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Module 4: DIAGNOSES

Autism and Autism Spectrum Disorders

Autism is a neurological disorder causing lifelong developmental disabilities that usually appear during the first three years of life. It occurs in approximately 1 out of every 500 individuals (Center for Disease Control and Prevention, 1997). It is four times more likely to occur in boys than girls and crosses all racial, ethnic, and social boundaries. However, when girls are affected they are likely to be more seriously disabled and to have lower IQ scores.
As early as the late eighteenth century, medical texts described cases of children who did not speak, were extremely aloof, and who had unusual memory skills. It was not until 1943, however, that Leo Kanner, a psychiatrist at John Hopkins Hospital in Baltimore, first identified autism. He described the background and behavior of 11 children with very similar characteristics:

Difficulty developing relationships with people
Delayed speech acquisition and difficulty using speech once it is developed (echolalia, pedantic speech)
Repetitive and stereotypical behavior (stimulating behaviors) such as rocking, waving fingers in front of face, twirling objects or flapping arms.
Lack of imagination
Good rote memory
Obsessive insistence on sameness or routine
Normal physical appearance
Poor or no sense of safety to self
Impaired sense of difference between private and public behavior

Kanner called this condition Early Infantile Autism, from the Greek word self (auto), because these children seemed locked inside themselves. The general diagnosis used today for this cluster of symptoms is Autism or Autistic Spectrum Disorder. This refers to impairments in social interaction, communication, and imaginative play prior to age three. Children will exhibit stereotyped behaviors, interests and activities.

Research is still needed to determine the cause of autism, but there appears to be several possibilities, each with distinct neurological effects. Some cases of autism have been associated with untreated phenylketonuria (PKU), Rubella, Fragile X Syndrome, and chemical exposure during pregnancy. No known factors in the psychological environment of a child have been known to cause autism. It can occur by itself or in association with other disorders, such as, epilepsy, mental retardation, attention deficit disorder, oppositional defiant disorder, attention deficit hyperactivity disorder, and mood disorders.

Autism is a spectrum disorder. Autism Spectrum Disorder means that there are other diagnoses that are considered to be within the autistic "family", but have specific developmental, social, and/or behavioral characteristics that set them apart from the general diagnosis of Autistic Disorder. These diagnoses include:

Asperger's Syndrome - impairments in social interactions and the presence of restricted interests and activities. There are no clinically significant delays in language and testing in the average to above average range of intelligence.
Pervasive Developmental Disorder - Not Otherwise Specified - (PDD-NOS) - when the child does not meet the criteria for a specific diagnosis, but there is a severe and pervasive impairment in specified behaviors, the diagnosis of PDD-NOS is given.

Rett's Disorder - a progressive disorder which to date has only occurred in girls. Periods of normal development occur, and then the loss of previously acquired skills. There is a loss of purposeful use of the hands replaced with repetitive hand movements. This disorder is usually evident between the ages of one and four.

Childhood Disintegrative Disorder - Normal development occurs for at least the first two years, with a significant loss of previously acquired skills thereafter.

Because there are no medical tests for autism, at present, the diagnosis must be based on observation of the child's behavior. An individual with autism will manifest behaviors in a variety of forms and degrees, but all will display some degree of impaired social relationships, difficulty in verbal and non verbal communication, have difficulty with transitions, and have a restrictive repertoire of activities and interests in imaginative play. No two people with autism display the same characteristics.

A lack of social interaction is a hallmark of autism. People with autism often:

Have difficulty making eye contact
Are not demonstrative about their attachment to others
Voluntarily spend an unusual amount of time alone
Often develop a strong attachment to particular objects
Have a high pain threshold and often do not seek comfort when hurt or upset
Experience difficulty in perceiving the emotions of others
Have few friends

Although most children do not begin to withdraw until around two years of age, parents usually pick up signs of problems in social development before that. When a child with autism does begin to withdraw from the outside world, they may begin to engage in self-stimulating behaviors described earlier. During the years between three and five, the isolation of the child with autism seems especially severe and the delayed appearance or absence of language is an important factor that makes socialization difficult. The lack of appropriate emotional responsiveness is very distressing for families. Children with autism express joy, fear, anger, and other moods, but they are out of sync with social expectations. For instance, they may be completely miserable over a slight reprimand such as "put your shoes away" and completely ignore an important one such as "get out of the road".

After the age of five, there can be an improvement in social skills, especially in the more able child. However, learning to behave appropriately and interact with others is much harder for children with autism than it is for other children. There is a strong need to have consistency and a structured environment. Children with autism exhibit a greater potential for tantrums and other inappropriate behavior that restricts typical social interaction with peers. Play skills must be taught and social skills modeled.

Many children with autism seem to prefer to be alone and engage in unusual activities, such as playing with bits of string, spinning the wheels on a car over and over again, or walking the perimeter of the backyard repeatedly. Some children are compelled to "run" away from their house or yard, which poses a great safety concern. It is critical to know if a child is prone to slipping away so that the environment can be secured for safety.

As they enter adolescence, most youths with autism become more flexible in how they respond to their environment and show interest in people and the world around them. Some teenagers start to realize the difference between themselves and others, and this can be a source of frustration or even depression. Depression is particularly problematic for children with Asperger's syndrome.

Areas affected by autism:

1.Communication:

Language develops slowly or not at all
Uses words without attaching the usual meaning to them
Communicates with gestures instead of words
Short attention span

2.Social Interaction:

Spends times alone rather than with others
Shows little interest in making friends
Less responsive to social cues such as eye contact or smiles

3.Sensory Impairment:

Tactile defensiveness: Avoids letting others touch them, becomes distressed with hair washing or cutting, changing clothes, may not like getting hands or feet dirty
Oral defensiveness: dislikes certain textures of food, tooth brushing or face washing
Auditory defensiveness: certain noises are disturbing such as vacuum cleaners, fire alarms, or even rain hitting a roof. Some children may scream to block out the sounds
Gravitational insecurities: fear of change in position or movement (ex. Going up or down stairs)
Visual problems: sensitivity to light and visual distraction; may startle more easily and avoid eye contact

4.Play:

Lack of spontaneous or imaginative play
Does not imitate others' actions
Does not initiate pretend games

5.Behaviors:

May be overactive or very passive
Throws tantrums for no apparent reason
Perseverates (shows an obsessive interest in a single item, idea, activity or person)
Lack of danger sense
May show aggression to self or others
Often has difficulty with changes in routine

While many children avoid direct eye contact, some have incredible peripheral vision and do not have to look at you to see you. Some children with autism can only tune into one sense at a time. For example, a child may be tuned into the auditory sense and focused on listening. That child would not seem to be paying attention to what is visual. However, children with autism are incredibly aware of what is going on around them despite giving the appearance of being indifferent or unaware.

Some children show a distinct lack of attachment to people. Some parents never hear their child call them Mom or Dad. Nevertheless, many children do show affection for their parents, as well as people who show respect for the child, have a calm manner, and show interest in the child's abilities.

Many children with autism appear to live a life of extreme isolation. Contributing to the isolation is the need that many children have for sameness. They may become very upset if objects in their environment are changed. Some children have the need for a very specific routine that must be adhered to. It is their insistence for sameness that gives the child with autism some control and sense of security in a bewildering and often frightening world. Structured activities and following routines helps these children get through the day. They know what to expect and that is essential for them in order to function. Often a written schedule of activities helps them make transitions from one activity to another. It is extremely important to prepare a child with autism for any change in routine in advance.

As mentioned previously, children with autism seem to have a limited range of play skills and interests. The younger child may be preoccupied with activities that provide sensory stimulation or satisfaction such as flapping fingers in front of their eyes or sifting sand. Other children may develop an intense attachment to a particular and unusual object or group of objects that are collected and must be with them at all times. Some examples of these are bottle caps, soap bottles, a hair pick, a plastic shovel, or toothbrushes.

Children who have developed speech may have an intense fascination with a particular topic and spend great portions of the time collecting information on it. They can be quite persistent trying to discuss this information and can become quite repetitive. Children with autism have a broad range of language abilities ranging from no verbal communication to quite complex communication. Those children with limited or no speech can use other forms of communication including sign language, picture communication boards, computers, facilitated communication, or a combination of these.
While there are many differences in the range of language impairments, one extreme form is called echolalia - echoing other people's language by constantly repeating a portion of what they hear. Some specialists believe that echolalia is repeated in an automatic manner without having communicative intent, while others think that children with Autism use it to get attention or as a way of participating, while others feel that it is a way of saying "I don't understand".

Children with autism often experience stereotypical behavior, self-injurious behavior, and aggression. Recent research has discovered that stereotypical behaviors are often an attempt by some individuals with autism to communicate boredom, are a way to regulate their own level of awareness, or as a release of tension. Children often engage in these behaviors when they are excited or over-stimulated, confused, or frustrated. Rocking behaviors are probably related to an underdeveloped vestibular system. These behaviors don't need to be changed unless they are interfering with what the child is doing. Some individuals with autism have self-injurious behaviors such as head banging, biting, or scratching. Though often harmless as an occasional symptom, it can become extremely damaging when done to excess. It is possible that pain sensitivity is reduced in certain people with autism. They simply do not feel pain the way others would. Be on the alert for serious harm that may require medical attention. Redirection can help, as can relaxation techniques, music, and deep pressure.

Aggressive behaviors are similar to self-injurious behaviors, but the behavior is directed toward others. Some children bite, shove, or hit. Find out what strategies are to be used if aggression occurs and be consistent in implementing them. Obviously, the best course of action is to know in advance what, if anything, triggers this behavior.

The severe communication disorder associated with autism results in confusion, frustration, and anxiety that can cause withdrawal or a variety of behavioral outbursts. The issues that greatly impact behaviors are limited understanding of the meaning of words. Children with autism are often "tuned out" or miss information that other children pick up. They may have trouble remembering the correct order of sequence of events, which makes it hard to understand that cause/effect relationships needed to predict and prepare for future events. Children with autism may not know how to ask for help or more information.

Stay calm and show interest in the child's abilities. Don't try too hard. Have a lot of patience, especially when there is a lack of communication skills or behaviors are present. Be consistent, and keep sensory stimulation to a minimum. Give simple and precise directions using words, gestures, pictures, or written words to help facilitate understanding. Give the child plenty of time to respond.

Children with autism can pose a variety of challenges. Successful interaction involves building trust through consistency, comfort, having their wants and needs understood and met. An environment that is structured and predictable, where routines are followed, and alone time is honored helps reduce stress.

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