Teens with Aspergers and High Functioning Autism (HFA) have core neurologically-based deficits in social-emotional and communication skills. Without specialized help with these skills, even the brightest teenager may end up unable to make and keep friends or hold down a job. I have worked with numerous Aspergers and HFA teens that made really good grades in high school – but simply could not hold down a job (e.g., working in a fast food restaurant, grocery store, etc.).
One of the main reasons for this dilemma is that the teenager has trouble relating to other people on the job. He may say or do things that come across as socially awkward – or downright rude (e.g., ignoring co-workers when they say hello, talking about his own pursuits with no apparent interest in what the other person may have to say, making negative comments about other people's work/appearance/habits, etc.). To make matters worse, after being fired, the Aspergers employee often never understands the real reasons why he lost the job.
Aspergers and HFA teens generally have a lot of trouble understanding the unspoken rules that govern how they must act around other people in order to get along socially. They often end up with no close friends, and with slim chances of finding a girlfriend. This happens because of problems with social-emotional understanding. Aspergers teens can have a great deal of trouble understanding feelings (including their own), and as a result, they may appear to be detached and uncaring – or at the other extreme, out of control of their feelings. So a young man with Aspergers figures that since he told his girlfriend on their first date that he really likes being with her, he doesn't need to say it again. Or he has just won the school math contest, jumps up and down with happiness one minute, and then yells and sobs the next minute, because any kind of strong feelings – positive or negative – overwhelm him.
Aspergers teens also have a hard time reading other people's non-verbal cues (e.g., body language, facial expression, tone of voice, etc.), which make up about 70-80% of what we communicate (words only count for about 20%-30% of what we communicate). People need to read non-verbal cues in order to make accurate assessments about what other people are thinking, feeling, and intending. If one can't read non-verbal cues and doesn’t understand or predict other people's thoughts/feelings/intentions, he will repeatedly be “off the page” in interactions with others.
The Good News—
Aspergers teens typically have many talents that can make them highly valuable as friends, lovers, and employees:
- many “Aspies” are superior in their loyalty, honesty, and logical thinking
- many of our major advances in literature, the arts, computer technology, mathematics, and other sciences were achieved by “Aspies”
- their ability to focus can lead to achievements that help the rest of us enjoy an enriched quality of life and a better understanding of the universe in which we live
- their memories for facts can be mind-boggling
- their sense of humor can be magnificent
- they can have an extraordinary ability to focus on one isolated topic without getting distracted by other, unrelated input into their brains
So, how can you help your Aspergers or HFA teen to survive and THRIVE?
Here are 40 tips for parents:
1. 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.
2. Although some adolescents with Aspergers are more docile and youngster-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 youngster/adolescent’s welfare.
3. Be patient. Remember that kids and adolescents with Aspergers are relatively immature, socially and emotionally, compared to non-Aspergers 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 Aspergers -- and make sure they still have appropriate supports.
4. 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.
5. Build and use any support networks you can: extended family, close friends, church/synagogue groups, and understanding school staff. 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!
6. 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.
7. 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 children. 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?
8. 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 Aspergers 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 Aspergers.
9. 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.
10. 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.
11. 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.
12. Go with the flow of your youngster’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.
13. 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.
14. 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 Aspergers 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 Aspergers, 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 youngster), or seeing a couples or family therapist, may help you weather a tough time together.
15. 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.
16. If you have not talked to your adolescent about Aspergers, 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 Aspergers 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.
17. 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.
18. 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.
19. 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.
20. In so far as you can, keep your cool—they can’t handle our upset feelings. Walk away if you need to.
21. 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.
22. Children still need structure, down time, soothing activities, and preparation for transitions.
23. Children with Aspergers can be difficult to parent and to love even when they are young. Often, our children neither accept nor express love or other positive feelings in ways a non-Aspergers parent expects or finds most comfortable. Children’ behavior can be trying or embarrassing for us. Adding adolescence to the mix can make this dilemma even more painful.
24. Look for opportunities 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.
25. 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 children need that help, too. They may also not know how to adapt existing programs to meet our children’ needs.
26. 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.
27. 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.
28. 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.
29. 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.
30. 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.
31. Side by side conversations (walking, in the car) may be more comfortable for the adolescent than talking face to face.
32. 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.
33. Special interests may change, but whatever the current one is, it remains an important font of motivation, pleasure, relaxation, and reassurance for the adolescent.
34. 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.
35. 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.
36. Adolescents with Aspergers are less prepared than non-Aspergers 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 Aspergers and can coach appropriate social skills.
37. 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).
38. With or without Aspergers, 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?
39. Adolescents 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.
40. 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.
My Aspergers Teen: Discipline for Defiant Aspergers Teens