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Autism and the Family Background on Autism Understanding Autism According to the National Institute of Mental Health (NIMH), "Autism is a brain disorder that typically affects a person's ability to communicate, form relationships with others, and respond appropriately to the environment." Autism belongs to a group of disorders called autism spectrum disorders (ASD) or pervasive developmental disorders (PDD). Autism is also considered a "spectrum disorder," meaning the degree of symptoms vary greatly between individuals. While the cause is unknown, researchers generally think that it has genetic components, with possible environmental triggers. The Autism Society of America (ASA) clearly states that, "Autism is not caused by bad parenting, and children with autism are not unruly kids who choose to misbehave." Diagnosing Autism Typically, symptoms begin to appear by the 30th month of a child's life. Parents may notice that their child lacks in social and language development. The child may not use words properly or prefers using gestures instead of words. He shows little interest in others and does not seem to respond to eye contact or facial gestures. He may have sensory impairment, either being overly sensitive to touch or barely responsive to pain. Behavioral symptoms may show either a highly reactive child, possibly with violent tendencies, or a very passive one. Because autism is a spectrum disorder, these symptoms will vary in intensity and combination between individuals, making diagnosis difficult. Therefore if the parents or child's pediatrician suspect the child has an ASD, they should consult a specialist. The professional will then assess the child's behavioral, communication and developmental levels. Treating Autism While there is no cure, advances have been made in helping patients cope with the disorder. In addition, certain symptoms may lesson or even disappear completely as the child ages. With proper treatment, certain behaviors may be changed so that the child may integrate better with society. However, an autistic patient will continue to show some symptoms throughout his life. According to the ASA, treatment may involve a combination of behavior modification, speech/language therapy, sensory integration, vision therapy, music therapy, auditory training, medications and dietary interventions. Caring for an Autistic Child In addition to a team of medical and therapeutic specialists, parents will need to seek the help of educational, financial and emotional support systems as well. Parents of autistic children should contact their state for possible funding options (click here for ASA's list of agency links). Local programs offer early intervention services for children up to three years of age, including therapies and play groups. Early childhood programs may include school-based programs, although some parents choose homeschooling methods until the child is ready for group learning. After the child has progressed through high school, they reach a critical transition period. Depending upon the individual, the autistic adult may go on to higher education, employment and even independent living. Autism and the Family Seeking Support from Others Many locations offer support groups for parents of autistic children. These valuable groups allow parents to draw emotional support and to learn from other families in similar situations. In addition, parents should seek the support of friends and family. Parents should not be afraid to explain to others what they need, i.e. what types of comments are encouraging and which ones are harmful. Friends may feel helpless in how to help the parent of an autistic child, which is why parents should become comfortable expressing their needs to others. Parents should also recognize that siblings of the autistic child will have their own difficulties. According to Adrianne Horowitz, CSW (Director of Family Services for the Eden II Programs for Autistic Children), possible obstacles include how to relate to the child, embarrassment around peers, jealousy regarding the parents' attention, concern for the parents, and concern over their own role in caregiving. Parents should consider finding a support group for the children or some form of counseling to help them adjust. Grandparents and other extended family members of autistic children may also wish to seek support or counseling. These family members also experience grief and frustration, and may not know how to handle an autistic child. Learning Stress Management Skills Horowitz cautions parents to make time for themselves to avoid burnout. Families should engage in stress management techniques such as prayer, exercise, relaxation exercises, journal writing and maintaining a daily schedule. Even just a few minutes to themselves, a favorite meal or treat will help the family members in dealing with stress. Families should maintain a sense of humor and work together to find solutions to caregiving difficulties. Family members need to be sure to show appreciation to each other. Parents should thank their children for helping out with the autistic child. Spouses should make time to renew their relationship. Horowitz suggests that spouses find pockets of time whenever possible, such as once the kids are asleep, a lunch date while the kids are in school, etc. And she encourages families not to feel guilty if they occasionally have family activities without the autistic child. Understanding a Family with an Autistic Child Friends and family members need to be a source of encouragement and support for the family of an autistic child. They need to understand that autism is a brain disorder and not the result of bad parenting. Attempting to provide parenting advice or chastising a parent for allowing certain behaviors will not help the situation. Loved ones need to understand that parents of autistic children experience an incredible amount of physical and psychological stress. They may be exhausted and frustrated from caring for the child, conflicts with the child, lack of time, and worry over the child's well-being. In addition, an autistic child may not be able to communicate his needs, leaving both the child and parent routinely frustrated. Even daily tasks such as eating, sleeping through the night, play time and keeping the child safe from accidents have unique challenges. These parents worry over future caregiving and finances. They experience feelings of grief and loss. Parents of autistic children may miss out on the activities of their other children in order to stay home caring for the child, or they may not have many opportunities to spend alone time with their spouse. Loved ones should understand that many parents feel isolated because of the stressfulness of taking an autistic child out in public or to a friend's house. Horowitz describes the dilemma: "Taking an individual with autism out into the community can be a source of stress for parents. People may stare, make comments or fail to understand any mishaps or behaviors that may occur. For example, individuals with autism have been seen taking a stranger's food right off their plate. As a result of these potential experiences, families often feel uncomfortable taking their child to the homes of friends or relatives. This makes holidays an especially difficult time for these families. Feeling like they cannot socialize or relate to others, parents of children with autism may experience a sense of isolation from their friends, relatives and community." If a friend is feeling that their relationship is strained or perhaps is even jealous over the lack of attention from their friend, they should gently communicate their feelings to them. They should not let built-up frustrations or isolation ruin a friendship, especially when that friendship and source of support is so valuable to the parent. Supporting a Family with an Autistic Child In addition to understanding the unique struggles of a family with an autistic child, friends and family members should offer their support. They should encourage the parents with positive comments on their parenting skills, patience and amazing acts of love for their child. Friends will find they can offer useful services such as grocery shopping, running errands, cleaning house or cooking a meal for the family. They can show their support by helping the family find autistic resources, or by even making needed doctor and therapy appointments for the family. Friends might even consider offering to baby-sit for the family. However, they need to understand that this service is going to be a lot more involved than baby-sitting non-Autistic children. In addition to the difficulties in relating to and communicating with an Autistic child, these children have a great need for consistency and routines. Babysitting an Autistic child will take a bit of training from the parents to help make the transition smoother. However, in offering to give the parents a night off, the friend will provide much needed relief and the opportunity for a family to strengthen their relationships with each other outside of the home. Even if a friend does not feel comfortable baby-sitting the autistic child, he or she should still attempt to create a relationship with the child. The parents will offer support on how to best communicate with the child and what to expect from him. Befriending an Autistic Child Young children may have a difficult time understanding why an autistic child is different. The ASA's brochure, "Growing Up Together," provides great explanations about autism on a child's level. Adults should reassure children that autism is not contagious and that the autistic child simply thinks and acts differently because their brain works differently. And even though the child may seem unresponsive, adults should encourage other children to continue communicating with the child, perhaps by even using pictures to help him understand them better. Other suggestions from the ASA for children to befriend autistic children include: accepting their differences, protecting them from things that bother them, speaking in small sentences and words, using a lot of gestures or pictures when talking, participating in activities that interest them, being patient, inviting them to play in group activities, sitting near them, helping them when they want help, and telling others about autism. The Centers for Disease Control and Prevention (CDC) offers a KidsQuest page on Autism, educating children on the disorder at http://www.cdc.gov/ncbddd/kids/kautismpage.htm. While autism may not have a cure, there is hope for parents and families of autistic people. Friends and extended family members have the potential to play a crucial part in the success of the family's struggle with autism. They simply need to offer their support and understanding. Sources and Recommended Reading: From the Autism Society of America (ASA): "All About Autism." This page includes a wealth of information on the ASA site, including articles on autism and links to other resources. http://www.autism-society.org/site/PageServer?pagename=allaboutautism Online Brochures: "What Is Autism?", "Next Steps: A Guide For Families New To Autism," "Building Our Future" (for teachers), and "Growing Up Together" (for peers of autistic children): http://www.autism-society.org/site/PageServer?pagename=ASA_Brochures_2004 Online Autism Course: http://www.autism-society.org/site/PageServer?pagename=course_intro "Resources for Parents and Others" (includes links to local organizations offering parent training, support groups, therapy, insurance, etc.): http://www.autism-society.org/site/PageServer?pagename=State_Resources Stress on Families," by Adrianne Horowitz, CSW, from ASA: http://www.autism-society.org/site/PageServer?pagename=livingfamily Other Resources: About.com's Autism/ Pervasive Developmental Disorders Channel: "Children's Mental Health Facts: Children and Adolescents with Autism," National Mental Health Information Center: http://www.mentalhealth.org/publications/allpubs/CA-0009/ "Autism," KeepKidsHealthy.com: http://www.keepkidshealthy.com/welcome/conditions/autism.html "Autism Spectrum Disorders (Pervasive Developmental Disorders)," National Institute of Mental Health: http://www.nimh.nih.gov/healthinformation/autismmenu.cfm "Autism Information Center," Centers for Disease Control and Prevention (CDC): http://www.cdc.gov/ncbddd/dd/ddautism.htm "How to Support a Family with an Autistic Child," from eHow: http://www.ehow.com/ehow/ehowDetails.jsp?index=1037&id=12662 blog comments powered by Disqus |
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