Autism spectrum disorder (ASD) has been diagnosed at an increasingly high rate since the 1980s. For example, in 2010 the US Centers for Disease Control and Prevention (CDC) estimated that 1 in every 150 children was diagnosed with ASD; in 2012 that number jumped to 1 in 88. Although some of this increase can be attributed to doctors' and parents' greater awareness of the condition, the CDC believes this increase is also because of the disorder's growing prevalence, which means many more families now have to deal with the effects of ASD.
ASD is a disorder that affects the entire family. It most strongly affects the person diagnosed with ASD, as he or she has to lead a different kind of life than peers. The parents or guardians of those with ASD must cope with the extra care involved in raising a disabled child. Similarly, the siblings of children with ASD sometimes struggle. They may feel sadness, guilt, and even anger because their sibling has this disorder and requires so much care. They may receive less attention from their parents than the sibling with autism.
Despite these challenges, however, most siblings eventually have caring, fruitful relationships with their brother or sister with ASD. They can also seek comfort and help from professional groups and organizations created to assist those in such situations.
ASD and the ASD Diagnosis
Autism spectrum disorder (ASD) is a disorder that is generally characterized by challenges with social interaction, communication, and repetitive movements, behaviors, or ideas. Although most children suffering from ASD have such problems, people with ASD can have different symptoms that range in severity. ASD first affects children during their early developmental period, around age two. Scientists are not sure what causes ASD but know it is linked to genetics and the environment. People should understand that ASD is not contagious like a cold or other illness. They should also realize that it is no one's fault that someone they love has ASD.
The sooner a child is diagnosed with ASD, the better. Early treatment and intervention can help children suffering from ASD. Doctors generally make a diagnosis based on checklists, observations, and input from parents and caretakers. There is not yet a medical test, such as a blood test, to diagnose ASD.
Effects of ASD on Siblings
ASD affects the entire family. Although many studies have been conducted showing the effects of ASD on those who suffer from it and their parents, few studies have focused on how ASD affects siblings. Much of the research that has been conducted on the effects of the disease on siblings has been anecdotal, meaning it is based on individual reports and stories. However, if these findings are to be believed, the siblings of those with ASD are greatly affected by their brother's or sister's disorder.
Siblings of those affected by ASD may have complicated feelings toward their brother or sister. Often, their lives and routines are altered by their siblings' wants and needs. For example, many children with ASD need to follow very particular routines—because of these routines, their siblings may not be able to go on vacations or participate in activities because the family must always adhere to the same schedule. Parents' stress in caring for an autistic child may also affect their other children, whether by changing their normal parent-child interaction or by causing a child to worry at seeing their parents overworked.
Experiences like this can upset siblings of people with ASD and affect their relationships with parents and others. Furthermore, some siblings feel guilty because they are able to lead more normal lives than their ASD-affected brother or sister. In some cases they may attempt to compensate for their affected sibling's inability to perform tasks or chores, potentially increasing their own stress. They may also feel jealous of the attention that their sibling with the disorder receives from their parents (sibling rivalry), or embarrassed around their friends because their family is different. Occasionally a sibling may become a target to a person with ASD displaying aggressive behavior. Younger children who do not understand their sibling's condition may be frustrated that they are unable to interact normally with their brother or sister. Older children may become concerned about the possibility of having to take over as their ASD-affected sibling's caretaker.
Although the siblings of people with ASD do often experience some negative emotions, research suggests that most of these individuals have overall positive, close sibling relationships with their brother or sister despite the challenges. According to a 2012 Easter Seals Siblings Study, 80 percent of people who have a developmentally disabled sibling feel their relationship with that sibling enhances their life. Many people feel protective of their disabled sibling and help care for him or her at home and in social settings.
People with an ASD-affected sibling can have their lives affected in other ways, too. Some people change their daily schedules to help care for their sibling. Others become the primary caretaker of their sibling. This can be like having a full-time job. Giving a sibling this level of care affects people emotionally, mentally, physically, and socially.
Because autism is thought to include a genetic component, siblings of those with ASD are also potentially at a higher risk for this disorder themselves, but scientists still debate the subject. A 2013 study from researchers at Aarhus University in Denmark found that children with a older sibling affected by ASD are seven times likelier to be diagnosed as well, while the CDC provides the broad estimate that an identical twin of someone with autism has a 36 to 95 percent chance of being diagnosed. Parents with an autistic child have also been shown to have an increased risk of having another child with ASD. Several inherited genes have been linked to autism, although no exact cause is known. However, a 2015 study from the Hospital for Sick Children in Canada cast doubt on the inheritability of ASD, finding that almost 70 percent of siblings who both have been diagnosed with ASD in fact have different gene mutations linked to autism and have varying symptoms. This suggests that each case of ASD may be the result of wholly independent factors
Resources and Strategies for Siblings of People with ASD
Supportive parents are the best resource for unaffected siblings as well as those with ASD, so parents should do their best to be informed about caregiving responsibilities and stress management, and help their children develop a life independent of their siblings. Young children must be educated about what autism is, and research suggests that this information should be provided to children of all ages at appropriate levels. For example, younger siblings can simply be made aware of their ASD-affected brother or sister's limitations, such as the inability to speak, while preteens should be given more detailed explanations about the disorder. Repetition is important to ensure that children have an appropriate understanding of the issue rather than simply a familiarity with associated terms.
With ASD-affected individuals and siblings of young ages, parents can take specific steps towards ensuring their children form positive relationships. Researchers suggest that siblings can be easily trained to follow guidelines in order to effectively play with a brother or sister with ASD. By using strategies such as providing easy instructions, giving praise, and maintaining attention, children can often overcome the barriers between a sibling with ASD caused by tantrums or lack of social skills. At the same time, parents must be aware that children need time away from their sibling with autism as well. Children should be allowed time on their own or with peers and individual parental attention.
Older children and adults with ASD-affected siblings can seek out resources and use strategies to help them deal with the problems they encounter. They can look to others who have ASD-affected siblings for support. Talking to people who have had the same experiences can be extremely helpful and can help them justify their feelings. Conversing with others can also give new insight into how to deal with particular issues. National or local support groups exist with the aim of helping siblings of those with disabilities, including The Sibling Support Project of the Arc of the United States, Autism New Jersey, and many others. Siblings of those with ASD may also look for books and websites produced for families with children with ASD. They can also become involved in ASD social media campaigns or community events. Parents must also communicate with their adult children to plan for the long-term care of an ASD-affected family member, including who will become their guardian after the parents' death.
Siblings of children with ASD can also talk to mental health professionals or therapists. These professionals are usually more objective than family members and friends. They give people a safe place to discuss their emotions, thoughts, and experiences. Some mental health professionals even specialize in caring for families with disabled children. They can help family members develop personalized plans to deal with stress or other negative emotions.
It is important for people with ASD-affected siblings to make time for themselves. By making time to care for themselves, these individuals will likely be happier and more supportive of their brother or sister and parents.
Bibliography
“Autism and Developmental Disabilities Monitoring (ADDM) Network.” Centers for Disease Control and Prevention. CDC, 26 Feb. 2015. Web. 10 Mar. 2015.
Baio, Jon. “Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years—Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2010.” Centers for Disease Control and Prevention. CDC, 28 Mar. 2014. Web. 10 Mar. 2015.
Cain, Barbara. “Autism’s Invisible Victims: The Siblings.” Time. Time, 30 Nov. 2012. Web. 10 Mar. 2015.
Harris, Sandra. "Siblings." Autism Society. Autism Society, n.d. Web. 10 Mar. 2015.
“A Message for Teen Brothers and Sisters.” Sibling Support Project. Sibling Support Project, n.d. Web. 10 Mar. 2015.
Scherer, Stephen W., et al. "Whole-Genome Sequencing of Quartet Families with Autism Spectrum Disorder." Nature Medicine 21 (2015): 185–91. Print.
“Siblings.” Autism Science Foundation. Autism Science Foundation, 2015. Web. 10 Mar. 2015.
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