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Research Proposal on Autism

Introduction
Definition of Autism
Many people get extremely confused when people speak of autism, and they think it is just a childhood disorder. The reason why people think it is just a childhood disorder is because numerous studies focus primarily on educating autistic children, since it is very hard to do so. Autism is a biological disorder coming from the brain that impairs people’s communication and their social skills. It covers an exceedingly broad spectrum of disorders ranging from the very mild to severe. Autistics are described to be living in their “own world” and the high functioning autistics usually have two worlds; the “outside world” and “their world”. Autism can be accompanied with having many serious sensory challenges, such as lack of verbal communication, lack of eye contact, and the inability to hear what others are saying (Harris, 1994).

Siblings of Autistics
Since the definition of autism is so broad and very hard to understand, even for the most intelligent of adults, imagine how it would be for a younger child. The lack of knowledge given to the siblings of children with autism is just one of the many negative factors of having a brother or sister with autism. A siblings bond is very unique and is very important for any person’s life. Siblings usually share similar family experiences with one another, which enables them to form a special bond that lasts for the rest of their lives. Regardless that a child has autism or any other disability their siblings can often form a unique bond with them. The relationship between the siblings of an autistic child and the child with autism can be identical to the relationship between any other brother or sister. They may form a very close relationship and they may or may not remain close through adulthood, or they may not form a close relationship at all. The factors that can affect the special relationship between siblings doesn’t always have to revolve around the child’s disability and there are many other factors that can affect how they relate with each other. However, having a sibling who has autism can bring about many challenges with how the family interacts and some of these challenges can directly affect the siblings.

Significance of Studying this Topic
When a child has a sibling with autism it is very likely that the “normal” child will not form a very good family bond. This child will often feel as though they are not getting as much attention as the child with autism is and will most likely act out irrationally. The siblings will also have confusion of their role within the family unit because they take care of the autistic child so often that they begin to feel as though they are now the parent and not the child (Siegel, 1994). Not only can it deplete the family’s energy and time but also their resources, not allowing the other sibling(s) to have everything that they need or want (Paradiz, 2002). Having an autistic child can have many negative affects on the family unit and possibly tear them apart. Harris (1994) found that a family that has an autistic child in it is 32% more likely to go their separate ways when the children reach adolescence, than a “normal” family would.

Effects of Having an Autistic Sibling
Having an autistic brother or sister can have a large effect on both their sibling(s) and their entire family unit. While a lot of the affects are positive there are also many negative effects that one must examine. Bear in mind that there have not been many studies done on autistic children and their siblings so it was necessary to combine all the research from the children with other disabilities as well as the ones who have autism.

Lack of Knowledge
One of the main effects on siblings of children with autism is that they have a lack of knowledge on the disorder and do not quite grasp the concept of what is wrong with their brother or sister. The parents themselves are also not completely knowledgeable on the subject and are often unsure of what to tell their children. Children need answers and they need information on the disorder otherwise things will not turn out for the better. If they are not given enough information they sometimes get the impression that they too can “catch” autism. Children are not the only ones that think this, many adults believe that you can catch this disorder. The child may be in so much fear of “catching” autism that they will resist contact with their brother or sister and there will be even less communication between the siblings. They may even spend more time away from the household, ruining their relationships with the other members of their family. (Harris, 1994)

Attention
Attention, or lack there of, is also a big affect of having a sibling that has a disability. Parents of an autistic child have to spend a lot of time with their child because getting them to communicate is such a hard thing to do (Strain, 1995). When the parents spend so much time the child they often do not spend enough time with their other children. It is very difficult for the parents to manage their time wisely when they have to go to work, do household chores, spend extra time with their autistic child, and try to fit in quality time with their other children. The siblings of an autistic child may get very jealous and angry when their parents are spending more time with their brother or sister. As a result of this anger and frustration they may act out irrationally and throw fits to seek more attention. They can often do very bad things just so that their parents pay the littlest amount of attention to them as well. When the other children act out this way just for attention it only causes more problems in the family unit (Siegel & Silverstein, 1994).

Guilt
Siblings of an autistic child may feel guilty that their brother or sister has this disability and they do not. They may also feel as though they are to blame for their siblings disability. Because of the guilt they feel the children often feel that they are under pressure to achieve (Gold, 1994). They feel that they should make up for their sibling having autism and try harder is school and other various activities. When trying to achieve more than they have to the children often get very stressed and end up doing worse in school, or they do not spend enough time at home with their families (Howlin, 1988). The children do not realize that it is not their fault that their brother or sister has autism, and it is not the parents fault either. Gold’s study (1993) displayed that boys are more likely to be depressed about their brother with autism than girls are. This is because they are unable to do the things that other brothers are doing at their age.

Embarrassment
Autistic children do act differently than “normal” children their age act, and they also may look different than other children their age. Stoneman & Berman (1993) showed that brothers and sisters of a child with autism will often be embarrassed of their sibling’s behavior or appearance. When they are embarrassed of the autistic child they will often avoid contact with him or her, which will not allow them to make the special sibling bond that is very important in ones life. The sibling will often not invite friends over to the house because they are embarrassed. This can lead to the child hanging around with “the wrong crowd” and the parents never find out the type of people their children are friends with (Lobato, 1990).

Isolation
Children, especially teenagers, often feel like they are alone and no one else is feeling what they are feeling. When a child has an autistic brother or sister they feel as though there is no one else in the world who can possibly feel the way they feel about their brother or sister. This can often lead to the child isolating themselves away from everyone because they then think that they are different from the other children in their class or in their group (Siegel & Silverstein, 1994).

Role Confusion
Finding a babysitter that is able to handle the mishaps of an autistic child is hard to do, and finding a babysitter that is comfortable with the child and the child is comfortable with him or her is also hard. This is the reason why most parents have the sibling(s) of the autistic child be the primary caregiver for him or her (Harris, 1994). Being the primary caregiver for the child with autism can negatively affect the sibling because it causes role confusion. The child begins to think that they are more of a parent to the child than their brother or sister and usually their relationship never fully develops the way that it could. Not only does their relationship never reach the level that it should but the child also misses out on a lot of things that children should be doing, instead they are at home doing parental duties for their brother or sister. The child misses out on a lot of their childhood if they are stuck at home being the primary caregiver for the autistic child (Gold, 1993). The children can also feel resentment in the future towards their parents for making them always look after the other child and the relationship with them could also never fully develop (Howlin, 1988).

Positive Impact of Having an Autistic Sibling
Although there are many negative impacts on siblings of children who have autism, having a brother or sister with this disability can also have a very positive affect. Lobato (1990) found that people who have grown up in a household that has an autistic child in it are more mature, independent, responsible, patient, and self confident. Children who have an autistic brother or sister are usually more charitable and may grow up to have a better sense of human awareness and will be more sensitive towards others with disabilities. A child who grows up with a brother or sister that has a disability have a better sense of being close with their family (Powell, 1993).

Conclusion
Children who have a sibling that is autistic can get many positive traits eventually from having the brother or sister with autism, however there are many negative affects from the sibling having autism. The child who does not have autism in the family can often feel guilt and embarrassment about their sibling having the disorder. The children can also get confused about their role in the family unit when they are the primary caregiver for their brother or sister. Parents of the child do not normally provide the children with enough information on their sibling’s disability which causes a lot of confusion to the child. When reading this paper one would discover that the majority of children who have autistic siblings can suffer from guilt and depression from the stress of the pressure to achieve. The children’s relationships with their siblings and their parents can also diminish as a result of having a brother or sister with autism. Children can also miss out on their childhood which is an affect from role confusion. There are not many Canadian studies about this topic which causes some difficulty when trying to research. Many of the studies focus mainly on the relationships between siblings who are younger and there is not a lot of studies done on the relationships between them when they are adults. Having an autistic sibling can have many positive aspects to it but before they benefit from having a brother or sister with autism they must suffer from the negative aspects as well.

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