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«Sally Patton UNITARIAN UNIVERSALIST ASSOCIATION BOSTON Copyright © 2004 by the Unitarian Universalist Association of Congregations. All rights ...»

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The Autism Society of America (ASA) also uses PDD as an overall term, although it continues to use autism to refer to the range of disorders. An excellent source for understandable information on the autism spectrum, the ASA describes autism as a complex developmental disability that typically appears during 98 Welcoming Children the first three years of life. Children and adults with autism typically have difficulties in verbal and nonverbal communication, social interaction, and leisure play activities. Specifically, the disorder makes it hard for them to communicate with others and to relate to the outside world. They may exhibit repeated body movements (such as hand flapping and rocking), unusual responses to people, attachments to objects, and resistance to changes in their routine.

They may also experience sensitivities in sight, hearing, touch, smell, and taste. In some cases, people with autism are aggressive or injure themselves.

Dr. Lorna Wing, an expert on autism, believes that people within the autism spectrum have limitations in three common areas: language, social understanding, and imagination.1 And while the range of symptoms and behaviors can vary dramatically from one individual to the next, sources generally agree on these

common areas of difficulty:

• Communication: Children with autism show difficulty in the use and understanding of language. Their language develops slowly and sometimes not at all. Approximately 20 percent of individuals with autism will not learn to speak but will learn sign language or typing. The term apraxia is often used to describe children who cannot speak and whose condition is not a language delay. Those who do learn to speak often use words inappropriately with incorrect meanings. Sometimes, children with autism engage in echolalia, repeating of someone else’s word.

• Social interaction: Children with autism have difficulty interacting with others or making friends and often show a preference for being alone. They are less responsive to social cues than most people and may avoid eye contact or show of affection.

• Sensory impairment: Children with autism may show unusual responses or reactions to sounds, visual stimuli, tastes, touch, or smells. They may be more (hyper) sensitive to or less (hypo) sensitive to sensations than others.

99 The Autism Spectrum

• Developmental abilities: Children with autism often have some skills that are normal or even superior for their age but others that are significantly delayed.

Several types of disorders fall within the overall autism

spectrum:

• Autistic disorder or classic autism: The children with this condition have impairments in social interaction, communication, and imaginative play prior to the age of three. They have stereotyped behaviors, interests, and activities and little or no flexibility in thinking and behavior. People with classic autism also have difficulty imagining what others are thinking, even when the cues are obvious. Individuals identified as savants are considered part of this disorder. Savants are autistic people who have extreme developmental delays overall but display a highly unusual ability in an area such as math or music. The character of Ray, played by Dustin Hoffman in the film Rain Man, is a good example of a savant. Savants make up about 10 percent of people with classic autism.

• Asperger’s disorder, often called Asperger’s syndrome (AS):

Named after Hans Asperger, this diagnosis includes children who have symptoms similar to those with autistic disorder but who are more able. Many professionals use high-functioning autism as another term for Asperger’s syndrome.2 The main clinical features of Asperger’s syndrome are described by Wing as lack of empathy;

naiveté; inappropriate or one-sided interaction; little or no ability to form friendships; pedantic, repetitive speech; poor nonverbal communication; intense absorption in certain subjects; and clumsy and ill-coordinated movements and odd postures.3 Many people with Asperger’s syndrome are never diagnosed and may be the adults we see as highly eccentric with poor social skills. There is also evidence to suggest that Asperger’s syndrome is more common than classic autism, and it may be diagnosed in children who have not been previously considered as having autism.4 100 Welcoming Children

• Pervasive developmental disorder–not otherwise specified (PDD–NOS): Commonly referred to as atypical autism, this diagnosis is applied to children with mild symptoms who do not fit into one of the other categories. Doctors sometimes use a PDD–NOS diagnosis to avoid using the more harsh term of autism and to decrease the stress on parents. However, some professionals do not see this as a separate disorder and feel these children should be placed within the Asperger’s syndrome category.

• Nonverbal learning disability (NLD): Some professionals use this diagnosis for individuals who have symptoms similar to those of PDD–NOS, whereas others consider NLD a learning disability.

The leading authority on NLD, Sue Thompson, sees it as related to Asperger’s syndrome.5 Children with NLD have remarkable rote memory and reading skills but have difficulty with coordination, visual/spatial organization, and social skills.





• Childhood disintegrative disorder: Children with this diagnosis have normal development in speech and social skills for at least the first two years of life but then regress and lose previously acquired skills, leaving them with autistic symptoms.

Discussion Describing autism is complicated because professionals do not agree on definitions and behavioral criteria for autism are constantly being changed. A number of other factors also cloud our

understanding of autism:

• Symptoms and behaviors vary from child to child.

• Negative attitudes and old beliefs are still very prevalent, producing an immense fear of the diagnosis of autism. That fear has spawned the creation of other labels to avoid the stigma of the autism label.

• Most doctors, teachers, and psychologists have limited experience with autism.

101 The Autism Spectrum

• Some children are labeled autistic when their behavior can be attributed to other causes, such as severe allergies, poor nutrition, or brain injury.

• New research is changing perceptions and language around autism.

One of the primary areas of debate among professionals is the treatment of autistic children. The various therapies reflect the philosophies of those who propose them. For example, some professionals believe that a child diagnosed with severe autism will forever lead a very limited life and will probably need to be institutionalized. Others believe that a child with autism can function more appropriately and learn to succeed in many tasks.

Certainly, the most thought-provoking information about the autism spectrum comes from those people who consider themselves to be living with high-functioning autism or Asperger’s syndrome and from parents who believe this about their children.

Their stories are as varied as the autism spectrum itself. And while they reflect the confusion and pain that continue to surround autism, they also reflect enormous advances in the perception and treatment of children with autism. Viewed as a whole, these stories offer testament to the human spirit and hope that inspires many to

transcend diagnostic labels. Consider these examples:

• With the help of a loving mother, Temple Grandin earned a Ph.D. and went on to enjoy a highly successful career as an animal scientist. She not only learned to cope with her autism but also became a well-known spokesperson for people with autism. She has written a book about her experiences, Thinking in Pictures and Other Reports from My Life with Autism.6

• Once a severely abused autistic child, Donna Williams completed a remarkable and compelling journey of recovery to selfawareness as an autistic person and a successful career as a college professor. She tells her story in Somebody Somewhere, Breaking Free from the World of Autism.7 102 Welcoming Children

• In Pretending to Be Normal, Living with Asperger’s Syndrome, Liane Holliday Willey talks about how she coped with Asperger’s syndrome throughout her life and became an advocate and spokesperson for others like her.8 All three people are within the autism spectrum, but their stories illustrate the many differences and abilities among autistic people. A review of the current literature reveals that most professionals would conclude that Grandin, Williams, and Willey were able to cope with their autism successfully because they are highly gifted and intelligent. An overwhelming majority of professionals agree that there is no cure for autism and that the most someone with autism can achieve is a strategy for living with the condition.

This position is challenged by some parents, however, who claim to have cured their children.

The word cure means different things to different people.

Grandin states, “If I could snap my fingers and be non-autistic, I would not. Autism is part of what I am.”9 Williams says, “The most important thing I have learned is that autism is not me. Autism is just an information-processing problem that controls who I appear to be.”10 And Willey says, Yet, no matter the hardships, I do not wish for a cure to Asperger’s Syndrome. What I wish for is a cure for the common ill that pervades too many lives; the ill that makes people compare themselves to a normal that is measured in terms of perfect and absolute standards, most of which are impossible for anyone to reach. I think it would be far more productive and so much more satisfying to live according to a new set of ideals that are anchored in far more subjective criteria, the fluid and the affective domains of life, the stuff of wonder,...

curiosity,... creativity,... invention,... originality. Perhaps then, we will all find peace and joy in one another.11 The issue of curing versus coping takes on new meaning when it involves a severely autistic child. Who can ignore children locked into their own worlds, silently flapping their hands, twirling and 103 The Autism Spectrum excessively focusing on objects, resisting and often avoiding human touch? The debate concerning appropriate intervention strategies is intense, but desperate parents will often try whatever is suggested.

On the other hand, there are compelling testimonies offered by parents who have ignored the advice of the professionals and apparently cured their children. In Son-Rise: The Miracle Continues, Barry Neil Kaufman recounts how he and his wife, Samahria, brought their son Raun out of autism.12 Raun was diagnosed at eighteen months as severely autistic and neurologically damaged with an IQ of 30. Ignoring the recommendations of professionals who counseled them to institutionalize their son, the Kaufmans created an innovative, home-based, child-centered program and transformed Raun into an outgoing, social boy with a near-genius IQ. Today, he is a highly intelligent, competent, and well-balanced adult who lectures, writes, and teaches about the Son-Rise Program that began with him.

Similarly, in her book Let Me Hear Your Voice, Catherine Maurice describes how her child triumphed over autism through intensive behavioral therapy.13 Her daughter started that therapy very young and is now a happily functioning child.

Dietary changes can also have a meaningful impact on the treatment of children with autism. Bernard Rimland, director of the Autism Institute, is the leading authority and proponent of diet and nutrition as an effective way to treat children with autism. He claims that vaccines, food intolerances, and yeast conditions can trigger autistic behavior. In addition, Rimland offers research that identifies autism as a possible immune system disorder.14 Donna Williams claims that a change in her diet and the inclusion of certain types of vitamins helped her recover from autism.15 Likewise, Karyn Serousi describes how dietary changes cured her son of autism in Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother’s Story of Research and Recovery.16 Sensory training has also proven effective for some individuals. In A Sound of a Miracle: A Child’s Triumph over Autism, Anabel 104 Welcoming Children Stehli tells her story of seeking treatment for her autistic daughter.17 She eventually rejected much of the professionals’ advice and found two alternative treatments—visual retraining by Dr. Melvin Kaplan and auditory integration training (AIT), pioneered in France by Dr. Guy Bérard.

Due to the complexity of behaviors and symptoms among children within the autism spectrum, it is extremely difficult to predict who will cope successfully with autism and who will need supervised care all their lives. Some approaches work with some children, and some work with others. Most parents try many different therapies to find the one that best matches the needs of their child, and some children learn how to function on their own, as Williams and Willey did. No matter what approach to treatment a family chooses, maintaining hope and seeing the world from the child’s eyes is essential.



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