Living with Asperger Syndrome - Parents of Teens

Here is some advice for parents of teens with AS written by Stephanie Loo, our Director of Teen Services:

Be patient. Remember that children and teens with AS are relatively immature, socially and emotionally, compared to neurotypical children 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 teens with AS—and make sure they still have appropriate supports. Don’t pull the “ramp” out from under the “wheelchair”!

Kids still need structure, down time, soothing activities, and preparation for transitions.

Go with the flow of your child’s nature. Simplify schedules and routines, streamline possessions and furnishings. If your teen 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 teen or the family can accomplish in a given time period. You may need to postpone some plans for career goals, trips, culture or recreation.

Communication

Tell your teen just what s/he needs to know, one message at a time, concisely.

Impersonal, written communication is easier for the teen to absorb: lists of routines and rules, notes, charts, or calendars. E-mail may become a new option.

Side by side conversations (walking, in the car) may be more comfortable for the teen than talking face to face.

In so far as you can, keep your cool—they can’t handle our upset feelings. Walk away if you need to.

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.

Discipline & responsibility

A simple, low key, consistent approach is more important than ever, as teens 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 parents/all involved adults agree on the rules. Give choices when possible, but not too many. Engage your teen in problem-solving; what does he think would work?

Special interests may change, but whatever the current one is, it remains an important font of motivation, pleasure, relaxation, and reassurance for the teen.

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.

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 teen’s body, biochemistry, and social scene are changing so fast.

Possible Shifts & Changes

AS can intensify parent/adolescent dynamics—which are challenging enough! For the neurotypical background, read Get Out of My Life—But First Would You Drive Cheryl and Me to the Mall? by Anthony Wolf. The “job description” of a teenager is to pull away from parents 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 teens. Although some teens with AS 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/teen’s welfare.

With or without AS, most teens become less willing to take parent’s word or advice; so we need to hook them up with other trustworthy adults. If you want your teen 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 teen’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.

Yes, teens do continue to grow and develop. You may get some nice surprises along the way, as you see the teen 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.

Hygiene

Instill the essential habit of a daily shower: peers, teachers, and future potential employers will be very put off by poor hygiene. If possible, put your teen’s clothes on a well-organized shelf in the bathroom, near the clothes hamper.

Teens’ Mental Health

Even for a previously well-adjusted child, multiple stressors during the teen 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 teens 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.

Seek out activity-based, practical social skills groups designed especially for teens. Participating in such a group, being accepted by group leaders and peers, is probably the most powerful way to allay a teen’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.

Teens with AS are less prepared than neurotypical teens 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 knows AS and can coach appropriate social skills.

Parents’ Mental Health

Kids with AS 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.

As AANE’s Jean Stern says, “Spray yourself with Guilt-Away!” Forgive yourself for being an imperfect parent, for not loving your child “enough.” Forgive yourself for sometimes losing your temper, yelling, or handling a tense situation awkwardly. Forgive yourself for getting your teen diagnosed “late”—there are still plenty of years in which to help your child. Forgive yourself for not arranging play dates, or sports, or tutoring, the way other parents may be doing. We each offer our child our own unique talents, interests, and qualities, as people and as parents. 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 parents (as a kind friend of mine once said to me).

Build and use any support networks you can: extended family, close friends, church/synagogue groups, understanding school staff. At AANE parent support groups, you will find other wonderful parents who will appreciate how hard you are working for your teen, and share their strategies, resources, and spirit. Use the AANE Family Networking list to contact other parents—or just call AANE. 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 teen, it’s good to be reminded once a week that your needs and feelings are valid and important, too!

If both parents can largely agree about a teen’s diagnosis, treatment, and rules, it will save a lot of family wear and tear. To get your partner on the same page, attend AS conferences or classes together. When you hear the same information, you can discuss it and decide what will work best for your teen and in your family. As you learn more about AS, you may also come to better appreciate each other’s contributions to your child’s welfare. Attend team meetings at the school together, or alternate which parent attends. Seeing your child’s therapist together (possibly without the child), or seeing a couples or family therapist, may help you weather a tough time together.

A regular bed time for the teen 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 teen spends with a grandparent once a month—go for it, and plan ahead for some relaxation, fun, or culture. (Divorced parents 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.)

Disclosure & Self-Advocacy

If you have not talked to your teen about Asperger Syndrome, you or someone else should do so—to the extent that the teen is ready to hear it. It’s tricky for teens—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 AS 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.

Teens 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 teen in problem solving.

Encourage your teen to carry a wallet disclosure card (see AANE booklet or Spring 2006 newsletter, or contact me) to show if stopped by a police officer or other first responder. A lot of teens with AS like to walk at night to unwind, and police may view their behavior as suspicious. You may want to introduce your teen to your local police community relations officer, and explain a little about AS. Refer them to AANE if they have questions.