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Autism

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Autism is a complex pervasive developmental disorder that involves the functioning of the brain. It is a neurological disability and not simply a psychiatric disorder, even though typical characteristics include problems with social relationships and emotional communication, as well as stereotyped patterns of interests, activities and behaviors. It also involves problems with sensory integration. Typically, it appears during the first three years of life. It is estimated that it occurs in approximately 2 to 6 in 1,000 individuals, and is 4 times more prevalent in males than females (source: The Autism Society of America [1]). It is most prevalent in Caucasian males.

As of 2004, autism is treatable, but not curable (although there is an organization called "Cure Autism Now"). Early diagnosis and intervention are vital to the future development of the child. It is widely considered that cure is impossible, because autism involves aspects of brain structure that are determined very early in development.


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Table of contents
1 History
2 Symptoms
3 Severity of symptoms
4 "Low" and "High-functioning"
5 Asperger's and Kanner's syndrome
6 Autism as a spectrum disorder
7 Rare Autism spectrum disorders
8 Increase in diagnoses of autism
9 Remediation of autistic behaviors
10 Aspects of autism
11 Problems That may Accompany ASD
12 Controversies in Autism
13 Adults with an Autism Spectrum Disorder
14 See also
15 External links

History

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Hans Asperger

Not until the middle of the twentieth century was there a name for a disorder that now appears to affect an estimated one of every five hundred children, a disorder that causes disruption in families and unfulfilled lives for many children.

In 1943 Dr. Leo Kanner of the Johns Hopkins Hospital studied a group of 11 children and introduced the label early infantile autism into the English language. At the same time a German scientist, Dr. Hans Asperger, described a milder form of the disorder that became known as Asperger syndrome.

Thus these two disorders were described and are today listed in the Diagnostic and Statistical Manual of Mental Disorders DSM-IV-TR (fourth edition, text revision)1 as two of the five pervasive developmental disorders (PDD), more often referred to today as autism spectrum disorders (ASD). All these disorders are characterized by varying degrees of impairment in communication skills, social interactions, and restricted, repetitive and stereotyped patterns of behavior.

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Leo Kanner

Symptoms

Possible Indicators of Autism Spectrum Disorders: Some Other Indicators:


Social Symptoms

From the start, typically developing infants are social beings. Early in life, they gaze at people, turn toward voices, grasp a finger, and even smile.

In contrast, most children with ASD seem to have tremendous difficulty learning to engage in the give-and-take of everyday human interaction. Even in the first few months of life, many do not interact and they avoid eye contact. They seem indifferent to other people, and often seem to prefer being alone. They may resist attention or passively accept hugs and cuddling. Later, they seldom seek comfort or respond to parents' displays of anger or affection in a typical way. Research has suggested that although children with ASD are attached to their parents, their expression of this attachment is unusual and difficult to "read." To parents, it may seem as if their child is not attached at all. Parents who looked forward to the joys of cuddling, teaching, and playing with their child may feel crushed by this lack of the expected and typical attachment behavior.

Children with ASD also are slower in learning to interpret what others are thinking and feeling. Subtle social cues – whether a smile, a wink, or a grimace – may have little meaning. To a child who misses these cues, "Come here" always means the same thing, whether the speaker is smiling and extending her arms for a hug or frowning and planting her fists on her hips. Without the ability to interpret gestures and facial expressions, the social world may seem bewildering. To compound the problem, people with ASD have difficulty seeing things from another person's perspective. Most 5-year-olds understand that other people have different information, feelings, and goals than they have. A person with ASD may lack such understanding. This inability leaves them unable to predict or understand other people's actions.

Although not universal, it is common for people with ASD also to have difficulty regulating their emotions. This can take the form of "immature" behavior such as crying in class or verbal outbursts that seem inappropriate to those around them. The individual with ASD might also be disruptive and physically aggressive at times, making social relationships still more difficult. They have a tendency to "lose control," particularly when they're in a strange or overwhelming environment, or when angry and frustrated. They may at times break things, attack others, or hurt themselves. In their frustration, some bang their heads, pull their hair, or bite their arms.

Communication Difficulties

By age 3, most children have passed predictable milestones on the path to learning language; one of the earliest is babbling. By the first birthday, a typical toddler says words, turns when he hears his name, points when he wants a toy, and when offered something distasteful, makes it clear that the answer is "no."

Some children diagnosed with ASD remain mute throughout their lives. Some infants who later show signs of ASD coo and babble during the first few months of life, but they soon stop. Others may be delayed, developing language as late as age 5 to 9. Some children may learn to use communication systems such as pictures or sign language.

Those who do speak often use language in unusual ways. They seem unable to combine words into meaningful sentences. Some speak only single words, while others repeat the same phrase over and over. Some ASD children parrot what they hear, a condition called echolalia. Although many children with no ASD go through a stage where they repeat what they hear, it normally passes by the time they are 3.

Some children only mildly affected may exhibit slight delays in language, or even seem to have precocious language and unusually large vocabularies, but have great difficulty in sustaining a conversation. The "give and take" of normal conversation is hard for them, although they often carry on a monologue on a favorite subject, giving no one else an opportunity to comment. Another difficulty is often the inability to understand body language, tone of voice, or "phrases of speech." They might interpret a sarcastic expression such as "Oh, that's just great" as meaning it really is great.

While it can be hard to understand what ASD children are saying, their body language is also difficult to understand. Facial expressions, movements, and gestures rarely match what they are saying. Also, their tone of voice fails to reflect their feelings. A high-pitched, sing-song, or flat, robot-like voice is common. Some children with relatively good language skills speak like little adults, failing to pick up on the "kid-speak" that is common in their peers.

Without meaningful gestures or the language to ask for things, people with ASD are at a loss to let others know what they need. As a result, they may simply scream or grab what they want. Until they are taught better ways to express their needs, ASD children do whatever they can to get through to others. As people with ASD grow up, they can become increasingly aware of their difficulties in understanding others and in being understood. As a result they may become anxious or depressed.

Repetitive Behaviors

Although children with ASD usually appear physically normal and have good muscle control, odd repetitive motions may set them off from other children. These behaviors might be extreme and highly apparent or more subtle. Some children and older individuals spend a lot of time repeatedly flapping their arms or walking on their toes. Some suddenly freeze in position.

As children, they might spend hours lining up their cars and trains in a certain way, rather than using them for pretend play. If someone accidentally moves one of the toys, the child may be tremendously upset. ASD children need, and demand, absolute consistency in their environment. A slight change in any routine—in mealtimes, dressing, taking a bath, going to school at a certain time and by the same route—can be extremely disturbing. Perhaps order and sameness lend some stability in a world of confusion.

Repetitive behavior sometimes takes the form of a persistent, intense preoccupation. For example, the child might be obsessed with learning all about vacuum cleaners, train schedules, or lighthouses. Often there is great interest in numbers, symbols, or science topics.

Severity of symptoms

Autism presents in a wide degree of severity, from those who are nearly dysfunctional and apparently mentally retarded to those whose symptoms are mild or remediated enough to appear unexceptional to acquaintances.

"Low" and "High-functioning"

In terms of both classification and therapy, autistic individuals are often divided into those with an IQ<80 referred to as having "low-functioning autism" (LFA), while those with IQ>80 are referred to as having "high functioning autism" (HFA). Low and high functioning are more generally applied to how well an individual can accomplish activities of daily living, rather than to IQ.

This discrepancy can lead to confusion among service providers who equate IQ with functioning and may refuse to serve high-IQ autistic people who are severely compromised in their ability to perform daily living tasks, or may fail to recognize the intellectual potential of many autistic people who are considered LFA.

Asperger's and Kanner's syndrome

Of the most common presentations of autism, Kanner's syndrome is often described as classical autism, implying low-functioning, while Asperger's syndrome is described as a high-functioning form of autism, but this is not necessarily the case.

In the current Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR) the most significant difference between Autistic Disorder (Kanner's) and Asperger's Disorder is that a diagnosis of the former includes the observation of "[d]elays 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[,]" [1] while in these areas a diagnosis of Asperger's observes "no clinically significant delay." [1]

The DSM makes no mention of level of intellectual functioning, but the fact that Asperger's autistics as a group tend to perform better than those with Autistic Disorder has fed the popular conception that Asperger's Syndrome is synonymous with HFA, or that it is a lesser disorder than autism. There is also a popular but untrue conception that autistic individuals with a high level of intellectual functioning are automatically Asperger's Syndrome, or that both are merely geeks with a medical label attached.

Autism has evolved in the public understanding, but the popular identification of autism with relatively severe cases as accurately presented in Rain Man is an encouragement for relatives of family members diagnosed in the autistic spectrum to speak of their loved ones as suffering from Asperger's rather than autism.

Autism as a spectrum disorder

Another view of these disorders is that they are on a continuum, so can be known as autistic spectrum disorders. Another related continuum is Sensory Integration Dysfunction which is about how well we integrate the information we receive from our senses. Autism, Asperger's Syndrome, and Sensory Integration Dysfunction are all closely related and overlap.

Some high-achieving individuals are thought to have had some form of autism. Autistic people may have other learning disabilities such as dyslexia.

There are two main types of autism, regressive autism and early infantile autism. Early infantile autism is present at birth while regressive autism begins at 18 months. There are also cases of children developing abnormally from birth but regressing around the age of 18 months, causing some degree of controversy as to when the neurological difference involved in autism truly began.

Rare Autism spectrum disorders

Rett Syndrome

Rett syndrome is relatively rare, affecting almost exclusively females, one out of 10,000 to 15,000. After a period of normal development, sometime between 6 and 18 months, autism-like symptoms begin to appear. The little girl's mental and social development regresses; she no longer responds to her parents and pulls away from any social contact. If she has been talking, she stops; she cannot control her feet; she wrings her hands. Some of the problems associated with Rett syndrome can be treated. Physical, occupational, and speech therapy can help with problems of coordination, movement, and speech.

Scientists sponsored by the National Institute of Child Health and Human Development have discovered that a mutation in the sequence of a single gene can cause Rett syndrome. This discovery may help doctors slow or stop the progress of the syndrome. It may also lead to methods of screening for Rett syndrome, thus enabling doctors to start treating these children much sooner, and improving the quality of life these children experience.*

Childhood Disintegrative Disorder

Very few children who have an autism spectrum disorder (ASD) diagnosis meet the criteria for childhood disintegrative disorder (CDD). An estimate based on four surveys of ASD found fewer than two children per 100,000 with ASD could be classified as having CDD. This suggests that CDD is a very rare form of ASD. It has a strong male preponderance.** Symptoms may appear by age 2, but the average age of onset is between 3 and 4 years. Until this time, the child has age-appropriate skills in communication and social relationships. The long period of normal development before regression helps differentiate CDD from Rett syndrome.

\r\n*Rett syndrome. NIH Publication No. 01-4960. Rockville, MD: National Institute of Child Health and Human Development, 2001. Available at [1]

**Frombonne E. Prevalence of childhood disintegrative disorder. Autism, 2002; 6(2): 149-157.

***Volkmar RM and Rutter M. Childhood disintegrative disorder: Results of the DSM-IV autism field trial. Journal of the American Academy of Child and Adolescent Psychiatry, 1995; 34: 1092-1095.

Increase in diagnoses of autism

There has been an explosion worldwide in reported cases of autism over the last ten years. There has been considerable speculation as to why this might be, with no conclusive proof emerging around any theory. However, studies have ruled out the speculation that the rise is attributable to an improvement in diagnostic methods.

In the last decade, the population of the United States has increased by 13%. There has been an increase in non-autism-related disabilities of 16%. The increase in autism is 173%.

In 2001, Wired Magazine published an interesting speculative article The Geek Syndrome exploring the surge in apparent autism in Silicon Valley. This is only one example of the media's application of mental disease labels to what is actually variant normal behavior. Shyness, lack of athletic ability or social skills, and intellectual interests, even when they seem unusual to others, are not in themselves signs of autism.

Remediation of autistic behaviors

Remediation of debilitating aspects of autism was long hindered not only by widespread disagreement over its nature and causes, but by lack of a recognized and effective course of therapy.

Dr. Bruno Bettelheim believed that autism was linked to trauma in early childhood, and his work was highly influential for decades. Parents, and especially mothers, of autistics were blamed for having caused their child's condition through the withholding of affection. Leo Kanner, who first described autism (Autistic disturbances of affective contact, 1943) originated the concept of "refrigerator mothers" in regard to autism, although he eventually renounced the concept. Bettelheim took the theory further. These theories did nothing to address the fact that having more than one autistic child in a family is exceptional, not the rule. Treatments based on these theories failed to help autistic children.

A major breakthrough in the remediation of autistic behaviors came through work spearheaded by Ole Ivar Lovaas, who believed that success could be obtained by behavioral approaches.

Lovaas' approaches—often referred to as Discrete Trial, Intensive Behavior Intervention, and Applied Behavior Analysis—are some of the best known and most widely used in the field and focus on the development of attention, imitation, receptive or expressive language, and pre-academic and self-help skills. Using a one-to-one therapist-child ratio and the “antecedent-behavior-consequence” (ABC) model, interventions based on this work involve trials or tasks. Each consists of (a) an antecedent, which is a directive or request for the child to perform an action; (b) a behavior, or response from the child, which may be categorized as successful performance, noncompliance, or no response; and (c) a consequence, defined as the reaction from the therapist, which ranges from strong positive reinforcement to a strong negative response, “No!”(Autism Society of America, 2001).[1]

Lovaas' Applied Behavioral Analysis (ABA) methods were the first scientifically validated therapy for autism. Early intervention, generally before school-age, is critical for children who would benefit from these programs.

ABA is not appropriate for all autistic or developmentally delayed children. ABA has come into widespread use only in the last decade and the demand is outstripping the supply of committed and experienced service providers. As a result, parents of children need to be extra vigilient in choosing appropriate treatments for their children and especially in choosing providers, who may be inexperienced, use questionable methods or even deceive parents that they are competent to run an ABA or any other program. Such problems have led to horror stories from some parents. [1] [1]. See also .

Aspects of autism

Some things to mention here:

Both Oliver Sacks and Torey Hayden have written about their autistic patients or pupils, respectively. Temple Grandin has also written about her own life as a person with autism. Donna Williams (Autism: an inside-out approach, ISBN 1-85302-387-6) and her many other books give an interesting perspective on the experience of the person with autism. Dozens of other autistic people have also written books on autism and other topics.

Problems That may Accompany ASD

Sensory problems

When children's perceptions are accurate, they can learn from what they see, feel, or hear. On the other hand, if sensory information is faulty, the child's experiences of the world can be confusing. Many ASD children are highly attuned or even painfully sensitive to certain sounds, textures, tastes, and smells. Some children find the feel of clothes touching their skin almost unbearable. Some sounds—a vacuum cleaner, a ringing telephone, a sudden storm, even the sound of waves lapping the shoreline—will cause these children to cover their ears and scream.

In ASD, the brain seems unable to balance the senses appropriately. Some ASD children are oblivious to extreme cold or pain. An ASD child may fall and break an arm, yet never cry. Another may bash his head against a wall and not wince, but a light touch may make the child scream with alarm.

Autistic babies are often observed to stiffen when held. This is due to the sensory overload discussed above, and the stiffening is a coping mechanism which also occurs in adults. Because sensory overload occurs from birth, the coping behaviour is notable as one of the earliest observable symptoms of autism. However, it is not universal among autistics. There is great variation in the susceptibility to sensory overload.

Mental retardation

Many children with ASD have some degree of mental impairment. When tested, some areas of ability may be normal, while others may be especially weak. For example, a child with ASD may do well on the parts of the test that measure visual skills but earn low scores on the language subtests.

Seizures

One in four children with ASD develops seizures, often starting either in early childhood or adolescence. Seizures, caused by abnormal electrical activity in the brain, can produce a temporary loss of consciousness (a "blackout"), a body convulsion, unusual movements, or staring spells. Sometimes a contributing factor is a lack of sleep or a high fever. An EEG can help confirm the seizure's presence.

In most cases, seizures can be controlled by a number of medicines called "anticonvulsants." The dosage of the medication is adjusted carefully so that the least possible amount of medication will be used to be effective.

Fragile X syndrome

This disorder is the most common inherited form of mental retardation. It was so named because one part of the X chromosome has a defective piece that appears pinched and fragile when under a microscope. Fragile X syndrome affects about two to five percent of people with ASD. It is important to have a child with ASD checked for Fragile X, especially if the parents are considering having another child. For an unknown reason, if a child with ASD also has Fragile X, there is a one-in-two chance that boys born to the same parents will have the syndrome.5 Other members of the family who may be contemplating having a child may also wish to be checked for the syndrome.

Tuberous Sclerosis

Tuberous sclerosis is a rare genetic disorder that causes benign tumors to grow in the brain as well as in other vital organs. It has a consistently strong association with ASD. One to four percent of people with ASD also have tuberous sclerosis.6

Controversies in Autism

Controversy exists as to whether autism, particularly (but by no means limited to) Asperger autism, is a disorder at all, or simply a variation in neurological hardwiring. Many autistics do not lack language skills (some mute autistics such as Jasmine O'Neill write very well) and desire to speak for themselves about their experience. They do not desire a cure, but rather to be given opportunities to use their unique skills and perceptions in useful ways. Websites such as autistics.org present their view.

Some people understand this attitude as an outgrowth of their perception that the word "autism" is fast becoming misused to define shy, intellectually-oriented children who are not extroverted nor interested in sports, or who are slightly developmentally delayed (better autistic than retarded?). However, the original autistic people to popularize the view that autistic people need not be cured, of whom one of the most famous is Jim Sinclair, were diagnosed in a time when autism was a decidedly unpopular diagnosis. Thus, it should also not lightly be assumed that autistic people presenting this point of view represent a misdiagnosed group. Many have been diagnosed correctly, are not simply shy or introverted geeks with a few social quirks, experience severe problems in day to day functioning, but find that autism is still too much of an intrinsic part of themselves to want to have it indiscriminately eradicated in the name of normalcy. Parents who are desperate for a "normal" child may agree to all sorts of treatments, including electroshock therapy, neuroleptic and antidepressant medication, and ABA behavioristic training -- which at its most extreme appears barbaric, to say the least. Children Injured By Restraint and Aversives presents open letters from parents on this subject.

There are many purported treatments, or even cures, for autism that, if anything, achieve only conformance on the part of the subject. Many "treatments" are aimed at making the autistic person act in a superficially normal manner, and end up conditioning the autistic person to simulate desired behaviours (such as eye contact) without giving them any social understanding or making them any more comfortable with the behaviour. Others, such as the particularly cruel "holding therapy", achieve nothing positive other than to make the non-autistic parent feel better.

Adults with an Autism Spectrum Disorder

Some adults with ASD, especially those with high-functioning autism or with Asperger syndrome, are able to work successfully in mainstream jobs. Nevertheless, communication and social problems often cause difficulties in many areas of life.

Many others with ASD are capable of employment in sheltered workshops under the supervision of managers trained in working with persons with disabilities. A nurturing environment at home, at school, and later in job training and at work, helps persons with ASD continue to learn and to develop throughout their lives.

In the United States, the public schools' responsibility for providing services ends when the person with ASD reaches the age of 22. The family is then faced with the challenge of finding living arrangements and employment to match the particular needs of their adult child, as well as the programs and facilities that can provide support services to achieve these goals.

See also

External links

Autism Awareness Ribbon