AASCEND.net is maintained by James Ullrey, who has Asperger Syndrome. His website is
The AASCEND logo was designed by painter-photographer Sharron Loree, who has Asperger Syndrome. Online gallery at www.loree.org
What are Autism and Asperger Syndrome?
Autism is a neurological condition in which individuals experience difficulties
in social interaction and communication skills, along with a tendency
to show repetitive behaviors or interests. A life-long condition, autism
interferes with individuals understanding what they see, hear, and
otherwise sense. This often results in serious problems carrying out
social relationships and communication. Individuals with autism have
to learn normal patterns of speech and communication, and appropriate
ways to relate to people, objects, and events. This is frequently a
painstaking process.
The severity of autism varies greatly, from individuals with little
speech and poor daily living skills, to others who function well in
most settings.
Asperger Syndrome (AS) is often described as a milder form of autism.
Characteristics of AS include clumsy and uncoordinated motor movements,
limited interests or unusual preoccupations, repetitive routines or rituals,
and non-verbal communication problems including speech and language peculiarities.
Consistent findings from tests and evaluations show that individuals
with AS have difficulty interacting socially and with planning, multi-tasking,
and transferring a specific skill to a different task. Asperger’s
is commonly recognized only by or after the age of 3.
The range of autism-like conditions is frequently called the “autism
spectrum.” The autism spectrum includes autism and Asperger Syndrome
(AS), as well as related conditions known collectively as Pervasive Developmental
Disorders, or PDDs. Autism can occur by itself or in association with
other developmental conditions such as learning difficulties and epilepsy. “Neurotypical” or “NT” refers
to people not on the autism spectrum; that is, people who do not have
autism or Asperger Syndrome.
Our knowledge about autism and Asperger Syndrome is still limited. Few
professionals anywhere really know and understand the full range of conditions
on the autism spectrum. Since it is such a new field, the education process
has not yet incorporated it into professional training. Until recently,
it received only a cursory mention in textbooks, and too few knowledgeable
professionals serve as instructors. As a result, in many cases the diagnostic
label does not summarize a person, take into account the individual's
strengths and weaknesses, or provide the kind of individualized intervention
that will meet those needs.
Some people with autism or AS have produced their own work describing
autism and Asperger’s that is independent from the scientific establishment.
This material provides good insight into the autistic condition. For
example, the web site “Ooops...Wrong Planet! Syndrome” has
excellent descriptions of autism from the points of view of autistic
people themselves.
When were autism and Asperger Syndrome first described?
Dr. Leo Kanner first described autism as a specific condition in a paper
published in 1943. A year later in 1944 an Austrian pediatrician, Hans
Asperger, published another paper that first described a similar condition
that later became known as Asperger Syndrome. These landmark papers were
the first attempts to explain autism and Asperger’s. Although initially
unaware of each other's work, both Kanner and Asperger used the word "autistic" to
characterize the children they observed. This term had been introduced
by Swiss psychiatrist Eugen Bleuler in 1911 to describe the extreme withdrawal
from the outside world into the self, which he identified as the basic
disturbance in schizophrenia.
Both Kanner and Asperger independently recognized that, in contrast to
Bleuler's schizophrenia, the difficulties in entering affective relationships
with others seemed to be present from the beginning among their patients.
Unlike the "autism" of schizophrenia, typified by a progressive
loss of contact with the external world, Kanner’s and Asperger's
patients exhibited this difficulty early in life and with a consistent
and chronic, rather than progressive, course.
Asperger described a number of cases whose clinical features resembled
those of autism. However, Asperger's description differed from the autism
cases in that speech was less commonly delayed, motor deficits were more
common, the onset appeared to be somewhat later, and all his initial
cases occurred only in boys. Asperger also suggested that similar problems
could be observed in family members, particularly fathers. Because Asperger
wrote in German and published his findings in wartime Vienna, his work
was largely unknown outside Europe in the era following World War II.
Asperger’s original paper was not completely translated into English
until 1991 by the German-born British psychologist, Uta Frith.
In the 1950s and 1960s, autism was considered a psychological disturbance
rather than a neurological phenomenon, and was blamed on supposedly detached “refrigerator
mothers”. This theory was conceived and promoted by Bruno Bettleheim,
an Austrian psychoanalyst at the University of Chicago. Bettleheim had
survived Nazi concentration camps and saw parallels between the behaviors
of autistic children and those of fellow prisoners in response to the
coldness of the guards at Dachau and Buchenwald. The refrigerator mother
theory resulted in a generation of autistic children being subjected
to “therapies” now considered horrific. Until Bernard Rimland,
an American psychologist and father of an autistic son, began systematically
challenging this predominant view in the 1960s, countless mothers and
families of autistic children were harmed by the arrogance of psychiatry
during this era. Bettleheim committed suicide in 1990 and is now known
to have fabricated case histories and other data to support his theories
about autism, which have since been thoroughly discredited and abandoned.
An influential review and series of case reports was published in 1981
by British psychiatrist Lorna Wing, herself a parent of a child with
autism, when she ran across Dr. Asperger's article and named the syndrome
in honor of Asperger. Dr. Wing’s article increased interest in
the condition, and since then both the usage of the term in clinical
practice and the number of case reports and research studies have been
steadily increasing.
The movie Rainman, which depicts a very specific, limited portrayal
of autism, is still what many people think of when they hear the
word autism.
Throughout the 1990s, popular books by British neurologist, Oliver
Sacks, and Dr. Temple Grandin, perhaps the most famous and successful
autistic
person in the world, helped to increase public understanding of autism
and related conditions. And since the early 1990s, people with autism,
family members, and therapists have begun to form support and advocacy
groups. These groups tend to advocate for increased research on the
causes and treatments for autism, address the concerns of individuals,
family
members and friends, and help to educate the general public about these
conditions.
What are some of the characteristics of autism and Asperger Syndrome?
The degree of severity of characteristics differs from person to person,
but usually includes the following characteristics identified by researchers
at the University of North Carolina and adopted from their TEACCH web
site entitled “Autism Primer: Twenty Questions and Answers.”
A. Delays in language development – Language is slow to develop,
if it develops at all, and usually includes peculiar speech patterns
or the use of words without attachment to their normal meaning.
B. Delays in understanding social relationships – An autistic person
often avoids eye contact, resists physical contact, and seems to "tune
out" the world around him.
C. Inconsistent patterns of responses to sights, sounds, touch and smells – An
autistic person may at times appear to be deaf and fail to respond to
words or other sounds, may show an apparent insensitivity to pain and
a lack of responsiveness to cold or heat or may be distressed by an everyday
noise.
D. Uneven patterns of intellectual functioning – An autistic individual
may have peak skills and be able to carry out some activities very well.
However, the majority of autistic persons have varying degrees of learning
difficulties, with only 20 percent having average or above-average intelligence.
E. Repetitive behaviors – An autistic person may carry out repetitive
body movements and demonstrate repetition by following the same route,
the same order of dressing, or the same schedule every day. Changes in
routine can be very distressing.
In its milder form, autism resembles a learning disability. Usually,
however, even people who are only mildly affected experience difficulties
in the areas of communication and socialization.
(For more information on autism characteristics, go to the TEACCH web
site at: http://www.teacch.com/20ques.htm)
Beginning in 1994, Asperger Syndrome characteristics were spelled out
in the Diagnostic and Statistical Manual (DSM) of the American Psychiatric
Association. According to the DSM, an individual with AS shows
A. Qualitative impairment in social interaction
B. Restricted repetitive and stereotyped patterns of behavior, interests,
and activities
C. Clinically significant impairment in social, occupational, or other
important areas of functioning
D. No clinically significant general delay in language (e.g., single
words used by age 2 years, communicative phrases used by age 3 years);
and finally
E. 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
A number of web sites contain the complete DSM-IV description of AS and
autism. One such site is at:
http://www.behavenet.com/capsules/disorders/autistic.htm
While the DSM characterization of Asperger Syndrome provides an "official
view" of AS characteristics, many clinicians who have seen a large
number of autism spectrum individuals since 1994 disagree about the accuracy
of the DSM-IV criteria. The 1994 criteria were developed after studying
a relatively small number of persons. Since then, much more has been
discovered about AS. These clinicians are exerting strong pressure on
the editorial board of the DSM-V, scheduled for publication in late 2005
or early 2006, to revise the criteria to better fit what sensitive diagnosticians
have observed to be true with thousands of late-diagnosed children and
adults.
One of these clinicians, Christopher Gillberg, a Swedish physician who
has studied AS extensively, has proposed a simpler scheme composed of
six criteria for the diagnosis:
1. Social difficulties including inability to interact with peers
2. Limited interests and preoccupations including rote learning and repetition
3. Repetitive routines or rituals that may be imposed on self or others
4. Speech and language peculiarities, such as peculiar voice characteristics
5. Non-verbal communication problems, such as clumsy body language, motor
clumsiness in some cases
(More details on Gillberg’s scheme can be found in the “Asperger
Syndrome” article by Stephen Bauer, MD, MPH on the O.A.S.I.S. web
site at:
http://www.udel.edu/bkirby/asperger/as_thru_years.html
Sounds or visual stimuli that are tolerated by normal adults may cause
pain, confusion and/or fear in some on the autism spectrum. Hypersensitivity
to noise can vary from very slight to severe. An individual who frequently
covers the ears may be sensitive to noise. Those who flick their fingers
in front of their eyes are likely to have visual sensitivity problems.
Despite auditory and/or visual sensitivities, hearing and vision tests
are usually normal. Older children and adults who remain nonverbal and
have very little language often have greater sensory sensitivities and
aversions than individuals with more typically developed language.
How does Asperger Syndrome differ from autism?
Clinicians and researchers know that autism and AS have many similarities,
but the limitations in our knowledge still prevent an authoritative
answer on how the two conditions differ. To some extent, the answer
depends on the way clinicians and researchers use the concepts to diagnose,
since until the early 1990’s there was no standard definition
of AS. The lack of a commonly agreed-upon definition led to a great
deal of confusion:
- Clinicians tended to use the labels based on their own interpretations
of what autism or Asperger Syndrome "really" meant;
- Researchers could not readily interpret other researchers' findings;
and,
- Individuals on the autism spectrum and family members were often faced
with a diagnosis that nobody appeared to understand very well or know
what to do about it.
As a result of this, clinicians and researchers simply characterize AS as “being on the mild end of the autism spectrum.” Until recently:
- School districts were not aware of the condition;
- Insurance carriers would not reimburse services
provided on the basis of this "unofficial" diagnosis; and,
- Little published information existed to provide guidelines on the meaning
and implications of AS.
Our understanding of these conditions is beginning to improve, however, as increased funding becomes available for research supported by government and foundations, and a growing number of books and publications are now appearing. Some of these publications are listed in the “recommended reading” section of this web site.
What causes autism spectrum conditions?
Autism is a brain condition, present from birth, which affects the way
the brain processes information. In 1995, the National Institutes of
Health (NIH) concluded that autism probably results from a genetic
susceptibility that involves multiple genes.
A variety of factors could be associated with some forms of autism, including
infectious, metabolic, genetic, neurological, and environmental factors.
Scientists estimate that, in families with one autistic child, the risk
of having a second child with the condition is greater than the risk
for the general population. One prominent area of speculation is that
mercury, used as a preservative in childhood vaccines, may act as a co-agent
in triggering a genetic predisposition towards developing autism, though
this continues to be vigorously debated.
What is the prevalence of autism spectrum conditions?
In 2003, a detailed, federally supported study was published on the prevalence
of autism spectrum conditions among children aged 3 to 10 years in metropolitan
Atlanta. Using 1996 data, that study showed the prevalence for autism
was 3.4 per 1000, with a male-female ratio of 4 to 1. The study did not
show a major increase in autism compared to studies done in the 1980s
and early 1990s. Whereas autism has traditionally been believed to occur
in about 3 to 4 out of every 10,000 children, estimates of Asperger Syndrome
have ranged from 20 or 25 to as high as 40 per 10,000.
Studies commissioned by the California Legislature confirmed a sharp
increase in the number of school-aged children with autism-related conditions
in California. From 1998 to 2002, the number of documented California
autism cases doubled from 10,360 to 20,377 according to a 2003 study.
Extrapolating, this would mean at least 425,000 American children under
18 have some form of autism and over 3,000 San Franciscans are on the
autism spectrum! Moreover, the studies indicate that the increase in
reported cases cannot be explained by shifts in the diagnostic criteria.
If one includes children who have many of the features of AS and seem
to be milder presentations along the spectrum, autism seems not to be
a rare condition at all.
Studies in other countries show a similar increase worldwide. Research
that addresses the causes of this increased prevalence and the complex
issues related to the etiology of autism are underway. Autism is distributed
throughout the world among all races, nationalities, and social classes.
No group or ethnic population is immune from autism-related conditions.
Although Asperger originally reported AS only in boys, we now know that
girls and women are commonly found with this condition. Nevertheless,
studies show that boys are significantly more likely to be affected.
How are autism and Asperger Syndrome diagnosed, and who can make a diagnosis?
Currently, no single medical test exists that will definitively diagnose
autism spectrum conditions. Neither AS nor autism can be diagnosed by
looking at a blood sample or performing a brain scan. Although these
are physical, neurological conditions, researchers are still looking
for genetic or other physical causes that may lead to a definitive test.
Short of this, the diagnosis is made on the basis of observable characteristics
of the individual. Because of its earlier onset, autism is usually diagnosed
in childhood. Most children start showing symptoms of autism at about
18-24 months, when a parent may raise concerns with a physician. The
most common age for diagnosis is between three and four years, though
some children may not be diagnosed until the age of 12.
People with Asperger Syndrome, and/or their parents, may be aware for
some time that their behavior, or that of their children, is different;
but it may be years before they identify the pattern of behavior as consistent
with the AS. Mild autism spectrum conditions such as Asperger's are often
not noticed until the child starts school, because many aspects of their
development are typical. At school, poor social skills are more noticeable,
and challenging behavior may arise. Several sets of criteria or rating
scales can be used to diagnose Asperger Syndrome, including questions
about social and emotional behaviors, communication skills, learning
abilities, movement skills, and special interests. A screening tool used
in the U.K. – the “Checklist for Autism in Toddlers” – has
been shown to be highly effective in predicting which children will develop
autism, Asperger Syndrome, or other related conditions.
What treatments are available?
There is currently no “cure” for autism spectrum conditions,
but appropriate treatments can often help. Educational or behavioral
therapies and drug interventions are designed to remedy specific symptoms.
Treatment may include psychotherapy, parent education and training, behavioral
modification, social skills training, educational interventions, and
medications for specific behavioral symptoms. Other educational interventions
include Applied Behavioral Analysis, the Eden Model, the T.E.A.C.C.H.
method, Lovaas, and most recently, Rapid Prompting Mechanism, developed
by Soma Mukhopadhay with her son Tito. All of these therapies emphasize
highly structured and often intensive skills-oriented training. Treatment
programs vary greatly because each must be tailored to the needs of the
particular individual, and to each individual’s unique strengths
and weaknesses.
Medications can be effective in reducing many of the difficult symptoms
of AS. Physicians who have had experience working with individuals on
the spectrum are necessary to insure effective treatment with medication.
Unless the doctor sees an immediate medical need for them, medication
should not be the first thing considered following the initial diagnosis.
Moreover, medication should not be used as the only method of treatment,
if at all. It must be integrated into a program that includes educational,
behavioral and psychological supports. No one medication works for everyone;
rather, a variety is available for a range of symptoms; for example:
severe anxiety, attention problems, obsessive thoughts or actions, depression,
and hyperactivity.
Some parents of children with autism have embraced diverse dietary
therapies. Among the most prominent are glutein-free and casein-free
diets, various
vitamin regimens, discrete trials, sensory integration.
Finally, mentors can help teenagers and young adults with high functioning
autism or Asperger Syndrome to develop their talents into career skills.
For instance, mentors can teach computer programming or graphic arts.
Often, the mentors are individuals who themselves are on the autism spectrum.
AUTASTICS, an organization closely affiliated with AASCEND, is a good
source for locating mentors in the San Francisco Bay Area.
Many adults on the autism spectrum object to the emphasis on finding
a cure, and to describing autistic and Asperger’s conditions in
terms of problems and deficits. Why, they ask, is there not more being
done to assist people with autism and Asperger Syndrome in education,
employment, housing, and other areas? A growing number of websites and
publications are devoted to “autistic culture” and promoting
autistic traits as gifts.