Asperger's Disorder was first described in the 1940s by Viennese pediatrician Hans Asperger who observed autistic-like behaviors and difficulties with social and communication skills in boys who had normal intelligence and language development. Many professionals felt Asperger's Disorder was simply a milder form of autism and used the term "high-functioning autism" to describe these individuals. Professor Uta Frith, with the Institute of Cognitive Neuroscience of University College London and author of Autism and Asperger Syndrome, describes individuals with Asperger's Disorder as "having a dash of Autism." Asperger's Disorder was added to the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) in 1994 as a separate disorder from autism. However, there are still many professionals who consider Asperger's Disorder a less severe form of autism.
What distinguishes Asperger's Disorder from autism is the severity of the symptoms and the absence of language delays. Children with Asperger's Disorder may be only mildly affected and frequently have good language and cognitive skills. To the untrained observer, a child with Asperger's Disorder may just seem like a normal child behaving differently.
Children with autism are frequently seen as aloof and uninterested in others. This is not the case with Asperger's Disorder. Individuals with Asperger's Disorder usually want to fit in and have interaction with others; they simply don't know how to do it. They may be socially awkward, not understanding of conventional social rules, or may show a lack of empathy. They may have limited eye contact, seem to be unengaged in a conversation, and not understand the use of gestures.
Interests in a particular subject may border on the obsessive. Children with Asperger's Disorder frequently like to collect categories of things, such as rocks or bottle caps. They may be proficient in knowing categories of information, such as baseball statistics or Latin names of flowers. While they may have good rote memory skills, they have difficulty with abstract concepts.
One of the major differences between Asperger's Disorder and autism is that, by definition, there is no speech delay in Asperger's. In fact, children with Asperger's Disorder frequently have good language skills; they simply use language in different ways. Speech patterns may be unusual, lack inflection or have a rhythmic nature or it may be formal, but too loud or high pitched. Children with Asperger's Disorder may not understand the subtleties of language, such as irony and humor, or they may not understand the give and take nature of a conversation.
Another distinction between Asperger's Disorder and autism concerns cognitive ability. While some individuals with Autism experience mental retardation, by definition a person with Asperger's Disorder cannot possess a "clinically significant" cognitive delay and most possess an average to above average intelligence.
While motor difficulties are not a specific criteria for Asperger's, children with Asperger's Disorder frequently have motor skill delays and may appear clumsy or awkward.
Characteristics
The essential features of Asperger's Disorder are severe and sustained impairment in social interaction and the development of restricted, repetitive patterns of behavior, interest, and activity. The disturbance must clinically significant impairment in social, occupational, and other important areas of functioning. In contrast to Autistic Disorder, there are no clinically significant delays in language. In addition there are no clinically significant delays in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior, and curiosity about the environment in childhood.
A. Qualitative impairment in social interaction, as manifested by at least two of the following:
Marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
Failure to develop peer relationships appropriate to developmental level
A lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest to other people)
Lack of social or emotional reciprocity
B. Restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
Encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
Apparently inflexible adherence to specific, non-functional routines or rituals
Stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
Persistent preoccupation with parts of objects
C. The disturbance causes clinically significant impairment in social, occupational, or other important areas of functioning.
D. There is no clinically significant general delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years)
E. There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood.
F. Criteria are not met for another specific Pervasive Developmental Disorder or Schizophrenia.
Diagnosis
Diagnosis of Asperger's Disorder is on the increase although it is unclear whether it is more prevalent or whether more professionals are detecting it. The symptoms for Asperger's Disorder are the same as those listed for autism in the DSM-IV. However, children with AS do not have delays in the area of communication and language. In fact, to be diagnosed with Asperger, a child must have had normal language development as well as normal intelligence. The DSM-IV criteria for AS specifies that the individual must have "severe and sustained impairment in social interaction, and the development of restricted, repetitive patterns of behavior, interests and activities," that must "cause clinically significant impairment in social occupational or other important areas of functioning."
The first step to diagnosis is an assessment, including a developmental history and observation. This should be done by medical professionals experienced with Autism and other PDDs. If Asperger's Disorder or high functioning autism is suspected, the diagnosis of autism will generally be ruled out first. Early diagnosis is also important; children with Asperger's Disorder who are diagnosed and treated early in life have an increased chance of being successful in school and eventually living independently.
Working with an Individual with Asperger Syndrome
Children with Asperger's Disorder may present a challenge for educators. While they appear capable and are good with memorization and factual information, they may be weak in comprehension and cognitively inflexible. Educators need to capitalize on their abilities, discovering their strengths and interests in order to develop their talents.
People with Asperger's Disorder particularly need assistance in developing their social and communication skills. Children and young adults who received social and communications skills training are better able to express themselves, understand language and become more skillful at communicating with others, increasing their likelihood of successful social interactions. Early intervention means a better chance for independent living and further education.
While few programs are designed specifically to address Asperger's Disorder, some of the treatment approaches used for people with "high functioning" Autism, such as Applied Behavioral Analysis (ABA) and Treatment & Education of Autistic and Related Communication of Handicapped Children (TEACCH), may be appropriate for a person with Asperger Syndrome. ABA is based on the idea that behavior rewarded will more likely be repeated. ABA is typically done on a one-to-one basis and may focus on specific behaviors and communication skills. TEACCH was developed at the School of Medicine at the University of North Carolina as a structured teaching approach that used the child's visual and rote memory strengths to improve communication, social and coping skills. Pictures and charts that show a daily schedule help the child with Asperger's Disorder to anticipate what will happen during the day. This is particularly important for children with Asperger's Disorder since they usually have difficulties with changes in routine.
Educational Issues
Because children with Asperger's Disorder may be only mildly affected, they may begin school prior to being diagnosed. During the elementary years, behavioral issues and immaturity may be a problem but academically, these children frequently do quite well. The ability to memorize information, do calculations and focus intensively serves them well. But as they move through the school system, difficulties with social skills, language and obsessive behaviors become more problematic and may leave them vulnerable to teasing from classmates.
Getting special education services may be difficult because children with AS have normal or above normal intelligence and appear capable. However, every child with disabilities is guaranteed a free, appropriate public education through the Individuals with Disabilities Education Act (IDEA). Keep in mind that IDEA establishes that an appropriate educational program must be provided, not necessarily an "ideal" program or the one you feel is best for your child. The law specifies that educational placement should be determined individually for each child, based on that child's specific needs, not solely on the diagnosis or category. No one program or amount of services is appropriate for all children with disabilities. It is important that you work with the school to obtain the educational support and services that your child needs. The first step should be a comprehensive needs assessment that will become the blueprint for your child's educational plan. Then, in collaboration with your child's school and teachers, develop a well-defined and thorough Individualized Education Plan (IEP). The IEP is a written document that outlines the child's individual educational program, tailored to his or her needs. A program appropriate for one child with Asperger's Disorder may not be appropriate for another.
While many children with Asperger's Disorder may participate in mainstream society, they still need support services. Teachers need to be informed that these children are not simply acting up or being difficult.
Counselors can provide emotional support and assist with social skills, helping children with AS to learn how to react to social cues and situations. Children with Asperger's Disorder may use a "buddy" who serves as a role model for social situations and may facilitate interactions with others by explaining appropriate behavior.
Speech and language therapists may help in the use of appropriate language and occupational therapists can deal with delays in motor development.
Dr. Stephen Bauer, a developmental pediatrician at the Pediatric Development Center of Unity Health in Rochester, New York, suggests that the most important step in helping children with Asperger's Disorder is for schools to recognize that the child has "an inherent developmental disorder which causes him/her to behave and respond in a different way from other students." Because children with Asperger's Disorder respond best to a regular, organized routine, Bauer recommends the use of charts and pictures to help the child visualize the day and to prepare him or her for any changes in advance. Bauer also emphasizes the need to avoid power struggles since children with Asperger's Disorder will become more rigid and stubborn if confronted or forced.
Adults with Asperger Disorder
The transition for individuals with Asperger's Disorder from federally-mandated services through the school system to adult services can be a challenge. While entitlement to public education ends at age 18, the IDEA requires that transition planning begins at age 14 and becomes a formal part of the student's Individualized Education Plan (IEP). This transition planning should include the student with AS, parents and members of the IEP team who work together to help the individual make decisions about his/her next steps. An Individualized Transition Plan (ITP) is developed that outlines transition services that may include education or vocational training, employment, living arrangements and community participation, to name a few.
The first step in transition planning should be to take a look at the individual's interests, abilities, and needs. For example, what type of educational needs must be met? College, vocational training, adult education? Where can the young adult find employment and training services? What types of living arrangements are best?
Post-secondary Education
Many individuals with Asperger's Disorder are able to continue their education by attending college or trade schools. This also provides an opportunity to further social interaction, particularly in areas where the individual has key interests. Be sure that the institution offers training or classes of interest to the individual. Find out what accommodations are available to address his or her special needs. Work with your young adult in selecting classes that take advantage of his or her strengths.
Employment
Employment should take advantage of the individual's strengths and abilities. Temple Grandin, Ph.D. suggests, "jobs should have a well-defined goal or endpoint, " and that your "boss must recognize your social limitations." In A Parent's Guide to Asperger Syndrome and High-Functioning Autism the authors describe three employment possibilities: competitive, supported and secure or sheltered.
Competitive employment is the most independent with no support offered in the work environment. Individuals with AS may be successful in careers that require focus on details but have limited social interaction with colleagues such as computer sciences, research or library sciences. In supported employment, a system of supports allow individuals to have paid employment in the community, sometimes as part of a mobile crew, other times individually in a job developed for the person. In secure or sheltered employment, an individual is guaranteed a job in a facility-based setting. Individuals in secure settings generally also receive work skills and behavior training while sheltered employment may not provide training that would allow for more independence.
To look for employment, begin by contacting agencies that may be of help such as state employment offices, social services offices, mental health departments, and disability-specific organizations. Find out about special projects in your area and determine the eligibility to participate in these programs. It is important to find employers who are willing to work with people with Asperger's Disorder.
Living Arrangements
Whether an adult with Asperger's Disorder continues to live at home or moves out into the community, will be determined in large part by his/her ability to manage every day tasks with little or no supervision. For example, can he handle housework, cooking, shopping, and bill paying? Is she able to use public transportation? Many families prefer to start with some supportive living arrangement and move towards increased independence.
Supervised group homes usually serve several individuals with disabilities. They are typically located in residential neighborhoods in an average family home. The homes are staffed by trained professionals who assist residents based on the person's level of need. Usually the residents have a job, which takes them away from home during the day.
A supervised apartment may be suitable for individuals who prefer to live with fewer people, but still require some supervision and assistance. There is usually no daily supervision, but someone comes by several times a week. The residents are responsible for going to work, preparing meals, personal care and housekeeping needs. A supervised apartment setting is a good transition to independent living.
Independent living means just that individuals live in their own apartments or houses and require little, if any, support services from outside agencies. Services may be limited to helping with complex problem-solving issues rather than day-to-day living skills. For instance, some individuals may need assistance with managing money or handling government bureaucracies. It is also important for those living independently to have a "buddy" who lives nearby that can be contacted for support. Support systems within the community might include bus drivers, waitresses, or coworkers.
Many people think of adulthood in terms of getting a job and living in a particular area, but having friends and a sense of belonging in a community are also important. Individuals with Asperger's Disorder may need assistance in encouraging friendships and structuring time for special interests. Many of the support systems developed in the early years may continue to be useful.
