A parent's perspective. Includes full DSM-IV criteria and short history of the entity.
Culture and popular opinion can lag behind science. Many are still afraid of dealing with autism-spectrum people because they think it is a mental illness, although mainstream physicians no longer consider it one. Today we know that this is a neurological condition, which seems to affect males more than females.
Functional MRI's show differences in brain development that may continue up to the age of 20 and perhaps beyond. Still the popular notion of what it is makes it sound like some amorphous mental illness as in the latest entry for autism in The American Heritage Dictionary: A psychiatric disorder of childhood characterized by marked deficits in communication and social interaction, preoccupation with fantasy, language impairment, and abnormal behavior, such as repetitive acts and excessive attachment to certain objects. It is usually associated with intellectual impairment.
Many of those with autism spectrum disorders would disagree with that last statement -- see http://www.writing.com/main/view_item/item_id/986999. Based on their I.Q. scores many are in the genius range (greater than 130).
Asperger's is historically a psychiatric diagnosis, but it doesn't mean someone who has it is "crazy" or emotionally disturbed. The field of psychiatry makes diagnoses according to an Axis system and the place of Asperger's within the system is virtually unknown to most teachers, in my experience. Axis one includes clinical presentation (e.g. bipolar disorder) and Axis two describes developmental and personality disorders. Asperger's is not a personality disorder, but it is considered a developmental disorder. Most teachers don't know this and sometimes treat Asperger's kids as though they had an Axis one disorder or a personality disorder. This may be the source of a lot of misunderstanding. Trying to explain the difference to educators can be a frustrating and mystifying experience.
For practical everyday purposes, here is an increasingly accepted definition that I have found useful in working with my son:
Autism (which includes Asperger's) is a communications disorder characterized by social impairment.
If you work or live with someone who has Asperger's I recommend you post this where you can see it all the time or just burn it into your brain. If you are not using this operative definition things will not go well. Social impairment results from problems in communicating, not the other way around. Visual or auditory cues may take a long time to process or may not process at all. Information may be taken literally. Things may have to be repeated repeatedly. Once the communication difficulty is taken care of things go much, much more smoothly. Learning accelerates. People smile.
The experience of raising an Asperger's child is complicated by what doctors call "co-morbid" conditions that seem to be brought on by their chronic problems. Frustrations, teasing and social unacceptance can cause depression, anxiety, obsessive-compulsive behavior. Many times ADHD is also involved. Sometimes it feels like a long tangled string which can never get straightened out.
For example, Asperger's and Nonverbal Learning Disorder can sometimes look exactly alike and although therapies for each are quite similar, some private schools, in my experience, will not take Asperger's kids, but will take those with Nonverbal Learning Disorder. A diagnosis of Asperger's can trigger more public school funding for a child, but at the cost of getting labeled. The main difference between Asperger's and NLD (Nonverbal Learning Disorder) seems to me to be the presence of "self-stimming" in Asperger's kids. This is a seemingly nonfunctional repetitive motor behavior. And sometimes it can show up only at home. This is the consensus of an article published in the June 2004 issue of the journal of Developmental and Behavioral Pediatrics.
So what is Asperger's? Currently its definition is based on criteria published in the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision. This appears to be the most authoritative description I can find.
The medical profession (DSM-IV TR) lists specific criteria for a diagnosis and more and more people seem to be fitting these characteristics for Asperger's:
A. Qualitative impairment in social interaction, as manifested by at least two of the following:
(1) 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
(2) failure to develop peer relationships appropriate to developmental level
(3) 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)
(4) 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:
(1) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
(2) apparently inflexible adherence to specific, nonfunctional routines or rituals
(3) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)
(4) 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.
--from Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Text Revision
It's not easy taking care of someone with Asperger's but perhaps the best we can do is keep as informed as possible. If this article helps at least one parent or teacher understand a little more then it will have been well worth the effort.