A DEFINITION OF AUTISM
The syndrome of autism, a life-long developmental disability, can best be described as a dysfunction within the central nervous system - the exact nature or type of which has not yet been determined. There are no medical tests which will lead to a definitive diagnosis. At present autism is diagnosed by the behavioral symptoms exhibited by the individual. It is deemed a syndrome because of its many and varied symptoms. Occurring in approximately 4 or 5 births out of 10,000, it is three or four times more common in boys than girls. Generally, the onset of autism occurs in the first three years of life and is noticed by parents as developmental milestones are not met. In some cases there is a period of seemingly normal development followed by a sudden regression, such as the child who stops "talking" and playing social games like "peek-a-boo".
Autism may be accompanied by other handicapping conditions, such as mental retardation or seizures. Autistic persons with normal or above normal intelligence have been documented, but most are mentally handicapped. Most autistic individuals have no physical disabilities and appear perfectly normal. Autism itself, independent of other accompanying disorders, afflicts some individuals severely and others only mildly. When not all of the key behavioral symptoms of autism are present, the child is diagnosed as having a Pervasive Development Disorder (not otherwise specified) [PDD-NOS]. Also, the symptoms of autism displayed by the individual can change based upon increasing chronological age and/or the effects of appropriate education/treatment.
The Diagnostic and Statistical Manual of Mental Disorders (Fourth Edition) established by the American Psychiatric Association provides a reference of behavioral criteria to aid in diagnosing autism. The basic defining characteristics of the syndrome of autism include:
Impaired Development of Reciprocal Social Interaction
Autistic individuals fail to develop normal reciprocal or interactive social relationships with others. Often they are described as "living in a world of their own", apparently uninterested in other people. They may avoid eye contact or "look through" others as if they are not there. Often their interest in others is limited to using them like tools or instruments to help them obtain something, such as the autistic boy who puts his mother's hand on the lid of a jar he cannot open himself. Some autistic individuals may avoid physical contact by stiffening or running away and become quite distressed when touched. Others may be completely unresponsive to physical contact or become limp when touched as if extremely apathetic. There are, however, autistic people who appear quite affectionate and "cuddly", but usually they are this way only when they initiate it or when it is on their own terms. In addition, autistic individuals have great difficulty understanding and expressing emotion. Their facial expression is often blank or neutral, and they are unable to "read" or understand the facial expressions of others. Their social skills are very poorly developed, and social interactions, when they do occur, are mechanical or stilted in nature.
Impairment In Communication and Imaginative Activity
The communication impairment in autistic individuals is pervasive. This impairment affects both verbal and nonverbal skills. Approximately 40 to 50 percent of autistic individuals never develop functional language use. When speech and language do develop, they are qualitatively different from that of normal children or children with other language disorders. Regardless of whether they use verbal speech or sign language, the impairments are evident. "Echolalia" refers to the parrot-like way autistic individuals repeat what has been said (or signed) to them. This echolalia can be immediate (repeating what has just been heard or signed) or delayed (repeating what has been heard or signed in the past, such as on a T.V. commercial) and is typically noncommunicative in nature. Pronoun reversal is very common in the autistic population; an autistic child may say "You want a cookie" when actually she wants one herself. The autistic individual may be unable to label objects or use and understand abstract speech when beyond the age at which this would normally be expected. This literalness of speech can lead to interesting situations, such as the autistic teenager at the library who, when asked to speak "lower", crouched down and yelled his question again. Idiosyncratic speech, or jargon, is also frequently observed in autistic individuals. This refers to the use of particular speech patterns or utterances that are apparently noncommunicative but whose meaning is clear to those who are familiar with the individual. These unusual speech patterns may also serve only to provide the autistic individual with sensory feedback, repeated over and over stereotypically. Abnormal speech melody, or dysprosody, is also a symptom of communication impairment in autistic individuals. Speech, when it is present, may be characterized by rises at the ends of sentences or conversely, a monotonous tonal quality. Pitch, rhythm, intonation, pace and/or articulation may be irregular. Nonverbal communication through facial expression and gesture is often absent or situationally inappropriate.
Impaired imaginative activity refers to the autistic individual's inability to engage in imaginative or symbolic play and frequently limited repertoire of play or leisure behaviors. When "imaginative" play is observed, it is generally restricted to a learned sequence of behaviors that is repetitive and stereotypical in nature. For example, an autistic child may engage in a pretend sequence of dialling a toy phone and having a short conversation, but on continued sequence is always performed in exactly the same order and in exactly the same manner.
Markedly Restricted Repertoire of Activities and Interests
This refers to the inability of autistic individuals to relate normally to objects and events in their environment. They frequently are obsessive/compulsive about the state of their environment, requiring certain elements to remain the same from the positions of objects to the order of routines. Slight disruptions in a routine, such as a meal being five minutes late, or minimal adjustments in an object's position, such as a door being slightly ajar, can result in temper tantrums or other extreme emotional reactions until the incongruity is rectified. Such inflexibility can lead to a very rigid life-style for autistic individuals and those around them. Similarly, autistic individuals may develop bizarre attachments to objects. They may be distracted, to the exclusion of all other objects in their environment, by particular items, such as a piece of string, that must be in hand at all times; the loss of which may lead to a severe emotional reaction. Alternately, they may become preoccupied with a particular aspect of an object, such as the spinning wheel of a toy truck, the smell of a page in a book or the textured surface of a ball, and ignore the rest of the object and its function. Autistic individuals frequently engage in stereotypical motor behaviors that may include behaviors, such as hand-flapping, spinning like a top, rocking and lunging. They may become absorbed in watching moving objects for hours, such as a fan or flashing lights. Their reaction to sensory stimulation may vary from total indifference to oversensitivity. Finally, autistic individuals may experience a profoundly restricted range of interests and a preoccupation with one narrow interest. For example, they may only be interested in lining up objects on the floor or talk only about a particular movie over and over again.
While these are the diagnostic criteria for autism, there are several other associated features that may also be manifested in autistic individuals. These other associated features include:
Abnormal Cognitive Development - Approximately 80% of the autistic population is mentally handicapped, most commonly in the moderate range. Unlike the cognitive development of other mentally handicapped individuals, that of the autistic population is generally uneven. That is, all areas of cognitive development are not impaired to the same degree. It is not uncommon for an autistic individual to be reported as having a "peak skill", or an exceptional ability, in one or more areas of cognitive functioning.
Abnormal Posture and Motor Behavior - In addition to the stereotypical motor behaviors mentioned above, autistic individuals frequently exhibit unusual body or hand postures, for example, many walk on their tiptoes.
Odd Responses to Sensory Input - Autistic individuals vary greatly in their responses to sensory stimulation. some stimuli may be totally ignored, such as a loud noise, while another, like a whisper, is responded to with clearly evident sensitivity. These responses may be inconsistent, i.e. what is ignored at one time may at another time be responded to with oversensitivity.
Abnormalities in Eating and Drinking, or Sleeping - It is not uncommon for an autistic individual to refuse to eat particular food items, such as anything green. There are autistic individuals whose diet is so restricted that they will only eat two or three different food items. Another frequent problem with autistic individuals is disturbed sleep patterns. For example, an autistic child may seem to require only a few hours sleep at night, consistently awakening in the early morning hours.
Abnormalities of Mood - Autistic individuals often display erratic emotional responses. They may show little variation in their emotions, or they may change rapidly from happiness to fear or sadness and back again. Often their emotional responses are unrelated to what is happening in their environment. An autistic child might laugh when scolded or hurt and cry when engaged in a favorite activity.
Lack of fear in dangerous situations or, conversely, excessive, irrational fear of objects, such as a shower curtain or a refrigerator, can commonly be observed.
Self-Injurious Behavior - While not peculiar to the autistic population nor present in all autistic individuals, self-injurious behavior is definitely one of the most dramatic of all associated features. Self-injurious behaviors vary greatly in form, but the most commonly observed are head-banging and biting of hands and wrists. Other self-injurious behaviors include head-slapping, elbow-banging, hair-pulling and scratching. The intensity of these behaviors also varies significantly from those that leave no physical evidence of damage to those that result in severe permanent injuries (eg. scars, blindness).
While there are many theories as to the cause of autism, there have been no conclusive studies determining its etiology. The most common misconception is that autism is caused by "refrigerator" parents, i.e. those who do not provide their child with emotional warmth and nurturing and, in essence, reject their child. THIS IS NOT TRUE. In fact, it has been found that parents of autistic individuals are no different from the parents of normal children or children with other disorders.
It is unlikely that one specific cause of autism will be found. Instead, the prevailing opinion is that autism is actually a combination of different sub-disorders, each having its own cause or causes. It is thought that by identifying these subsets, progress might be made in determining the etiological factors influencing each. Thus, a combination of unknown biological factors are considered to cause autism. While very little is actually known, recent studies have found evidence that the autistic population exhibits a variety of neurological and biochemical abnormalities. On-going research is also investigating the influence of complications of pregnancy and birth and genetic factors. At present autism is considered a "final common pathway" because research suggests that there are several factors and conditions which may result in the syndrome. For more information the reader is referred to Balley, Phillips & Rutter, 1996.
Pregnancy and/or Birth:
There are a variety of pre-, peri- and postnatal conditions that may cause brain dysfunction which may possibly be associated with autism. These include maternal rubella or illness, Rh incompatibility, untreated phenylketonuria, anoxia at birth, and infantile seizures. Research findings, while suggesting a connection, have failed to substantiate any direct causal effects.
Although research has failed to find a specific gene marker for autism, findings of familial studies and the greater prevalence in males than females strongly suggest a possible genetic involvement. Among identical twins both are afflicted with autism in about 82-86% of cases. The rate among fraternal twins is 25%. The syndrome of autism has been found to be more common in the siblings of a child with the disorder than in the general population. That is, if parents have one child with autism, they have an increased chance of having another child with the same disorder (i.e., the rate of autism amongst siblings is approximately 2%). In 7 to 10 percent of the autistic population, a syndrome called Fragile X has been identified, involving a break or weakness in the formation of the X chromosome. The correlation between Fragile X syndrome and autism has not been proven.
For many years neurological factors have been surmised to influence the etiology of autism as indicated by the occurrence of other central nervous system disorders in association with autism. Unfortunately, the exact nature of the potential contribution of such factors has remained elusive.
Much of the research in this area has involved the study of the neural transmitter serotonin. Studies have indicated that the level of blood serotonin in autistic individuals remains high despite normal maturational decreases throughout childhood. It has been suggested that this failure to show a maturational decrease in blood serotonin levels is related to an immature neurologic system in the autistic population. As with other areas of etiological research, conclusive evidence remains elusive.
TREATMENT OF AUTISTIC INDIVIDUALS
There is no known cure for autism. Although many claims regarding "cures" for autism through diet, mega-vitamin therapy, "patterning", listening training, etc. have been made, it is important to note that such claims have never been substantiated. Often these promises have succeeded only in providing parents with a false sense of hope and, subsequently, disappointment when expected outcomes have not been achieved.
Pharmacological, or drug treatments, have, historically played a role in attempting to alleviate the symptoms of autism. However, as no specific neurochemical causes of autism have been identified, drug treatments have only been helpful sometimes in alleviating specific behavioral symptoms. When used adjunctively with educational and other behavioral treatments, drug treatments can, in some cases, be therapeutically beneficial. Because of the potential for harmful long-term side-effects of drug treatments, these must be considered and weighed against possible benefits.
The most successful methods of education/treatment for autistic individuals employ behavioral methods to teach adaptive behaviors that will be useful throughout the child's lifespan. To facilitate this, the child's strengths and needs are identified and used as a basis for establishing developmentally and ecologically appropriate goals. Working toward improving the child's ability to communicate, to adapt to change, and to relate socially have proven to be the most effective goals for which to strive.
For more information please contact the society for treatment of autism
at (403) 253-2291
A. Diagnosis: how a child is like a certain group of children
There is no "test" for autism. The diagnosis is generally made by referring to a list of specific criteria (see below)
II. PERVASIVE DEVELOPMENTAL DISORDERS
Characterized by severe and widespread impairments in several areas of development: reciprocal social interaction skills, communication skills, or the presence of stereotyped behavior, interests and activities (TRIAD OF IMPAIRMENTS)
a. Autistic Disorder
b. Aspergerís Disorder
c. Rettís Disorder
d. Childhood Disintegrative Disorder
e. Pervasive Developmental Disorder (Not otherwise specified)
III. DIAGNOSING AUTISM (No Test For)
a. A total of six (or more) items from (1), (2) and (3), with at least two from (1) and one from (2) and (3):
(1) qualitative impairment in social interaction, as manifested by at least two of the following:
i. marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interactions
ii. failure to develop peer relationships appropriate to developmental level
iii. 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)
iv. Lack of social or emotional reciprocity
(2) qualitative impairments in communication as manifested by at least one of the following:
i. delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
ii. In individuals with adequate speech, marked impairment in the ability to initiate and sustain a conversation with others
iii. stereotyped and repetitive use of language or idiosyncratic language
iv. Lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
(3) restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
i. encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
ii. apparently inflexible adherence to specific, nonfunctional routines or rituals
iii. stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole body movements)
iv. Persistent preoccupation with parts of objects
b. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years: (1) social interaction, (2) language as used in social communication, or (3) symbolic or imaginative play.
c. The disturbance is not better accounted for by Rettís Disorder or Childhood Disintegrative Disorder.
*AUTISM IS A VERY HETEROGENEOUS DISORDER - IF YOU WALK INTO A ROOM OF AUTISTIC CHILDREN YOU ARE OFTEN STRUCK MORE BY THE DIFFERENCES THAN THE SIMILARITIES.
IV. ASSOCIATED FEATURES (commonly associated with autism but do not have to be present for the diagnosis to be made)
a. short attention span/impulsivity
b. self injurious behavior
c. odd responses to sensory input
d. abnormalities of mood
e. uneven profile of skill development
f. abnormalities in eating, drinking or sleeping
g. unusual fears or anxieties
h. presence of special abilities
V. EPIDEMIOLOGICAL/POPULATION CHARACTERISTICS
a. Prevalence rates
3.1 to 5.0 per 10 000 births for autism
15 - 20 per 10 000 births for the PDD spectrum
b. Sex ratio
approximately 3 - 4 times more males than females are afflicted with autism
c. Family/Genetic Information
among identical twins both are afflicted in about 82 - 86% of cases
the rate among fraternal twins is 25%
2/100 siblings of autistic children are also later diagnosed with autism
e. Other Information
25% of all autistic children develop seizures
IQ at time of diagnosis and the development of speech before the age of 6 represent the most reliable prognostic factors
a. Autism is considered a FINAL COMMON PATHWAY because research suggests that there are several factors and conditions which may result in autism.
b. There is evidence to suggest that all of the following are associated with autism:
brain abnormalities (e.g., small cerebellum)
chemical imbalances (e.g., opiods, serotonin)
hereditary disorders (e.g., fragile X)
prenatal infections (e.g., rubella)
VII. ASPERGERíS SYNDROME
a. Cognitive skills tend to be less impaired than those of the autistic individual
b. Social skills tend to be less impaired than those of the autistic individual
c. Communication skills tend to be less impaired than those of the autistic individual
d. Tend to display less bizarre behaviors than those of the autistic individual (stereotypical behaviors and preoccupations may be more subtle)
e. Motor skills tend to be more impaired than those of the autistic individual (i.e., may appear quite clumsy)
* Sometimes referred to as HIGH FUNCTIONING AUTISM
VIII. RETTíS DISORDER
a. Rettís syndrome occurs only in females while autism occurs in both males and females
b. Motor skills tend to be significantly impaired (e.g., may be late learning to walk, gait may be unusual)
c. With Rettís syndrome there is often a period of normal speech development prior to the onset of symptoms
d. Often associated with bruxism (teethgrinding), hyperventilation, air swallowing or breath holding
e. Stereotypical hand movements (usually handwashing movements) are always present
f. Tend to have better eye contact than those with autism
IX. CHILDHOOD DISINTEGRATIVE DISORDER
a. Characterized by apparently normal development for at least the first two years of life
b. Children lose previously acquired skills (e.g., language abilities, social skills, play skills, motor skills
X. PERVASIVE DEVELOPMENT DISORDER (Not Otherwise Specified)
this diagnosis is generally reserved for those children who display impairments in language, social skills and behavior but who do not meet the specific criteria for autism
XI. FRAGILE X
represents a subtype of autism with a known etiology (genetic disorder)
XII. WORKING WITH AUTISTIC INDIVIDUALS
How are autistic individuals different individuals from other individuals who are simply developmentally delayed?
a. Autistic individuals generally display less social interest and are less interactive than the typical developmentally delayed individual
b. Developmentally delayed individuals tend to show more intent and motivation to communicate than autistic individuals
c. Autistic individuals tend to show more normal physical/motor development, while developmentally delayed individuals often show impairments in these areas
d. Autistic individuals tend to be more rigid and inflexible than the average developmentally delayed individual
e. Developmentally delayed individuals tend to show similar deficits over a wide range, while autistic individuals tend to show a more variable deficit pattern
Points to keep in mind when working with individuals with autism:
Individuals with autism establish routines or "habits" very quickly, therefore prompt reliance can become a problem. One way to avoid prompt reliance is to wait and give the individuals a sufficient amount of time to respond before prompting. Also, only provide the minimal amount of prompting necessary for the individual to complete the task and experience success.
Some autistic individuals find structure and routines very comforting. That is, they become distressed when their routine is disrupted. Trivial changes can be very disconcerting for some autistic people. Therefore, it is important to warn them about impending changes and help them to deal with their distress in an appropriate manner (e.g., encouraging them to use their words/signs and describe their feelings). Also, gradually exposing the autistic individuals to "changes" (e.g., new activities and outings)can help them to learn to be less rigid.
Research has shown that autistic individuals have trouble generalizing what they learn. For instance, what they learn in one environment (e.g., the classroom) may not generalize to other environments (e.g., living room) or what they learn with one staff member may not generalize to others. Teaching and practicing skills in natural situations (i.e., activity-based intervention) can help to avoid some of the problems associated with generalization.
Autistic individuals often do not learn at the same rate as other developmentally delayed individuals (e.g., more erratic learning curve). Thus, they may appear to know something one day and forget the next. Thus it is important to consistently work on the individualís goals and give them ample opportunity to practice and learn new skills. (Also see difficulties related to generalization, above.)
Autistic individuals are sometimes difficult to motivate. For many autistic children social praise (i.e., something "typically developing" children find very rewarding) is not very reinforcing for them. Therefore, it is important to continually search for and identify objects, activities, etc., that the individual enjoys, as these can be used to motivate them in task situations and/or reward them for displaying appropriate behavior. As you develop a relationship with a particular individual social praise may become more meaningful and reinforcing to the individual.
Many autistic individuals engage in repetitive play/activity sequences (e.g., lining up toys). In order to expand the individualís repertoire, staff should attempt to modify and expand play routines. This can be achieved by modeling new routines and encouraging the individual to imitate.
Many autistic individuals do not engage in eye contact with others and do not look at what they are doing. Thus, they need to be prompted and encouraged to both engage in eye contact and visually attend to the tasks they are engaged in. One way to encourage eye contact is to wait for them to give you eye contact before continuing on with a desirable activity. For example, if you are playing music for an individual and they appear to enjoy it, periodically stop the music and wait for them to look at you, when they do, you can respond by saying "oh...you want more" and continuing with the activity. Such a procedure helps the individual to learn that eye contact can be a powerful communication tool that can be used to indicate their desires.
Many autistic individuals have difficulty imitating the actions and verbalizations of others. Therefore, it is important to provide them with opportunities to learn how to imitate. However, once the individual begins to engage in vocal imitation it is critical to start encouraging reciprocal rather than echolalia speech.
Many autistic individuals engage in stereotypical/self stimulatory behaviors (stimming). For some, these behaviors serve a specific purpose (e.g., a way of reducing anxiety, a way of blocking out the "real" world), for others the behaviors are more of a habit. When autistic individuals are "stimming" they should be encouraged to engage in more appropriate activities. This can often be achieved through neutral redirection. Also, it is important to reinforce the individual when they do engage in appropriate activities (e.g., playing with a toy in appropriate manner). It is likely that as the individual learns more appropriate activities to engage in that they self stimulatory behaviors will reduce in frequency.
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Last updated February 2006.