Parenting Adolescents with Autism

From the WebMD Archives

Adolescents on the autism spectrum have unique challenges that are often hard for their parents, teachers, and peers to understand. While adolescence is a difficult time for most people, it is especially tough for teens who struggle to understand ever-changing social expectations. We all remember the stress of our middle school and high school years. Our bodies were changing, our friends were changing, and all of the rules around us were changing. Since people on the autism spectrum rely on consistency and predictable social environments, they enter this phase of life at an extreme disadvantage. Supporting them during adolescence requires an understanding of the syndrome and knowledge about strategies that will give them the skills they will need to thrive and reach their potential.

Without the right support, adolescents on the autism spectrum retreat into themselves during this period. They express extreme loneliness and confusion, and are at risk for acting out behaviorally. There is an increased risk of depression and suicide during these years as well. As unpredictable as their social world is during adolescence, their response to this stress can be equally unpredictable.

This phenomenon has become a major concern for parents and educators in recent years. The autism epidemic was identified over 15 years ago. Prior to that time, it was believed that autism affected approximately one in every 2500 births. Now it is estimated to be about one in every 110 births. As the epidemic ages, more students with autism enter middle and high school every year. Their struggles are noticeable on every campus.

In the past, many of these students would have been placed in special education classrooms that were separate from the mainstream. As our education system has improved dramatically over the last 20 years, education for students with special needs, both developmental and behavioral, has become more inclusive. Mainstream education teachers are better trained, and supports for students with special needs are much more understood and available. However, students with autism present a different set of challenges than students with other developmental disorders. While most children with special needs are very social and readily express their needs and wants, students on the autism spectrum struggle with communication and social understanding. Their behavior can appear unpredictable to an untrained professional. As they enter adolescence, the volume gets turned up on every aspect of this syndrome.

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While educators are struggling to find a way to better serve these students, more parents are struggling to cope with their child’s adolescence as well. This goes well beyond the typical acting out or sullen behavior many teens express. They are not retreating from parent control and wanting more time with friends; they often have no friends. Their school experience is more threatening than ever before. They may not feel safe, and may come home with heightened sensitivity, anger, and sadness. Teens with autism have difficulty expressing how alone and frightened they feel. Many regress into the interests they had when they were younger, or spend their time in repetitive activities, attempting to control their world in the simplest of ways. They are more easily angered, which is common with any form of depression. And as lonely as they report they are, they desperately seem want to be left alone.

How do we help them? What are the goals when assessing the need of such a diverse group of teens? This is not an easy question to answer. Individuals with autism have very different characteristics. They range from being nonverbal to very expressive. Some struggle with the simplest of social interactions, while others interact readily but inappropriately. Behavioral challenges can range from refusing to make eye contact to physical aggression. Compulsive behavior can be as simple as wanting their desk arranged the same way each day or as complex as body rocking or repeating the same sentence over and over.

There is no single answer, but multiple approaches to consider.

Make It Visual

For teens with autism, it is important to bring predictability to their school and community experience. Often parents have figured out how to make the home environment consistent. When something new is going to happen in the family (e.g., holidays, new furniture, a new pet, landscaping), they understand how to prepare their child. School and community changes often come rapidly and without warning, but there are basic strategies that can help make even these situations more predictable.

People on the autism spectrum are visual learners, and visual supports are often the first step in bringing predictability to any social environment. This may be a schedule of the school day, or a schedule that delineates the sequence of events that will happen in a single classroom. For some students, a new activity that is coming up in a class (e.g. a science experiment) may be explained step by step in an activity schedule. For many on the autistic spectrum, becoming lost in an activity leads to a chain reaction of decompensation. The entire environment can seem threatening, and they retreat within themselves or want to leave.

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Visual supports can provide either a general planning tool, such as a daily schedule, or a step-by step plan to understanding a project or activity from start to finish. A tool that works for one situation may not work for another, as every individual and every stressful situation are different. Just as you depend on your calendar or PDA to help you organize your daily activities and responsibilities, adolescents with autism need tools to help them structure and plan, too.

As a learning tool, visual representations facilitate the acquisition of new skills. Video modeling, for example, has become a very effective tool for teaching individuals on the spectrum. This involves recording examples of the new skill being performed. The video is then used as a model to teach the student how the new skill works. This is a way of having a predictable model that approximates a real-life example. Practicing with the video gives a clear model to the student, and it does so with fewer social demands and stress than responding to a live instructor. This helps launch the new skill, so it can be generalized to true social situations more quickly.

Practice

In addition to having visual representations of the events of their day it is important to practice the activities that present the biggest challenges. The student may not understand how to navigate the interactions in a certain class, school routine, or community activity. Any interaction can be broken down and practiced. This not only makes it more predictable but allows an opportunity to develop a missing skill that may not have been identified before.

Whenever there is a new class, a new teacher, or a new event on the horizon try to get as much detail as possible. Identify what will be expected and practice it ahead of time in a safe and encouraging way. For example, visit the new class or observe the activity ahead of time. Make sure that the student has the skills or any necessary supports in place, such as knowing who to ask for help or knowing how to “opt out” appropriately.

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Foster Independence

One of the most powerful treatments utilized at Autism Spectrum Therapies, a private agency serving children and families throughout Southern California, is self-management. There is a large body of research documenting the success of self-management, or self-regulatory, strategies with individuals on the autistic spectrum. This approach is particularly useful for both social skills and coping skills, as it provides support at times when a teacher or parent may not be present.

There are many different procedures used under this form of treatment. In general, it involves teaching individuals to observe and control their own behavior. The process may involve teaching a specific social skill or coping strategy to use in potentially difficult situations. This method is extremely successful. Having these strategies in place allows individuals to use them independently, whenever and wherever they need them. As adolescents with autism become better at monitoring, recording, and rewarding their own behavior, more skills can be added. In a sense, they ultimately become their own therapist.

Eventually, teens with autism need to become more independent using social skills, adaptive and community skills, and overall living skills. When entering middle school, a global assessment should be conducted to evaluate a child’s current level of independence and what immediate and long-term goals should be put in place. This exercise can be stressful, as middle school is an intensely social and academic time of life for students, and the decision to shift priorities away from the “norm” to more social and adaptive priorities can be a difficult one. One way of looking at this dilemma is, “How useful are these academic skills if my child does not know how to socialize effectively and live independently?” While it’s important for adolescents with autism to succeed academically, it is equally important for them to develop the skills they’ll need to maintain a job or intimate adult relationships.

Quality of Life

At the end of the day, most everyone agrees that an individual’s quality of life, both now and in the future, is the best compass. While all parents want to prepare their children to leave the nest and make good decisions about relationships, careers, and personal interests, parents of teens on the autism spectrum need to be extra involved in developing those abilities. These parents often start worrying about how their child will navigate the world as early as preschool. The argument of quality of life versus academic success is not lost on them, but they need to understand their options and the resources that will be required as their child enters adolescence.

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A common priority is relationship building. This process involves taking social skills to the next level to identify friendship opportunities and open discussions about dating and intimacy. Most critically, it involves setting short-term goals that are achievable and meaningful. This is a highly charged and intimidating area of development for teens with autism, so frequent successes are important to help alleviate fear and build confidence.

The same is true for skills required for independent adult life. Parents and their child need to agree on critical goals at home for building independence. While these goals may include basic skills like cooking, cleaning, and transportation, they should also include more complicated skills that often stand in the way of later independence, such as organizational skills. To succeed outside of the home, an individual needs to be able to list priorities (shopping, doctor visits, visiting friends, etc.) and to organize the necessary steps to achieve these tasks in a timely manner. Another important goal is learning how to appropriately seek help and advice. Outside of the parent-child relationship, an individual with autism will need to identify appropriate sources of support and learn how to seek out and utilize assistance when it is needed. This may seem like a goal for a younger child, but seeking support is much more complicated at the adult level, especially if one’s social network is much smaller than those not on the autistic spectrum.

While it is important to teach crucial life skills and encourage independence, the goal of ensuring quality of life is important, too. This should start with a team approach to analyzing what exactly “quality of life” means for particular individual and family. One approach is to gather people together in a supportive environment to discuss specific strengths and needs. This would include family, educators, neighbors, therapists, and anyone else who has a meaningful relationship with and understanding of the individual. The goal is to build a profile of how his or her life has progressed up to that moment. Who have been loyal friends? What activities or interests have brought joy? What has succeeded? What has failed? What is the shared vision of the group and how do we get there? What can the individuals sitting around the table contribute moving forward, and who else should be involved?

It is very hard to build an educational program that will need to succeed on so many levels to build independence and ensure optimal quality of life. Without a shared vision and a well-thought out plan, one that includes as many people as possible, it becomes confusing and difficult to stay on task.

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Clinical Resources

Autism Spectrum Therapies (AST) has developed a number of different programs that target social skills and independent living skills. Our agency builds a collaborative team and develops an individualized program that addresses specific learning needs and outcomes. AST relies heavily on the methods of Applied Behavior Analysis (ABA), which represents the most researched and successful procedures for teaching complex skills. The evidence-base for these methods is expanding rapidly, especially in respect to its effectiveness for individuals on the autism spectrum.

Finding a strong behavior analyst is a good first step. If there is not an agency in your area that employs ABA-based methods with adolescents, you can search for individual consultants online at www.BACB.com.

Many parents find it helpful to see a general example of a treatment approach, such as one that addresses social skills. The following is a teaching strategy that involves a three pronged approach for supporting social skills:

  • Teach teens various self-management strategies that result in social successes. These strategies work to reduce social anxiety, prompt appropriate social skills, and identify and organize social opportunities. For example, an individual’s self-management program may involve learning to avoid specific social situations that result in negative outcomes, and identifying social opportunities to practice new skills with success. It may also include specific behavioral strategies to reduce anxiety, and self-reward successes. The program may also have individuals record the number of times they remembered to use specific social skills (skills that may have been learned successfully but are not yet generalized for use in all social environments). If there are social behaviors that have proven to be stigmatizing with peers, the program would also support replacing those behaviors with a more appropriate behavior that serves the same social function.
  • Assess all behavioral challenges and find meaningful replacement behaviors. By adolescence, an individual has developed many ways of coping with social confusion and stress. There may be behaviors that are getting them into trouble, or that are getting them teased, or that are isolating and resulting in few opportunities to practice social skills. One approach is to assess the function of each behavior and work with the individual to develop and practice better options. The result is a new set of social skills that are developed strategically to pinpoint existing needs. Apart from basic skills necessary for social success, these strategic skills serve to remove barriers and set the stage for developing broader social skills. For example, if a teen raises his or her voice to an alarming level whenever a conversation becomes difficult, we need to replace that behavior with a more appropriate conversation skill that serves the same function, reduces anxiety, and changes the social exchange. There are limitless ways to avoid difficult topics or social situations (e.g., presenting a new topic, providing a compliment to redirect the conversation, asking a question, excusing oneself appropriately). The goal is to choose the options that best fit the person and the social context.
  • Create social opportunities in which a teen can experience success and have a better chance of developing age-appropriate friendships. Developing and nurturing a friendship takes ongoing assessment, creativity, and planning. As individuals learn skills to better understand the perspective of their peers and how to engage them more affectively, they need opportunities to practice and be appropriately challenged as well. This process can be the most difficult. It involves working closely with the family and anyone in the family’s network who can be involved, as well as school personnel, community contacts, and “good-fit” opportunities within our agency. Every case has different needs, so each child’s social supports represent a new puzzle to solve.

Whatever strategies are used to build social competency, it is important to have a professional on board who is strong in behavior assessment and developing broad programs to support multiple areas of need. These include behavior challenges, stress and coping, social skill development, building age-appropriate recreational skills, community skills, career development, work-related skills, and relationship building. When choosing a professional to lead the team’s efforts, make sure he or she can speak to the individual’s needs across all of these areas, or consults with other professionals to put together an effective plan.

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Other Resources

There are a number of organizations that can provide helpful information for navigating these complex issues. The most useful support will likely come from local professionals who can help frame the unique needs of the individual. For a broader look at how to support adolescents on the autism spectrum, here are some good places to start:

• Association for Positive Behavior Support (www.apbs.org)

• Autism Speaks (www.autismspeaks.org)

• TASH (www.tash.org)

About the author: Dr. William Frea is a licensed clinical psychologist and a Board Certified Behavior Analyst. He is Founder and Chief Clinical Officer of Autism Spectrum Therapies (AST), a private agency serving children and families throughout Southern California. More information about AST’s early intervention programs, parent workshops and tip sheets, and numerous other services can be found on their website at www.autismtherapies.com.

WebMD Feature from “Exceptional Parent” Magazine

WebMD Feature from “Exceptional Parent” Magazine

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This article is reprinted with permission from Exceptional Parent Magazine, with permission from EP Global Communications.

Copyright © 2010 by EP Global Communications

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