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FOR ASPERGER SYNDROME: A ROADMAP FOR PARENTS By Carol L. Wilkerson © 1998 If your child has just been diagnosed with Asperger Syndrome (AS), you have probably experienced a wide range of emotions: grief, anger, relief, denial, etc. However, the one overwhelming need for parents in this situation is information. Parents need to understand something about the syndrome, know what issues they should be addressing, and have some idea of where they can find resources and assistance. The OASIS and ASPEN of America, Inc. websites offer a number of excellent articles explaining what AS is and how it manifests itself. This article is intended to assist parents in formulating a treatment plan for their child. It is not an endorsement of any particular approach or treatment, but an overview of those issues that need to be addressed to provide maximum support for your AS child.
I. SOCIAL SKILLS Lack of social skills is the core deficit of Asperger Syndrome, and must receive priority attention. Every AS child needs a well-developed program to teach such skills. Many educators envision "social skills" training as merely teaching traditional concepts of manners and etiquette. AS children need far more basic and direct assistance, such as how to begin a conversation, how to handle conversational changes of topic, how to ask for assistance, or how to deal with annoyances. This need is not addressed by simply having the child around typical peers for all or part of the day. If mere exposure to the norm worked with these children, they would have already absorbed social skills at home, as their typical siblings do. Individuals with AS usually do not learn by observation, as they either fail to observe, or fail to understand or generalize the significance of what they have observed. Instead, AS children need very direct teaching of social skills. Then they can benefit from access to typical peers in order to practice these skills. However, such practice needs to occur in a properly controlled and supported environment. Without this, the situation will generally deteriorate into teasing, inappropriate behavior by the AS child, and alienation of peers. Social skills training can be addressed through several different sources. First, speech therapists with experience in this area can provide such services. This can be done both inside and outside of the school setting. Where services are provided at school, the therapist should spend some time working directly in the classroom, to program for and measure progress in a generalized setting. With private therapists, many will offer either individual sessions or social skills groups, where children with similar difficulties can practice together. Indeed, some therapists offer groups combining speech and occupational therapy, so that social skills and sensory issues can be addressed at the same time. Psychologists provide another source for training in social skills. Those who do a great deal of work with Asperger Syndrome often set up groups of children of similar ages to practice social and friendship skills. These can be helpful, as long as the facilitator also addresses generalization of skills into other settings. In addition, psychologists can usually provide one-on-one training. Just make sure whoever you are using understands Asperger Syndrome and is providing very direct teaching of the targeted skills, rather than merely fuzzy discussions of "feelings." Finally, social skills training can and should be provided through the school system. Training may be coordinated by the school's speech therapist, psychologist, counselor, special education teacher, or a regular education teacher. However, it is important that this program be specifically and carefully developed. There are some excellent social skills programs that can be used, such as the Walker Social Skills Curriculum (Pro-Ed) or the Skillstreaming series (Research Press). Whatever system is used, it is important to identify specific social needs of each individual child, provide direct teaching of the various steps involved in the skill targeted, and then provide the appropriate, naturalistic setting to practice the skill under supervision. Elementary school is an excellent place to teach social skills because of the ready availability of practice partners. A good social skills program at this level will involve typical peers to the greatest extent practical. This is done for several reasons. First, it is beneficial for any child to receive direct and thoughtful teaching of crucial skills that are often taken for granted. Secondly, in a controlled setting it is very helpful for AS children to have peers to use as role models. Therefore, a good program for younger children will include very deliberate involvement of peers as a vital part of the instruction. With middle and high school children, teaching in the classroom becomes more problematic, because of self esteem and peer pressure issues. These children usually prefer to receive their assistance privately or in small groups of similar peers. Skills can then be practiced in the natural setting of the classroom, under the watchful supervision of an adult prepared to offer unobtrusive assistance. Older children may also benefit from a weekly meeting with the school counselor, to help "sort out" everyday situations that arise. II. SCHOOL School can be a very challenging and frustrating environment for AS children. The attitudes and expectations of regular education teachers, combined with the sensory onslaught of a typical classroom, often prove overwhelming. However, access to typical peers is important for the practice of social skills. In addition, children with Asperger Syndrome frequently show academic strengths that make it desirable to include them in regular classes. Therefore the first crucial decision many parents make following an AS diagnosis concerns placement in the appropriate classroom setting. A regular education classroom is often viewed as the best option for a child with Asperger Syndrome. However, this is only true where the child is properly supported in that classroom (see discussion below). If a regular setting is deemed inappropriate for the entire day, many parents turn to some form of "Resource" setting. Here, the child spends part of the day outside the classroom, with a teacher who provides intensive support in one or more academic areas. Another frequently successful choice is a self-contained learning disability class. Some school systems have even set up self-contained classes for Asperger/PDD children. The most important thing to remember in terms of school placement is that you must tailor the setting specifically to meet the needs of your child. All AS children are different, and these differences must be given due consideration. Some children may be able to thrive in a regular class. Others may need a safe harbor to retreat to when overwhelmed, while still others need the shelter of a self-contained classroom. To complicate matters, placement needs can change over time, so this decision needs to be regularly reevaluated. One placement sometimes suggested for AS children who present behavioral challenges is a self-contained behavior disorder (BD) class. This option has been universally condemned by AS experts. AS children may be behaviorally difficult, but they do not have a behavior disorder. The methods used to support BD children may be inappropriate for an AS child, even if the behavior itself appears the same. In addition, due to their social naiveté, AS children are frequently victimized by BD children, who tend to be much more "street smart." Therefore, a suggestion of a BD setting should be evaluated with extreme skepticism. Whatever placement is chosen, it is crucial that appropriate support mechanisms be instituted so the AS child can survive in the school setting. This must start at the top, with a commitment from the administration to fully support not only the child, but also the professionals who work with the child. Such support takes many different forms. One important requirement is that teachers and other support personnel be given adequate training. This training should be specialized, focusing on the characteristics of Asperger Syndrome and how to successfully accommodate it in the classroom. Training should be on-going throughout the year, to reinforce what teachers have learned as well as provide a place to address new issues as they arise. In addition, AS children almost always require at least a part-time aide in the classroom. It is especially important to give this type of support to young children, as intense early intervention often results in less direct support being needed as the child matures. An aide can be essential in helping to focus attention, facilitate social interaction, and deal with behavioral problems. However, the aide must not be treated as an unskilled "baby-sitter," merely keeping the AS child out of everyone else's hair. Instead, the aide must be a fully included part of the team, receiving the training and development necessary to allow competent support of the child. Though teacher and aide are key players in dealing with an AS child, many other individuals are potential resources. If the child is in a regular classroom, special education teachers can still be used to support the child. There may be school psychologists or other specialists who can make themselves available on a consult basis when problems arise. Teachers from the school's "resource" program can be helpful, either for extra assistance with academics, or as a retreat when the regular classroom becomes too stressful. In addition, peers should not be overlooked as a resource. In the appropriate setting, peers can become a classroom full of "little teachers", prepared to assist the AS child both directly and indirectly. These peers should be trained, reinforced and utilized as part of the program for the AS child. School therapists can design programs to provide enhanced therapy services, meeting multiple needs of the child. For example, speech therapy sessions can easily be structured to include a peer or two, thus facilitating social interaction. Occupational therapists trained in sensory integration may be able to provide methods or equipment to help prevent or decrease a behavioral outburst caused by sensory overload. All of these professionals should be considered resources, and should be actively recruited to help support the child. Besides the support team, there are other resources to consider. AS children should be carefully evaluated for potential use of assistive technology. Their educational experience may be improved by access to items such as computers for use in written assignments and audio systems to help them focus attention on the teacher's voice. Academic abilities should be assessed so that appropriate curriculum materials can be selected, as AS children frequently benefit from a modified curriculum in one or more areas. Special education teachers can be of particular assistance in selecting these materials. One final warning in regard to school. No matter what setting is chosen and how much support is provided, the single most crucial variable for the child's success is usually the teacher. Knowledge and ability are not enough. Otherwise competent teachers with thorough training can still fail miserably when dealing with an AS child. It is essential that the teacher have internal motivation to succeed. The ideal candidate to teach a child with Asperger Syndrome is open-minded, creative, flexible, even-tempered, likes a challenge and has a sense of humor. Teachers who are sarcastic, emotionally volatile, or require rigid adherence to "their way" should be avoided. III. SPEECH THERAPY Speech therapy can be very important for AS children and serves several different purposes. Some children may need classic speech therapy, usually to assist with articulation problems. These articulation difficulties may be linked to motor skill problems, where the child has trouble manipulating his tongue and lips to make sounds appropriately. These are problems any speech therapist should be familiar with and trained to handle. Another area that may need to be addressed can be classed as "voice problems." Many AS children demonstrate various differences with their voices. Volume problems are common, with speech being either too loud or too soft. In addition, there can be an unnatural prosody or tone to their speech that makes it difficult to understand or listen to. These problems are also within the normal range of speech therapy. The third and most important area speech therapy can address is the pragmatics of language. Translated, this means how language is used to communicate effectively. This topic is covered in depth above, under social skills. However, be aware that not all speech therapists are familiar with or comfortable with providing this type of therapy. It is important to ensure any speech therapist you consult has a background in handling pragmatics. There are standardized instruments that can be used to measure the need for speech therapy. Also, it is advisable not to rely only on the evaluation and therapy provided at school, but to seek independent input and services, particularly in the area of social skills. Referrals to private therapists can be obtained through a pediatrician or through the speech therapy or rehabilitation department of your local children's hospital. IV. OCCUPATIONAL THERAPY Occupational therapy (OT), despite its name, is not intended to teach an occupation. Instead, it addresses motor skills, particularly fine motor skills. Occupational therapy addresses two important issues for AS children. First, it can assist with the motor skill delays that are typical with Asperger Syndrome. These problems may be subtle, evidencing themselves in poor handwriting, bad posture, lack of coordination or general clumsiness. However, a good program of OT can assist greatly in this area. In addition, occupational therapy is important in dealing with sensory issues. One of the ways AS manifests itself is in disturbances in one or more of the senses. Auditory sensitivities, tactile sensitivities, etc., are very common, and frequently result in behavioral difficulties. A good OT program includes appropriate sensory integration therapy to address these issues. As with speech therapy, there are standardized evaluation instruments that can be administered to determine the areas where occupational therapy can be of assistance. Such an evaluation is important for all children with AS. Where OT services are indicated, a comprehensive therapy plan should be developed. An effective OT program will be functionally based, and grounded on valid research findings. Be skeptical of sweeping promises or of treatment programs that seem of questionable merit. Though most therapists are competent and well intentioned, licensing requirements vary from state to state, and there are some therapists who advocate expensive but unproven treatment. OT evaluations can be performed through the school system. However, schools are only allowed to address those areas of need that directly impact on education, and they sometimes ignore or refuse to address sensory issues. Therefore, it is advisable to obtain a private evaluation, and to pursue a private course of therapy if necessary. Referrals to private OT providers can also be obtained through a pediatrician or through the occupational therapy or rehabilitation department of your local children's hospital. V. RECREATION Special attention must be paid to recreational opportunities for AS children. Such opportunities can either help with building social skills, relationships and self esteem, or can result in teasing, inappropriate behavior and negative self image. One option to explore is special sports teams specifically for children with disabilities. These are generally organized as a part of existing sports leagues for children. Such programs allow AS children to experience the benefits of a team sport without too much of the competitive aspect that is difficult for children with poor motor skills. AS children are frequently more comfortable with "individual" recreational pursuits. Popular choices include martial arts and non-competitive swimming. With these sports, care needs to be taken to ensure the teacher is properly apprised of the child's situation, and is educated on the characteristics of Asperger Syndrome. Another option is to seek out recreational therapy programs that serve children with various types of disabilities. For example, there are many therapeutic horseback-riding programs that will accept AS children. Certain recreational activities tend to be unsuccessful for an AS child. Competitive team sports are an example of this. Asperger Syndrome usually results in a great deal of egocentricity, as well as low tolerance of frustration. This means the child will have a very difficult time functioning in a team atmosphere. In addition, poor motor skills frequently mean the AS child is considered a liability to the team, and treated accordingly. This leads to negative experiences that counteract any positive aspects of the activity. While AS children can sometimes handle competitive sports when started at a very young age, they usually experience problems as they get older. Group activities can also be problematic for AS children. If these groups are under- supervised and under-supported, they can become an arena for teasing, bullying, inappropriate behavior, etc. For this reason, groups such as scouts, church youth groups, etc., should be approached cautiously, with training and support provided prior to the child being included. For the best chance of success, look for groups or clubs organized around topics of special interest to the child. Many AS children develop friendships based around science, computers, etc. VI. MEDICATION Medication is a topic that will be considered at some point for most AS children. This option can be important in allowing the child to function more successfully at school and at home. However, there are no "magic pills" that will cure Asperger Syndrome. Attempts to utilize medication frequently consist of frustrating trial and error with different medications and dosages. Medication is primarily prescribed to deal with specific problems directly related to AS. These include attention problems, aggression, anxiety, and obsessive/compulsive tendencies. However, medication may also be desirable to cope with depression. This is a common "side effect" of Asperger Syndrome, occurring as the growing child realizes his or her differences and is frustrated in attempts to socialize. It is particularly problematic for adolescents and adults with AS. When medication is being considered, it is important to locate a doctor well versed in the specifics of those medicines appropriate for AS children. In addition, it is desirable to have only one doctor handling all medication issues so that treatment can be coordinated. The case manager (see below) can be very helpful in this regard. VII. THE "CASE MANAGER" With an AS child, it is very helpful to have a professional who can serve as your "case manager." This person follows your child on a regular basis, taking data on progress and problems, and serving as an overall resource in the child's treatment program. The case manager can then step in and assist when problems arise in other settings or in dealing with other professionals. Effective case managers come from a variety of disciplines. One of the best suited for this position is a developmental pediatrician who has received intensive training in both normal and abnormal development. Some parents use psychiatrists, psychologists, neurologists, or even their pediatrician. Any of these professionals can function as a case manager, as long as they fulfill one vital requirement: they must have knowledge and experience concerning neurological and developmental disabilities, and preferably specific experience with Asperger Syndrome. The case manager should also be someone willing and able to administer appropriate testing to the child. Perhaps the natural place to begin your search for a case manager is with the professional who provided the diagnosis. One caution, however: be careful in dealing with those professionals whose background is entirely in the area of psychology. Because of their training, these practitioners have a natural bias towards psychological explanations and approaches. In dealing with neurological issues, such an orientation can produce disaster. Make sure any professional you are considering as a case manager has a firm grasp on the fundamentals of AS and on how these traits are manifested in the behavior of the child. VIII. OTHER TREATMENT METHODS Many other treatment options exist for the child with Asperger Syndrome. There are programs to address diet and nutrition, food allergies, and vitamin deficiencies. There are auditory training programs for disturbances in hearing, and tinted lenses for vision sensitivities. You can pursue biofeedback training or do discrete trials. For an extensive list of various approaches, along with source information, see Autism Treatment Guide by Elizabeth Gerlach. Any or all of these treatments may be helpful to your child. However, they may also provide no positive results at all, and can sometimes result in regression. Most of these programs are not covered by insurance, and can be quite expensive. Many "fad" treatments get inordinate amounts of early publicity, only to fizzle out when results do not live up to the initial promise. While anecdotal evidence has its place, parents should look for programs with a valid research base. This helps to avoid charlatans who prey on vulnerable families willing to spend their last dime on the latest "miracle treatment." Parents should investigate all programs thoroughly before committing their time, their money and most importantly, their child. Prior to evaluating such treatment programs, it is essential to make sure you have covered the basic areas outlined in this article. Once you have a program in place to address the core needs of Asperger Syndrome, you can then explore whatever additional therapies you feel might meet the individual needs of your child. Remember that there is no "cure" for Asperger Syndrome, and no single treatment holds all the answers. IX. FINANCIAL ASSISTANCE One important issue for all parents of AS children is how to pay for therapies and treatments that are vital for the child's support. School systems can help by providing some therapy, but they are limited by law to issues pertinent to the child's education. Medical insurance covers some treatment programs, depending on the particular policy. However, there is often resistance to providing therapy for developmental disabilities, and parents may also run into restrictive caps on the number of visits or the dollar amount for treatment. If you are denied payment by your insurance company, do not accept this initial denial! It is important to inform yourself about the appeal procedure for your plan, and to pursue it until you have exhausted all internal remedies. Frequently you may be able to reverse an initial denial of coverage once you reach a higher level within the insurance company. This is particularly true if you enlist the support of your case manager and other treating professionals, asking them to provide you with reports and documentation to illustrate the need for the therapy and the progress made by the child. One little-publicized way to obtain assistance for your child is a Medicaid Deeming Waiver, formerly known as a "Katie Beckett" waiver. This is the result of a suit brought by the parents of a child with disabilities. She needed treatment the parents could not afford on their own, but their income was too high to qualify for governmental assistance. This meant the child was denied treatment she would have otherwise received, had she lived in a family with a lower income. The parents challenged this situation in court, which resulted in a special waiver being created for children with disabilities. These children can be considered for Medicaid assistance based on their own income, rather than their parents'. The procedure to apply for and receive this assistance varies from state to state, but can be lengthy, bureaucratic, and for many parents, embarrassing. However, it is an excellent and legitimate source of financing for many of the treatments needed by AS children X. RESOURCES Two excellent books have been published for parents about Asperger Syndrome. One is Asperger's Syndrome: A Guide for Parents and Professionals by Dr. Tony Attwood, published by Jessica Kingsley Publishers. This book can be ordered by calling 1-800-821-8312. The other is Asperger Syndrome: A Guide for Educators and Parents by Brenda Smith Myles and Richard L. Simpson, published by Pro-Ed. This book can be ordered by calling 1-800-897-3202. Both books are written for non-professionals to understand, and they contain extremely helpful information for parents and teachers. In addition, the Internet contains many sources of Asperger Syndrome information. ASPEN maintains a website at http://www.asperger.org/, which will be the connecting link for various state chapters. OASIS is one of the oldest and most informative AS websites. It can be reached at www.udel.edu/bkirby/asperger, and contains links to many other sites of interest. Finally, the Autism Society of America maintains a website at http://www.autism-society.org/. This site contains information about autism in general, and also features links to other sites. One of the most important and helpful resources for parents grappling with the issues of Asperger Syndrome is a parent support group. There is an incredible feeling of relief in meeting with and talking to other parents who understand your concerns and challenges. Networking with other parents will help you locate professionals in your area who understand and treat children with Asperger Syndrome. You can also coordinate efforts in dealing with school systems, to push for appropriate programs and services. If there is not a support group meeting in your area, take responsibility for starting one. ASPEN offers an excellent brochure to get you started on this process. XI. A FINAL WORD Many parents of children newly diagnosed with Asperger Syndrome are very concerned with keeping this fact a secret. They worry about the impact on the child's future of being "labeled," and do not want to share news of the diagnosis with others, particularly at school. Over time, this concern almost always disappears, as the parents educate themselves and deal with the realities of the situation. However, in the early days after a diagnosis, this reluctance delays treatment, support and understanding desperately needed by the AS child. The bottom line is that an AS child will always be labeled. Each time the child enters a new classroom, interacts with new peers, or faces a new challenge, a label will be assigned. The only control you have over this process is what that label will be. Prior to a diagnosis, it is frequently "brat," "weirdo," "geek," "nerd," "psycho," or my personal favorite, "kid with the bad parents." After a diagnosis, you can change this label to "child with a neurological impairment who is trying as hard as he can and needs support," or in other words, "Asperger Syndrome."
 
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