Aspergers (high functioning autism) is a complex developmental disability marked by impairments in socialization, communication, cognition, and sensation. Like classic autism, Aspergers is a neurological disorder that affects a child’s ability to communicate and relate to others. It is a lifelong disorder that carries with it considerable and long-term behavior problems. Although the characteristics of Aspergers will differ from person to person, common effects of the disorder include:
• A persistent preoccupation with objects or narrowly focused topics of interest
• An inflexible adherence to a nonfunctional routine or ritual
• Difficulties with fine-motor skills and sensory integration
• Repetition of movements or words and phrases
• Trouble understanding social cues and conversational language styles
Aspergers may be diagnosed when a child exhibits atypical repetitive patterns of behavior, interest, and activities, such as the examples listed above. All people possess some of these traits, but it is the excessive presence of these characteristics that makes life challenging for children with Aspergers. It is also important to note that these behaviors are neurologically based and do not represent the child’s willful disobedience or noncompliance.
Because Aspergers is a neurological disorder, children with the disorder often have difficulty controlling certain behaviors. It is important to understand the underlying psychological and medical bases of the disorder to develop an effective teaching strategy, as well as to help the child better manage these behaviors.
Aspergers is one of five Pervasive Developmental Disorders (PDD) that vary in the severity of symptoms, age of onset, and presence of other disorders like mental retardation. Because language impairments are not a hallmark of Aspergers, kids may not be diagnosed with the disorder until they are in school and other symptoms emerge. Other PDDs include autism, Rett’s Disorder, Childhood Disintegrative Disorder, and Pervasive Developmental Disorder - Not Otherwise Specified (PDD-NOS). The cause of PDDs, including Aspergers, is unknown.
The term Autism Spectrum Disorders (ASD), which is frequently used in the field and in professional literature, is not a medical term. ASD is normally used to describe three of the PDDs―Aspergers, autism, and PDD-NOS―because these three disorders share common characteristics that are manifested on a continuum from mild to severe. Kids with Aspergers have, by definition, normal to above-normal intelligence, whereas kids with autism or PDD-NOS can have a range of intellectual functioning from below to above normal.
What Does Aspergers Look Like?
As mentioned above, the main characteristics of Aspergers involve impairments in socialization, communication, cognition, and sensation. These characteristics exist on a continuum, varying from severe disability to minor impairment. Each child with Aspergers is different and, as such, will present his or her own unique challenges.
Particularly challenging for teachers is the fact that symptoms can vary widely from day to day. It can often seem that the student you are teaching today is a completely different person from the student you taught yesterday. The chart below lists sample characteristics a child with Aspergers may exhibit that can impact the classroom experience. As emphasized previously, however, each child with Aspergers is unique and may display some, many, or none of these behaviors.
Common Characteristics of Children with Aspergers:
Social Challenges
Abnormal inflection and eye contact
Concrete, literal thinking
Difficulty differentiating relevant and irrelevant information
Difficulty engaging in reciprocal conversation
Difficulty generalizing and applying learned knowledge and skills across different situations, settings, and people
Difficulty interpreting others’ nonverbal communication cues
Difficulty understanding social nuances such as sarcasm or metaphor
Difficulty with fine-motor skills, such as handwriting
Echolalia – may repeat last words heard without regard for meaning
Focus on single topic of interest that may not be of interest to others
Inappropriate facial expressions or gestures
Lack of understanding of social cues and subtleties
Literal interpretation of others’ words
Obsessive and narrowly defined interests
Over- or under-sensitivity to different sensory stimuli, including pain
Poor judge of personal space – may stand too close to other students
Poor problem-solving and organizational skills
Tendency to speak bluntly without regard for impact of words on others
Universal application of social rules to all situations
What are the Classroom Challenges?
The characteristics of Aspergers just described translate into challenges to learning, behavior, and socialization for the youngster with the disorder and pose just as significant difficulties for the teacher in terms of teaching, controlling behaviors, and maintaining a classroom environment that is conducive to learning by all students, including the youngster with Aspergers. The chart below provides a quick reference guide for some of the common difficulties kids with Aspergers have in the classroom.
Common Classroom Difficulties of Kids with Aspergers:
• Academic difficulties
• Appear “normal” to other people
• Difficulties with abstract concepts
• Difficulty with learning in large groups
• Difficulty with reciprocal conversations
• Emotional vulnerability
• Inability to make friends
• Insistence on sameness/difficulty with changes in routine
• Interests limited to specific topics
• Low frustration tolerance
• Motor clumsiness
• Pedantic speech
• Poor concentration
• Poor coping strategies
• Poor organization skills
• Poor writing skills (fine-motor problems)
• Problem-solving abilities tend to be poor
• Restricted range of interests
• Sensory issues
• Socially naïve and literal thinkers
• Tend to be reclusive
• Vocabulary usually great; comprehension poor
Because these kids have so many strengths, it is often easy to overlook their weaknesses. Also, some of their behaviors may be misinterpreted as “spoiled” or “manipulative,” resulting in the mistaken impression that kids with Aspergers are being defiant and “troublemakers.” It is important for teachers to recognize that inappropriate behaviors are usually a function of poor coping skills, low frustration tolerance, and difficulty reading social cues.
Most teaching strategies that are effective for students with autism (structure, consistency, etc.) also work for students with Aspergers. However, because these kids are often aware that they are different and can be self-conscious about it, teachers may need to be subtler in their intervention methods.
As a teacher, you are responsible for helping to shape the lives of young people and preparing them to be successful adults. Your Aspergers (high-functioning autistic) students may come from different family backgrounds and leave your classroom for different futures, but they spend a significant portion of their young lives with you right now. Next to their parents and immediate family, you have the greatest opportunity and the power to positively influence their lives. To do this successfully, you need to understand and be able to meet their needs. You already know that, in addition to intelligence, passion, and enthusiasm, teaching requires patience, sensitivity, and creativity.
Having a youngster with Aspergers in your classroom will present unique challenges for you as a teacher, but it also gives you the opportunity to learn new ways to teach young people the academic and social skills that will last them a lifetime.
With the passage of the Individuals with Disabilities Education Act (IDEA) in 1975 and subsequent legislation, all kids with disabilities are entitled to a free and appropriate public education. Inclusive classrooms, where kids with all types of disabilities are included in the general education classroom for part or all of the day, are now the norm in public schools. Given the increasing numbers of kids diagnosed with Aspergers, chances are good you will have a youngster with the disorder in your school and at some point in your classroom.
Having a youngster with Aspergers in your class will have an impact on the educational and social environment of the classroom. Kids with Aspergers have academic strengths and weaknesses like all kids, but the effects of the disorder require different teaching strategies to discover and capitalize on their strengths and facilitate successful learning. Kids with Aspergers also face many obstacles to successful social interactions and relationship building, which are essential elements of the school experience for young people.
As a teacher, you can help ensure that kids with Aspergers are fully integrated into the classroom and are able to participate socially with their peers in the day-to-day activities of school life.
The first challenge for you in teaching a youngster with Aspergers is to recognize it as a serious mutual challenge for the student and you. It can be very deceptive, almost invisible to the untrained eye at first. Kids with Aspergers can look and act like their typical peers and often perform as well or better academically, thus masking the potential effects of Aspergers.
Kids with Autism Spectrum Disorder (ASD) are often perplexed when it comes to picking up social cues. Social stories for kids with ASD help to teach these skills in a simple and direct way that kids better understand. Teachers and moms and dads can write their own or find printable social stories online.
What Are Social Stories?
Social stories are used to teach kids with ASD more appropriate social skills. Kids with ASD don't just pick up social skills, so social stories can provide a great tool in teaching a skill in a direct way. Social stories for kids with ASD help to give kids a better understanding of other people's thoughts, feelings and views. They also help the student to better predict another person's behavior based on their actions. Social stories present various situations in a structured and direct way so that the youngster can understand a situation without having to "read between the lines". Social stories are written from the youngster's perspective. They are simply illustrated using uncluttered drawings or photographs to depict each step of the story.
Possible Subjects for Social Stories and Examples—
Social stories can be written about many different social and behavioral situations that kids encounter in the school or any other environment. Some possible ideas for social stories include "getting in line", "taking turns on the swings", "sitting in the lunch room", "circle time", "taking turns when playing games", "sharing my trucks", or any other situation that causes confusion for a youngster. Here are some great examples of social stories to get you started:
At School
This is a social story I use to help some kids who were having a hard time at group time. It was used with 4, 5, and 6 year olds and worked very well. I wrote it out on yellow paper with a black marker and drew stick figure pictures for a visual.
The story:
It is circle time.
When it is time for circle, I go sit in a blue chair.
I sit with my feet on the floor and my hands to myself.
It doesn't matter who I sit next to. I will shake their hand and say good morning.
I help Mrs. G. at circle by listening...
Waiting my turn...
And sitting like a big kid in my chair.
I don't get angry when I don't get a turn because I will get a turn another day.
When circle is over, I wait until Mrs. G. tells me where to go.
I did great at circle today!
Around Town
This is a story that I wrote for a workshop on Social Stories that I presented for colleagues in my school district. This story could be used with students of any age. The reading level is around first or second grade.
The story:
Some people like to pet dogs.
Petting is fun and relaxing for the person and the dogs really like it, too.
Dogs like it when I pet them on their backs, starting at their head and petting in long strokes down their back.
Some dogs also like it when I scratch them behind their ears or on their stomachs.
I can tell that a dog is enjoying my petting when he starts to wag his tail.
Sometimes dogs start to kick their legs if I find a ticklish spot.
Being Polite
The story:
Mommy talks to a lot of people.
Mommy likes talking to other people.
Sometimes when Mommy is talking to other people I want to talk too.
I can say “Excuse me!” to see if Mommy can talk to me.
Sometimes Mommy will answer me right away.
Other times Mommy is talking about something very important. When she is talking about something important she cannot answer me right away.
If I say “Excuse me” and Mommy doesn’t answer, I can wait until she is done talking.
This will make Mommy very happy.
_______ graders are polite and wait until people are finished talking.
I am going to try to be very polite.
Emotions
The story:
Sometimes I feel angry.
All people feel angry at one time or another.
When I get angry I will find my teacher, Mommy, Daddy or another adult.
When I find them I will try to use words to tell them that I am angry.
I can say "I'm angry!" or "That makes me mad!"
It is okay to use words when I feel angry.
They will talk to me about what happened and about how I feel.
This might help me to feel better.
Wherever I am I can try to find someone to talk to about how I feel.
Figures of Speech
This is a story that I wrote for a workshop on Social Stories that I presented for colleagues in my school district. In all honesty, I wanted to write this story just because I was thrilled that there was actually a Boardmaker symbol for "Kiss my butt". However, stories like this could certainly be useful for kids who might use language literally, and who might be confused by colloquialisms such as this.
This story would be most appropriate for older elementary students (or whenever their peers might begin uses such a phrase), who are actively involved in conversations with their peers, and have shown some confusion of sayings such as this. The reading level of this story is probably third grade or so, but could easily be adapted to higher or lower reading levels.
The story:
Often, people say things that mean something different that the words might normally mean.
Sometimes, people say, "Kiss my butt," but they certainly don't mean that they really want someone to kiss their butt.
People usually say this when they are frustrated with the person they are talking to or arguing with.
"Kiss my butt" is a rude way of saying, "Be quiet," or "Leave me alone."
After I have a B.M. I need to wipe myself. This is okay.
I will try to wipe myself until my bottom is clean.
Sometimes I might have to wipe myself 2 or 3 times. This is okay.
When I am done wiping I can flush the toilet.
Then I can wash my hands.
Major Events
The story (about death):
Everyone and everything that is alive dies at some time.
Death is part of life.
When someone dies, everything inside that person stops.
The heart stops.
The breathing stops.
They cannot feel any hurt.
They cannot feel hot or cold.
When someone dies, they do not have any life insider their body anymore.
Just the body is left...
like a peanut shell without the peanut.
When someone dies people feel sad.
Feeling sad is OK.
People feel sad because the person that died is gone.
When someone dies people cry.
Crying is OK.
Sometimes after you cry you don't feel as sad.
In a few days or weeks you may not feel as sad.
Time helps you feel better.
It's OK to feel better.
Sports and Games
The story:
Basketball is a game you play with a ball that bounces and net that is up high.
I will try to learn how to play basketball.
When I get to the YMCA I can throw basketballs toward the hoop just for fun while I wait for my coach.
There are other kids in my class learning to play basketball too.
My coach’s name is ______________.
Sometimes __________________ may be my coach too.
I will try to listen to my coach when he is talking.
When basketball begins Mommy may have to leave the gym.
This is okay.
Sometimes we stand on a line and practice dribbling the ball.
Dribbling the ball is when I bounce the ball on the ground with my hand.
When it is my turn I can dribble the ball.
I will try to wait my turn in line.
Sometimes we tag each other.
Tag means I touch another person on their shoulder or back to give them a turn.
If someone tags me then I know it is my turn.
When it is my turn I will try to do what the other kids are doing.
Sometimes we pass the ball to each other.
Pass means to bounce or throw the ball to another person.
I will try to pass the ball to other people.
I will also try to catch the ball when other people pass it to me.
I will try to do all of the things the other kids are doing.
Sometimes we have to sit in a circle and just watch our coach.
I will try to stay in my spot in the circle and watch the coach.
This will make my coach happy.
I will try to learn how to play basketball.
Writing a Social Story—
Write social stories in the first person, present tense. The youngster will read or hear the story as if he/she is the one talking. This is easiest for him/her to understand. Simply describe the situation, who is involved, what is happening, where the action is taking place, as well as why the situation has occurred. Give some perspective about the thoughts and feelings of the other people involved in the story. Plainly state what the desired response of the youngster should be in the story. You may use a sentence to summarize the situation at the end of the story to better enable the youngster to understand the desired actions.
Here is an example of a social story for a youngster who doesn't understand that kids don't like when someone stands too close to them when carrying on a conversation:
Sometimes I talk to the other kids in my class.
The other kids don't like when I stand very close to them.
When I stand too closely, it makes my friends feel crowded.
If I stand too close, other kids sometimes get mad at me.
I can back up and stand three feet away from my friends when we talk.
It makes my friends happy when I stand three feet away when we talk.
Here Are Some Quick Tips for Parents of Teenagers with Aspergers and High-Functioning Autism
Keep Doing The Things That Work—
• Be patient. Remember that kids and adolescents with an autism spectrum disorder (ASD) are relatively immature, socially and emotionally, compared to neurotypical kids of the same chronological age. Imagine sending a 10 year old off to high school (even if she has a chronological age of 14), or putting a 14 year old boy behind the wheel of car (even if he has a chronological age of 18)—or sending that 14 year old off to college or the army. We need to adjust our expectations for adolescents with ASD—and make sure they still have appropriate supports. Don’t pull the “ramp” out from under the “wheelchair”!
• Go with the flow of your child’s nature. Simplify schedules and routines, streamline possessions and furnishings. If your adolescent only likes plain T shirts without collars or buttons, buy plain T shirts. If your kid likes familiar foods, or has a favorite restaurant, indulge her.
• Have realistic, modest goals for what the adolescent or the family can accomplish in a give time period. You may need to postpone some plans for career goals, trips, culture or recreation.
• Kids still need structure, down time, soothing activities, and preparation for transitions.
• Communication: Establish verbal codes or gestures to convey that one or both parties need a time out: a chance to cool down before continuing a difficult discussion at a later time. Impersonal, written communication is easier for the adolescent to absorb: lists of routines and rules, notes, charts, or calendars. E-mail may become a new option. In so far as you can, keep your cool—they can’t handle our upset feelings. Walk away if you need to. Side by side conversations (walking, in the car) may be more comfortable for the adolescent than talking face to face. Tell your adolescent just what s/he needs to know, one message at a time, concisely.
• A regular bed time at a reasonable hour is more important than ever, if you can put/keep it in place. Regular routines of all kinds—familiar foods, rituals, vacations—are reassuring when the adolescent’s body, biochemistry, and social scene are changing so fast.
• Discipline & responsibility: A simple, low key, consistent approach is more important than ever, as adolescents become taller and stronger—not that physical restraint was ever very useful with our kids. Pick your battles. Set and enforce only your bottom line rules and expectations—matters of safety and respect. Write them down. Make sure both moms and dads/all involved adults agree on the rules. Give choices when possible, but not too many. Engage your adolescent in problem-solving; what does s/he think would work?
• Make sure thorough neuropsych re-evaluations are performed every three years. This information and documentation may be critical in securing appropriate services, alternative school placements, a good transition plan; choosing an appropriate college or other post secondary program; proving eligibility for services and benefits as an adult.
• Special interests may change, but whatever the current one is, it remains an important font of motivation, pleasure, relaxation, and reassurance for the adolescent.
Possible Shifts and Changes—
• Yes, adolescents do continue to grow and develop. You may get some nice surprises along the way, as you see the adolescent take an unexpected giant step toward maturity. I think of it as their neurons maturing on the vine! Maybe it’s just that they figure some things out, and get used to the feel of their new body chemistry.
• With or without ASD, most adolescents become less willing to take a parent’s word or advice; so we need to hook them up with other trustworthy adults. If you want your adolescent to learn or try or do something, arrange for the suggestion or information to come from a trusted adult other than a parent. E.g.: Handpick your adolescent’s guidance counselor. Look for other good mentors: Uncle? Scout or youth group leader? Psychologist, social worker, peer mentor, “Big Brother,” social skills group leader? Weight room coach or martial arts teacher?
• Boys may need to spend increased amounts of time with their fathers, and/or other male role models, as they undertake to become men. If Dad has taken a back seat, let him know his son really needs his attention now. If you are a single mother, look especially hard for male mentors at your son’s school or in the wider community.
• ASD can intensify parent/adolescent dynamics—which are challenging enough! The “job description” of a teenager is to pull away from moms and dads toward more independence; for our kids, the process can be extra messy—not least because they may be even less ready for independence than other adolescents. Although some adolescents with ASD are more docile and child-like, be prepared to tolerate/ignore considerable distancing, surliness, or acting out, knowing that it won’t last forever. At the same time, set some firm limits, and keep a close eye on the child/adolescent’s welfare.
Hygiene—
Instill the essential habit of a daily shower and clean clothes: peers, teachers, and future potential employers are very put off by poor hygiene. If possible, put your adolescent’s clothes on a well-organized shelf in the bathroom, near the clothes hamper.
Adolescents’ Mental Health—
• Adolescents with ASD are less prepared than neurotypical adolescents for the new challenges of sexuality and romance. Some are oblivious; others want a girl or boy friend, but are clueless about how to form and maintain a relationship. Boys especially may be at risk for accusations of harassment, and girls especially at risk for becoming victims. Teach appropriate rules, or see that another adult does. Look for supervised activities in which boys and girls can socialize safely together, supervised by a staff person who know ASD and can coach appropriate social skills.
• Seek out activity-based, practical social skills groups designed especially for adolescents. Participating in such a group, being accepted by group leaders and peers, is probably the most powerful way to allay an adolescent’s potential despair at not fitting in socially and not having any friends. The positive social experiences and new skills they learn will be assets for the rest of their lives.
• Even for a previously well-adjusted youngster, multiple stressors during the adolescent years may bring on anxiety and even depression. Stressors seem to include increased academic/abstract thinking and social demands at school, peer pressure, increased social awareness, and fears of the future. Highly anxious adolescents who do not get help may be at risk for hospitalizations, school failure, acting out (including alcohol and substance abuse), or even suicide attempts.
• Don’t panic, however—there are interventions you can provide. Appropriate school placement and staff training, exercise (martial arts, yoga), and/or appropriate therapy with a carefully chosen professional, may help control the level of anxiety. Meds may need to be introduced or adjusted.
Moms and Dads’ Mental Health—
• Kids with ASD can be difficult to parent and to love even when they are young. Often, our kids neither accept nor express love or other positive feelings in ways a neurotypical parent expects or finds most comfortable. Kids’ behavior can be trying or embarrassing for us. Adding adolescence to the mix can make this dilemma even more painful.
• If both moms and dads can largely agree about an adolescent’s diagnosis, treatment, and rules, it will save a lot of family wear and tear. To get your partner on the same page, attend ASD conferences or classes together. When you hear the same information, you can discuss it and decide what will work best for your adolescent and in your family. As you learn more about the disorder, you may also come to better appreciate each other’s contributions to your youngster’s welfare. Attend team meetings at the school together, or alternate which parent attends. Seeing your youngster’s therapist together (possibly without the child), or seeing a couples or family therapist, may help you weather a tough time together.
• Build and use any support networks you can: extended family, close friends, church/synagogue groups, and understanding school staff. At MYASPERGERSCHILD.COM parent support groups, you will find other wonderful moms and dads who will appreciate how hard you are working for your adolescent, and share their strategies, resources, and spirit. If you don’t have a good network, consider individual or family therapy for a little support during a stormy, demanding life passage. When you have a demanding adolescent, it’s good to be reminded once a week that your needs and feelings are valid and important, too!
• “Spray yourself with Guilt-Away!” Forgive yourself for being an imperfect parent, and for not loving your youngster “enough.” Forgive yourself for sometimes losing your temper, yelling, or handling a tense situation awkwardly. Forgive yourself for getting your adolescent diagnosed “late”—there are still plenty of years in which to help your youngster. Forgive yourself for not arranging play dates, or sports, or tutoring, the way other moms and dads may be doing. We each offer our youngster our own unique talents, interests, and qualities, as people and as moms and dads. We each do the best we can to gather the information, insights, resources, and services that will help our kids live and grow through adolescence. And—willingly or of necessity—we each end up making significant sacrifices for our kids. In the hardest years my mantra was: “The best I can do has got to be good enough—because it’s the best I can do!” It is a hard job; we are all heroic moms and dads (as a kind friend of mine once said to me).
• A regular bed time for the adolescent gives you time you can count on each evening for yourself and/or your partner. If you can build in regular respite—such as a night your adolescent spends with a grandparent once a month—go for it, and plan ahead for some relaxation, fun, or culture. (Divorced moms and dads may be able to count on a little time alone or with friends as long as they set up and adhere faithfully to a regular visitation schedule.)
• Encourage your adolescent to carry a wallet disclosure card to show if stopped by a police officer or other first responder. A lot of adolescents with ASD like to walk at night to unwind, and police may view their behavior as suspicious. You may want to introduce your adolescent to your local police community relations officer, and explain a little about ASD. Refer the police to MYASPERGERSCHILD.COM if they have questions.
• If you have not talked to your adolescent about ASD, you or someone else should do so—to the extent that the adolescent is ready to hear it. It’s tricky for adolescents—they so much want to be “normal” and strong and successful. A diagnosis can seem threatening or even totally unacceptable. In truth, however, the adults with ASD who do best are those who know themselves well—both their own strengths, which point them toward finding their niche in the world, and their own blind spots: where they need to learn new skills or seek out specific kinds of help.
• Adolescents need to learn when to ask for help, from whom, and how. It’s very helpful to have someone such as a trusted guidance counselor whose door is always open, and who can coach the adolescent in problem solving.
School—
• If you can afford it, you may prefer to pay private school tuition rather than paying a lawyer to negotiate with a financially strapped or resistant school system. However, a private school may not be the best choice. Some families move to a community with a better high school.
• Residential schools may be worth considering for some. The right fit can build tremendous confidence for the adolescent, give the moms and dads a break, and prepare everyone for the independence of the post high school years.
• Schedule regular monthly educational team meetings to monitor your adolescent’s progress, to ensure that the IEP is being faithfully carried out, and to modify it if necessary. Because adolescents can be so volatile or fragile, and because so many important things must be accomplished in four short years of high school, these meetings are critical. If an adolescent is doing very well, the team can agree to skip a month—but be sure to reconvene to plan the transition to the following year.
• See the MYASPERGERSCHILD.COM school list in the adolescent information packet. There are no easy answers to finding the mix of conditions where our kids can survive or even thrive; pick the best possible realistic choice, and help your adolescent adjust. Call MYASPERGERSCHILD.COM if you would like to discuss options. Some families hire educational placement services.
• Some adolescents adjust o.k. to middle/high school with appropriate supports and accommodations. Others, however, just cannot handle a large, impersonal high school. You may need to hire an advocate or lawyer to negotiate with your school system to pay for an alternative school placement, tuition, and transportation.
Transition Planning—
• Chapter 688 in Massachusetts mandates a transition from services delivered under the aegis of the Department of Education (DOE), through graduation or age 22, to services delivered by another state agency, such as the Massachusetts Rehabilitation Commission. Involve your state Rehabilitation Commission in the planning process, since they may be the sole or key provider of post-h.s. services for most adults with ASD.
• Consider delaying graduation in order to ensure that transition services are actually provided under DOE. It may be hard to convince an academically gifted, college bound student to accept this route. However, it may be very helpful for students who will need a lot of help with independent living skills and employment issues. Services need not be delivered within high school walls. Community college courses, adaptive driving lessons, and employment internships are just a few alternatives to consider.
• If you have not yet made a will and set up a special needs trust, do it now. Ask the lawyer about powers of attorney or other documents you may need once your adolescent is no longer a minor. Few moms and dads assume guardianship of a young adult 18 or older, but it may be necessary and appropriate in some situations.
• Social skills are more essential to employment success than high IQ or a record of academic achievement. Make sure the IEP provides for social skill learning/social pragmatic language. For example, a good overarching goal is: “Bobby will learn the social skills appropriate to a 9th grader.”
• The transition plan (part of the IEP) should address the skills a teenager needs while in high school, in order to be prepared for the kind of independent life s/he wants to lead after graduation. Many high schools are unfamiliar with transition planning, however—especially for college bound students. The more you know as a parent, the more you may be able to ensure that a solid transition plan is written and carried out.
• What kind of living situation, employment, and transportation fit your adolescent’s picture of his/her future at age 18 or 25? Once the goals are set, where can the adolescent learn the necessary skills? Consider academic courses, electives, extracurricular activities, and additional services within and outside the high school (e.g. community college, adaptive driving school).
• You want input and ownership from the adolescent as far as is possible, but moms and dads can and should have input. You may need to have team meetings when the adolescent is absent, so you can speak frankly about your concerns, without fear that the adolescent may feel you lack respect for or faith in her/him.
• An activity the adolescent can walk to is great. Learning to use public transportation is also great. Consider buying a T pass, or rolls of quarters.
• Look for opportunities—e.g. in the summer—for a sheltered, successful overnight stay away from home with no parent. Examples: long weekend visits to relatives, a week or two of a carefully chosen sleep-away camp, taking a course on a college campus. MYASPERGERSCHILD.COM has a summer and recreation resource list.
• Look for volunteer activities or part time jobs at the high school or in the community. Be persistent in asking the school to provide help in the areas of career assessment, job readiness skills, and internships or volunteer opportunities. They probably have such services for intellectually challenged adolescents—but may not realize our kids need that help, too. They may also not know how to adapt existing programs to meet our kids’ needs.
• Teach laundry and other self-care/home care skills by small steps over time. Try to get the adolescent to take an elective such as cooking or personal finance at the high school.
College—
• Because your college student is no longer a minor, many colleges generally will not communicate openly with moms and dads, nor disclose the student’s disability without the student’s permission. Some colleges will allow the student to sign a blanket waiver to release information to moms and dads, but many will only allow limited waivers or none. The burden is on the student to disclose, to ask for help, and to let moms and dads know about problems—things that are hard for our kids.
• If your adolescent seems like a good candidate for college, take him or her to visit colleges during the spring vacation weeks of the junior year of high school, or during the summers before junior and senior year. Visits reveal a lot about what environment the adolescent will prefer. Purchase a large college guide to browse (e.g. Fiske). Also look at Colleges that Change Lives by Loren Pope: Clark University, Hampshire College, and Marlboro are New England colleges in this book.
• Not all adolescents are ready for a residential college experience right after high school. To decide, use the evidence of how the adolescent did at sleep-away camp or similar samplings of independence, and look carefully at executive function skills (organizational skills). As an alternative, community colleges offer a lot of flexibility: easy admission, low cost, remedial courses if necessary, the option of a light course load, and the security of living at home. Some college disability offices are more successful than others at providing effective, individualized support. However, if the adolescent is living at home, you may be able more easily to sense trouble, step in with help, or secure supports your young adult needs to succeed.
Children with Aspergers (high functioning autism) may develop problems in their abilities to successfully engage in interpersonal relationships.
Social impact—
Aspergers may lead to problems in social interaction with peers. These problems can be severe or mild depending on the child. Kids with Aspergers are often the target of bullying at school due to their idiosyncratic behavior, precise language, unusual interests, and impaired ability to perceive and respond in socially expected ways to nonverbal cues, particularly in interpersonal conflict. Kids with Aspergers may be overly literal, and may have difficulty interpreting and responding to sarcasm, banter, or metaphorical speech. Difficulties with social interaction may also be manifest in a lack of play with other kids.
The above problems can even arise in the family; given an unfavorable family environment, the youngster may be subject to emotional abuse. A youngster or teenager with Aspergers is often puzzled by this mistreatment, unaware of what has been done incorrectly. Unlike other pervasive development disorders, most kids with Aspergers want to be social, but fail to socialize successfully, which can lead to later withdrawal and asocial behavior, especially in adolescence. At this stage of life especially, they risk being drawn into unsuitable and inappropriate friendships and social groups. People with Aspergers often interact better with those considerably older or younger than themselves, rather than those within their own age group.
Kids with Aspergers often display advanced abilities for their age in language, reading, mathematics, spatial skills, and/or music—sometimes into the "gifted" range—but this may be counterbalanced by considerable delays in other developmental areas. This combination of traits can lead to problems with teachers and other authority figures. A youngster with Aspergers might be regarded by teachers as a "problem child" or a "poor performer." The youngster’s extremely low tolerance for what they perceive to be ordinary and mediocre tasks, such as typical homework assignments, can easily become frustrating; a teacher may well consider the youngster arrogant, spiteful, and insubordinate. Lack of support and understanding, in combination with the youngster's anxieties, can result in problematic behavior (such as severe tantrums, violent and angry outbursts, and withdrawal).
Difficulties in relationships—
Two traits sometimes found in Aspergers children are mind-blindness - the inability to predict the beliefs and intentions of others – (see below) and alexithymia - the inability to identify and interpret emotional signals in oneself or others – (see below) which reduce the ability to be empathetically attuned to others. Alexithymia in Aspergers functions as an independent variable relying on different neural networks than those implicated in theory of mind (see below). In fact, lack of Theory of Mind in Aspergers may be a result of a lack of information available to the mind due to the operation of the alexithymic deficit.
A second issue related to alexithymia involves the inability to identify and modulate strong emotions such as sadness or anger, which leaves the child prone to “sudden affective outbursts such as crying or rage.” The inability to express feelings using words may also predispose the child to use physical acts to articulate the mood and release the emotional energy.
Children with Aspergers report a feeling of being unwillingly detached from the world around them. They may have difficulty finding a life partner or getting married due to poor social skills. Children with Aspergers will need support if they desire to make connections on a personal level. The complexity and inconsistency of the social world can pose an extreme challenge for children with Aspergers. In the UK Asperger's is covered by the Disability Discrimination Act; those with Aspergers who get treated badly because of it may have some redress. The first case was Hewett v Motorola 2004 (sometimes referred to as Hewitt) and the second was Isles v Ealing Council.
The intense focus and tendency to work things out logically often grants people with Aspergers a high level of ability in their field of interest. When these special interests coincide with a materially or socially useful task, the person with Aspergers can lead a profitable career and a fulfilled life. The youngster obsessed with a specific area may succeed in employment related to that area. People with Aspergers have also served in the military. Although Aspergers is generally a disqualifier for military service, the individual can be qualified for enlistment if he or she has not required special accommodations or treatment for the past year. More research is needed on adults with Aspergers .
Mind-blindness can be described as an inability to develop an awareness of what is in the mind of another human. It is not necessarily caused by an inability to imagine an answer, but is often due to not being able to gather enough information to work out which of the many possible answers is correct. Mind-blindness is the opposite of empathy. Simon Baron-Cohen was the first person to use the term 'mind-blindness' to help understand some of the problems encountered by children with autism or Aspergers or other developmental disorders.
Alexithymia is defined by:
a stimulus-bound, externally oriented cognitive style
constricted imaginal processes, as evidenced by a paucity of fantasies
difficulty describing feelings to other people
difficulty identifying feelings and distinguishing between feelings and the bodily sensations of emotional arousal
Theory of mind appears to be an innate potential ability in humans, but one requiring social and other experience over many years to bring to fruition. Different people may develop more, or less, effective theories of mind. Empathy is a related concept, meaning experientially recognizing and understanding the states of mind, including beliefs, desires and particularly emotions of others, often characterized as the ability to "put oneself into another's shoes."
More resources for parents of children and teens with High-Functioning Autism and Asperger's:
• A persistent preoccupation with objects or narrowly focused topics of interest
