Asperger syndrome (AS) is a neurobiological disorder characterized by a specific pattern of behaviors and deficiencies in social and communication skills. AS was first described in 1944 by a Viennese pediatrician, Hans Asperger, and was added to the Diagnostic and Statistical Manual of Mental Disorders (DSM IV) in 1994. While the formal definition of AS is new to the American professional community, it has been accepted by some European professionals since the publication of Asperger's paper.
AS is estimated to occur in 1 out of every 500 live births and is much more common in boys than girls. Most often, the cause of AS is unknown, however, there are cases where the cause appears to be genetic (where one parent, typically the father, has all or some of the AS traits as well).
Features and Characteristics
Following is a list of characteristics commonly seen in individuals with AS:
- Difficulty with social skills
- Inability to develop peer relationships
- Socially and emotionally inappropriate responses (they tend to misread social situations)
- Naive and gullible
- Unaware of others feelings
- Difficulty with transitions or change
- Obsessiveness with routines
- Repetitive motor mannerisms
- Areas of special interest, particularly in intellectual areas (math, science, reading) or parts of objects
- Tendency to rock, fidget, or pace
- Difficulty with nonverbal communication (limited use of gestures, clumsy body language, inappropriate facial expressions, stiff gaze)
- Sensitivity to sights, tastes, sounds, or smells
- Unusually accurate memory for details
- Preoccupation with their own agenda (in their "own world")
- Normal to superior intellectual abilities
- Difficulty understanding what theyve heard or read
- Formal manner of speaking
- Talks at length about a subject or repeats a word or phrase many times
- Unusually loud or monotonous voice
- Physically awkward, clumsy and uncoordinated motor movements
- Sleeping or eating problems
There is no medical test available for AS. Instead, professionals use the Diagnostic and Statistical Manual of Mental Disorders to confirm or rule out the diagnosis. The behaviors mentioned in the DSM IV must cause a significant interference in the individuals social abilities or other areas of functioning. In addition, there must be no significant delay in cognitive abilities, self-help skills, interest in the environment, or overall language development. A diagnosis can typically be made between ages 3 and 5 years.
There is no specific course of treatment for AS, however, commonly used treatments include psychotherapy, parent education and training, behavioral modification, social skills training, and educational interventions.
It is important for the staff at the childs school to understand that the child with AS has a developmental disorder which causes him to behave differently from others. They must individualize their approach to working with the child and may need to provide educational support services. The school counselor should be involved as well to assist the child in developing social skills and to provide emotional support.
In the classroom, it has been suggested that: the child should have consistent and structured routines; rules and guidelines should be clearly expressed; teachers should take advantage of the childs special interest by incorporating it into the teaching process; visuals should be used (charts, pictures, lists); simple communication should be used (avoid sarcasm and figurative speech); the teachers should ensure that all other adults coming in contact with the child are aware of his needs; and power struggles should be avoided, as the children will just become more stubborn and uncooperative.
While active speech therapy is typically not needed, it may be helpful for the schools speech pathologist to assist the teacher in finding ways to address language problems. In addition, if the child exhibits motor clumsiness, an occupational therapist may be able to provide some assistance with improving motor skills.
In some cases, medication may be necessary, particularly in the older child, to help with anxiety, depression, inattention problems, significant compulsive problems, or ritualistic behaviors.
What to Expect
Individuals with AS can have symptoms ranging from mild to severe. Although the problems and symptoms seen in individuals with AS change over time, AS is not a disorder that can be "outgrown." Problems are often first noted when the child enters preschool. There may be the tendency to avoid social interaction, problems with sustaining conversation, repetitiveness when conversing, odd verbal responses, preference for a routine, difficulty with social/emotional responses, hyperactivity, aggression, appearance of being in their own world, and the tendency to focus on objects.
When the child is ready for kindergarten, it is likely that he or she will be in a mainstreamed educational setting. The child may be thought of by others as odd or unusual. For the child with severe problems, a special education setting may be recommended. For most, academic progress is quite good in the elementary years. The child may begin to show an interest in developing relationships, however, their skills in making and keeping friends are typically weak.
As the child moves into middle school and high school, the problems continue to exist in socialization and behavioral adjustment. At this age, and because most children with AS are in mainstreamed educational settings, they are often misunderstood by teachers or other students. They may be mistreated, left out, and teased by their peers. Outbursts and lack of cooperation are often seen in the child with AS due to the desire, but inability, to fit in; depression is not uncommon. Academic performance usually continues to be strong. This can benefit the child, as in high school, they may be accepted and develop friendships with the group of "smart kids" or "nerds."
As the child enters adulthood, it is likely that he or she will function independently. It is common for adults to find a career that fits their special interest. Many individuals with AS do marry, however, the social and emotional aspects of the relationship can be particularly challenging. Adults with AS also sometimes experience depression and anxiety.
We are a family of 6. My husband, John, and I have four sons, two of whom have Asperger syndrome. Our eldest son, Bradley, started having seizures at 2 days of age while still in the hospital. As he was born in a small country town (Katherine, Northern Territory, Australia) he and I were airlifted to Darwin where he spent a week in the neonatal intensive care unit. Placed on Phenobarbitone to control seizures, Bradley was a quiet baby.
At 6 months, he happily sat doing puzzles alone. Screaming sessions following his dose of Phenobarbitone every evening was attributed to evening colic. At our insistence, he was weaned from the drug but within a few months, had several seizures and was again put on anticonvulsants. At 17 months of age, he had taught himself the alphabet and delighted in picking out letters in shopping centers. At 4 years of age, following 2 major seizures, he lost his speech and when it returned a few days later, it was limited and repetitive such as "I, I, I... want, want, want... a, a, a... drink, drink, drink." Six months of intensive speech therapy followed and Bradley regained his voice, but still tended to be a child of few words. He had by this stage been joined by 2 younger brothers, so life was busy.
Bradleys first preschool teacher was happy to let him sit and play with blocks for his entire session, so we had him moved to the head teachers class where he was really nurtured. One day the teacher commented, "It is almost like he's autistic," but that is as far as it went because her and my knowledge of autism was limited. Any questions about his development to the pediatrician were met with "It is because of his epilepsy," or one day the throw away line, "Well he has ADD." So, Bradley moved on through school, becoming the computer genius in every class.
We moved often because of work and the boys all handled moving well. Once we settled in South Australia I started work as a relief teacher and worked in a class where I was warned that there was an autistic boy. It just happened to be the day that the Autism Association was doing observations on this 5 year old boy. At the end of the morning session, the observer said I was doing great and asked what I thought of him, to which I replied, "That was my son at 5." Bradley was, at this point, 8 years old. So, following further discussion, Bradley was seen by his pediatric neurologist (who was only concerned with his epilepsy), referred to a child psychologist (where he failed an IQ test), and then to the Autism Association for an assessment. Following a nine month wait, Bradley was diagnosed with Asperger syndrome at 9 years and 1 month of age in July 1996.
Bradley has remained on Tegretol to control seizures, which are fairly well-controlled at present. This year Ill be homeschooling him, as I have been unable to find suitable school placement for Bradley for high school. We covered the whole spectrum with Bradley from moderately mentally disabled to gifted and talented - he doesn't really fit any box intellectually. Eye contact and speaking are difficult for him. He just learned to tie his shoes at nearly 13, but has been reading text books for pleasure since he was 7, and he can remember streams of HTML and memorizes web site addresses, but can't yet remember where we keep milk, clean towels or in which order he should do things.
As Bradley had seizures, several hospital stays and surgeries, prior to diagnosis, the three younger boys had to grow up fast in some respects. We experienced behavior problems with our second son, Justin. Tantrums, biting himself, and running away from school at every opportunity were attributed to his reaction to Bradley being the focus of attention. We were getting concerned that some of Justin's behaviors were resembling Bradley's, but again thought maybe he was just feeling left out. Grandparents suggested quality father/son time, which we tried, and special days off from school for no reason turned Justin into a calm, relaxed, happy boy. But it wasn't until early 1999 when son number 3 said, "It's like I have 2 brothers with Aspergers," that we really took notice. Digging out the paperwork from Bradley's assessment, I noted that on working through a checklist of behaviors associated with Asperger syndrome, I had marked areas for both Bradley and Justin, in an attempt to determine at the time that Bradley was just like his brother and didn't have Asperger syndrome. So, I undertook the same exercise using Justin's younger brothers, Simon and Shane, as comparisons. The areas I had checked for Justin still applied, but his brothers didn't fit the behaviors. I contacted the Autism Association and Justin was placed on a priority list, as he had a sibling with AS. About 6 months later, Justin was assessed and diagnosed, 3 days before his 10th birthday. He finished the school year but will be homeschooled with Bradley. Justin always said he hated school. Talking with him, I found that school has been a huge stress: too noisy, no friends, too much movement, and he can't keep up physically and shuts down mentally because of over-stimulation.
The 2 youngest boys will continue with public school as they are social animals and love school. All kids are different and that is the same for kids with Asperger syndrome - our two are proof of that. As parents, I think we just have to do the best we can, as we are our children's greatest advocates. - Sandra Walter
My son is nearly 15 years old. He was diagnosed with AS at age 10 while still in primary school here in the U.K. The diagnosis was a great relief to him as well as us. He finally understood why he was so different from his contemporaries at school. "I'm officially different," he said. I finally understood why this incredibly bright child couldn't handle apparently simple social situations when other bright kids seemed to be doing fine.
My advice is to keep talking! The last thing people with Asperger syndrome want is social interaction. "Just leave me alone" is a common cry. DON'T! When my son was small, he used to curl up in a ball when he was angry or upset and I used to pull him out of his corner and hold him and tell him I loved him. As he got bigger, it was harder and harder to do and I suffered several bruises as he kicked and hit (sometimes even bit) me. I have battled with the teenage equivalent recently. The breakthrough moments make all the rest worthwhile. You need all the empathy God has given you to know when its really time to let it rest and when you need to press in. Also, be at home when your child comes in from school. My son used to walk in through the kitchen and up to his room and there was just a subtle difference in the humph that came after a bad day and after a good day. On the bad days, I would follow him and ask what happened. He didn't ever want to talk about it but I would make him. Then I would tell him how he should handle those sorts of situations next time. He never understood, and always thought I was telling him off. Nevertheless, I have seen the fruit in his ability to handle social situations now.
Hes had several success stories: the day he 'saw' that a friend was embarrassed and moved to intervene in the situation to prevent further embarrassment; the times we see him with his arm around a younger child at church when there has been a fight; and the spontaneous hugs I get from time to time (a bit wooden but hugs no less). Because I know about the difficulties he faces, I can congratulate him on these successes. They are all learned behaviors, not intuitive, so he deserves lots of praise. The good news is that high intelligence is common in children with AS, so they can be taught. - Judy Brunton
If you are interested in meeting other parents and individuals who are involved in raising a child with Asperger syndrome, the following listservs are available:
Asperger Listserv - To subscribe, send a message to firstname.lastname@example.org and include your name, e-mail address, and reason for your interest in the group. You will then receive an e-mail with more information on how to subscribe.
FAAAS Discussion list - To subscribe, click here: http://www.faaas.org/mailinglists.html
For more information on Asperger syndrome, please see the following references:
- Online Asperger Syndrome Information and Support http://www.udel.edu/bkirby/asperger
- Asperger Syndrome Education Network http://www.aspennj.org
- Center for the Study of Autism http://www.autism.org/asperger.html
- Families of Adults Afflicted with Aspergers Syndrome http://www.faaas.org/factsheet.html
- National Institutes of Health http://www.ninds.nih.gov/health_and_medical/disorders/asperger_doc.htm
- Autism Society of America http://www.autism-society.org/packages/aspergers_disorder.pdf
The Disorder Zone has been created for educational purposes only and is not intended to serve as medical advice. The information provided in The Zone should not be used for diagnosing or treating a health problem or disease. It is not a substitute for professional care. If your child has any health concerns, please consult your health care provider.
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