About Asperger syndrome
There are many people with Asperger syndrome in the world.
You cannot tell that someone has Asperger syndrome by looking at them. Because of this Asperger syndrome is sometimes called a hidden disability.
Asperger syndrome lasts for all of a person's life. Some people know that they have Asperger syndrome when they are children. But sometimes people do not know they have Asperger syndrome until they are older.
People with Asperger syndrome can do a lot of things and learn a lot of skills.
Some people with Asperger syndrome find these things difficult
- They find it difficult to tell people what they need, and how they feel.
- They find it difficult to meet other people and to make new friends.
- They find it difficult to understand what other people think, and how they feel.
Not everyone with Asperger syndrome will find these things difficult. This is because everyone with Asperger syndrome is different.
What causes Asperger syndrome?
No one knows why people have Asperger syndrome.
If your child has Asperger syndrome, it is not because you are a bad parent.
More than 1 person in a family may have Asperger syndrome. It can be genetic. This means Asperger syndrome can pass from parents to their children.
How do people with Asperger syndrome behave?
Here are some ways in which people with Asperger syndrome might behave.
- They can have good language skills. But some people with Asperger syndrome think that people always mean what they say. For example, someone with Asperger syndrome might not be able to tell when someone is joking.
- They may only talk about their favourite subject.
- They may be very interested in some things. For example, they may be very interested in trains or the weather.
- They may want to take part in games or activities with other people. But they may not know how to do this.
- They may like to play the same game or do the same thing every day.
What else is special about Asperger syndrome?
Here is some more information about people with Asperger syndrome.
- They can have a good IQ and may go to the same school as children who do not have a disability. Your IQ is a number. Your IQ is a way of thinking about how much you can learn and what you can do for your age.
- They may be bullied at school because other children think they are different. Being bullied means being treated badly by other people.
- They may be very good at something. For example, they may be very good at maths, art or music.
- They may be very good at learning information.
- They may be good at concentrating on one activity. Concentrating means to focus your mind on one thing.
- They may find co-ordination difficult. This means that they may find it difficult to do things like use scissors, use knives and forks, or ride a bike.
- They may have learning difficulties such as dyslexia. Dyslexia makes it difficult for a person to read and spell words.
- They may have mental health problems, such as anxiety or depression.
The 5 senses
The 5 senses are
- sight
- sound
- smell
- touch
- taste.
Here is some information about how Asperger syndrome can affect someone's senses.
Sight
Some people with Asperger syndrome may not like bright lights and colours. Other people with Asperger syndrome might like them a lot.
Sound
Some people with Asperger syndrome may not like loud noises. Other people with Asperger syndrome might like certain noises.
Smell
Some people with Asperger syndrome may not like some smells. Other people with Asperger syndrome might like a certain smell.
Touch
Some people with Asperger syndrome may not like being touched. Other people with Asperger syndrome might like being touched.
Taste
Some people with Asperger syndrome may like to eat the same food every day. Other people with Asperger syndrome might like lots of different food.
Autism
Asperger syndrome is a type of autism.
People with autism find the same things difficult as people with Asperger syndrome. People with autism may also have learning disabilities. Some people with autism may not speak.
In 1944, an Austrian pediatrician named Hans Asperger observed four children in his practice who had difficulty integrating socially. Although their intelligence appeared normal, the children lacked nonverbal communication skills, failed to demonstrate empathy with their peers, and were physically awkward. Their speech was either disjointed or overly formal, and their all-absorbing interest in a single topic dominated their conversations. Dr. Asperger called the condition “autistic psychopathy” and described it as a personality disorder primarily marked by social isolation.
Asperger’s observations, published in German, were not widely known until 1981, when an English doctor named Lorna Wing published a series of case studies of children showing similar symptoms, which she called “Asperger’s” syndrome. Wing’s writings were widely published and popularized. AS became a distinct disease and diagnosis in 1992, when it was included in the tenth published edition of the World Health Organization’s diagnostic manual, International Classification of Diseases (ICD-10), and in 1994 it was added to the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), the American Psychiatric Association’s diagnostic reference book. However, scientific studies have not been able to definitively differentiate Asperger syndrome from highly functioning autism. Because autism is defined by a common set of behaviors, changes that were announced in DSM-V (which took effect in mid-2013) represent the various forms under a single diagnostic category, ASD.
How is it diagnosed
The diagnosis of Asperger syndrome is complicated by the lack of a standardized diagnostic test. In fact, because there are several screening instruments in current use, each with different criteria, the same child could receive different diagnoses, depending on the screening tool the doctor uses.
Asperger syndrome, also sometimes called high-functioning autism (HFA), is viewed as being on the mild end of the ASD spectrum with symptoms that differ in degree from autistic disorder.
Some of the autistic behaviors may be apparent in the first few months of a child’s life, or they may not become evident until later.
The diagnosis of Asperger syndrome and all other autism spectrum disorders is done as part of a two-stage process. The first stage begins with developmental screening during a “well-child” check-up with a family doctor or pediatrician. The second stage is a comprehensive team evaluation to either rule in or rule out AS. This team generally includes a psychologist, neurologist, psychiatrist, speech therapist, and additional professionals who have expertise in diagnosing children with AS.
The comprehensive evaluation includes neurologic and genetic assessment, with in-depth cognitive and language testing to establish IQ and evaluate psychomotor function, verbal and non-verbal strengths and weaknesses, style of learning, and independent living skills. An assessment of communication strengths and weaknesses includes evaluating non-verbal forms of communication (gaze and gestures); the use of non-literal language (metaphor, irony, absurdities, and humor); patterns of inflection, stress and volume modulation; pragmatics (turn-taking and sensitivity to verbal cues); and the content, clarity, and coherence of conversation. The physician will look at the testing results and combine them with the child’s developmental history and current symptoms to make a diagnosis.
Are there treatments
There is no cure for Asperger syndrome and the autism spectrum disorders. The ideal treatment plan coordinates therapies and interventions that meet the specific needs of individual children. There is no single best treatment package for all children with AS, but most health care professionals agree that early intervention is best.
An effective treatment program builds on the child’s interests, offers a predictable schedule, teaches tasks as a series of simple steps, actively engages the child’s attention in highly structured activities, and provides regular reinforcement of behavior. This kind of program generally includes:
social skills training, a form of group therapy that teaches children with AS the skills they need to interact more successfully with other children
cognitive behavioral therapy, a type of “talk” therapy that can help the more explosive or anxious children to manage their emotions better and cut back on obsessive interests and repetitive routines
medication, if necessary, for co-existing conditions such as depression and anxiety
occupational or physical therapy, for children with sensory integration problems or poor motor coordination
specialized speech/language therapy, to help children who have trouble with the pragmatics of speech –the give and take of normal conversation, and
parent training and support, to teach parents behavioral techniques to use at home.
What research is being done
Within the Federal government, the National Institute of Neurological Disorders and Stroke (NINDS), a part of the National Institutes of Health (NIH), supports and conducts research on the brain and nervous system. The NINDS and other NIH components support research on autism spectrum disorders, either at NIH laboratories or through grants to major research institutions across the country.
In 1997, at the request of Congress, the NIH formed its Autism Coordinating Committee (NIH/ACC) to enhance the quality, pace, and coordination of efforts at the NIH to find a cure for autism (http://www.nimh.nih.gov/health/topics/autism-spectrum-disorders-pervasive-developmental-disorders/nih-initiatives/nih-autism-coordinating-committee.shtml). The NIH/ACC involves the participation of seven NIH Institutes and Centers: the National Institute of Neurological Disorders and Stroke, the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Institute of Mental Health, the National Institute on Deafness and Other Communication Disorders, the National Institute of Environmental Health Sciences, the National Institute of Nursing Research, and the National Center on Complementary and Alternative Medicine. The NIH/ACC has been instrumental in the understanding of and advances in ASD research. The NIH/ACC also participates in the broader Federal Interagency Autism Coordinating Committee (IACC) that is composed of representatives from various component agencies of the U.S. Department of Health and Human Services, as well as the U.S. Department of Education and other government organizations.
In fiscal years 2007 and 2008, NIH began funding the 11 Autism Centers of Excellence (ACE), coordinated by the NIH/ACC. The ACEs are investigating early brain development and functioning, social interactions in infants, rare genetic variants and mutations, associations between autism-related genes and physical traits, possible environmental risk factors and biomarkers, and a potential new medication treatment.
Independant living with aspergers
Since each case of Aspergers is unique, with symptoms ranging from mild to severe, the quest for independent living is different for each person. A highly functional person with mild Aspergers may require only a structured environment and a little therapy in order to live independently while a person with moderate to severe AS may need life skills training and daily support services to successfully live alone and hold a job.
Parents can prepare a child with Aspergers for independence as an adult by making sure they acquire the necessary skills for independent living and follow an effective intervention program.
Necessary Life Skills for Independent Living
Life skills training is important for all people with Aspergers. Some parents teach life skills at home and some skills are taught by therapists and reinforced by the parents at home. The person with Aspergers' level of impairment determines how much life skills training is necessary. There are life skills training programs for both children and adults for each life stage. Parents can enroll a child in a life skills program. Some programs are one-to-one training, while others are group training. People with Aspergers may need life skills training in the following areas in order to achieve independent living:
- Communication and social skills help
- Speech and language therapy
- Assistance with how to understand and follow directions
- Dressing appropriately for life activities
- Understanding the importance of daily grooming and personal hygiene
- Potty training
- Housekeeping and chore training
- Grocery shopping for balanced diet
- Budget management
- Student life assistance
- Job skills and work environment training
Independent Living Programs
Independent living programs include life skills training to prepare adults with Aspergers to live on their own. The programs provide the necessary skills for a person to deal with the daily life issues and social demands of living independently. Some independent living programs are residential, which require the participant to live on the premises. Under the guidance of trained professionals, participants gradually learn to rely on themselves until they are performing daily tasks independently. These programs can prepare a youth for living on campus in college or for an adult about to get his first apartment.
Therapies That Help Independent Living
A number of therapies can help prepare a person with Aspergers for independent living. Many of these therapies can start in childhood and continue into adulthood. These therapies include:
- Speech and Language Therapy: A person with Aspergers may need speech and language therapy, especially in the areas of participating in two-way conversations and understanding verbal instructions.
- Occupational Therapy: Occupational therapy can help a person with daily life activities necessary for independent living. Learning how to dress appropriately and achieving potty training are examples of occupational therapy.
- Behavioral Therapy: Behavioral therapy can help a person eliminate undesirable behavior that may interfere with independence.
- Sensory Integration Therapy: Sensory integration therapy can people deal with a sensory issue in order to function better without help.
Preparing a Child for Independence
Parents can prepare a child for independence by staying actively involved in all of the child's therapies and educational programs. Working closely with the child's therapists and teachers as well as providing a structured living environment can make a major difference in intervention success. The parental involvement can also help parents recognize when an intervention is working or when new methods are required to best meet the child's needs. Parents should also join family Aspergers support organizations and encourage adult children to seek out Aspergers supportorganizations and services.
Learning about Aspergers and what techniques have helped others achieve independence can help parents and affected individuals dealing with Aspergers. Reading the advice of experts, such as Temple Grandin, a college professor and autism activist who also has autism, can be helpful. Grandin has written extensively on how to help people with autism and Aspergers live independently. In her article, "Transition to Employment and Independent Living for Individuals with Autism and Aspergers," Grandin stresses that working while still in school helps prepare youth for living independently during adulthood. The work experience during her teen years helped her gradually acquire better social and job skills for adulthood, making the transition to college and work life easier. She also encourages adults with Aspergers who have not previously worked or lived alone to pursue job and life skills necessary for independence.
Independence Is Possible
Parents can take comfort in the fact that some level of independent living with Asperger's Syndrome is achievable for many people. The large number of Aspergers support services and programs, effective treatments and the growing Aspergers awareness among employers provide opportunities for a person with Aspergers to strive for independent living. Social service programs can assist people with more severe forms of Aspergers who need daily assistance to live independently. A child with Aspergers can grow up to have fulfilling career, meaningful relationships and independence.
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