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Educating Others about Asperger's Syndrome:

Through Another's Eyes

My name is Michael Anthony Ault, and I have Asperger's Syndrome. Asperger's


Syndrome was discovered in 1944 by Viennese pediatrician Hans Asperger. He
originally called it Autistic Psychopathy and 'politely' called it a 'personality'
disorder. As its name implied, Han's Asperger would have you believe that people
with this disorder were psychopathic through Autism. I can openly tell you that we
are not. I have come to tell you what Asperger's really is, through my own eyes.

In 1944 Hans Asperger, a Viennese pediatrician, first described a syndrome that


he considered as a personality disorder. He called it autistic psychopathy in
childhood. Later in the mid 1980’s Autistic Psychopathy had finally gained enough
attention to be recognized as a single disorder: Asperger’s Syndrome.

Here are the basic diagnostic criteria for having Asperger’s Syndrome as stated in
Asperger’s Syndrome: a Guide for Parents and Professionals,

‘1. Social impairment (Extreme egocentricity)


(At least two of the following):
A. Inability to interact with peers.
B. Lack of desire to interact with peers.
C. Lack of appreciation of social cues.
D. Socially and emotionally inappropriate behavior.

2. Narrow interest
(At least one of the following):
A. Exclusion of other activities.
B. Repetitive adherence.
C. More rote than meaning.

3. Repetitive routines
(At least one of the following):
A. On self, in aspects of life.
B. On others.

4. Speech and language peculiarities


(At least three of the following):
A. Delayed development.
B. Superficially perfect expressive language.
C. Formal pedantic language
D. Odd prosody, peculiar voice characteristics
E. Impairment of comprehension including misinterpretations of literal/implied
meanings.’

There is a lot of debate as to where Asperger’s counts on the Autism Spectrum,


some people say that it is a High-Functioning Autism, while others say that it is a
Pervasive Developmental Disorder, it is currently impossible for any of us to know
for sure.
Asperger’s Syndrome can usually be hard to recognize because of its all-too-
common ‘symptoms.’ As a result, most that have it are misdiagnosed as having
ADD, ADHD, or a multitude of other disorders. They include Social Impairments;
Narrow, Intense Interests; Speech and Language Peculiarities; and several ‘Other
Characteristics.’

In the regards of Social Impairments, most people will notice that we ‘fail’ to have
emotion. That is simply not true. We do not ‘fail’ to ‘have’ emotion; we fail to
‘express’ emotion. We have what is now commonly referred to as ‘mind-blindness.’
We fail to see the simple signs and gestures that everyone else takes for granted.
As a result: We tend to over-exaggerate emotions. What you might think is a slight
irritation, we see as overpowering RAGE. We are different, and it is that difference
that causes those that are ignorant to mock us for our pedantic speech, our intense
interest, and all other things that are the result of our ‘difference.’

Living with Asperger’s can be somewhat irksome, as it is difficult to get along with
others. According to Asperger Syndrome: through the Lifespan, ‘In middle school,
where the pressures for conformity are greatest and tolerance for differences the
least, children with AS may be left out, misunderstood or teased and persecuted.
Wanting to make friends and fit in, but unable to, they may withdraw even more, or
their behavior may become increasingly problematic in the form of outbursts or
non-cooperation. Some degree of depression is not uncommon as a complicating
feature. If there are no significant learning disabilities, academic performance can
continue strong, particularly in those areas of particular interest; often, however,
there will be ongoing subtle tendencies to misinterpret information, particularly
abstract or figurative/idiomatic language. Learning difficulties are frequent and
attentional and organizational difficulties may be present.’ I know exactly what that
means, because I think differently and do not understand what others are trying to
say, nonverbally, of course, that I was doomed to be the “weird” one. If you want an
example, then you try being a Pokémaniac in a school where Pokémon was banned,
literally, from all aspects of your life.

We are also infamous for our Narrow, Intense Interests. For instance, I am called a
Pokémaniac, a fanatic of Pokémon. If you were to ask me a question about a certain
“Pocket Monster,” odds are I will be able to answer it and then some. As a result, I
was the “Pokémon Professor” in my neighborhood. I am not over-obsessed, I just
happen to be a fan of all things Sci-fi. Then again, there is a fine line between hobby
and mental illness (statement from an Expertees T-shirt I found.) That, my friends,
is a sign of wordplay, a common form of humor for someone with Asperger’s.
However, few people find what we see as funny, and as a result find some things
we don’t see as funny as hilarious.

Speech and Language peculiarities are also another form of our ‘syndrome.’ We
tend to use an over-formalization in almost everything. If asked the time, I will say,
“Two forty-five and fifty seconds,” even though “Two forty-six” would have done
just as well. At times, I have extreme difficulty trying to keep myself from saying
things like Sifu (teacher,) or Sama (Master [same context as teacher.]) That is
because I study various parts of different languages, origins, and meanings of
words. Most people, as a result, will not understand what either I am saying or what
I am trying to say.

As a part of Other Characteristics, People with Asperger’s Syndrome tend to be


innately clumsy, so they are terrible at sports. We also have extreme sensitivity to
certain types of light, sound, and other sensory stimuli.

Although it could fit in the Social Impairments section, I will add this to the ‘Other
Characteristics.’ It is extremely difficult for us to express emotion at all. However, it
is possible for us to ‘unlock’ the door, at the cost slightly akin to opening the
floodgate of the Hoover Dam. When our emotions are ‘unlocked,’ we express our
emotions at about three to ten times greater than any other person will. As a result
of this impending ‘flash flood,’ I (and probably many others like me,) try to ‘relock
the door that is our self control’ and refrain from showing emotion. Unfortunately,
that door is never truly relocked; it is merely closed to a crack. If enough pressure
from emotional stress is placed on the door, all of our emotions come flooding out.
Due to most of these releases being Anger, many experts call this release of
emotions Rage Attacks, Meltdowns, or Neurological Storms (From Asperger’s
Syndrome and Difficult Moments.)

During a ‘Neurological Storm,’ we do not intentionally mean to hurt anyone. When


we are under the ‘Rage,’ we tend to strike at the first thing we can get our hands
on. If someone has insulted us and are within range, we might not go at them in
favor of a more “tempting” target. Example: Someone with Asperger’s Syndrome
was already mad, and then a person insulted him or her in passing. The person
goes into a ‘Hulk’-like state, but instead of going for the person who delivered the
insult, went after someone who they were already mad at that was just a little bit
farther away.

Because we keep so introvertedly to ourselves and do not make ‘waves,’ people


will see us as the true instigators of fights. I have been told time and again that I
am extremely mean and overly critical. That is because they only see the parts I
reveal, and, being secretive, show myself off as the villain, instead of the victim.
The disorder is just as disdained as many others, but it does have quite a few
benefits, causing some scientists to believe that it is a ‘favorable problem.’ Because
of our memories being quite sharp in the areas of our interest, we are excellent at
mathematics and other sciences. A few of us, when inspired, can do quite well in
the Medias.

As quoted from Wikipdia.org, ‘Recently, some researchers such as Simon Baron-


Cohen and Ioan James have speculated that well-known figures of the past, such as
Albert Einstein and Isaac Newton, had Asperger syndrome because they showed
some Asperger's-related tendencies or behaviors, such as intense interest in one
subject, or social problems. A chapter of the aforementioned Gillberg book is
devoted to this subject, including a detailed case study of philosopher Ludwig
Wittgenstein concluding that he met the criteria for the condition. However, such
posthumous diagnoses remain controversial.

The specific arguments alleging that certain famous people might be on the autistic
spectrum vary from person to person. Some claim that Albert Einstein (one of the
more frequently cited figures of the past as possibly autistic) was extremely
antisocial as a child, had violent temper tantrums, tended to repeat phrases or
sentences over and over under his breath, and had extreme difficulty functioning
without the aid and supervision of a "parent" figure (usually his wife), all
characteristics typical of autistic people. Isaac Newton stuttered and was epileptic.
Many of these suspected historical Asperger cases might have been quite mild, but
some skeptics believe these people may have had a few autistic traits but not
enough for an autism spectrum diagnosis. Finally, many critics of historical
diagnosis claim it is simply not possible to diagnose the dead, so nothing can be
said definitively regarding the Asperger status of historical figures.’ It is possible
that Einstien and Newton did have Asperger’s Syndrome, but it is just as possible
that people like myself feel that we need to come up with an ‘excuse’ for our
difference when none is really needed.

Many famous people in the media businesses have and/or claim to have Asperger’s
Syndrome, Among them are my heroes Dan Aykroyd, the creator of Ghostbusters
and Satoshi Taijiri, the creator of Pokémon.

Dan Aykroyd originally wrote Ghostbusters as Ghost Smashers, a story in which a


‘group’ of ‘Ghostbusters’ travelled across time and space capturing spectral
entities. He played Dr. Raymond Stantz, a Professor of metallurgy, architecture, and
psychokinetic phenomina. He shows his Asperger’s off through-out the entire
movie, showing his child-like excitement about finding ectoplasmic slime instead of
showing sympathy for his friend who had gotten ‘slimed.’

Satoshi Taijiri was constantly picked on as a child for his ability to catch and collect
insects as a child. He was called ‘Dr. Bug’ by his ‘friends’ and went on to become
obsessed with video games while in Electronics School (his father wanted him to
become an electrician, a job Satoshi didn’t want.) Rumor has it that he went to one
arcade so often, that the owners gave him a ‘Space Invaders’ game to take home.
He started up ‘Game Freak,’ a gaming magazine that gave out many tips and tricks
in video games. When he saw the Game Boy, he remembered how he loved to find
out new ways of catching insects and turned turned that memory into Pokémon, a
game in which the main character went around catching and raising different
monsters/animals.

Many of us with Asperger syndrome generally refer to ourselves in casual


conversation as the more affectionate "aspie" or "aspy". Others prefer "Aspergian,"
"Asperger's autistic," or no name at all. Many who think there is no significant
difference between Asperger syndrome and autism because of the spectrum-
analogous variances in autism may prefer the term autie or just autistic as a more
general term.

To refer to ourselves as a group, many of us with Asperger syndrome use the term
neurodivergent, which comes from the fact that professionals consider Asperger
syndrome a neurological disorder. To refer to people who are non-autistic, many
use the term neurotypical (NT). In addition, people who seek a cure for autism are
sometimes pejoratively called "curebies."

So we ‘aspies’ are sensitive to different degrees of stimuli. We are pendantic in our


language and are obsessive-compulsive in our hobbies. We have difficulty with the
control of our expressing emotional states, take things literally, and have difficulty
understanding what other people’s gestures mean. This is just the tip of the iceburg
that is Asperger’s Syndrome, so there is more information than I can give. I hope
that you have enjoyed learning what Asperger’s is, through my own eyes.
Introduction
Asperger Syndrome (AS) is a pervasive developmental disorder characterized by deficits in
social interaction and motor coordination, and unusual or restricted patterns of interest or
behavior. Clinically, the distinction between autism and Asperger's disorder is often made in
terms of severity and in the qualitative expression of the criteria. Both syndromes are
characterized by social interaction deficits, impaired communication skills, and unusual or
bizarre behaviors. However, in AS, motor deficits are more pronounced, onset seems to be later,
and social deficits are present without grossly impaired speech and language (Frith 1991). In
DSM-IV (American Psychiatric Association, 1994) a diagnosis of AS requires the absence of
any clinically significant delay in language acquisition, cognitive development, and adaptive
behavior (with the exception of social interaction.) In this way, DSM-IV clearly distinguishes
between the AS diagnosis and that of autism (which is characterized by more marked delays in
these areas prior to three years of age). Since parameters for diagnosis have only recently been
formulated such that a consensual definition can be drawn upon for research purposes, relatively
little is known about AS.
Asperger's Syndrome v. High Functioning Autism
Similarities have been noted between the definition of AS and that of autism without mental
retardation, or High Functioning Autism (HFA). Mental retardation co-occurs with autism in
about 75% of reported cases so the DSM-IV definition allows for children who do not
demonstrate emasured intelligence in the mentally retarded range. Currently there are no widely
accepted diagnostic guidelines specifically for High Functioning Autism (Gillberg, 1998). HFA
may be most appropriately diagnosed when the criteria for autistic disorder are met (American
Psychiatric Association, 1994) and Full Scale IQ exceeds the mentally retarded range. As
compared to AS, HFAs generally have lower Full Scale IQs, with less apparent
Verbal/Performance IQ discrepancies. In AS, Verbal IQ typically exceeds Performance IQ
(Gillberg 1989, Ozonoff & Farham, 1994). There may be more of a family history in AS,
especially in fathers of AS children, than in HFA (Gillberg, 1989). Motor clumsiness may be
more characteristic of AS, whereas motor mannerisms may appear more in association with HFA
(Gillberg, Steffenburg, & Schaumann, 1991).
Abnormalities and delays in language and communication may be more severe in HFA than in
AS. Peculiarities of speech and language may nonetheless be present in children eventually
identified as AS. Since most cases of AS are diagnosed at approximately age seven or later
(Gillberg & Gillberg, 1989), data regarding early language development may depend largely on
accurate recollections by parents, which may not be reliable (Hart, Bax, & Jenkins, 1978). The
exclusionary criterion of the absence of language delays for the AS diagnosis remains
controversial (Gillberg 1995) .
AS may also be distinguished from autism on the basis of early attachment patterns. In early
childhood, AS is associated with adequate attachment to family members and with approaches to
interact with peers (although inappropriate and awkward). In autism, attachment to family
members is more atypical and broader social patterns are marked by withdrawal and aloofness
(Klin & Volkmar, 1997).
AS may be most accurately identified through neuropsychological assessment (Lockyer &
Rutter, 1970, Happe, 1994). Details of these patterns will be discussed later.
The 'Autistic Continuum'
Some researchers (e.g., Schopler, 1985) have objected to the use of a distinct diagnostic category
for a disorder the represents only one point on the "autistic continuum." Frith (1991, p.5) agrees
that, "Asperger syndrome is the first plausible variant to crystallise from the autism spectrum...no
doubt other variants will follow."
Wing (1991) concluded that both autism and AS are best regarded as falling within the
continuum of social impairment which may differ in their clinical presentation due to the degree
of deficit in the cognitive, language and motor realms. However, Frith asserts that, for the time
being, the AS diagnostic category should be retained for clinical reasons. First, many parents of
AS children will find the diagnosis more acceptable than the diagnosis of autism (which, among
lay persons, may be associated with extreme withdrawal, unusual stereotypies, and self-injurious
behaviors). Secondly, many children with milder forms of the disorder would be left without a
diagnosis and hence, without the services and understanding they require (Frith, 1991).
In practice, children may fail to fit neatly into the diagnoses of AS or autism as sanctioned by the
American Psychiatric Association (1994). When a child presents with pervasive and atypical
development, the diagnosis of Pervasive Developmental Disorders- Not Otherwise Specified
(PDD-NOS) may be most appropriate. Thus children who display some characteristics thought to
fall on the autistic continuum, but who do not meet the criteria for AS, may receive the diagnosis
of PDD-NOS. Whether a subset of PDD-NOS cases represent milder AS or autism is not
known, in part because it is difficult to obtain funding for research for any disorder labeled "Not
Otherwise Specified" (Klin, 1999).
History
Autism was first described by Kanner (1943, as cited in Frith, 1991). Kanner described a group
of patients who, from an early age appeared aloof or indifferent to other people, resisted change,
and engaged in repetitive activities. As these children grew, he observed a conspicuous absence
of make-believe play, a fascination with objects which were often skillfully handled, mutism or
language which seemed to lack communicative intent, and 'islets of ability' or special skills
which were expressed in remarkable feats of rote memory, calculation, or other isolated skill.
Shortly after the publication of Kanner's paper in the United States, Hans Asperger, an Austrian
physician, published a report, in German, in which he described four boys who, despite
apparently adequate verbal and cognitive skills, displayed deficits in social interaction and
milder autistic behaviors (Asperger, 1944, as sited in Frith, 1991). Mental retardation was not
prominent in these patients and they demonstrated deficits which resembled a milder, higher
functioning form of autism. Asperger's work was published in German and his contribution went
largely unrecognized until the 1980s when his work was translated by Lorna Wing (1981).
Although initially unaware of each other's work, both Kanner and Asperger used the word
"autistic" to characterize the disturbances that they observed. This term had been introduced by
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 (Frith, 1991). 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 and Asperger's patients exhibited this difficulty early in life and with a
consistent and chronic, rather than progressive, course.
Early diagnostic schemes intertwined autism with childhood schizophrenia and both were so
vaguely defined as to be of no research utility (Ciaranello & Ciaranello, 1995). Although
Asperger firmly held that the disorder was rooted in neurobiological causes, initially,
psychodynamic theories of etiology and approaches to treatment prevailed. These theories
implicated parents, specifically "refrigerator mothers" as the underlying cause of the autistic
child's delayed and atypical development. Following this theoretical framework, treatment
logically necessitated residential placement of such children for extended periods (Bettleheim,
1967).
A formal diagnostic criteria for autism was not developed until the 1970s (Ritvo & Freeman,
1978, Rutter & Hersov, 1977). Autism was first included in the Diagnostic and Statistical
Manual (DSM) of the American Psychiatric Association in 1980 and is now a widely recognized
diagnostic entity. AS was not included until DSM-IV was published in 1994.
Clinical Presentation
The autistic continuum ranges from the most severe mentally retarded individuals with social
impairment as one of several severe impairments, to highly intelligent and able persons with
subtle social impairments (Wing, 1991). The various clinical pictures of autism and related
disorders depend upon the combinations of different impairments, which may vary in severity
independent of one another, and interact to produce various overt behaviors.
Social Interaction
The criteria for AS and autism are identical in terms of social deficits. However, in AS there are
generally fewer symptoms, as well as a distinct presentation. Individuals with AS are aware of
other people and desire friendship. They are often (involuntarily) socially isolated because their
approaches tend to be inappropriate and peculiar. Although the AS individual may be able to
correctly describe other people's intentions, emotions, and conventions, they are unable to
execute this knowledge in a spontaneous and useful manner. The lack of spontaneous adaptation
is associated with an over-reliance on formalistic rules of behavior.
Autistic individuals are more apt to be withdrawn and may seem disinterested in relating to
others whereas those with AS are often quite eager to relate to others but lack the requisite skills
to do so (Klin & Volkmar, 1995). Meisbov and Stephens (1990) studied HFA adults' perception
of popularity among peers and found that, like their age-mates, they valued humor,
attractiveness, intelligence, and athletic ability. However, they did not always agree with their
age-mates perceptions of these attributes.
Communication
Although severe deficits in communication would lead to a diagnosis of autism instead of AS,
several unique qualitative aspects of communication in AS have been identified. First, speech is
often marked by poor prosody. Inflection and intonation typically are not as rigid and monotone
as in autism. A restricted range of intonation patterns may result in utterances in which tone of
voice is inconsistent or unrelated to content and communicative intent. Second, speech may also
seem tangential and circumstantial. Although this may sometimes be a manifestation of a
thought disorder, among AS children it is more often a reflection of their egocentric
conversational approach and failure to censor output which accompanies internal thoughts. This
may be evident in monologues on the topic of consuming interest (e.g., geography, railway
schedules), failure to integrate what the listener can be expected to know in terms of background
information; difficulty implementing the rules of conservation, such as turn-taking and topic
transitioning. A third characteristic of communication among individuals with AS is verbosity.
The individual with AS may launch into monologues on their favorite topic with complete
disregard of the listener's interest, nonverbal signals, or background information
Restricted Range of Interests, Activities, or Behaviors
In autism, one of the most frequently observed and most pronounced symptom is an intense
preoccupation with restricted patterns of interest. In AS, this is much less commonly reported,
with the exception of a preoccupation with an unusual topic about which the AS individual
amasses considerable factual knowledge. Given deficits in pragmatics of social interaction, the
AS individual will readily share this information, at great length and in considerable detail. The
area of special interest may dominate the social interactions and activities of the AS individual
(and often their families, as well). The specific subject area may change every two years or so
(Klin & Volkmar, 1995).
Motor Deficits
Gross and fine motor problems are often seen in association with AS but are not part of the
required criteria for diagnosis. Motor milestones may be delayed, but more typically, there are
delays in the acquisition of more complex motor skills such as riding a bike, catching a ball, and
climbing. AS individuals often display odd gait, poor manipulative skills, and deficits in visual-
motor coordination. In autism, gross motor skills are often a relative strength.
Autistic Spectrum Disorders Through the Lifespan
Autism is a developmental disorder and its behavioral manifestations vary with age and ability.
Its defining features, impairments in socialization, communication, and imagination, (Frith,
1991) are present in different forms at all stages of development. One of the earliest signs
thought to be specific to autism is a lack of pointing and looking to share interest and attention
with another person. However, in children with global developmental delays, this behavior
would also be expected to emerge later, and hence would lack specificity to autism. Losche
(1990) reviewed early home movies of autistic and nonautistic subjects and concluded that the
timing and sequence of developmental gains differs between normal and autistic children only
from the second year of life. It may therefore be difficult to make the diagnosis of autism with
confidence prior to ages two or three years (Frith, 1991).
During the preschool years a more recognizable pattern of behavior difficulties emerge.
Language may be delayed, precocious, or otherwise highly idiosyncratic (Wing, 1991). Some AS
children show an early fascination with numbers and letters. Hyperlexia may be evident in
which the child is able decode words, but with little or no comprehension of meaning. Deafness
is often suspected because these children seem unaware of what is going on around them. Social
interaction is noticeably impaired. Make-believe play is absent and instead, the child may
become fixated on simple repetitive activities or rituals. In young children deficits in
'mentalising' are common. Mentalising refers to the ability to attribute mental state (e.g.,
thoughts, feelings, motives) to others and to oneself. As they mature, AS and HFA children may
pass mentalising tasks in formal test situations while continuing to show deficits in applying
these abilities into real-life settings (Ozonoff, Rogers, & Pennington, 1991).
Among children diagnosed with autism, the grade school years bring divergent paths of
development which may represent different subtypes of the disorder (Cohen, Paul, & Volkmar,
1987). With some exceptions, language and general intellectual ability go hand in hand (Frith,
1991). In AS, fluent speech is usually achieved by the age of five even though it may be
noticeably odd in terms of pragmatics.
In adolescence, the AS individuals may vaguely realize that they are different from others and
that they are excluded from many interpersonal relationships (Kanner, 1971). Although they
amass many facts about the world, their knowledge remains fragmented and they continue to
have difficulty in the meaningful, integrated execution of their knowledge (Frith, 1991). AS
individuals, despite average measured intelligence and adequate academic abilities are often
described as lacking in common sense.
In adulthood, the AS individual may become superficially well adapted but typically remain
egocentric and isolated (Volkmar, 1987). Use of language and gestures remains stilted, and they
seldom enter the natural flow of conversation. Difficulties often arise in living and working with
other people and psychiatric intervention may be helpful (Frith, 1991).
Psychiatric Comorbidity
Studies of comorbid psychiatric disorders in AS subjects have been sparse. Most studies of
comorbidity are limited by small sample size as well as problems in uniformly defining AS.
Volkmar and Klin (1997) stated that some studies found an association between AS and
Tourette's Syndrome, a finding that they were unable to replicate when examining a larger pool
of AS subjects. Other disorders which may co-occur with AS include obsessive-compulsive
disorder (19%); depression (15%); and ADHD (28%). Comorbidity of certain conditions may
vary according to developmental level. For example, ADHD appears to be more common in
younger AS individuals while depression may be more apt to emerge in adolescence and
adulthood (Volkmar & Klin, 1997).
Some researchers have proposed that at least some of the adults previously identified as Schizoid
Personality Disorder may actually be displaying the manifestation of AS in adulthood. Schizoid
Personality Disorder is an Axis II diagnosis (APA, 1994) from adult psychiatric nomenclature.
Schizoid Personality Disorder may actually represent a form of autism in adults (Wolff &
Barlow, 1979). In two studies (Wolff & Chick, 1980; Cull, Chick & Wolff, 1984) children
diagnosed with Schizoid Personality Disorder and those diagnosed with AS were followed into
adulthood. Both groups of researchers concluded that the these disorders were essentially
identical. However, Wolff and Chick (1980) noted that the group identified as "Schizoid"
demonstrated more distractibility and less perseveration on cognitive tasks than the subjects
identified as AS. Other researchers object to the idea of collapsing these diagnostic categories
(Tantum, 1988).
Etiology
Ciaranello and Ciaranello (1995) distinguish between nongenetic and genetic etiologies.
Nongenetic causes are associated with disruption, usually prenatally, to the pattern of normal
brain development. Genetic causes arise from mutations in genes controlling brain development.
Clinically, there is no distinction between these classifications and it is assumed that both genetic
and nongenetic etiologies cause damage to the same brain centers and regions (Ciaranello,
VandenBerg, & Anders, 1982).
Nongenetic Causes
The most frequently sited nongenetic cause of autism is prenatal exposure to viral infection
(Ciaranello & Ciaranello, 1995). Chess (1977) reported a significantly increased incidence in
children born during the 1964 rubella pandemic. These children developed autism along with
other birth defects characteristic of congenital rubella syndrome. Although other infectious
agents have been associated with autism, these are mostly single cases (Lotspeich & Ciaranello,
1993). Varicella (Knobloch & Pasamanick, 1975), rubeola (Deykin & MacMahon, 1979), and
prenatal toxoplasmosis and syphilis (Rutter & Bartak, 1971), have been linked to single cases of
autism. Taken together, these and other case reports provide evidence of a possible link between
prenatal infection and the disruption of brain development such that autism ensues.
There is inconsistent evidence regarding prenatal, perinatal, or neonatal trauma in association
with autism. In a review of the literature, Nelson (1991) was unable to find any consistent link
between maternal history, pregnancy, delivery, or neonatal events with autism. However, in a
study of 46 children with HFA which used normally developing siblings as controls, it was
reported that the HFA subjects had a higher frequency of reported complications during
pregnancy, were more likely to have a gestation period over 42 weeks, and were more frequently
first born or fourth-or-later born children (Lord, Mulloy, Weendelboe, and Schopler, 1991) . In a
review of the literature, Ciaranello and Ciaranello (1995) concluded that pre- and perinatal
factors seem to play a larger role in cases of autism associated with mental retardation than with
HFA.
Other nongenetic factors associated with autism include hypothyroidism and other medical
conditions in the mother. Gillberg, Gillberg & Kopp (1992) studied five children with autistic
conditions and found that three of the five had congenital hypothyroidism and the remaining two
had mothers who were likely to have been hypothyroid during pregnancy. Maternal antibody
formation and rejection by embryonic lymphocytes was found in association with autism in a
sample of eleven mothers of autistic children (Warren, Cole, & Odell, 1990).
Teratogens have also been studied. Davis, Fennoy, and Laraque (1992) studied 70 mothers who
used cocaine or engaged in poly-drug abuse during pregnancy. In this sample, 11.4% of these
women gave birth to autistic children and 94% of the children born showed a pattern of delayed
language development. Environmental toxins have also been implicated as possible etiologic
agents in autistic spectrum disorders (Rodier, 1998).
Genetic Causes
Evidence of a genetic etiology for autism has been provided by numerous epidemiological
studies. Estimates for sibling frequency have ranged from 2-6 %, 50-150 times the frequency in
the general population ( Rutter & Bartak, 1971). Ritvo (1989) in a study of a relatively large
autistic sample, estimated the overall risk of recurrence to be 8.6%. In Ritvo's sample, if the first
autistic child was male, the recurrence risk was 7%; if the first autistic child was female, the
recurrence rate was 14.5%. In an overview of these studies, Ciaranello & Ciaranello (1995)
concluded that all of the studies may underestimate the recurrence rate due to a tendency to stop
having children after the birth of an autistic child. However, the extent to which these stoppage
rules apply among parents of autistic children is unknown.
Attempts to specify a mode of inheritance for autism has been complicated by factors including:
sex-influenced inheritance; reduced penetrance; variable expression of the disorder; diagnostic
ambiguities; and stoppage rules. Smalley et al (1988, 1991) have proposed that autism is the
result of multifactorial inheritance and genetic heterogeneity.
Twin studies further support a genetic basis for autism. Studies completed by a number of
researchers (e.g. Ritvo Freeman, Mason-Brothers, & Ritvo, 1985; Steffenburg, Gillberg,
Hellgren, & Anderson, 1989) concur that there is a much greater degree of concordance in
monozygotic than in dizygotic twins. Family studies provide further evidence of a genetic basis
for autism.
Epidemiology
Autism occurs in 7-16 per 10,000 children (Wing, 1993; Baron-Cohen, 1995; Gillberg, 1995).
HFA constitutes only a fraction (11-34%) of such cases. In contrast, AS may occur at a rate oft
3.6 to 7.1 per 1000 children ages 7-16 years (Ehlers & Gillberg, 1993). Gillberg and Gillberg
(1989) found that AS was about five times as common as autism. If these figures can be
replicated and, if it becomes accepted that autism refers to a spectrum or continuum disorder, the
estimate that 75% of children with autism have concomitant mental retardation would drop to
only about 15% (Gillberg 1998).
The excess of autistic boys over girls was noted by both Kanner and Asperger, and is now well
established, although the incidence for females is higher than originally thought. In reviews of
16 population studies of autism Wing (1993) and Gillberg (1995) found that the male: female
ratio was closer to 2-3:1. However, in HFA, the ratio is probably higher (Wing & Gould, 1979).
The male:female ratio in autism tends to go down with decreasing IQ (Wing, 1981). At the
lowest ability levels the ratio of boys to girls was only 2:1. At the highest ability levels, Wing's
sample showed a ratio of 15:1. However, Newson, Dawson, & Everard (1982) identified a
sample of 93 very able autistic people who lived all over Britain and found that only nine of
them were women.
Neuropathology of Autism, AS, and HFA
The literature on the neuropathology of autism spans four decades and has produced a large body
of inconsistent and often contradictory results. Autistic children, as defined in various studies,
may exhibit intellectual functioning ranging from mentally retarded to intellectually superior,
they may be mute or have a highly developed language skills, and stereotypic rituals and social
handicaps may range from mild to severe. Given the heterogeneity of subject populations, the
inconsistency in results is not particularly surprising. Postmortem and neuroimaging studies
have described neuroanatomical abnormalities in Autism but the extent to which their
conclusions can be generalized to AS and HFA is not known.
Autism
Structural and cellular abnormalities have been found in the hippocampus, amygdala, and
cerebellum (Bauman & Kemper, 1985). These deficits have been associated with difficulties in
socioemotional functioning, sensory processing, and motor planning (Aronowitz, Decaria,
Allen, Weiss, & Saunders, 1997).
Evidence for pathophysiology in the cerebellum was originally proposed on the basis of clinical
and neurophysiologic deficits (Ornitz,1985). The role of the cerebellum was further investigated
on an anatomic level, through autopsy studies by Bauman & Kemper (1985). The loss of granule
and Purkinje cells may disrupt the developmental cytoarchitecture of the cerebellar circuitry.
Immature neurons persist, and a nonfunctional fetal neuronal pattern of circuitry is retained.
With maturation, the fetal neuronal pattern may be lost but it is not replaced by an adult pattern
so the normal circuitry of the cerebellum does not develop.
Auditory and vestibular pathways in the brainstem were implicated in some studies (Ornitz,
1985; Ornitz & Ritvo, 1968) but these findings could not be replicated in subsequent research
using a variety of anatomic, imaging, and neurophysiological methods. Although several
neurophysiological abnormalities have been identified in autistic subjects, these have not been
specific for autism and have also been found in non-autistic matched controls (Minshew, 1991).
Kemper and Bauman (1993) reported small, densely packed cells in the hippocampus and
amygdala and suggested that this reflected an immature pattern of neuronal development in these
structures. They observed neurons which appeared immature in the diagonal band of Broca,
which projects cholinergic afferents to the hippocampus and amygdala (Ciaranello & Ciaranello,
1995).
Many studies have attempted to find neurochemical deficits in autism following the hypothesis
that autism may be a metabolic disease which arises from a defect in some biochemical pathway.
With the exception of the occasional association of autism with a known metabolic disorder,
there have been no consistent findings implicating a biochemical basis for autism.
Although there is no consistent neuroanatomic defect in autism, there is evidence that implicates
neuronal maturation defects, particularly in the cerebellum and limbic structures. These deficits
do not appear to be reflected in the size or metabolic activity of these structures. Thus, the
weight of neuroanatomic and neuropsychological evidence implicates the cerebellum and the
limbic forebrain, at the cellular level, suggesting possible deficits in neuronal migration,
maturation, or synaptic connectivity.
In a study which compared PET results of young men with AS and normal controls, both groups
showed increased regional blood flow in the left frontal lobe in connection with mentalising
tasks. However the specific area of activity differed between the two groups. These researchers
suggested that difficulty in mentalising activity may be associated with dysfunctional activity in
the medial portion of the left frontal lobe (Happe, Ehlers, & Frackowiak, 1996).
Unspecified abnormal electroencephalogram, auditory brainstem response, and oculomotor
findings have been reported in AS and HFA, as well as in low-functioning autism (Gillberg,
1989). In a study which examined cerebrospinal fluid glial fibrillary acidic protein (GFA-p), a
small group of AS children (n=4) had levels of this marker which fell in between the normal
group (n=10) and an autism group, which included an HFA subsample (n=14) with high GFA-p
levels equal to those of the low functioning subjects. This raises more questions regarding the
etiology of AS, indicating a possible role of glial dysfunction or abnormal demyelination in the
pathophysiology of this spectrum of disorders
Several case studies have documented specific medical disorders in association with AS and
HFA symptomology including: tuberous sclerosis (Gillberg, Gillberg, & Ahlsen, 1994); Marfan-
like syndromes (Tantam, Evered, & Hersov, 1990); Kleine-Levin syndrome (Berthier,
Santamaria, & Encabo, 1992); fragile X syndrome (Hagerman, 1989); and other chromosomal
anomalies (Anneren, Dahl, & Uddenfelt, 1995).
Assessment Issues
Assessment should begin with a comprehensive history. In addition to the typical practice of
collecting data on early development, medical, educational, and family aspects, areas of
particular relevance to the diagnosis of AS should also be explored. These include: an
exploration of the onset of, or first recognition of problems; practical use of language; and
special areas of interest. Emphasis should placed on problems in social interaction, patterns of
attachment to family members, development of friendships, self-concept and self esteem, and
mood presentation.
Neuropsychological Assessment
AS shares several characteristics with Rourke's (1989) concept of Nonverbal Learning
Disabilities. Within the NLD framework, AS corresponds to a type of neurological impairment
in which virtually the entire spectrum of NLD assets and deficits are in evidence. Many areas of
functioning present a mixed bag of strengths and weaknesses. Simple and repetitive motor skills
tend to improve and normalize with increasing age, however, performance on tests of complex
motor skills tend to deteriorate, relative to age-based norms. Psychomotor coordination
difficulties are bilateral, although a greater degree of impairment may be apparent on the left side
of the body.
Bilateral tactile-perceptual deficits may similarly be more apparent on the left side. Deficits may
vary according to age, with tactile imperception and suppression subsiding over time while
problems with complex tactile input persist. Simple visual discrimination, especially for material
that can be translated into verbal input, usually approaches normal levels. However, complex
visual-spatial-organizational skills, particularly when demanded in a novel situation, tend to
worsen relative to age-based norms.
Assets are often evident in the areas of rote verbal learning, however, the NLD individual may
tend to overly rely on this approach and experience extreme difficulty in adapting to novel and
complex situations. Demonstrated memory skills in dealing with complex verbal material is
usually deficient, perhaps due to difficulties in initial comprehension of complex material.
Auditory perceptual skills are usually intact, although sometimes later to emerge as compared to
normals. In linguistics, assets are apparent in a well developed vocabulary and fund of verbal
information. Although sometimes judged to have unusual linguistic prowess, deficits in this area
are quite severe. Deficits are most apparent in the pragmatic use of language. Speech prosody is
extremely limited.
Academic functioning usually reveals the NLD pattern of deficits in mechanical arithmetic as
compared to relative intact word recognition and spelling skills. Comprehension of complex
reading material tends to be poor and difficulties in dealing with scientific concepts and theories
are often apparent by adolescence. Errors in spelling are primarily of the phonetically accurate
type.
These deficits impact interpersonal functioning in problems appreciating incongruities and
humor, difficulty in adapting to novel and complex situations, and an over-reliance on rote and
rigid behaviors in a constantly changing social milieu. Overall, social perception and social
judgment are impaired.
Speech and Language Assessment
A speech and language evaluation should include both qualitative as well as quantitative aspects
of the child's functioning. The typical test battery which focuses primarily on formal language
(i.e., vocabulary, articulation, comprehension, and sentence construction) will tap only areas of
strength in most AS individuals. language assessment should thus also incorporate measures of
nonverbal communication, nonliteral language (e.g., absurdities, metaphor, and humor) speech
prosody (melody, volume, and pitch), and pragmatics (i.e., turn-taking, sensitivity to cues,
adherence to rules of conversation). This latter group of language skills are more apt to reveal
areas of significant deficits for individuals with AS. A language assessment should also note
perseveration on circumscribed topics and social reciprocity.
Intervention
Securing Services
Klin & Volkmar (1997) have noted a tendency for parents and professionals to underestimate the
deficits which impact on AS individuals. This is, to an extent, understandable given the
proficient verbal skills, average or higher psychometric intelligence, and solitary lifestyle which
may serve to mask severe deficits that become evident primarily in novel and/or socially
demanding situations. Some AS children have been identified as Learning Disabled which may
be successful in securing some accommodations and support but fails to address some of the
most debilitating aspects of AS (e.g. deficits in reciprocal social interaction). Other AS children
have been classified as PDD-NOS or autistic which often leads to placement with children who
are significantly lower functioning. Such a placement may fail to make use of their unique
assets. A third and most inappropriate label is "Social-Emotional maladjustment". This label is
used in educational nomenclature for children with severe behavior or conduct problems who do
not qualify for special education services as Emotionally Impaired. Klin (1995) describes this as,
"the worst mismatch possible, namely of individuals with a very naive understanding of social
situations in a mix with those who can and do manipulate social situations to their advantage
without the benefit of self-restraint."
Acceptance of AS and related diagnoses in educational settings has been limited. Children with
milder autistic continuum disorders may be certified for special education services under a
variety of labels. Due to the mismatch of the diagnostic category with education classifications,
services may be difficult to obtain. By way of example, Appendix A shows the classifications
under which an AS child is apt to receive special education services in the State of Michigan
(Michigan State Board of Education,1997). An AS child, may qualify for special education
services under the classification of "Specific Learning Disability" ( perhaps in reading
comprehension and/or mathematics calculation), as "Speech and Language Impaired" (due to
deficits in pragmatic use of language), or "Emotionally Impaired" (due to the inability to build or
maintain satisfactory interpersonal relationships within the school environment). Ironically, by
Michigan eligibility definitions, it appears unlikely that a child presenting with AS would be
serviced under the definition of "Autism." Some are also found ineligible for special education
services because the "interdisciplinary team," does not feel that the areas of deficit have a
significant impact on the child's academic functioning.
Services designed for accommodating and remediating specific learning disabilities may not
address the range of problem areas in AS, especially when deficits are subtle, cause few
problems for school officials, and do not directly and obviously impact on academic
achievement.
To explain some of the basic concepts of AS/ NLD, the writer has developed a booklet which has
enjoyed some limited, anecdotal success in enhancing awareness and understanding among a
small sample of public school personnel. This is provided in Appendix B.
Although neuropsychological assessment is central to designing programs and interventions
tailored to the needs of the individual, a label from the psychiatric nomenclature is essential for
providing health care services and an educational classification will be needed to deem the child
eligible for special education services.
Intervention Strategies
Volkmar and Klin (1997) suggest that skills and concepts be taught in an explicit and rote
fashion where possible, employing a parts to whole verbal instructional approach. Learning
strategies will be most effective when based on the specific pattern of strengths and deficits
demonstrated in neuropsychological assessment. If motor and visual-motor deficits are
identified, physical and occupational therapies are indicated.
Interventions designed to improve communication and social skills may have any or all of the
following as its goals, depending on the specific needs of the individual: enhanced awareness of
one's own nonverbal behaviors (e.g., the use of verbal inflection, eye contact, and gaze in social
interaction); verbal decoding strategies for more accurately interpreting the nonverbal behavior
of others; more integrated processing of visual and auditory stimuli; improved social awareness
and perspective taking. Techniques for teaching nonverbal communication skills have been
described in the literature on learning disabilities (e.g., Minskoff, 1980).
Treatments for AS and HFA are primarily symptomatic and supportive. As lifelong disorders,
treatment needs and approaches will change with the individual development.
Psychoactive medications may be used to target specific symptoms but are generally not
indicated in AS and HFA. In high-functioning individuals with symptoms of obsessive-
compulsive disorder, anxiety, or depression, pharmacotherapy may be helpful (Wing, 1991).
Insight-oriented psychodynamic therapy has been extensively used to treat these disorders with
little objective evidence of success (Campbell, Schopler, Cueva, & Hallin, 1996).
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If you were looking for a precise definition of Asperger’s Syndrome, you would find
something like this: a neurobiological disorder named for a Viennese physician,
Hans Asperger, which affects humans with normal intelligence and language
development but exhibit autistic-like behaviors. Now, if you are just another
average Joe like myself reading this paper, you would not quite understand that
definition. Some professionals describe Asperger’s Syndrome simply as “a dash of
autism”. By reading The Curious Incident of the Dog in the Night Time, by Mark
Haddon, it is easier to understand this disease when you get to know the main
character, Christopher Boone. In the book, Chris always seems to display a sense
of paranoia and would freak out at times. He could develop relationships and care
for animals but struggled to cope with people. He hates the colors yellow and
brown and is obsessed with prime numbers. His days were tagged great, good or
bad days on the ride to school, based on the colors of cars he passed along the way.

With Asperger’s Syndrome, you are unable to determine what kind of moods or
feelings someone is experiencing just by looking at their facial expressions. This is
why Chris has to do all those exercises with drawing faces and trying to identify
different expressions. Asperger’s does not affect a human’s IQ, and most people
with the syndrome display excellence in a certain area or have exceptional talent or
skill at one specific task; for Chris that area of excellence was math. Also
throughout the book, Chris takes everything literally and “always tells the truth”.
This is due to the syndrome and his inability to comprehend or assume things.
There are certain medications that can help with or lessen the effectiveness of the
syndrome, but it cannot be completely cured.

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ASPERGER’S SYNDROME : Chapter 1 Introduction to the Problem


INTRODUCTION TO THE PROBLEM

Why are services failing to meet the needs of people with Asperger's Syndrome and High

functioning Autistic spectrum disorder? Well, it is paramount that people continue to validate

existing services by conducting sound research and demonstrating techniques and strategies that

are effective. It is important to promote continued trials of new and innovative approaches and to

share information with others who work with people who are suffering from Asperger's

syndrome and autism disorders.

BACKGROUND OF THE PROBLEM

This research makes a welcome and much needed contribution to people's knowledge and

understanding of services provision and value of the services for children and teenagers with

high functioning autism and Asperger's syndrome. Whilst there have been many studies

exploring services for children with a range of disabilities, there have been very few specifically
focusing upon ASD, especially those with high functioning autism and Aspergers. Indeed, the

research is aptly timed, drawing upon the recognition of the valuing people of the need for and

value of services for children and young adults affected by the disorders including those without

a recognized learning disability. Assessing current levels of provision and service gaps, the

report thus provides an important information resource for policy makers and practitioners. The

research accessible format, in terms of both the language and clear layout, ensures that the study

will also be of interest and value to a wide audience, including the families of children and

teenagers with ASD.

STATEMENT OF THE PROBLEM

The research proposal implies the use of service provision in meeting the needs of those people

with Asperger's syndrome and ASD. Parents frequently emphasized the importance of having a

range of flexible services in order to meet the needs of individual children and their families.

Within this, priorities for services included routines and consistency, the importance of planning

placements and ongoing communication with families, high staffing levels and appropriate

environments as this was very much the ideal; in reality the majority of families using services

had little choice. Indeed, service providers were very aware that they are currently providing

only what they can afford rather than what is actually needed. The most frequently requested

types of services were sitting services, play schemes, family based short breaks and befriending

schemes. The study clearly demonstrates not only a general need for more services but that

provision is inequitable and largely focused upon those with the most obvious, practical needs.

The proposal should recommend not only more and better-funded services but also a greater
understanding of ASD, with knowledgeable and well-trained staff to meet the whole spectrum of

needs.

PURPOSE OF THE STUDY

The purpose of the study is to basically determine, enhance and strengthen certain support

services like special education services designed for people with Asperger's syndrome and high

functioning autism that would provide success to service provisions that relates to the focus

situation and imply better assumptions for possible collaboration and partnerships among

parents, teachers, school administrators, care providers and the society in general to always

update and provide plans of action for a better service that is a true success in helping out those

children and young adults who are suffering from the high functioning autism and Asperger's

syndrome.

RESEARCH QUESTIONS

The research proposal centers upon some crucial research questions as each of which is

comprehensively discussed in the process and includes:

Are the services provision experienced as beneficial? Are there certain policies for provision for

children with AS and ASD? What are the key principles?

What are those services used and required by children and young people with ASD?

What are the factors inhibiting the provision of the services and its possible recommendations?
Does the LEA/TEACCH give guidance to schools and other professionals on enabling pupil

participation, including pupils with an ASD?

Are families given support during and immediately following identification of an ASD?

Is information given to families about where to go for further sources of information about

education for children with ASDs, covering the range of educational provision that is available

locally and nationally, including early intervention and educational approaches and the

differences between them?

Is practical advice and training available to parents in ways of working and interacting with

their children?

What elements of provision are considered important for children with the different kinds of

incidence needs?

What are the major gaps in services, support and provision at every level? What are the key areas

for development that will help address these gaps?

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