Lifespan Issues in Asperger Syndrome
Lynda Geller, Ph.D.

Compared with how little was being written ten years ago, we are deluged, almost daily, by new books, publications, and news shows about Asperger Syndrome (AS). This has served to raise the consciousness of the public and has led to an increased awareness and understanding of the unique difficulties individuals with Asperger Syndrome face. An area still in need of greater investigation is the lifelong course of the disorder. Parents always ask us what they can expect for their child in the years to come. Truthfully, there have been no large-scale longitudinal studies to illuminate this question because the use of the diagnosis is so relatively new. However, there are studies that examine various issues at different stages of life, and among clinicians who work daily with this population, there is a store of knowledge and experience that can bring some light to bear on life cycle developments. The intent of this article is to examine typical problems across the lifespan that confront individuals with Asperger Syndrome and affect their family members.

Important issues that arise at different developmental points will be discussed with the hope of alerting families to decisions they may need to make at various junctures and points when advocacy is most needed.

Preschool Years
Many children with Asperger Syndrome are not diagnosed at an early age. This is because they seem so verbally advanced and mature in certain ways. Sometimes it is not until their social problems become more evident when they begin school that anyone has concern. In other cases, these children may show unusual temper outbursts, related to their rigidity or anxiety, which lead their parents to seek behavioral assistance. In both of these instances, proper diagnosis is important, yet often missed. We all now agree that early diagnosis is vital for children with more severe autism so that they can get early intervention services, but we also need to come to think of sociality as a learned "language" that is most naturally and effectively incorporated into the developing brain of children with AS at a young age. Like a foreign language, sociality is best acquired at a tender age so that it can be integrated with other important brain developments.

For the AS child experiencing excessive temper or other behavioral outbursts, proper diagnosis helps point the treating clinician away from placing blame on parents for inadequate discipline and back to investigating the variables that are having such a profound effect on the child. By identifying these issues (sensory sensitivity, poor modulation of mood, high anxiety over change, etc.) effective treatment, approaches can be initiated before these behaviors become inalterable patterns.

Elementary School
When AS children enter public school there are many new challenges. Many of these children still have not been diagnosed and so their unusual behaviors are being interpreted by school personnel in a variety of ways. The majority of these children can be academically successful in mainstream settings, at least in the primary years, but proper support is absolutely crucial. Much of this support comes through the IEP process, an integral part of which is accurate diagnosis so that appropriate educational classification and planning can be done. The support of experts in autism spectrum disorders for both school personnel and families can make the critical difference in achieving successful adjustment in a wide array of functioning areas. A consultant can assist in socially integrating the child among peers, giving specific help to special service personnel, training classroom assistants, and training parents to insure a consistent approach across settings.

An issue of great significance for individuals with AS is the co-occurrence of Non-Verbal Learning Disability (NVLD). While not everyone with AS has this disability, it is extremely common and frequently undiagnosed. For children who have had IQ testing, a discrepancy between verbal and performance IQs, with verbal skills being higher, is often indicative of NVLD. For individuals who have not been extensively tested, characteristics of disorganization, difficulty getting thoughts on paper, inability to complete assignments or remember to turn them in, trouble keeping track of assignments, appointments, and the like, and lack of motivation may be signs of NVLD. Children and adolescents who seem to have significant discrepancies among their abilities, or their abilities and actual performance, should have neuropsychological testing to help determine if this specific learning disability is the cause. The recognition and treatment of NVLD is another area where school personnel may need consultative support as children who have this disability may have often been stereotyped as lazy, unmotivated, defiant, or undisciplined at home. It can be truly daunting for the AS student to cope with both social difficulties and the academic problems that having a learning disability presents. To the child with both of these diagnoses, the world can seem to be a very confusing and hostile place. As they try harder and harder to meet parental and academic expectancies, the demands seem only to become more hopeless to meet. The result may be a child who begins to act out, withdraw, or behave more inappropriately. We typically see children begin to experience this kind of problem around fourth grade age, when the academic work becomes more complex and teachers expect more independence in work habits. To cope with these issues a strong combination of academic support and understanding, educational advocacy, and psychological support are crucial. The IEP process is the tool to gain these services and proper diagnosis is the key that drives the IEP.

Middle School
For many children with AS, the elementary years may be relatively uneventful. While their social disability may present some recurring problems, often their peers are understanding and they may have developed some acquaintances with whom they feel comfortable. However, the challenges of middle school can be devastating, even for the student with supportive parents and school personnel. The social environment becomes much less supervised. Physical education class, the locker changing room, the cafeteria, the halls between classes, the locker, the bus stop, and after school areas can all be opportunities for the AS student to manifest social differences and to be singled out for them. Academically, the organizational skills needed to travel from class to class with needed materials, relate to seven or more different teachers, bring home correct homework assignments, hand in homework on time, and deal with long term assignments may be overwhelming. Again, as many of these children also have NVLD, organizational issues can be a major impediment.

Under this kind of pressure, the preadolescent child may feel trapped and hopeless. A wide variety of coping responses arise, many of them counterproductive. Depression and anxiety may be present and various inappropriate behaviors may arise. At this point it is very important to try to determine what elements of the child's life are causing the difficulties. Is the student overwhelmed with the work, the stimulation level, or the numbers of peers? Is the child being bullied away from adult eyes? Is the child unable to relate to so many adults? Do the adults the child relates to have a sufficient understanding of the disabilities involved? One teacher making disparaging remarks can ruin any child's day, and this can happen if teachers are unaware of the problems of a student with AS. Unlike elementary school, it is much more difficult to get a complete team together, simply because of the scheduling challenges involved. The neutral eye of a consultant can often identify several elements that are affecting the student's adjustment just by observing the progression of a day of school. So, while it can be more complicated to call a full team meeting, some level of pre-training, ongoing assessment, and planning can be crucial in facilitating adjustment to middle school.

High School
High school bears some similarities to middle school in its challenges. There is even less adult supervision of peer interactions and peer pressure often intensifies. Sometimes AS adolescents have identified a clique of students with whom to be comfortable, but unfortunately other times they are solitary figures, depressed and alone. Again, there are those who remain undiagnosed, although they may have been educationally classified as "emotionally disturbed (ED)." We need to remember that ED is not a diagnosis and tells us little about what the problem is. It is simply a classification schools use to characterize a child's problems as primarily emotional. We know that AS is a developmental problem, and that there are typically emotional issues associated with it, however, by conceptualizing the problems as "primarily" emotional, the correct interventions may not be developed to address the underlying roots of the presenting issues. Even the correctly diagnosed student for whom planning has been assiduously done may experience intense difficulties in high school. It is important to remember that most secondary teachers have received no training in disabilities or how to address them, so they are dealing with a variety of included students with little specialized knowledge. Thus, it is important for parents to continue to be strong educational advocates, even for the nearly adult student, and to advocate for pre-training for the teachers the student will encounter in the upcoming school year. Depression and school phobia are frequent reasons AS high school students are referred for evaluation and treatment. Sometimes these are individuals who have been undiagnosed and sometimes they have had good planning over the years. However, the pressures of impending adulthood, heterosexual relationships, and oftimes increasing social misery can cause them to lose hope about their present and their future. This may be a good time to reconsider psychotherapy with someone who really understands the pressures young people with AS face. A specialized group can also help with skill development and opportunities for camaraderie among others facing the same sorts of issues.

When parents of AS children ask us about what the future holds in store, they are wondering if they will grow out of their social disabilities and have a "normal" life. This is a difficult question to answer, as there have been no long-term longitudinal studies to show us what types of childhood problems continue into adulthood and which ones tend to diminish, and in what combinations. Just as for more neurotypical children, there is no crystal ball for AS individuals, because there are so many variables to life adjustment. In addition, those who are adults now had much less opportunity for appropriate intervention, so we cannot always accurately extrapolate from their life experiences. What we do know is there is a wide range of life outcomes from individuals who go to college, marry and have a family to those who live with their parents or in supervised environments throughout life. We know that childhood adjustment is the best predictor of adult adjustment and that behavior patterns formed in childhood can persist throughout life. Therefore, it is crucial to work very diligently with parents to help children develop appropriate social skills, learn to modulate their emotional states, learn to problem solve independently, and have as positive an environment as possible within which to learn and grow, both at school and at home. Nevertheless, there are a number of issues that need to be considered as adulthood approaches.

Adulthood
As high school draws to a close, the question of college or other continuing education arises. For some young adults with AS, college is the obvious next step. Many are academically gifted and have professional careers in mind. For these individuals, the social aspect of college may be the most challenging. Dormitory life may be a wonderful new beginning and a rather structured way to be exposed to new acquaintances or it may be a nightmare of social confusion and rejection. It is important for parents to help their son or daughter realize that if supports have been in place for them throughout life that similar supports should be designed for college life as well. Many young people rightly see college as a new start where other students do not have a lifelong perspective about them, however imagining that major social deficits will vanish is unrealistic. If college is not close to home, finding a therapist who understands AS and someone at the college who is willing to provide ongoing support should be the first step. All colleges have disability offices. They are more familiar with learning and physical disabilities and psychiatric disorders, so they may need some education about students with AS. Remember, at college, students are considered adults. There will be no correspondence with parents about adjustment, so unless a system of support has been devised of which parents are a part, college students are on their own. Attending a local college and living at home may be a good way to ease into college life or it may only insure that the AS individual attends class but has no real integration with other students.

For AS students with NVLD, college can present huge obstacles. While at home, parents may have been providing the needed structure for them to accomplish their work; at college there is no one to give this level of support. Disability offices expect students to seek them out and ask for the kind of help they need. The AS/NVLD student may not have the social or pragmatic ability to do this and may therefore not get the support he or she needs. Even if students ask for assistance, the kind of daily reminders needed are generally not available through a disability office. They may be more familiar with students whose learning disabilities are more straightforward skill deficits than with those who cannot organize themselves and perform. Colleges that specialize in learning disabled students offer some of these kinds of supports and occasionally address social disability as well. A few college support programs have been developed especially to assist students with AS. Sometimes students and their families can put together a support system that includes a coach to provide the underlying structure that was available at home. The aims of college are to help the student become more socially integrated into college life, accomplish college level academic work, learn to organize and manage, and be prepared for the world of work. There are also college advisors who specialize in working with students with disabilities who can help identify supportive college environments.

For AS students not preparing for college, a transition plan should begin to be developed, as part of the IEP process, by age fifteen. Students and parents should be involved in this process, but families should also be exploring alternatives if they want their son or daughter to have real options at graduation. The experience of work during high school can be helpful in career exploration, but can also give the student another identity outside of school. Selection of a job is important in that it be one in an environment that can be supportive, rather than one that taxes the AS individual's very shortcomings. Although adolescents may want the independence of choosing an after-school job, the type of job they are likely to find on their own (fast food, mall stores, etc.) would be the worst introduction to working as they require social adroitness, and little else. Alternatively, students searching for jobs on their own may encounter constant rejection based on their social presentation. Parents can assist in the job search process by helping their son or daughter acquire specialized skills, find supportive environments through friends or parent support groups, explore agencies that provide job coaching and placement, and work in cooperation with school personnel to identify the most appropriate selections.

After graduation, the same issues exist. It is important to identify job placements that are socially supportive, that do not require social skills that the individual does not have, and that utilize existing or developing talents. Unfortunately, what we sometimes see is school experiences that lead nowhere and a referral to vocational agencies, where a job counselor may or may not have any experience with AS. For adults with the additional burden of NVLD, there may be a perception of lack of effort or willingness that may result in an end to structured support. This scenario may result in a young adult living at home, despondent about working and unable to face the challenge any more. Unfortunately a college degree does not eliminate this concern. Some AS individuals with a college degree experience the same problems finding and maintaining appropriate work as those without one. Working with a job support agency that has specialized knowledge about AS can make the search for an appropriate job more successful.

Aspects of life outside of work also need our consideration. Adults with AS may succeed in the work world, but lack other skills that give them independence and/or personal happiness. As with anyone, these individuals need meaningful occupation, meaningful relationships, and meaningful activities to achieve a full quality of life. Again, the specific disabilities that AS individuals have may be impediments to achieving some of these important elements of life. Those who love and support them may themselves need help in judging how to be helpful and how to encourage independence. While some AS adults are leading productive lives on their own, others remain with their families of origin for many years, with no one able to develop a realistic plan for independence. In the past, some families have looked toward the mental health system to provide support for their grown children. While some AS individuals do, in fact, have certain mental health issues, these are generally not the reason for their dependent living arrangement. The developmental issues are really the limiting factors in achieving a more independent life style. There are various reasons why adults with AS find themselves with their parents on a long-term basis. While the most frequent is the inability to hold a job reliably, problems with financial management, social loneliness, disorganization, and poor self-help skills are also prominent. Many parents, particularly as they themselves age, are concerned with this arrangement, yet they do not know how to effect change or where to turn for help that does not imply that their adult child is either mentally ill or mentally retarded. It has seemed that there is no help out there for someone innately bright, but without skills someone of that intellect is expected to possess. As AS has become a more recognized disorder, occasional state and private agencies have come to realize that there is quite a contingent of adults with these kinds of needs and that providing appropriate support is both humane and cost effective. Just as the parents of young preschool children with autism have banded together to demand appropriate treatment, the friends and families of adults with AS and related disorders need to do the same. Services that may be available or in planning phases include case management/service coordination, residential habilitation (supporting independence in natural homes), job training and support, college support, supported recreation, supported apartment living, and specialized group home living. Through creative case management, appropriate services can sometimes be identified that were not specifically designed for individuals with AS, but that are very appropriate support mechanisms.

Asperger Foundation International is conducting a state by state analysis of service eligibility and provision for adults with AS, as well as a survey of actual experiences of adults and their families who need supportive services. The results of this study will help form a basis for planning and advocacy and perhaps encourage a forum to discuss the special needs of adults with AS. As is often the case, appropriate and targeted support may help an individual become a tax payer instead of a dependent citizen, and may have significant effects on quality of life for both the individual and the family.

Asperger Foundation International
501 Madison Avenue, 18th Floor
New York, NY 10022
Phone: 212-371-7755
www.aspfi.org