DISEÑO DEL ESTUDIO.

Characteristics of ASD, such as impairment in social interaction (see section 2.3.6.1), cause children with ASD to have difficulties in relationships with peers. This was expressed as of great concern for siblings (see section 4.3.2.2 on Worries). Parents reported that this becomes a problem when the family visits family friends with children, as the other children do not want to play with the child with ASD. Most of the participants in this study were between the ages of 7 and 11 years. According to Erikson and Piaget (Wait et al., 2003), children of these ages are in the developmental stage of middle childhood. This is a stage during which children become aware of social norms and are sensitive to peer pressure (Wait et al., 2003). Around the age of 10, children become very aware of what their friends think of them and they might try various methods (some to personal disadvantage) in attempting to be socially acceptable (Wait et al., 2003). Relationships with peers therefore are very important at this stage of development.

4.3.6.1 Bullying

The impairment in social interaction of a child with ASD can sometimes cause problems in relationships with peers and even lead to bullying. For example, one participant reported why her friend's brother "hates" her brother. She said:

"because [her brother's name] always plays with [the boy's] stuff in his room and [the boy] doesn't like him to touch it. And he [her brother] doesn't ask and sometimes when he asks and the boy says no, he still touches it. And he interrupts our games."

Another participant said "… he just takes someone's cool drink and drinks it".

One sibling expressed her concern about her brother becoming the victim of bullying because he often does not understand social situations. She said:

"I'm scared that somebody's going to do something to [brother's name], like maybe he does something wrong … in high school for example … and then that person will think 'Hey that person is hitting on my girlfriend' when he actually just meant to say 'Hello, my name is X, what's your name?' He [brother] just thinks, look there's a person, maybe she'll be my friend and then the dude thinks he's hitting on my girlfriend and he might get angry at my brother and then he might do something and then nobody will understand. Everyone will just think he's a rude person and they don't understand that he's actually just with autism. He just wants to be friends with

everyone … Although sometimes he finds it hard to talk to people, he just wants to be friendly."

Bullying was a theme that came to the fore in most of the interviews. It seems that children with ASD often are the victims of bullying. This can be linked to section 4.3.1.3, A need for others to understand ASD. One participant mentioned how "the children in the street [where

they lived] almost threw him [brother with ASD] with rocks and then a boy was rude to [brother's name]". Another participant talked about how his brother with ASD was bullied

when they visited friends or at school; he stated: "[F]or example, when we visit friends and

he has to come with or at school, then there are a lot of friends and then there are always bullies too and then they bully him."

As discussed in section 2.3.6.2, children with ASD experience communication difficulties which make it difficult for them to distinguish between joking, teasing and bullying. As a result, they often become the victims of bullies (Welton, 2004).

This is upsetting to siblings. In response to a question regarding the feelings of her brother with ASD about being bullied, a participant said that "it hurts his feelings, but it hurts my

feelings the most". A parent reported that the sibling was "torn" when his friends came to

visit and they ignored his brother with ASD. It was difficult for him because he wanted to play with his friends but he also loved his brother. The parent reported: "He felt torn in terms of

where his loyalties were supposed to lie."

The result of bullying is often that siblings get involved in fights as well. One participant said

"and then the fighting starts". Furthermore she said that she often caused fights because she "doesn't want [her brother] to get hurt". Thus, she "can't just say, yes take it"; she will "run in and hit in the same way they hit [her brother] and more". This section is linked to section

4.3.3.2, The sibling as protector.

On the other hand, one participant said: "My friends don't make fun of him and stuff." This participant came from a higher socio-economic background and was well informed about ASD, thus it might be possible that bullying occurred less in this specific area, because the children in this area were better informed about disabilities.

4.3.6.2 Siblings as advocates

Advocacy refers to siblings standing up and speaking out for their brothers with ASD. According to Conway and Meyer (2008), siblings can help to dignify the lives of a brother or

sister with a disability (see section 2.4.2). Siblings reported standing up for their brothers with ASD when they were being bullied. One participant said:

"and then I said, you don't push someone who is not like you. Then he [bully] said: 'someone who is disabled/retarded'. Then I said he is not disabled/retarded. Then he said: 'yes he is'. And then I said you don't know anything about my family."

Another participant explained how he always ensures that people know what really happened. He described two different scenarios:

"[T]hey teased him [brother with ASD] and then they hurt him, one threw him with a block of wood over his head. Then I told his mom and he had to apologise to my brother". "My younger brother and [brother with ASD] are big enemies, because [younger brother] always teases him and then he gets hysterical and hits him, then [younger brother] tells my mom and then my mom wants to punish [brother with ASD]. But then I explain the truth about what happened."