Investigation, Translation and Reflection 1

Investigation, Translation and Reflection: Media, Family Life, and Autism

Nicole Maratto

CMM400

Professor Yang

May 1, 2018

Investigation, Translation and Reflection: Media, Family Life, and Autism

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Many boys and young men with autism struggle to relate to others (Pinchevski & Peters,

2016). Autism also creates in people a strong connection to visual imagery (Baron-Cohen as

cited in Pinchevski & Peters, 2016). This may be why people with autism are attracted to

technology because of the visual component and the ability to socialize without actually relating

to someone. Through technology, people with autism can bond over a common activity without

ever being in the same room and talking to one another. According to many studies “the internet

and the associated new media have introduced new opportunities to people with various

disabilities” (Pinchevski & Peters, 2016, p. 2517). Pinchevski and Peters (2016) referred to an

article in the New York Times which talked about how cyberspace is helping autistic individuals

communicate. Even though other researchers say that too much digital exposure can be negative

for families, in this case study of a family raising an autistic son it helps the family (Lapierre,

Piotrowski, & Linebarger, 2014). They are raising a young man who doesn’t know how to

socialize typically and can’t participate in a lot of activities that most people can. Using video

games and YouTube gives him a sense of creativity and it helps him engage with others and

makes him feel competent.

Nancy is the mother of a 20-year-old man with two diagnoses: autism and ADHD. He

also has a very unusual brain anomaly. Part of his brain is malformed. Willie was adopted when

he was five days old, in New Mexico where the family lived at the time. Nancy and her husband

had no idea about any of these developmental disabilities and knew very little about the birth

parents. Willie has an older sister who was also adopted in New Mexico. Both of the children are

Hispanic. Nancy is white, and her husband is white. She considers the family upper middle class.

Nancy is a former journalist and taught journalism for twenty years. She has a laptop, her

husband has a desktop, her son has his own laptop. They subscribe to Netflix and Amazon Prime
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video. The family subscribes to the paper version of New York Times, but Nancy also reads the

paper online. They listen to National Public Radio on the radio, not a smart speaker or any other

device. She monitors different news sites.

Nancy said Willie watches videos and plays computer games. He plays computer games a

lot, she said, and uses the computer for those games for three hours a day. He really likes

computer games. He plays those a lot. He also watches videos, on YouTube. When he was really

little he was kept off screens. “We would watch a half hour to an hour a day of really innocent

children’s shows like Sesame Street,” said Nancy. He discovered computer games and started

playing more and more. It became very difficult to limit his time on the computer. He gradually

increased his time on the computer as he grew older.

Nancy followed the recommendation of pediatricians about media use. According to

Lapierre et al. (2014) pediatricians recommended that parents limit screen media for their young

children and watch the programs together. But what happened relates to Dunckley (2016) who

said that autistic people can get addicted to technology, especially to interactive screen time and

it can release chemicals in their brains that make them want to do it more. In addition, Nancy

because she comes from an upper middle class family can encourage use of technology in both

ways -- sitting with her child, or allowing her child to use technology unsupervised -- because

they have access to it and don’t have to worry about it breaking (Alper, 2017).

When Willie gets up in the morning, Nancy said, he goes on the computer for maybe half

an hour. Then he has to get ready for school. He is not allowed to be on media at school all day.

He’s in a classroom with teachers and aides. He gets out of school at three, and he uses a hand

held device during his long ride home from school. Alper (2017) said that happens a lot, and

many families provide DVD players for the back of the car, too. He gets on the computer when
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he gets home at 5. He has dinner, and has to be off the computer by 7 because he gets ready for

bed then and is in bed by 8. He doesn’t have any electronics in bed. It is very hard to make him

get off the computer at 7. We have to insist, said Nancy. Dunckley (2016) said that screen time is

a rush for these kinds of people, and arouses them. But Nancy understands that Willie won’t

sleep without stopping the computer. Dunckley (2016) wrote that screen time suppresses

melatonin.

Nancy said that media plays a big role in Willie’s life. He likes YouTube and watches

very childish videos -- like Yugio. He really likes games and assisted programs, like Minecraft.

He also likes a game called Terraria. But he doesn’t use social media, Nancy said. “We don’t

allow him to play violent games with guns,” Nancy said. Willie does talk to people through the

Minecraft. Nancy seems to practice authoritative parenting -- parents follow the rules and

enforce them. However, she thinks of herself as restrictive not authoritative or authoritarian. We

aren’t restrictive completely, like allowing only one hour a day said Nancy. We restrict the time

and the content. I know what he is looking at and I know what some of these games involve. He

sits in the dining room while I am cooking and I hear what is going on on his screen and I know

what sites he has been to, so I know what he is looking at but I don’t play the games with him.

When he was a lot younger he would ask me to play with him and I did for a period of time.

Then I stopped and now I don’t play. And he knows that I won’t. I have an understanding of

what he is doing. I know what he goes to and what he is looking at, she said. Willie doesn’t use

any social media. He’s not interested, he doesn’t want to, she said.

Nancy seems to be following the pattern described in Lemish (2015). The author talked

about different kinds of parents, and different kinds of steps, and the way parents mediate about

technology with their children. When they are younger, parents monitor their children much
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more. Valkenburg and Pitrowski (2017) talked about this too, saying mediation is broken down

into three parts: co-viewing, restrictive, and active mediation.

Technology has given him something to keep busy on, Nancy said. He has a lot of

disabilities, she said. He is not a kid who can go out and play baseball or soccer. And he has

really big problems with social interactions. If you start a game with him and he doesn’t win, he

gets really angry. A lot of other activities that other kids pursue, like Boy Scouts, didn’t work

out. He just can’t do that. But he can get online and he can play these games and feel competent.

He uses a phone to talk to a friend while they go to a site that they can both get on at the same

time and they communicate that way. He has access to that kind of relationship forming. This is

how he can access friends he has from school. They can play on games together after school, she

said

It is really hard to keep Willie off the computer. Weekends are the hardest because we

don’t have school, and when he is in the classroom, he has seven hours a day with no media. But

then, on the weekends we have to make sure we structure time to keep him off the computer and

off the screens. We will plan activities like swimming at the Y. We live in DC so we frequently

go to the museums that he likes. We take walks in the forest. But we have to make sure that he

knows that that’s coming. We remind him at a certain time we are leaving the house and he is not

going to be able to be on the screen.

Technology has given him something that he can do, that he can feel confident at and

competent at. He obsesses over it. Like all technology, it’s a double-edged sword. For him, his

games are a source of entertainment but at the same time he obsesses over them, said Nancy.

This is part of the challenge of raising someone with autism and being in a family with someone

with autism, making them feel comfortable with themselves and normal. In an article in The New
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York Times that a parent wrote it’s really hard to raise a child with autism and to help them

function but also be as normal as possible (McGovern, 2017). For kids like Willie, technology is

a tool to help them feel more normal (Alper, 2017).

Reflection

Even though I don’t have autism, or a form of mental retardation, I have dyslexia,

auditory processing disorder, and ADD/ADHD. I, too, have a neurological imbalance in my

brain. Growing up it was very hard for me. I struggled a lot through school. A lot of teachers

were mean and unfair to me because they didn’t know and my parents didn’t know either what

was wrong with me. Not a lot of people knew then. Talking with Nancy brought a lot of these

struggles back to me. It made me reflect on my childhood and my upbringing. I understand what

it feels like to be the outsider, to learn differently. Nancy’s son doesn’t choose to live this way.

He didn’t choose to be born this way.

When I was growing up, my mother pushed me outside. I was always happy outside and I

was a good athlete. I really didn’t like to use media much. I thought it was too complicated and I

couldn’t get a grasp on it. I would see the keyboard, and I couldn’t figure out how to type on it. It

looked like a jumble of letters and I just stayed away from it.

With Willie’s disorder, the computer keeps him calm. It works for him. It gives him

confidence that he is good at something. My mother did this differently because the media was

different back then, too. I didn’t have a desire as a kid to sit at the computer but my mother

wanted me to feel confident and competent just like Nancy wants her son to feel. I excelled at

being physical and any form of building stuff, and very hands on, so my mother got me into

things that I could be good at. When you have a child like Nancy’s son, you have to instill

confidence and to find something they can be good at.

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It is extremely hard to raise any kind of child with a disability. Your heart breaks for the

child because you watch them struggle. I would pray for myself to be normal like everyone else,

to be able to do school work, to be able to read and write, but I couldn’t. My parents took me to a

special hospital where I was part of a bunch of studies for many years to try to figure out what

was wrong.

Having a child with a disability can make a family stronger. There will definitely be

strains but that’s life. Life always has challenges and strains, and families have to overcome

them and learn how to overcome them together. Sometimes it takes a bunch of people to move

mountains.

I’m glad I talked to Nancy. I wish I could have transcribed the interview word for word.

The things she was saying about technology were really relevant to our classwork and made the

whole experience come full circle. When she talked about media use and how they regulate him,

how the school doesn’t have media, how they have to prepare their son to go out and move off

the media showed me, wow, all the stuff we read about this semester is real. I don’t think about

it, but talking to Nancy made it real.

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References

Alper M. (2017). Giving voice: Mobile communication, disability, and inequality (p.1-11,20-27).

Cambridge, Massachusetts: The MIT Press.

Dunckley, V. L. (2016, December 31). Autism and screen time: Special brains, special risks.

Psychology Today. Retrieved from http//www.psychologytoday.com

Schofield Clark, L. (2013). The Parent App: Understanding families in the Digital Age. [Chapter

7: How parents are mediating the media in middle-class and less advantaged homes, p. 151-173].

New York, NY: Oxford University Press.

Schofield Clark, L. (2013). The Parent App: Understanding Families in the Digital Age.

[Chapter 8, p. 174-200]. New York, NY: Oxford University Press.

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McGovern, C. (2017, August 31). Looking into the future for a child with autism. Retrieved from

https:/www.nytimes.com

Pinchevski, A., & Peters, J. D. (2016). Autism and new media: Disability between technology

and society. New Media & Society, 18(11), 2507-2523, 10.1177/1461444815594441

Valkenburg Pitrowski