needs. They help you keep the peace with by helping your roommate understand where you are coming from—without feeling blamed.
#2: Strategies for Developing a Social Life at College
There are many opportunities to meet friends in college. So how do you make sure that you are a part of the group?
One of the first places to connect with peers is in your dormitory. Most college living is co-ed, so you very well may share a suite or hall with members of the opposite sex. This is a learning experience in and of itself! And of course, you will also meet potential friends in your classes.
Many people with Asperger’s Syndrome honestly struggle with understanding other people’s thoughts and feelings and this can make them seem socially peculiar—even rude—in the eyes of people who do not understand their disability. That is why these tips for learning social skills, including reading body language and how to facilitate a good conversation, are important.
Don’t Isolate Yourself: Yes, it will be important to find ways to get alone time and get a break from all the college stimulation. However, it is also important that you keep yourself socially involved so that you do not become isolated and possibly depressed.
Conversation starters: One of the best ways to make friends is to show an interest in other people. Listen to them when they talk. Ask them one or two questions about themselves—and listen to the answers! Do not over-focus on what you want to say, or go off on a tirade expressing your opinions. That is not what communicating is all about. Listen without interrupting; really hear what the other person is saying. Look at them and make eye contact (without staring). Smile if they are telling a funny story. And then, when it is time respond, they will listen to you too. As a friendship grows, you'll have plenty of time to talk about what interests you.
Many people with Asperger’s Syndrome do not understand sarcasm or joking behavior. If someone says something to you that you don’t understand, observe how other people are reacting to the comment. You may want to ask the speaker, “Is that a joke?”
Learn to read body language: People with Asperger’s Syndrome have difficulty understanding body language, facial expressions, and tone of voice—things that are very important for understanding what people mean to say. Therefore, it is very important they work at learning how to read others’ non-verbal cues. For example, how do you know when it is time to close a conversation? Try to watch for signals that others may need a break. It may be time to say a friendly good-bye if the person you are talking to is:
Join a club or religious group: There are many clubs, interest groups, and religious groups on most college campus. Joining one can put you in touch with others who share like interests. This is a great way to make friends who you have a lot in common with. These groups also plan social activities and can help you feel a sense of community at school. When you meet new people at your club, remember to use the social skills we talked about earlier.
Find a “coach”: It will be invaluable to find a social “coach,” someone who you feel understands you, and who can help you process social situations as they arise. This may be someone who works at the student health services office, a teacher/professor, or another student you trust. When an upsetting or confusing situation comes up, you can go to your coach and brain storm ideas together. If you can’t find someone on campus, maybe there is a friend or family member you can email. It’s best to locate someone on campus as they will tend to know the school culture.
Privacy and Personal Space: You probably don’t like others touching your personal items without your permission. Your roommate might feel just as strongly, and be just as upset if you touch or use his/her personal items without asking. It is always a good idea to ask before using something that belongs to someone else.
The same is true with “personal space,” our private rooms and the space around our bodies. Just as we all like people to respect our personal belongings, we also like people to respect our personal space. It is a good idea to check and see if it is okay to enter someone else's personal space:
Similarly, people may feel protective of their time. Some people may be interested in a casual friendship, while others may be open to talking or meeting more often. People can become annoyed if you call them or try to get together with them more often than they feel interested in doing. If someone is not returning your calls, or accepting your invitations, or makes excuses to cut short a conversation, they may not be interested in pursuing a close friendship with you. You may need to look elsewhere for friends. If you continue to pursue this person, he or she may interpret it as harassment. A good social coach can help you read the cues and figure out how best to respond. Good relationships take time. There is no need to rush. If you are a good friend and are respectful of the privacy of others, your friendships will grow.
#3 Strategies for Handling the Party Scene: Drugs, Alcohol, and Sex
With its unstructured setting, college is a playground. Without close adult supervision, too many students adopt the party lifestyle. Drugs and alcohol are available in abundance, and a lot of students use them—but not everyone. You don’t have to—and you shouldn’t. Getting drunk or high takes away social barriers—meaning, people are drunk or high are more inclined to say and do things that they otherwise wouldn’t dare. This is of particular concern to a person with Asperger’s, who sometimes doesn’t understand social barriers to begin with. If you confuse the picture further by using drugs or alcohol, you can embarrass yourself or get yourself into some dangerous situations (drinking and driving, sexual assault, etc.)
Drug or alcohol use is not a pre-requisite for making friends. Instead, put your time and energy into developing healthy friendships with people in your dorm, in your classes, and in your clubs. Make choices and decisions to act in ways that will increase—not lessen—your own self-respect.
The Power of “No”: Assert yourself. You can claim the power to say “No” in any situation that makes you feel uncomfortable, or that you know is not good for you. If someone offers you drugs or alcohol, just say “No thanks.”
Stop and Think before you act: You may be tempted to try drugs or drinking. However, you need to be able to stop and think, “Will this be good for me? Will this help me feel good about myself? What are the risks?” Maintain your self-respect.
What if someone is pressuring you to have sex? You might feel tempted to say yes, either because you feel “turned on” (sexually excited), or you feel flattered, or you want to please the other person. However, these are not good reasons to have sex. Wait until you have a girlfriend or boyfriend who you have known for a while, and feel really comfortable with. If you both have shown by your actions that you respect and care about each other, then you can decide if you both feel ready for the intimacy and emotional issues that adult sexuality involves. This is also an excellent time to consult your social coach for advice about intimate relationships, safe sex, and birth control.
If you have the courage to do what is right for you, your true friends will respect you. Anyone who doesn’t accept your decision is not a good friend.
In conclusion, learning college social skills can be a challenge, but the rewards are endless! So get going and say, “hello” to an exciting chapter of your life.
Dr. Stephen Rothenberg is a Boston-area psychologist whose personal mission of helping people make more meaningful connections with others in their lives. He is the founder of “Good Connections,” a friendship and dating and service especially for people with Asperger’s Syndrome and learning disabilities. For more information, please call him at 888-618-6878 or visit www.socialskills.org.
by Barbara H. Rosenn, Psy.D.
Neuropsychological testing is very helpful in clarifying the appropriateness of the Asperger’s diagnosis for an individual. Testing may be done by a psychologist or psychiatrist, and by a man or a woman. In this article, for the sake of convenience, I will use the term “psychologist,” and the pronouns “she” and “her.”
How to Prepare for Testing
1. Most important is finding a testing psychologist who is familiar with Asperger’s Syndrome, and whose final test report will include specific recommendations for you to work on. (Call AANE and ask Dania to refer you to someone good.)
2. Make sure you know in advance how much the testing and the report will cost.
3. Clarify with the psychologist who is doing the testing how long the time for testing will be, and how long each testing session will be.
5. Try to be rested for the sessions. The tests themselves are not difficult, but they are more likely to reflect your true abilities and personality if you have gotten enough sleep the night before.
6. Try to be on time. You will do best if you can arrive in plenty of time, and if you know where the psychologist’s office is located. You can preview the route by driving it a few days before the day of your testing, or by or checking train or bus schedules beforehand. You may want a parent or friend to drive or ride with you if you are unsure about how to get there.
7. Be curious about the different tasks, and try all the tests, even if they are not your favorite thing to do. People with Asperger’s Syndrome often have slower processing speeds than other people, so be patient with yourself.
8. Be observant yourself about which tasks or activities are hard and which ones are easy. Your tester will be interested in feedback from you about your experience.
9. Do your best to engage with the psychologist. Try to make eye contact as best you can. Try to give complete answers, and to stay focused and on the subject.
10. Clarify with the psychologist that you would like to have him/her make recommendations in your test report about ways you can work with your weaker areas. If you have specific questions you would like the psychologist to address, let her know before you begin.
11. Let the psychologist know that you would like the test report to include the specific breakdown of the test results, like the subtest scores for the Wechsler Adult Intelligence Scale (WAIS), for example, so that other clinicians you work with can also identify your stronger and weaker areas easily.
12. Make sure that you will have a feedback session (often, with a parent or advisor present) to go over the results of the tests.
13. Sometimes, the psychologist’s participation in a meeting of treaters, school personnel, or employment supervisors can be helpful.
14. Make sure that you have a copy of the final test report to take away with you. File this report in a safe place for future reference.
What are the tests like?
Psychological testing assesses your cognitive (thinking) abilities and your emotional state. Sometimes testing also looks at your educational achievement, the information you have acquired in different areas, your abilities in areas like reading, writing and math.
The cognitive tests tell how you take in information best.
Is it through words or through visual observation?
Are you fast or slow at putting information together?
Cognitive tests also look at your "executive functioning," or how well you organize the information you take in.
Can you figure out "the big picture"?
Can you "read between the lines"?
Do you tend to collect details or put them in sequence?
A tester will be interested, too, in your learning style.
Do you listen attentively?
Can you manipulate information better when you have the information written out in front of you?
Does writing help you to remember?
Does repetition help you to learn?
Often, the cognitive abilities will be evaluated with the Wechsler Adult Intelligence Scale, which provides a Verbal and Performance IQ score, as well as Index Scores that summarize specific abilities: verbal understanding, visual perception (ability to take in information visually), attention and concentration, and speed at processing information. This set of tests is not hard to do. You’ll find you are good at some of it. Questions of general information and vocabulary, easy jigsaw puzzles and assembling blocks in patterns, listening tasks and ones that show how you organize information are part of the test. You also may be asked to draw or copy patterns, to make up stories or tell what you see in some pictures, to do a little writing , math, or reading or just have a conversation with the tester. These tests broaden the picture of who you are and your fund of information.
Other tests will help the psychologist to form an impression of your emotional state. Tests like the Rorschach Inkblot Test and other tests where you are asked to tell a story or draw a picture give some idea of how you see yourself in the world, your mood, and your emotional resources.
What you can tell the psychologist about how you are feeling will also help her to understand how you are doing emotionally. Often , a psychologist will want to interview you or a family member about your early development and your experience at home and at school , with family and classmates. Your health through the years will be an important concern, too. All this information will add to the picture of how you have become the person you are today, and will appear in the final test report.
All of the testing is done to help you know more about yourself. You can then use this information to develop strategies that will help you function better in your day to day life. When you know both your "strong suits" and your weak ones, you can learn to use your best abilities to help you deal with your difficulties—and to work toward your goals, and. It also can help other people understand your strengths and weaknesses: a parent or partner, a boss or co-worker, a therapist or job coach.
by Bob MacWilliams, © 2003
Flocks of kids cross the playground—
I stay on the corner by myself.
I love my friends, and my teachers
But sometimes I need a little help.
The lights, the noise, the disappointments—
They toss my body like a shell.
But a guiding hand, strong and gentle—
It helps me more than I can tell.
Helps me.
Some people think that I'm a problem
Because nature gave me a special style.
But take my hand and I'll reward you
With a glimpse of my rare and tender smile.
The grownups talk about priorities...
Why can't I be a priority too?
And they talk of God and morality,
But if there's a God, he loves me too.
Loves me.
The final bell, and Mom is waiting...
I like to balance on the wall.
I'm so big now, I can do it by myself,
If you're there to catch me when I fall.
I'm gonna grow strong in the sunlight.
There are a thousand things that I can do.
And if there's a God that loves all children,
I know that God loves me too.
Loves me, loves me, loves me.
by Pamela Ely Martins, M.S. CCC-SLP
“Bubble thoughts,” “hi/lo,” “topic tower,” and “topic toad”—these are just a few of the terms you are sure to hear if you spend an hour eavesdropping on one of my social skills group sessions. I work with students who have struggled with acquiring the skills of social competency, including individuals with Asperger’s Syndrome. These students may have difficulties functioning in the areas of:
When I first meet them, my students may show “penalizing behaviors,” (behaviors that may cause people to judge them unfavorably). They may have:
Usually, social language deficits are especially evident when a child is in a group of peers. These children may use a communicative style which makes them appears to be self-centered, cold, uninterested, or “robot-like.” This tends to isolate them from their peers. The goal of my specialized language group is for the student to use language appropriately and to develop more socially acceptable behavior. Students learn specific foundation skill sets for enhanced interpersonal relations, working together in a homogeneous peer group of children who are working on acquiring the same skills.
Our work together focuses on the explicit teaching of tools and techniques for improving the students’ social communication with peers and adults, as well as strategies for adapting to more complex life and social situations. For each student, I draw up an overall therapy plan that takes into consideration several areas of functional weakness, so there is a whole-person approach to skill building. I place each student in a group of individuals with similar needs. Each group has a maximum of four students, and meets once a week for an hour. Group activities target one or many skill sets. Everyone has strengths and weaknesses; I encourage my clients to acknowledge their strengths, and utilize them to compensate for their weaknesses.
Sometimes parents arrive at my door half an hour early, saying that the child insisted on being on time because “my friends will be counting on me,” or because the child can’t wait to share a recent “hi” or “low” in his or her life.
Students are excited about coming to group for many reasons. We meet in a space that feels more like a rec room than a treatment room. I also utilize technology as a means of “hooking” the participants: frequent e-mail to home, a digital camera, and video taping. I encourage practical environmental experiences which are salient to the students’ lives.
“Hi/Lo” is an ice breaker. Here’s how it works. I encourage the group members to offer statements about the best things that have occurred in their lives since last we met, and the most negative. (As the group leader, I share, too.) Memorable “highs” include winning a sailing regatta, being picked to be in the school play, and having alone time with mom or dad; “lows” were not getting to have a play date with a special friend, having too much homework, and having no one to sit with at lunch in the cafeteria. The kids look forward to this sharing. Hi/Lo is a wonderful way for students to practice turn-taking, staying on topic, and using eye contact skills in conversation. Hi/Lo also lets me know how my students are feeling, and what’s on their minds. I use that information to structure the group time to be most pertinent to the students’ needs of on that day.
Finally, I keep the tone of our work together fun. The kids learn the lingo and the process quickly. They become invested in the group and feel a sense of belonging which keeps them coming back. At our last summer session, one 2nd grade boy said, as he was bounding up the stairs to his mom, "Thanks Pamela, you ran a really great group today, I’m glad I came!”
Working with the whole family, and/or supporting families through education and consultation, has become the center of my practice. Once a month, a graduate student facilitates the children’s activity while I meet with their parents as a group for about 20minutes. I use this opportunity to tell parents the types of activities and skills their children are engaged in developing. Parents can gather information that may help them help their children at home or school. Because of the rapport that is built between me and the family, parents often call me a day or two prior to group, offering insightful anecdotes about their child's week. The parents’ reports help me to plan the sessions around issues that are current and salient to the child's social development.
Students demonstrate significant gains over time, out-performing those who receive speech and language therapy in more conventional settings.
To find out about available groups, you may contact Pamela Martins at (617)795-1755.
Editor’s note: Other groups are listed at www.aane.org. Some students with AS attend pragmatic social language groups at school, as part of an Individualized Education Plan. School speech therapists, social workers, etc. can attend AANE trainings with Elsa Abele to learn how to run groups.
by Martha Guevara
My daughter has had some trying times in her life, but is in a good place now. I thought I'd tell you that she has finished 27 college credits at Mass Bay. She enrolled while still technically a high school student and has had some adjustment difficulties along the way, but has done well over all - she has a 3.75 average. Mr. Joe O'Neill, disabilities advisor, has been very helpful. He teaches a non-credit course called "Learning Strategies" which she took with him in her 1st semester and it allowed her to acclimate to Mass Bay and him to get to know her. Because she did well and was picked up by Mass Rehab, I let her take her diploma from Jos. P. Keefe Tech. H.S. in Framingham on May 31st. She was thrilled to graduate, having passed a retake of the MCAS and satisfied all the requirements. I was pleased, too.
Her therapist (Pat Cotter from Blue Hills Counseling in Braintree) has been a great support for the past 5 years, since Angie left the C.A.T. program at the League School to go to Keefe Tech. Mrs. Sheila Jewer at Keefe Tech has also been helpful - she's the SPED Liaison there. I was on the SPED Parents' PAC along with other parents of 2 boys with Asperger's. On the whole, I would say that Sheila and Assistant Principal Bob Leonard worked very hard to understand Angie. My daughter is wonderful, of course, but she has had emotional crises along the way and has sometimes disturbed others with her inappropriate disclosures of personal info, compulsive worries, etc. I'm glad to say that she has come a really long way and has grown up a lot. Also, Dr. Wilfrid Pilette (psychiatrist in Natick) has been wonderful. I think other families in this area could benefit from contacting these providers - I remember how long the wait was to get in to see other doctors when Angie left the League School and I had to find new providers. I like Dr. Pilette and Pat Cotter (MSW/LICSW) and am extremely grateful to them for making themselves available when we have had crises—few and far between, but perhaps inevitable.
My daughter lives at home and walks back and forth to Mass Bay. This has given her a sense of self-sufficiency. She's taking one course now and plans to take one more this summer. I have been very pleased with the quality of instruction she has received. She may transfer to a 4 year college when finished at Mass Bay. She'd like to move out (that would be nice) when she finishes at Mass Bay and if she is ready she will—I think it helped her to start college while still living at home. I have told her it isn't a race, and it helps to have friends whose kids are still at home so that she doesn't feel that everyone except her goes away to school at 18. It also depends on economics.
My daughter’s father is in San Francisco. I have brought her along by myself since she was 23 months old. I am proud of what she's accomplished. I would be happy to talk with any other single parents who are raising kids with Asperger's.