HELP FOR PARENTS OF CHILDREN WITH ASPERGER'S & HIGH-FUNCTIONING AUTISM

Education and Counseling for Individuals Affected by Autism Spectrum Disorders

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The Struggles of Adolescence: Help for Young People on the Autism Spectrum

“My 18 y.o. with Asperger syndrome (high functioning) is on my last nerve. He has been on in-school detention all week. Now he’s getting into trouble there too and is about to receive an out-of-school suspension. He simply doesn’t care anymore, and honestly, I think he is trying to get kicked out of school. He comes home and goes straight to his room for the rest of the evening to play online gaming (he will come out occasionally to eat a snack, but won’t eat dinner with the rest of us). He’s rude and hateful to me and his younger brother. I am at my wits end. No idea where I went wrong with this child. He has no friends to speak of, seems depressed and moody all time, and has even said he wished he wasn’t alive. I really have doubts that he will make it in the adult world at this point. He has already said he will not go to college or trade school. And he has never had an interest in working a part-time job so far. Please help!”

First of all, there is much more going on here than simple rebellion or defiance. Your son’s misbehavior is a symptom of some underlying factor(s). For example, many teens spend the entire school day under duress from peer-rejection, teasing and bullying. So, when they return home, some will take their frustration out on a “soft target” (in your case, his younger brother perhaps) as a way to discharge negative emotions. Also, some teens on the autism spectrum would love nothing more than to get kicked out of school due to (a) the mismatch between their educator’s teaching style and their individual learning style (most autistic teens learn visually), or (b) an unfriendly classroom environment that bombards and overloads their senses (most autistic teens have sensory sensitivities, such as sensitivity to excess noise, crowded hallways, smells from the cafeteria, and so on). Thus, the root cause(s) of the “misbehavior” needs to be uncovered before behavioral change can happen.

Adolescence is the most difficult time for teenagers with High-Functioning Autism (HFA) and Asperger’s (AS). Young people on the spectrum typically become more isolated socially during a period when they crave friendships and acceptance more than ever. In the harsh world of middle and high school, they often face rejection, isolation and bullying. Meanwhile, school becomes more demanding in a period when they have to compete for college placements. So, who wouldn’t be acting-out under these circumstances?

Most autistic teenagers struggle with social skills, communication, and a limited diet. The causes of these struggles (e.g., social, communication and behavioral problems, sensory issues, etc.) can create the desire for isolation. They can easily drop into a lonely state of depression and/or anxiety, making the original problems much worse. Thus, helping the teen to boost his self-esteem and level of confidence is paramount.

So what can parents do to help their “special needs” adolescent? Below are some crucial tips for helping HFA and AS teens survive - and thrive - during the rough teenage years:

1. With or without an autism spectrum disorder, most teenagers become less willing to take a parent’s word or advice. Therefore, try to hook your teen up with other trustworthy adults. If you want him to learn or try to do something outside of his comfort zone (e.g., something other than playing video games all day), then arrange for the suggestion or information to come from a trusted adult other than you. Look for other good mentors (e.g., an uncle, scout or youth group leader, peer mentor, “Big Brother,” social skills group leader, coach or martial arts teacher, etc.).

2. Teenagers on the autism spectrum need developmentally-appropriate structure, but it requires sensitivity on your part to figure out what is needed when. Watch your teen, not the calendar. Try to get inside his head. Also, be prepared to run out of patience. Create your own back-up plan for when this happens (e.g., YOU take a time-out).

3. View “misbehavior” as a signal of needs. Everything your teen does tells you something about what he needs.

4. There are going to be occasions when negative consequences become necessary (e.g., grounding, taking away privileges, etc.), but they should always be immediate, definite, and relevant. Teens with autism tend not to perceive cause-and-effect and are likely to have short memories, so prolonged consequences not only lose their impact, but also their effectiveness.

5. The “transition plan” (which needs to be part of your teen’s IEP) should address the skills that your teen 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. The more you know as a mom or dad, the more you will be able to ensure that a solid transition plan is written and carried out.

6. Although most teenagers with HFA/AS are more child-like than their “typical” peers, be prepared to tolerate and/or ignore considerable distancing, hostility, or acting-out – knowing that it won’t last forever. At the same time, set some firm limits, and keep a close eye on your teen’s anxiety level and depression.

7. List the behaviors that you feel are most deserving of attention. This is an important step, because some behaviors may need intervention or therapy in order to be eliminated rather than simple disciplinary tactics. Odd self-soothing behaviors are common in autistic teens with sensory processing issues, and they can be easily replaced with more appropriate ones.

8. Teach laundry and other self-care/home-care skills by small steps over time. Also, try to get your teenager to take an elective at school (e.g., cooking, personal finance, etc.).

9. Special interests may change, but whatever the current one is, it remains an important source of motivation, pleasure, relaxation, and reassurance for your teenager.

10. Some teenagers on the spectrum adjust to high school with appropriate supports and accommodations. However, others just can’t handle a large, impersonal academic setting that exists in high school. You may need to hire an advocate to negotiate with the school system to pay for an alternative school placement, tuition, and transportation.

11. Seek out social skills groups designed especially for teenagers with autism. Participating in such a group and being accepted by group leaders and peers is probably the most powerful way to alleviate your teenager’s potential despair at not fitting-in socially and not having any friends. The positive social experiences and new skills he learns will be assets for the rest of his life.

12. Schedule regular monthly educational team meetings to monitor your teenager’s progress, to ensure that the IEP is being faithfully carried out, and to modify it if necessary. Because teenagers on the spectrum can be so volatile or fragile, and because so many important things must be accomplished in 4 short years of high school, these meetings are crucial. If your child 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.

13. Reading body language and understanding sweeping generalizations can be quite frustrating for autistic teens. Thus, they usually benefit from systematic social training in which they are given the chance to role play, study body cues and language, and practice interpreting new signals that may not have been evident in early childhood.

14. Not all teenagers on the spectrum are ready for a residential college experience right after high school. To decide, use the evidence of how your teen did at sleep-away camp or similar samplings of independence, and look carefully at executive function skills (e.g., organizational skills). As an alternative, community colleges offer a lot of flexibility (e.g., easy admission, low cost, remedial courses if necessary, the option of a light course load, the security of living at home, etc.). Some college disability offices are more successful than others at providing effective, individualized support. However, if your teenager is living at home, you may be able more easily to sense trouble, step in with help, or secure supports he needs to succeed.

15. Make sure thorough neuropsychological re-evaluations are performed every 3 years. This information and documentation may be critical in (a) securing appropriate services, (b) alternative school placements, (c) a good transition plan, (d) choosing an appropriate college or other post-secondary program, and (e) proving eligibility for services and benefits as a grown-up.

16. 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 learning disabled teenagers, but may not realize your high-functioning autistic teen needs that help, too. They may also not know how to adapt existing programs to meet his needs.

17. Look for opportunities for a sheltered, successful overnight stay away from home with no parent (e.g., long weekend visits to relatives, a week or two of a carefully chosen sleep-away camp, taking a course on a college campus, etc.).

18. 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 teenager’s clothes on a well-organized shelf in the bathroom near the clothes hamper.

19. In adolescence, communication becomes complicated as teenagers invent words, signs, and body language to discreetly talk with a friend. For a youngster with HFA/AS 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 young person on the spectrum.

20. Impersonal, written communication is easier for the HFA/AS teenager to absorb (e.g., lists of routines and rules, notes, charts, calendars, etc.).

21. If your teenager seems like a good candidate for college, take him 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 your teenager will prefer. Also, purchase a large college guide to browse.

22. If you have not yet made a will and set up a special needs trust, do it now. Ask your lawyer about powers of attorney or other documents you may need once your teenager 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.

23. If you have not talked to your teenager about his disorder, you or someone else should do so (to the extent that he is ready to hear it). It’s tricky for teenagers on the spectrum – they so much want to be “normal” and strong and successful. A diagnosis can seem threatening or even totally unacceptable. In truth, however, adults on the spectrum 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).

24. If both parents can agree about their HFA or AS teenager’s diagnosis, treatment, and rules, it will save a lot of family wear and tear. To get your spouse on the same page, attend autism conferences or classes together. When you hear the same information, you can discuss it and decide what will work best for your teenager and in your family. As you learn more about autism spectrum disorders, 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. Also, seeing your teen’s therapist together (possibly without the youngster), or seeing a couples or family therapist may help you weather a tough time together.

25. Have realistic, modest goals for what your teenager or the family can accomplish in a given time period. You may need to postpone some plans for career goals, for example.

26. Go with the flow of your youngster’s nature. Simplify schedules and routines, streamline possessions and furnishings. If your teenager only likes plain T shirts without collars or buttons, buy plain T shirts. If he likes familiar foods, or has a favorite restaurant, indulge him.

27. Multiple stressors during adolescence often bring on anxiety and even depression in teens on the spectrum. Stressors may include increased academic/abstract thinking and social demands at school, peer pressure, increased social awareness, and fears of the future. Anxious teenagers who do not get help may be at risk for school failure, acting-out, alcohol and drug abuse, and even suicide attempts.

28. 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 autistic 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.

29. Build and use any support networks you can (e.g., extended family, close friends, church/synagogue groups, an understanding school staff, etc.). 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 teenager, it’s good to be reminded once a week that your needs and feelings are valid and important, too!

30. Remember that teenagers with HFA/AS are relatively immature - both socially and emotionally - compared to “typical” teens of the same chronological age. Adjust your expectations for your teen, and make sure he has appropriate supports.

31. Teenagers with HFA/AS are less prepared than “typical” teens for the new challenges of sexuality and romance. Many teens on the spectrum want a girl or boy friend, but are clueless about how to form and maintain a relationship. Autistic males may be at risk for accusations of harassment, and autistic females may be at risk for becoming victims. Teach appropriate rules. Look for supervised activities in which boys and girls can socialize safely together, supervised by a staff person who can coach appropriate social skills.

32. For a teenager with HFA/AS, friendships can be a struggle. Your youngster may not understand social cues, and may not know how to be someone's friend. He may feel the typical feelings of a first crush, but be uncertain on how to act on it. Social training can help these young people to understand social cues, slang, and meet other teens who feel similarly about how to deal with new friends. In these social trainings, teenagers can be taught how to listen, and how listening and reacting appropriately can lead to stronger bonds. Also, you should try to explicitly explain what the act of flirting is (e.g., by pointing it out on a TV show or movie).

33. A regular bed time at a reasonable hour is more important than ever. Regular routines of all kinds (e.g., familiar foods, rituals, vacations, etc.) are reassuring when the autistic teenager’s body, biochemistry, and social scene are changing so fast. Keeping your teen’s routines constant will improve his outlook. He will know what to expect at any given time, lessening the stress he feels.

34. Using your teenager’s special interests - both at home and at school - can generate positive responses in many situations. For instance, a 14-year-old's love of trains can be used to encourage eating at home. Train-themed dinnerware - or even themed foods - can be used to entice the reluctant eater.

In conclusion, young people with HFA and AS bring their special flavor to adolescence. Some will not avoid interacting with others. They are eager to communicate (though often in a clumsy, in-your-face way). The level of their insight into their social skills deficits will then become the determining factor of their social success. If they are unaware of their shortcomings in gauging the social atmosphere and reading social cues, they may inadvertently come across as rude, insulting or boring. They may miss subtle criticism and sarcasm. As they develop better insight, they will become more motivated to learn, which had not come naturally and intuitively.

In the social development of HFA and AS teens who show some interest in peer interactions, social anxiety and resultant avoidance play an important role. Some of these young people get very nervous just with the thought of approaching others and may choose to avoid it at all costs. Their avoidance may appear as if they are not interested in others. It is important to differentiate this since anxiety can be treated much more easily than genuine lack of interest.

Regardless of the individual developmental route, most teens on the spectrum start realizing that they are not quite like others at some point during their adolescence. Once the teenager realizes that he has significant difficulties in conducting social relationships compared to his peers, he needs deal with this loss, just like dealing with any other loss. Understanding the thoughts, feelings and behavior of a teen on the spectrum is the necessary first step in helping him out and being there for him. 

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