ASPERGER'S SYNDROME, A MILD AUTISM SPECTRUM DISORDER

A NEUROLOGICAL DISORDER AFFECTING SOCIAL COMMUNICATION

by Kathy Rand, Ph.D.

2/1/2003

Disclaimer: This information is for educational purposes only. It is not intended to be medical or therapeutic advice, or to substitute for informed professional diagnosis, advice, or therapy. Those needing information to diagnose or treat Asperger Syndrome should consult a qualified medical or psycological professional.

Asperger's syndrome, pervasive developmental disorder (not otherwise specified, PDD-NOS), and autism are neurological disorders within the autism spectrum, affecting social interactions, communication, imagination skills, and responses to sensory input. A report from the National Institutes of Health (NIH) indicates that autism spectrum disorders are not rare. They occur at about 1 per 500 (more frequent than Down syndrome, cystic fibrosis, or all childhood cancers combined). At present, these disorders are most often misdiagnosed. Symptoms of Asperger's syndrome vary, but often include: difficulty understanding how to play or interact, poor eye contact, poor ability to look at faces to get emotional information, anger at being bumped by accident, impaired ability to point, extreme shyness or sometimes extreme brightness but with a genius-like eccentricity, special interests that dominate social interactions, remarkable memory for facts, sometimes lecturing on special interests like a "little professor," hyperactivity, abnormal response to sensory input, and often perceived by others as odd, spoiled, or obnoxious. Common misdiagnoses include ADHD, oppositional defiance, emotional disturbance, and obsessive-compulsive disorder. Causes include genetic factors, viral infections, and metabolic disorders. Early diagnosis and intervention support the best outcomes. Effective treatments include educational strategies, modified environment to reduce sensory stress, positive behavioral interventions and supports, medications, and medical management of metabolic disorders if diagnosed. Although in the past, some claimed that these disorders were caused by poor parenting, according to the NIH, these assertions have been completely discredited.

PREVALENCE OF ALL AUTISM SPECTRUM DISORDERS

About 1 per 300, affecting about 4 times more boys than girls

ASPERGER'S SYNDROME: CHARACTERISTIC AREAS OF DIFFICULTIES

Social Interactions

Verbal and Nonverbal Communication

Range of Imaginative Activities

Responses to Sensory Input

Other Biological Effects

Social Interactions

usually has a warm relationship with parents, but has great difficulty with peers
wants to play with peers, but it is often awkward and intrusive
may come physically too close to others, step on other's feet, or get "in their face"
may have difficulty taking turns and sharing
may remain aloof or isolated or have a strong desire for privacy
may have difficulty offering comfort or may become angry when others are distressed

Verbal and Nonverbal Communication

may have difficulty initiating or sustaining a conversation
may have difficulty chatting
may have difficulty listening to others
may have difficulty understanding relationships of all sorts: like between objects (blanket and bed), between attributes and objects (blue and pen) and between people (teacher in authority and student)
may have difficulty staying on the topic in a conversation
may ask inappropriate questions
may speak in a formal, stilted way, as if giving a lecture
may try to seize control of the conversation, especially if stressed
may leave out links between thoughts so that conversations lack cohesion
may repeat syllables, words or phrases, especially when stressed
may have unusual facial expressions or grimaces, especially when angry
may have difficulty identifying his/her own feelings
may not understand the connection between tears and sadness
may have difficulty imitating facial expressions or gestures
may have difficulty understanding the emotional meanings of facial expressions and gestures of others
may not use spontaneous emotional gestures, like hugging, clapping to indicate joy, putting an arm around another for comfort, covering the mouth in embarrassment or shrugging shoulders
may have difficulty interpreting stories from pictures or videos, especially if no words are used, or if deceit is depicted (like in The Lion King)
may have difficulty imitating actions like washing hands or getting dressed
may have difficulty with reciprocal smiling
may have difficulty with taking the perspective of others, understanding what others may be thinking, what they know, or why they do things
may believe that others can know where he/she is hurt without seeing the injury occur or being told about it
may be reluctant to point to things to bring them to the attention of others
may have difficulty keeping eye contact
may have difficulty understanding the tone of voice indicating irony or sarcasm
may have difficulty understanding jokes that are not based on puns
may use words or make up new words in an unusual or literal way

Range of Imaginative Activities

may have an extreme interest in one or a few particular (often unusual) subjects, like: astronomy, meteorology, schedules, directories, lists, dinosaurs, horror movies, following rules
may have difficulty with imaginative play
may lack creativity with blocks or Legos, making stacks or lines of sorted pieces
symbolic play may be delayed, repetitive, stereotypic and lack creativity
play may only rarely be used to promote social interaction
may be very resistant to change and have tantrums when plans or the environment are changed suddenly
may lack common sense

Responses to Sensory Input

may be either unusually sensitive or insensitive to sensory input, like loud noise, commotion, moving objects, colors, tastes, smells, touch, and pain
may resist being touched or hugged, or often hug from behind or without putting arms around the person being hugged
may become preoccupied with moving or spinning objects, such as spinning wheels, spraying water, dust particles, or washing machines
may enjoy spinning his/her body around more than typical
may have unusual or heightened sensory experiences, like detecting an unusual odor
may have repetitive behaviors like arm circling, hand flapping, or finger flicking
may enjoy being preoccupied with repetitive behavior, especially when bored
may use repetitive behaviors when anxious, to block out other excessive sensory input

Other Biological Effects

may become anxious more easily than typical
may have difficulty with attention deficit and/or hyperactivity, especially when anxious
may have difficulty shifting attention from one sensory input to another, like to stop watching and start listening
may have deficits in executive memory, so that there is difficulty remembering what problems have to be solved in order to reach a goal
may have difficulty copying from a vertical surface (blackboard) to a horizontal surface (paper)
may have difficulty with visual puzzles
may be less coordinated
may get recurrent infections, especially ear and sinus infections
may have immune system abnormalities, like abnormal levels of immunoglobulins, low levels of IgG subclasses, or abnormal T cell function
may have many allergies, often to antibiotics
may have difficulty digesting many types of foods and have frequent diarrhea
may have unusual skills, like very early reading, ability for calculating math, unusual memory for facts, perfect musical pitch, or unusual drawing ability

WAYS TO HELP

Allow the child to use his intellect and language skills as an asset once he is calm and paying attention. Help him to remain calm, so that he doesn't need to use his defenses (e.g., seizing control of the conversation, silliness, refusing to participate, or defiance).

When it comes to social situations and social communication, the child will have to learn intellectually what other people do naturally and without thought. Encourage her to intellectualize social situations.

Others can help by acting as social coaches for the child, reading faces for him, helping him understand what is in other people's minds, and providing cues that he is having difficulty providing for himself. It is essential that the child socialize with typical children for him to learn appropriate skills.

Help the child express and label her own feelings and label the feelings of others. For example, this might be done by labeling photos of facial expressions, then by acting them out in situations that make people feel a certain way, or with videotapes demonstrating particular expressions. Adults should model expressing their own feelings in certain circumstances.

Help peers interact with the child, to avoid teasing and ridicule. Peers that have the most success are those that are naturally interested and motivated, mature and self confident in social situations, and have leadership qualities to expand the circle of interaction. Explain to peers that the child has difficulty understanding their feelings. Peers should be supported, to allow them to express their reactions or frustrations. They should be encouraged to be straightforward with the child, explaining better ways to interact, like, "If you want to play, sit down and wait for your turn."

Use the Social Stories books by Carol Gray to design stories appropriate for the child, so that he can learn what to expect in a large range of social situations. These are very simple, yet effective.

It is important that teachers and all other adults who interact with the child understand her disability.

Helping the child requires a team approach, involving his/her parents, teachers, psychologist, psychiatrist, behavioral intervention consultant and therapists, speech pathologist, and occupational therapist. It is extremely important to enlist the help of professionals experienced with autism spectrum disorders including Asperger's syndrome.

Use lots of visual cues, like schedules, charts and written instructions, so that the child can work around the memory deficits for accomplishing a goal.

Enlist the help of an experienced psychologist or positive behavioral support consultant to design a program using behavioral techniques with positive reinforcement to teach skills. Skills to be taught include eye contact, compliance, communication skills, imagination skills, relaxation techniques and conflict resolution. Avoid negative reinforcement. The book, Teach Me Language, is an excellent manual that describes how to teach these skills.

Enlist the help of an experienced psychologist or consultant to help design supports and teaching of skills so that the child is included with typical peers in a regular classroom as appropriate.

Enlist the help of an experienced speech and language pathologist to help teach pragmatic communication skills.

Use sensory integration techniques recommended by an experienced occupational therapist to provide a "sensory diet." Depending on the sensory needs, this may include heavy work, movement and gum chewing.

Medications are often very helpful for reducing anxiety, hyperactivity, inattention, impulsivity, repetitive behavior, extreme intensity, tantrums, or aggression.

Get additional information from the Autism Society of America (1-800-3-AUTISM) and the web sites below. In Norman, Oklahoma, an Asperger's Syndrome/ PDD/ Autism Support Group meets regularly. E-mail Kathy Rand at kathy-rand@swbell.net for information. In addition, the local affiliate of the Autism Society of America, the Autism Society of Central Oklahoma (ASOCO), can be reached at (405) 692-8611 or autism@ASOCO.hypermart.net or P.O. Box 890963, Oklahoma City, OK 73189-0963

REFERENCES

Most are available from Future Horizons, Arlington, TX, 1-800-489-0727 or major book stores

Attwood, Tony (1998) Asperger's Syndrome, A guide for Parents and Professionals. Jessica Kingsley Publishers, Philadelphia.

Cohen, Shirley (1998) Targeting Autism. University of California Press, Berkeley.

Freeman, S and L Dake (1996) Teach Me Language. SKF Books, Langely BC, Canada

Frith, Ute, ed. (1992) Autism and Asperger Syndrome. Cambridge University Press, Cambridge.

Gray, Carol (1994) The New Social Story Book. Future Horizons, Arlington, TX, (817) 277-0727.

Willey, Liane Holliday (2000) Pretending to be Normal. Jessica Kingsley Publishers, Philadelphia.

ABOUT THE AUTHOR

Kathy Rand received her Ph.D. in Biology at the University of Pittsburgh. She continued her training with postdoctoral research at the University of Wisconsin using molecular biology to study aspects of development. Her husband, Jim Rand, received his Ph.D. in Developmental Genetics at the Rockefeller University. His postdoctoral research continued at the California Institute of Technology, the University of Pittsburgh and at the University of Wisconsin. Jim currently directs a research laboratory at the Oklahoma Medical Research Foundation and studies the genetic control of neurotransmitter release. Kathy and Jim have two children, including a son with Asperger's syndrome. Kathy has started an Asperger's Syndrome/ PDD/ Autism Support Group that meets in Norman, Oklahoma.