Special Education and Provincial Schools Branch, April 1990
As more students with autism attend their local schools, more educators require information about this disability. This monograph is intended to provide an introductory understanding of autism. While it is not a comprehensive guide to planning for the student with autism, it does provide an overview of the disorder and a bibliography of additional sources of information. Further information or training is also available from the Ontario Society for Autistic Citizens (416-731-3629) or the Geneva Centre (416-968-7877).
Most of this paper deals with the clinical view of autism and is based on the definition of the characteristics of autism outlined in the American Psychiatric Association's Diagnostic and Statistical Manual of Mental Disorders (3rd ed., rev.). Because autism has a major impact on family life, the monograph concludes with two accounts, written by parents, of the day-to-day realities of living with an adolescent with autism. The individuals described in these accounts represent very different manifestations of the disorder.
Autism has been found throughout the world in families of all racial, ethnic, and social backgrounds. It occurs in approximately twelve of every ten thousand births and is several times more common in boys than in girls.
It seems likely that there have always been children with autism, although it is only since 1943 that they have been recognized as a distinct group and thought of separately from other severely developmentally handicapped children. There are several theories about the cause or, more likely, causes of autism, but as yet there are no definitive answers. It is clear, however, that autism is not caused by poor or rejecting parenting.
For educational purposes in Ontario, autism has been identified as a communication exceptionality, and educational interventions have focused on the child's need to communicate with others. More accurately, autism is a severe, lifelong, pervasive developmental disorder, identifiable by the presence of the following three characteristics:
The following associated features are often present:
This disorder is characterized by a range of functioning levels; approximately 20 per cent of children with autism are in the normal to superior range of intelligence, and up to 80 per cent function below the normal range of intelligence. All children with autism have impairments in the three key areas listed above and may or may not have any of the associated features. The degree of impairment and the extent of their abilities differ significantly from student to student. As a result, it is essential that planning occur on a highly individualized basis and that professionals from many backgrounds work together if the needs of these students are to be met effectively.
The following sections of this monograph elaborate on each of the facets of this definition of autism. Taken together, they provide educators with a phenomenological sketch of a child with autism and some preparation for dealing with the special qualities and needs of their children.
Significant Impairment in the Development of Social Relatedness
Children with autism may exhibit a general lack of reciprocity and social responsiveness in their interactions with other children, an unwillingness or inability to engage in co-operative play, a tendency to spend inordinate amounts of time doing nothing or pursuing ritualistic activities, an unwillingness to make personal friendships, and a lack of empathy with the feelings and responses of others. They may also display an apparent lack of interest or sympathy when others are in pain or distress. This failure to appreciate or react appropriately to the feelings and emotions of others is a characteristic of almost all children with autism and may impede their development of friendships in later life.
Their poorly developed play skills may be one of the reasons why these children have difficulty interacting with their peers. They do not generally take part in other children's games and they tend to ignore their peers when they are young. As a result, as they grow older and more inclined to join in activities with their peers, they lack the necessary skills to do so.
These children do not tend to seek opportunities for interaction with other children and may find it difficult to tolerate the physical proximity of peers. They may actually physically withdraw from the presence of others, or they may signal their desire to do so by inappropriate eye contact or minimal responsiveness. As a result, they are prevented from acquiring, practicing, and sharing social skills, which, in turn, makes them less likely to be sought out by their peers. Since they may show an increased interest in and awareness of others during adolescence, their problem often becomes a lack of social skills rather than a lack of social interest. While no training program, however well-designed and implemented, can make these children normal, pragmatic, functional educational and community programs that emphasize the teaching of social skills in real-life situations can improve their social competence.
Significant Impairment in Verbal and Non-verbal Communication
Individuals with autism commonly experience severe difficulties in using and understanding both verbal and non-verbal language. In this respect they are behaviorally different from their peers rather than developmentally delayed, although a delay in their development is also usual. Their basic deficit seems to be in their capacity to use language for social communication, which is evidenced in the following ways:
Communication involves both understanding (receptive skills) and providing information (expressive skills), and students' abilities in these areas may be widely divergent. Some students will have good comprehension ability but poor expressive skills, while others will have good expressive skills but poor comprehension ability. The following two subsections examine receptive and expressive communication in turn.
Young children with autism do not respond to conversational language in the same way as other children. They may echo the words of others, squeal, or show no interest in conversation. As well, it is likely that their inability to understand and use language, gestures, and facial expressions leads them to focus on the intensity of the communication (e.g., the loudness of the voice, the urgency of the gestures) rather than on its meaning. A child may incorrectly react to being scolded by laughing and jumping, for example, because the scolding is exciting and focuses attention on him or her.
Students with autism often fail to understand the meaning of words or phrases that are abstract or that have more than one meaning. They also tend to take words and expressions literally. Thus, they may misunderstand common expressions such as "Step on it".
Because they are unaware of the subtle non-verbal cues of communication, some of these children are unable to co-ordinate their own speech with non-verbal forms of expression and to interpret the non-verbal cues used by others. Similarly, they often have trouble understanding language that relies on such imaginary activities as those used in pretend and make-believe games. Because they do not appreciate the benefits of language use, they may not even pay sufficient attention to the speaker.
The ability of these individuals to understand and respond to language usually improves with appropriate education or treatment. Their ability to learn and interpret language is also often related to their degree of intellectual development.
About half of all students with autism do not acquire verbal language. These students may express their frustration at being misunderstood through excited behaviour, screaming, crying, tantrums, or acts of aggression or self-abuse. However, these children may be taught alternative or augmentative forms of communication such as the use of meaningful sounds, gestures, signs, or pictorial systems.
One prerequisite skill for learning gesture and sign-language systems is the ability to imitate motor patterns. The absence of this basic skill may make it necessary for many students with autism to learn simpler communicative approaches, such as pointing to pictures and objects to express their needs and interests. Some students who are not able to communicate verbally may master the use of these systems fairly readily, while others may require extensive training before they are able to use them.
The prognosis for skill development is best for those children who develop spoken language before the age of five. Even they, however, will experience difficulties in using verbal language in social situations. For example, they may use language in socially inappropriate ways, such as saying out loud the one- or two-word utterances they have learned, without intending to communicate with another person.
Often these students do not understand why people talk to one another or what they talk about. Their problems with the give and take of speaker-listener relationships may be aggravated by a general difficulty in maintaining a social rapport when speaking. When listening they seldom reinforce the speaker through smiles, head nodding, or other signs of approval, and when speaking they experience difficulty in shaping their own speech in response to the cues of approval, amazement, disbelief, or boredom that they are receiving from their listeners. While other children with communication problems frequently use body language to communicate, children with autism often do not.
Students who have been taught complex grammatical skills may have problems in conversation. They may exhibit stilted speech. They may confuse their listeners by the misuse of pronouns; for example, a student might say "He wants to go to the park" instead of "I want to go to the park." They might also have problems with the content of a conversation because they go on and on about topics that have no interest for the listener. When interrupted, they almost invariably reinitiate the topic, even when there is supposed to be turn taking. Such extremely repetitive talk leaves no room for questions or exchanges of opinion.
Individuals with autism often have difficulties with the production of speech, including volume, pitch, stress, rate, rhythm, and intonation (e.g., a monotonous tone, questioning intonation, or high pitch).
Such problems may reflect a lack of understanding about what is socially acceptable rather than defective speech production. As well, poor vocal quality may reflect the speaker's failure to monitor his or her speech characteristics on the basis of feedback supplied by the listener.
These individuals often exhibit echolalia, the repetition of the words, signs, phrases, or sentences spoken or used by other people. Echolalia seems to be a stage in the normal development of expressive language, in that it is a part of a progression from a non-verbal state through echoic verbalization to spontaneous, creative, non-echoed utterances. It also has communicative value and may serve as functional communication. For example, in response to the question "DO you want a cookie?" individuals with autism might echo "Want a cookie?" to mean yes. Or they might repeat over and over what they have been told or have heard in the past (e.g., "Sit down and work") as a means of regulating their own behaviour. When they begin to change some of what they have heard by adding a word or two or by changing the intonation (this is called "mitigated echolalia"), they are demonstrating progress, since they are beginning to use language creatively. For this reason their use of language in this way should be encouraged.
Unique Patterns of Behaviour
Children with autism display a variety of behaviors that are either unique to them or different from those of their peers. Often these differences are clearly identified when a child enters the school system. Since these behaviors may severely restrict the child's ability to adjust to school and to benefit from instruction, it is important that educators be able to identify and understand them.
This section examines five of these behaviors.
For example, a child might be preoccupied with tipping a toy car upside down and spinning its wheels and might totally ignore a teacher's suggestion that the toy be rolled along the floor in the usual way.
The features described in this section may occur in combination with the central characteristics of autism. However, not all children with autism display these associated features, and conversely, children who display these features do not necessarily have autism.
Variability of Intellectual Functioning
While children with autism demonstrate a wide range of intellectual functioning, from profound impairment to above-normal performance, 75 to 80 per cent of them function significantly below the expected range of intellectual ability for their age.
Uneven Developmental Profile
Many of these children are able to function in some areas at higher levels than their general level of cognitive functioning. For example, an eleven-year-old student might demonstrate math skills at the counting and basic addition level, self-help skills close to age level, and social-interaction skills at a preschool level. Consequently, this child's performance is characterized by an inconsistent pattern of strengths and weaknesses, which can lead one to believe mistakenly that the child can perform at a higher cognitive level than is actually the case.
Unusual Perceptual Responses
Children with autism demonstrate unusual responses to a variety of sensory stimuli and may give the impression of not seeing or recognizing the people or things around them. For example, a child who does not react at all when the school bell suddenly rings and who appears to be deaf may, moments later, be attentive to the sound of a candy wrapper being removed.
These children may experience reduced or unusual sensitivity to pain, temperature, touch, or texture. Some of them do not appear to recognize danger or notice pain and may even ignore injuries to themselves. As a result, injury and illness in these children may go undetected.
Unusual postures, co-ordination, and physical behaviors may also be related to difficulties in sensory perception. Since some of these may be stimulating to the child, they may be self-reinforcing.
Aggressive or Self-injurious Behaviour
Children with autism may exhibit aggressive or self-injurious behaviour, which could include finger biting, hair pulling, scratching, or head banging. It is important to note that these behaviors are often communicative (e.g., expressing pain, protest, or frustration) rather than simply reactive.
Difficulties in Sleeping, Toileting, and Eating
Some children with autism have problems falling asleep, while others may sleep for only one or two hours each night. Still other children may have difficulty developing toileting skills; often they will require special attention and programming to overcome prolonged delays in acquiring these skills. Some children may exhibit problems with eating as well; for example, their diets may be limited to a few preferred items and may be difficult to change because of their resistance to change or their odd responses to smell, texture, or colour. Other children with autism drink excessive amounts of fluids or develop an extreme preference for one drink over another.
The symptoms associated with autism contribute to a variety of learning problems that necessitate the use of different instructional approaches. The following are five common problems that may affect learning: lack of internal motivators, lack of response to social reinforcement, difficulty learning in a group, difficulty with generalization and discrimination behaviors, and interference from competing
Lack of Internal Motivators
Students with autism generally do not seem to derive internal satisfaction or pride from the completion of tasks. They do not find joining in, gaining acceptance from peers, or sharing to be intrinsically rewarding. Since they are not challenged by their own internal goals, learning is more likely to occur when external motivators or rewards are used. However, since not all naturally occurring external motivators have much interest for these students, special motivators may have to be carefully selected for them. For example, as a reward for completing a task, a child may be allowed to engage in selfstimulatory behaviour for a brief time.
Lack of Response to Social Reinforcement
Because of the gaps in their social-interaction and communication skills, students with autism may neither understand nor value verbal praise, hugs, or increased personal contact. In fact, some individuals may find social reinforcement such as pats and tickles aversive. Others may misunderstand or ignore reinforcement such as winks and nods because they are too subtle or because they are insufficient motivators. In most cases more obvious reinforcement, such as animated praise, will be needed.
Difficulty Learning in a Group
The noise, and distraction that occur in group situations can sometimes interfere with the task of learning. Students with autism may find it particularly difficult to screen out extraneous stimuli and to concentrate on the task at hand.
The complexity of group activity may leave students unable to follow the flow of what is happening. They may follow only bits and pieces of the proceedings, frequently the beginning or end, and may therefore miss the full context of the activity. In such situations they may appear to be withdrawn or non-compliant, when, in fact, they perceive the group activity as a hodge-podge of stimuli that they cannot meaningfully structure.
If these students are not internally motivated and are unresponsive to social reinforcement, group affiliation is unlikely to be immediately reinforcing. In fact, the proximity to other students may be initially distressing to some of these children. It is important, however, that group-work skills be included in classroom programming so that students learn how to function successfully in a group.
Difficulty With Generalization and Discrimination
Children with autism often learn tasks exactly as they are taught and tend to be quite rigid in the execution of learned skills. Frequently, they focus on non-essential elements of the task or learning situation. They may also fail to learn to discriminate subtle, or perhaps even obvious, changes in the environmental context that would require them to modify their behaviour. For example, if they have been taught to remove their shoes on entering the family home, they may also remove their shoes when entering a variety store while on a community outing.
Thus, it cannot be assumed that when these students learn a particular skill in one environment, they can then perform that skill in another environment. They need to learn skills in the environments in which they will use them. For example, if they learn tooth brushing at school, it is likely that some reteaching of that skill will be needed at home.
Interference From Competing Behaviors
Self-stimulatory behaviors that often accompany autism, such as hand flapping or the spinning of objects, can be more reinforcing for the child than either the task at hand or the rewards for completing the task. The child's short attention span for tasks initiated by others and resistance to change in routines can also interfere with learning. For these reasons it is important that the reinforcement for the desired behaviors be more powerful than the reinforcement for the competing behaviors.
Traditionally professionals have focused on the child and have tended to view the child's family, or at least the child's parents, as caretakers, teachers, or trainers. They have often expected parents to continue to implement programs in the home, frequently at the expense of other priorities. Today there is a growing awareness that the child's disability places profound and unrelenting stress on both individual family members and on the family unit as a whole. In this holistic approach to children with autism, the needs of the child's family are considered as important as those of the child, and intervention strategies seek to support the family's strengths and goals as it copes with the difficulties of raising a child with autism. This section examines the impact of autism on the child's family.
The families of children with autism often feel the loss of the normal child they had hoped for and the shattering of their dreams for the child's future. They must work through the feelings of denial, anxiety, anger, depression, and guilt in order to move beyond the sense of loss. (Note that these stages are not sequential, nor does everyone experience all of them.) Grief is a needed, normal reaction to loss, and thus serves a healthy function for family members. As a result, therapy is often not required. However, there is nothing permanent about acceptance, when the daily chores of raising a child with autism clash with the lost dream of a normal child. Thus as the child and the family move through the life cycle, the feelings listed above may be recalled and may need to be addressed.
These families report more coping problems and stress than do families with other types of disability. Research has found that older children with autism are more stressful than younger ones and that families with less dependent children who have adequate support and services cope better. Family members also experience stress from a number of significant external sources, including financial demands, limitations placed on career goals, and feelings of isolation. While the family usually receives ideas, respite, and programming strategies from a service system that includes educational, mental health, and medical professionals, this involvement may result in some loss of family privacy. As well, the demands made on the family increase as the child ages, since the family is often considered the child's principal teacher.
The following two accounts reflect the significant stresses associated with raising a child with autism. They also reflect the joys, hopes, and love that are part of the total experience of these families.
First call is at 7:00 a.m. This is usually a difficult time as Adrian almost never wants to get up - normal for any teenager. Then I shower. Second call: "Get up and go to the washroom." Third call: we steal his covers. Finally he gets to the washroom, where he shuts the door and sits down until called again. Back to the bedroom and a talk about what to wear, colours, etc. After many prompts (twenty to twenty-five), he may make it to the kitchen by 7:45; if not by 7:55, it means no breakfast, as the cab comes somewhere between 8:00 and 8:45. The longer the wait the more hyper he becomes, jumping up and down, biting his hand, etc., and they wonder why he is unsettled in the car. Off to school; it feels like a hard day's work is already done.
Adrian usually arrives home by 3:15 to 3:30. It's always interesting to hear how the cab ride went. Lately there have been more minuses than pluses. (We have even walked him to school to encourage more appropriate behavior.) The first thing he wants is dinner; however, a snack is provided instead. Special treats are provided for good days at school and in the cab. The daily communication books are invaluable and irreplaceable in providing information on daily activities. At least you know if the response to the question "What did you do today?" is correct. This also helps improve his communication skills. After snack, a free time, which in the summer is playing on the swing.
The challenge is to keep him occupied in a constructive manner, bearing in mind his attention span is short. It has stretched from two to three minutes to about thirty to forty-five minutes now, depending on the activity. Adrian likes to listen to music and rock.
He is not a TV watcher. In spite of the snack, Adrian constantly says, "Time to have dinner." Because of his appetite, he is quite good in the kitchen. He helps prepare the vegetables for dinner and always sets the table. When he helps with the preparation, he has to be constantly supervised to make sure that the food reaches the table. Table manners require constant attention, the same as with normal children; however, it takes years of repetition. After dinner is clean-up, and he helps dry the dishes.
Free time, then some homework, which takes the form of either numbers, money, reading, printing, or sewing. Shower, then bed.
The day-to-day routine and necessities of life all require consistency in approach and constant repetition. He does not usually do constructive things on his own; he has to be prompted. What is the weather like? What do you wear? This is all part of the daily conversation. Whatever he needs for the school day and activities has to be organized for him. It is like having a small child. He does not look after his belongings. Therefore, time is spent chasing swimsuits, towels, mitts, hats, etc., that have been left all over the place.
On the surface it may not appear to be a tiring day, but one of the draining things is that you always have to keep an eye on Adrian whether it is free time or not. Where is he? What is he doing? Unfortunately, there are some unacceptable behaviors that have to be stopped, and if he is not supervised he will indulge himself. So we are constantly getting up and down or stopping what we are doing to watch him. Any activity that he does has to be done with someone. One-on-one and with constant encouragement if you want him to do it himself. It is usually faster and easier and less frustrating to do the things yourself; however, the goal is Adrian's involvement and improvement. If this were all you had to do, it would not be as difficult. However, this is added to other children, family responsibilities, and your job, adding tremendously to the level of stress.
One would think as your child gets older, it would become easier. It is not. The older they are, the wider the gap becomes between them and their peers. What is cute for a small boy is not cute for a teenager. The availability of programs and of people to help do things with them decreases. Their need for more "room" increases, but their ability to function in the day-to-day world is lacking, and it requires innumerable hours to teach them.
How do we give Adrian the independence he needs yet the supervision he requires? Because of his problems with communication, people in the community find it difficult to talk and deal with Adrian's behaviors. He has no friends; therefore, all his time is spent with us or in school . Comparing this lifestyle to that of "normal" teenagers, YOU can imagine how frustrating it is for him and for ourselves.
Living with a child with autism, you really get to know what the important things in life are. Small achievements and continuing progress, though slow, keep you going.
When I was first approached to write about my experience of raising a child with autism, I realized that I had never actively thought about it. I guess we have always thought of home as home - the fact that he is autistic doesn't really enter into how we feel about him. He has been, and will continue to be, an important and loving member of our family.
Our family of four consists of my husband, our eldest son who is 20, Lorne who is 18, and me.
Contrary to what the literature says about people with autism, Lorne is a sweet, gentle, and affectionate young man who always has a smile on his face. The rest of us have great admiration for Lorne because, despite the immensity of his handicap and all that he must put up with, he has managed to keep his sunny disposition.
I don't know if having Lorne has changed our lifestyle, but I am sure that it has changed us. Living with Lorne has taught us to become more tolerant, more understanding, and more accepting of people who do not fit into "the mainstream of society".
Lorne is a delight to have around the house. He is helpful, eager to please, and takes great pride in his household responsibilities. Lorne derives such pleasure from small things, and demands so little, that we have felt this tremendous desire to provide him with so much.
Then there are the hard times - like watching our child being singled out and made fun of by others, like the hurt of knowing that our lively child will not have as full and complete a life as the rest of us. One of the most difficult things that we have had to think about and plan for is Lorne's future. Knowing that Lorne will be less independent than other adults is a source of great concern. With an eye to the future, we have always set goals for Lorne and worked hard towards making him as independent and confident as possible. From the very beginning, this has involved making decisions about schools, programs, etc. It has also meant ongoing assessment and re-evaluation of these programs.
We have tried to be sure that, as a family, we have provided Lorne with as many and as varied experiences as possible. Lorne has always been included in all family activities. He enjoys going to restaurants, watching movies, and participating in various sports. Lorne has happily attended family parties, graduations, weddings, and other events. Long ago we discovered that, if we were comfortable with Lorne, other people were too. We also discovered that letting people get to know Lorne benefited them as much as him.
We have tried to get Lorne "to become his own person". We have encouraged sports and hobbies that accentuate Lorne's strengths. Lorne has completed beautiful rug bookings and spectacular jigsaw puzzles and enjoys working on his computer. Lorne participates in and loves swimming, skating, tennis, cross-country skiing, and, more recently, downhill skiing.
I don't think that our lives are that different from those of other families. Many times I have heard parents complain about things they haven't done because of their handicapped child. We have always found a way of working things out together - when we really wanted to. Perhaps it has been more difficult - but never impossible.
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