«Sally Patton UNITARIAN UNIVERSALIST ASSOCIATION BOSTON Copyright © 2004 by the Unitarian Universalist Association of Congregations. All rights ...»
Ministering to Families Even though much progress has been made concerning the diagnosis, treatment, and prognosis for autistic children, autism is still a frightening label for most parents. According to Kathleen Dillon in Living with Autism, most people cannot comprehend the harsh, unyielding nature of autism.18 The complexity of the available information about autism can overwhelm parents, and fear and unhappiness can keep them from thinking creatively. Having an autistic child does not have to be a tragedy. Treating it as such will only ensure that it stays one. Kaufman’s Son-Rise: The Miracle Continues and Stehli’s Dancing in the Rain are wonderful books for helping parents think positively about their autistic child.19 Given the amount of negativity that surrounds autism, we can help most by providing hope, understanding, and a nonanxious presence for families. Ministering to parents who are just realizing that their child is autistic will be different from ministering to parents who have accepted their child’s autism and are now struggling 105 The Autism Spectrum to find appropriate intervention programs or therapies.
Ideas for Teaching “We have a child with autism, and we would like to bring him to church to participate in the religious education program”—a statement like this is likely to send many religious educators into a state of understandable panic. The words autistic child often conjure up images of an uncontrollable, sometimes violent child locked into his or her own world.
There are so many misconceptions about autistic children that it is difficult to know how to minister to them. We know that the autism spectrum includes a very wide range of behaviors. While professionals disagree about diagnosis and treatment or therapy, autistic children can be included in programs with appropriate knowledge and planning.
The following story from Connie Grant, a religious educator at the Countryside Church in Palatine, Illinois, illustrates the benefits of involving children within the autism spectrum in our
Jason has Asperger’s syndrome and is now eighteen. He has been coming to the church since he was eight, participating in our church school classes to the extent he was able. He found his own comfort level with the understanding and quiet encouragement of his teachers and classmates. In his affirmation statement to the congregation at the conclusion of our Coming of Age program, he spoke about how important the church has been in his life commenting, “No one makes fun of me here.” There was not a dry eye in the house.
This is my idea of a success story.
106 Welcoming Children When we understand the world of an autistic child, we can help him or her learn to live in our world successfully. Consider these factors when creating a ministry for children within the
• Dispel the myths. The proliferation of misinformation and stereotypes about autistic children can seriously affect a church’s ability to be a welcoming place. Members of the congregation, including the children, may need to receive awareness training in order to become better informed. Learning to include and accept an autistic child can be a life-affirming experience for all involved.
• Let go of the fear. Many adults are uncomfortable around autistic children because they feel that they need to stop these children’s behaviors and fear that they cannot. By not judging the child’s behavior as weird but accepting that he or she is coping as well as possible at the moment, we can release the fear that negatively affects how we minister to autistic children.
• Ignore the labels. Many of our attitudes and expectations are based on what the label of autism implies and thus limit how we relate to autistic children. For example, it is generally recommended to avoid eye contact with these children because it can make them uncomfortable. Children with Asperger’s syndrome, especially, may not understand that making eye contact is a way to get information about a person. While this is certainly true for a number of children, it is not true for others. Moreover, reacting this way to a child who is just beginning to make eye contact with people would negate the very behavior we wish to encourage. Seeing beyond the label and treating each child as an individual is critical.
• See the world from the child’s perspective. The behavior of autistic children has baffled people for many years; we cannot hope to figure out such complex behavior when no one else has.
We can, however, accept that these children are behaving as well as they can and not deliberately being bad. For instance, a child with 107 The Autism Spectrum Asperger’s syndrome often experiences high anxiety in social situations. If there are too many interruptions in a session, too much noise, and not enough structure, he or she may panic, become angry, or hit something.
• Create a climate of love and acceptance. The need for a loving, accepting community cannot be overstated. Children within the autism spectrum who function well enough to go to school are bombarded daily with stress and high anxiety. They know that most children and adults think they are weird, and trying to fit in can be confusing and painful. Our job is to recognize that these children have many gifts and to encourage them and celebrate their uniqueness.
Mental Retardation and Developmental Delays Some people treat me differently because I have Down syndrome, but I just want to be treated like anyone else. And some people think that just because I have Down syndrome, I’m stupid or handicapped. I don’t feel that way. My Down syndrome never kept me from doing anything I wanted to do. Everybody is different. I don’t like it when people say I am a victim, or when they say I suffer from it. It’s not a disease. I don’t like it when they show the pictures of the little chromosomes, because it’s personal to me. But I think it’s great to have an extra chromosome and I like talking about it.
It doesn’t make me feel “down.” Actually, I call it “Up syndrome” because I am happy and excited about my life.
—Chris Burke, A Special Kind of Hero Most disabilities are misunderstood and generate fear and prejudice. However, people with mental retardation seem to be particularly feared, mistrusted, and even reviled. People with mental retardation have been mistreated throughout history, at times enslaved, killed as witches, subjected to systematic extermination, and deemed to be criminally defective. Except for a few attempts to provide them with education, these individuals were typically isolated and institutionalized. The most fortunate ones were cared for by their families.
108 109 Mental Retardation and Developmental Delays The language used to describe people with mental retardation has reflected society’s misunderstanding about them. In years past, the terms mongoloid, cretin, and imbecile were all considered acceptable and used with no harmful intent. Today, they are considered derogatory and inappropriate, as is the word retard. The accepted label of mental retardation, which is used to describe cognitive limitations, often has the same, although unintended, affect.
Despite this evolution in terminology, negative attitudes persist. In a culture that prizes intellectual ability, children with mental retardation are sometimes seen as defective and as a drain on educational resources. In addition, most people still feel uncomfortable around those with mental retardation because they may look or act in unusual ways.
Most people have never had the opportunity to know a child like Chris Burke, whom many know as the star of the television program Life Goes On. In that program and in real life, Burke has been able to counteract negative attitudes about people with mental retardation. He has demonstrated that people with mental retardation have much to offer if we allow them to develop their strengths.
One mother of a daughter with a cognitive delay described her experience in her church’s religious education program. Because of her daughter’s unfailing love for everyone and consistently positive attitude, she was seen as a beloved and beneficial influence for all the children. They eagerly accepted and wanted her in their program, fully recognizing her unique traits and abilities. In recognizing the uniqueness of all children with mental retardation, we can find ways to include them in our religious education programs.
Description The language used to describe people with mental retardation continues to evolve. In recent years, there has been a growing trend to use the term developmental delay, instead of mental retardation.
The American Association of Mental Retardation (AAMR) also uses the term intellectual impairment.
110 Welcoming Children Some professionals and parents find the term developmentally delayed more humanizing because it implies that children with mental retardation have limitations but are still capable of learning. Children with mental retardation can certainly continue to learn and develop. However, according to some, using the term delayed gives the false impression that these children will eventually grow out of or be cured of their cognitive delays. Thus, the term mental retardation is the one most frequently used by the AAMR and special-needs professionals.
The AAMR has provided the most widely accepted definition
of mental retardation:
Mental retardation is a particular state of functioning that begins in childhood and is characterized by limitation in both intelligence and adaptive skills. Mental retardation reflects the “fit” between the capabilities of individuals and the structure and expectations of their environment. Mental retardation refers to substantial limitations in present functioning. It is characterized by significantly sub average intellectual functioning, existing concurrently with related limitations in two or more of the following applicable adaptive skill areas: communication, home-living, community use, health and safety, leisure, self-care, social skills, selfdirection, functional academics, and work. Mental retardation manifests before age eighteen.1 To put it more simply, a child is considered to be mentally retarded if he or she performs significantly below age level in two areas—intellectual functioning (or intelligence) and adaptive functioning (or the ability to act independently and function in social situations). In Children with Mental Retardation: A Parent’s Guide, Romaine Smith writes,
language, thinking, self-help, social and other skills. It does not mean, however, that development and learning is impossible. Rather, mental retardation means that the rate of development is slower than in a child with normal intellectual and adaptive skills.2 Mental retardation is the most common of the developmental disorders, and like most developmental disorders, it can be difficult to diagnose, particularly when it occurs in conjunction with other disabilities such as autism, cerebral palsy, or epilepsy. The most
common diagnoses of mental retardation include the following:
• Down syndrome is the most common noninherited cause of mental retardation. According to the National Down Syndrome Society, it affects people of all ages, races, and economic levels, occurring in about 1 in 800 to 1,000 live births.3 The diagnosis of Down syndrome is usually made shortly after birth and based on the appearance of the infant. Most children with Down syndrome fall within the mild to moderate range of mental retardation.
However, some children have more severe mental retardation while a few have normal intelligence.
• Fragile X syndrome is the most common cause of inherited mental retardation. The condition results from an abnormal or defective gene on the child’s X chromosomes. Because girls have two X chromosomes, an abnormality on one of the X chromosomes may not cause severe symptoms. As a result, fragile X syndrome predominately affects boys. While most boys with fragile X syndrome have mental retardation, only one-third to one-half of girls with fragile X have significant intellectual impairment. The rest of the girls have either a normal IQ or some learning disabilities. Sometimes children with fragile X syndrome are misdiagnosed with autism because the presenting characteristics are similar. Genetic testing is important for a correct diagnosis.4
• Fetal alcohol syndrome (FAS) is currently the leading cause of mental retardation in the Western world, occurring in an estimated 1 in 500 to 700 births.5 Doctors have not been able to 112 Welcoming Children determine what constitutes a safe drinking level for mothers during pregnancy, as the amount of alcohol that can cause full-blown FAS varies from mother to mother. Moderate to excessive alcohol consumption during any stage of pregnancy can cause damage to the developing fetus. Children with FAS generally have mild mental retardation. However, some have normal intelligence and some have severe mental retardation.6
• Prader-Willie syndrome (PWS) is a complex genetic disorder that includes short stature and incomplete sexual development. It is the most common genetic cause of obesity.
• Phenylketonuria (PKU) is a single-gene, inherited metabolic disease that leads to mental retardation if left untreated in infancy.
All babies in the United States are routinely screened for PKU.
• Childhood lead poisoning is the most common environmental health problem affecting children in the United States. Large amounts of lead in a child’s body can cause brain damage and mental retardation.