The teenage years are the most difficult time for young people with Aspergers (AS) and High-Functioning Autism (HFA). Most experts do a great job of presenting the problems these teens face, but they offer few solutions.
Below are 50 tips for parents who want to help their "special needs" teenager survive and thrive during the tough adolescent years:
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. A regular bed time for the adolescent gives you time you can count on each evening for yourself and/or your spouse. 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.)
3. Adolescence is a time of tumultuous change for most kids, but for adolescents dealing with Aspergers or HFA, it can be one of tremendous difficulty. In order to combat this frustration, social training is critical. A small class with an instructor who is capable of creating strong bonds and trust within her students is paramount. Once this bond is created, systematic teaching of how to interpret indirect communication, manners, and body language can take place, and may help remarkably in allowing this type of adolescent to navigate the often confusing world of adolescence.
4. An activity the adolescent can walk to is great—for my grandson it was Tae Kwon Do lessons; he could decide how many lessons to attend each week, and get himself there and back. Learning to use public transportation is also great. Consider buying a T pass, or rolls of quarters.
5. 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.
6. 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 children live and grow through adolescence. And—willingly or of necessity—we each end up making significant sacrifices for our children. 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.
7. The “job description” of an adolescent is to pull away from moms and dads toward more independence; for our children, the process can be extra messy—not least because they may be even less ready for independence than other adolescents. Although some adolescents on the autism spectrum 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 youngster/adolescent’s welfare.
8. Be patient. Remember that kids and adolescents with Aspergers and HFA are relatively immature, socially and emotionally, compared to non-autistic 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 AS—and make sure they still have appropriate supports. Don’t pull the “ramp” out from under the “wheelchair”!
9. Males 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.
10. Build and use any support networks you can: extended family, close friends, church/synagogue groups, and an 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!
11. 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.
12. 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 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?
13. 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 on the spectrum 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 the disorder.
14. 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.
15. 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.
16. 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.
17. 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.
18. If both parents can largely agree about an adolescent’s diagnosis, treatment, and rules, it will save a lot of family wear and tear. To get your spouse on the same page, attend 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 youngster), or seeing a couples or family therapist, may help you weather a tough time together.
19. 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. If you have not talked to your adolescent about the disorder, 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 and HFA 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.
20. 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.
21. 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.
22. 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.
23. In adolescence, communication becomes complicated, as adolescents invent words, signs, and body language to discreetly talk with a friend. For a youngster on the autism spectrum who has been struggling just to understand common social cues, this change can be frustrating and incredibly difficult to understand. The best scenario is when language is "concrete and definite." Teenage conversations that use shortened terms or lingo are going to be very difficult for a youngster with Aspergers or HFA.
24. In so far as you can, keep your cool—they can’t handle our upset feelings. Walk away if you need to.
25. 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.
26. Children still need structure, down time, soothing activities, and preparation for transitions.
27. Children with an autism spectrum disorder 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-autistic 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.
28. 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.
29. 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.
30. Make sure thorough neuropsychological 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.
31. 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.
32. Reading body language and understanding sweeping generalizations can also be quite frustrating. Therefore, adolescents on the spectrum benefit from systematic social training, where they are given the change to role play, study body cues and language, and practice interpreting new signals that may not have been evident in early childhood. I recommend speaking clearly, using a small amount of abstract terms, and directly communicating as much as possible.
33. 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.
34. 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.
35. 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.
36. Side by side conversations (walking, in the car) may be more comfortable for the adolescent than talking face to face.
37. Make sure the IEP provides for social skill learning/social pragmatic language. A good overarching goal is: “Robert will learn the social skills appropriate to a 9th grader …10th grader … to the workplace …etc.”
38. 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.
39. Special interests may change, but whatever the current one is, it remains an important font of motivation, pleasure, relaxation, and reassurance for the adolescent.
40. 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.
41. Adolescents begin to see themselves as independent entities and often use this time in their life to forge new friendships and intimate relationships. For an adolescent with Aspergers or HFA, friendships can be a struggle. This youngster may not understand social cues, and may not know how to be someone's friend. They may feel the typical feelings of a first crush, but be uncertain on how to act on it. I recommend social therapy to help combat the frustration. Social training can help adolescents who are dealing with their disorder understand social cues, slang, and meet other kids who feel similarly about how to deal with new friends. In these social trainings, adolescents should be taught how to listen, and how listening and reacting appropriately can lead to stronger bonds. The parent should try to explicitly explain what the act of flirting is, by pointing it out on a TV show or movie.
42. 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.
43. Adolescents with Aspergers and HFA are less prepared than non-autistic 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. Males 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 knows about autism spectrum disorders - and can coach appropriate social skills.
44. Tell your adolescent just what he needs to know, one message at a time, concisely.
45. The transition plan (part of the IEP) should address the skills that an adolescent needs to acquire while in high school, in order to be prepared for the kind of independent life 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.
46. 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).
47. With or without autism, 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?
48. Yes, Aspergers and HFA 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.
49. 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.
50. Have plenty of patience – and take care of your mental health along the journey!
==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism