autism spectrum disorders research paper

Autism: A look into its social perception and its effect on Family

Paul Honke and Dylan Mumm

Abstract:

Autism Spectrum Disorders is a genetic disease about which many people are still unsure. Whether it concerns the cause of Autism or its effect on everyday life is not clear to them either. This project intends to explore the social and familial effects Autism Spectrum Disorders has for everyday life by finding the public’s perspectives of Autism by means of an online survey to collect the data about public’s basic knowledge of Autism Spectrum Disorders and its possible relationship to vaccines. The second part will be conducted interviewing with parents about their experience with Autism Spectrum Disorders. This project would help the larger society better understand Autistic children and their families, and advocate the public’s positive support to those children and their families.

Autism Spectrum Disorders have been around for a long time and has not shown any

signs of going away. Words relating to the condition such as “Autistic,” or “Asperger’s” have

become part of the native vocabulary for many people (Williams, Woolfenden, Roberts, Rodger,

Bartak, & Prior, 2014, p. 335). Through areas such as early detection, media books, and

treatments, Autism Spectrum Disorders have been made more available to the public in more

recent years. (Williams, et al., 2014). Yet, even with all of this knowledge, many questions are

still left unanswered, such as its overall perception in the public or its direct effect on family life.

This study is a class research project. This paper will talk about the social perception of

Autism Spectrum Disorders and its direct influence on the family, both primary and extended

through interviews. Included in both of these points will be minor details about their belief in the

connection between Autism Spectrum Disorders and vaccines. An online survey will also be of

use to gather in important data. The interviews and surveys will lead into a deeper look at how

Autism is viewed and how it directly influences the life of those who are around it. This study

will be important for medical, counseling, and disability services everywhere.

Literature Review


This paper contains the following theories based on the social perspective of autism and

its relation to vaccines, as well on the family life of Autistic patients. Following that will be the

methodology relating to these subjects and our research questions.

The S ocial Perspective of Autism

Autistic Spectrum Disorder is a developmental disorder that affects certain areas of the

mind such as communication, imagination, and socialization (Lowth, 2015). Despite little

evidence on what causes Autism, a study suggested that exposure to toxic chemicals may affect

the brain to develop Autism (Jensen, 1994). As Lowth (2015) says, people born with Autism

Spectrum Disorders have impairments certain communication areas that can cause stress within a

victim’s social life. Some of the most prevalent victims of social life are teenagers, who are often

unhappy with their ability to socialize and can be met with confusion from others due to their

condition (Lowth, 2015).

Communication is a big factor when it comes to Autism as shown in the theory of health

communication. “Communication is a transactional process and in a health context it is an

important part of health promotion work (Corcoran, 2007).” Communication in health is very

specific in its goals (Corcoran, 2007). Communication in health primarily involves itself in the

manner of preventing risk or raising awareness around the subject (Corcoran, 2007). There are

five factors in health communication, interpersonal, intrapersonal, organizational, community,

and public mass (Corcoran, 2007). In addition Autism Spectrum Disorders act as a barrier to this

due to it having a negative effect on Autism (Lowth, 2015).


In the most basic terms, communication is processed in a manner that starts with the

sender, who sends out a message that reaches the receiver, though more variables can be added

such as understanding of the message and feedback (Corcoran, 2007). Within communication,

verbal and non-verbal factors are taken in and analyzed (Corcoran, 2007). Certain non-verbal

factors include rhythm, body language, non-verbal expressions such as “mmmh,” and appearance

(Corcoran, 2007). It has been suggested people with Autism Spectrum Disorders struggle with

communication every day. This is due to the fact that the message sent by the sender cannot be

process well in the 4th and 5th stage of communication (Martin, 2012). These include not

understanding the subtle behaviors of non-verbal language (Martin, 2012).

It is reported that the general public does not react well to Autism (Martin, 2012). This

began when Eugene Bleuler’s used the word “autistic” to describe the anti-social behavior of his

schizophrenic patients (Martin, 2012). Due to that, the perception of the condition in the general

public has had a history of being negative. This can be magnified depending on the gender of the

individual. As it is suggested that the overall treatment of Autism Spectrum disorders differs in

its perception whether or not the person is male or female (Matthews, et al. 2015).

However, the public awareness of Autism Spectrum Disorders have been said to be on

the rise. In recent years, the condition has gotten in the mainstream media and has the subject of

many medical technologies designed to treat it ((Williams, et al., 2014). It is suggested that the

majority of people are aware of Autism Spectrum Disorders and when further questioned, can

name certain signs and symptoms of the condition (Dillenburger, Jordan, & Mckerr, 2013). In

addition, most people will think that one of the biggest challenges that Autism Spectrum

Disorders is facing lies within communication (Dillenburger, Jordan, & Mckerr, 2013).


Autism Spectrum Disorders in the media may be under the effect of the cultivation

theory. The cultivation theory explains that the more people watch television, the more they will

believe it reflects real life (Potter, 2014). This may factor in that the media wants a different

perspective on Autism Spectrum Disorders. According to Alexandria Prochnow (2014) “media

representation practically never accurately portrays social groups as they actually are in reality”

(p. 133). For example, a news article in 1998 suggested a possible correlation between MMR

vaccines and children developing Autism, despite later studies showing that the results were

(Holton, Weberling, Clarke, & Smith, 2012). According to Prochnow (2014), the media usually

portrays Autism Spectrum Disorders in four groups; magical/savant, “different” quirky,

undiagnosed/unlabeled, and realistic portrayals, and the only thing they have in common with

each other is that they portray Autism Spectrum Disorders as high functioning, despite only one-

fifth of reported Autistic patients having a normal level of intelligence. Media tends to affect the

everyday perspective by not allowing the multiple spectrums of Autism Spectrum Disorders to

be revealed, and instead leaving a more hyper positive view on it (Prochnow, 2014).

Autism and Family life

For parents that have children with Autism Spectrum Disorders, one of the problems is

that treatment can be difficult. Not in actually finding one, but deciding which of the thousands

of procedures used to treat Autism Spectrum Disorders is what they need (Call, Dealfs, Reavis,

& Meyers, 2015). Due to this, many studies on why parents choose the treatments for their

children vary. Some of these studies can range from, the type of symptoms and severity in the

child, treatment availability, its effectiveness, knowledge of procedure, and cost (Call, et al.,


2015). Parents tend to choose many treatments even though they have little knowledge on

Autism and could cause potential harm due to these circumstances (Call, et al., 2015).

The theory of stress is a high factor for parents. Parents of Autistic children are at an

increased risk of stress (Bluth, Roberson, Billen, & Sams, 2013). One of the biggest reasons for

this is due to a demand of time and a lack of social life (Bluth, Roberson, Billen, & Sams, 2013).

There are other factors of course. Some of these factors include, behavior and communication

problems, regulatory issues, and decreased satisfaction within the family (Bluth, Roberson,

Billen, & Sams, 2013). Despite the stress, many families keep on going and have adapted well to

the situation (Pozo, Sarria, & Brioso, 2014). Siblings in particular can be well adjusted, taking a

teacher role to help teach their siblings about life (Sage, & Jegatheesan, 2010). However, some

negative effects in the family life pertaining to siblings involve distance, neglect, and excess

responsibility which could lead to stress (Sage, & Jegatheesan, 2010).

Additional stress as Hines, Balandin, and Topher (2013) explained can also come from

people suffering from Autism Spectrums Disorders are not able to move out, and are forced to

rely on their parents. This ties back into the greater demand and lack of social life for parents.

However, there are also examples of a good relationship being established when the child stays

home. An example of this can be found in parents of Autistic children partaking in

homeschooling. This has often resulted in a closer bond with the family (Benson, 2015).

For parents, planning to change the behavior in Autism Spectrum Disorders may be

difficult. From the perspectives of health communication, there is a therapy method known as the

theory of planned behavior (Corcoran, 2007). Within that perspective, it is suggested that any

changes to behaviors must involve the beliefs, as they help influence the characteristics of the


person (Corcoran, 2007). The characteristics are influenced by determinants, which help

carrying out one’s behaviors (Corcoran, 2007). In the theory of planned behavior, there are three

factors carried out by individuals are based on surrounding intentions.

Attitude to the behavior: the balancing of the pros/cons of performing the behavior or the

risks/rewards they associate with that choice. Subjective norm: social pressure from

significant others, for example peers, media or family. Perceived behavioral control: the

perception that person has about their ability to perform the behavior (Corcoran 2007, p.

13).

Methodology Used to Collect Data

There was a quantitative study in Ireland called the Northern Ireland Life in Times

Survey (Dillenburger, Jordan, Mckerr, Devine, & Keenan, 2013). The study comprised more

than 1000 people 18 or older, and used a cross-sectional type survey (Dillenburger, et all, 2013).

The goal of this study was to find feelings and knowledge about Autism Spectrum Disorders.

The survey had two parts: a face-to-face interview using computer technology, and a section

people filled out themselves that was also assisted by a computer programs (Dillenburger, et all,

2013).

In a study to find factors concerning treatments, parents rated individual treatments both

real and hypothetical. The study involved 3 conditions and methodologies to be studied;

(1) how parents were deploying their own resources toward treatments; (2) how they

would use treatments when there were no constraints in the form of cost and availability;


and (3) the respective influence of two treatment factors (i.e., empirical support and

immediacy) on their decision making. (Call, et al., 2015, p. 11)

Parents were given a questionnaire about treatments, including a current treatment

utilization to “examine how participants were allocating their resources toward specific

treatments,” and unconstrained treatment factors, which is to “examine how participants would

allocate their resources toward specific treatments if there were significantly fewer constraints in

the form of cost or availability,” and opposing treatment of factors, which “consisted of

empirical support and immediacy of treatment outcome” and would be compared to current

treatment utilization and unconstrained treatment factors (Call, et al., 2015, p. 12-14).

In the qualitative study used by Hines, Balandin, and Topher (2013), after interviewing

16 parents and figuring out if their Autistic child was living at home, in a group home, living

independently, or if they had someone watching over him/her while the parents were working.

They also looked into how much parental involvement there was if they lived out of the house

and how it has affected their lives overall. (Hines, et al., 2013).

Research Questions

RQ1: How much knowledge and awareness the normal public has of Autism and its relation to

vaccines?

RQ2: How Autism has affected the family life and whether or not they got support from

extended family?

Research Methods

The research methods used for this study will involve both qualitative and quantitative

questions. For the qualitative research method, we will interview either in person or over the


phone with parents of Autistic children and their extended family. The interviews for the parents

will go into their thoughts of Autism Spectrum Disorders and how it has affected their life. We

will be questioning the stress coming from the daily life of being a parent of a child with autism

along with some of the problems they see. We will also indirectly ask questions relating to

possible anger and stress among the family.

We will then be interviewing over the phone or in person their extended family to talk

about how they viewed the family dynamic from their point of view. We will also ask them their

thoughts and how they have gotten involved with the family in question. The purpose of our

qualitative methods exist to get up close with our participant to see or hear the emotions they feel

so we can get a better understanding of how Autism Spectrum Disorders has affected their lives

and their family. Additional questions will also turn up in the interview depending on certain

answers the participant gives us as a means of expanding the information.

The final research method we will be using will be a quantitative study utilizing an online

survey. The link to our online survey can be found at:

https://www.surveymonkey.com/r/T7FQG7R . Here, we will ask random people their thoughts

concerning Autism Spectrum Disorders from the perspective of everyday social life and its

relation to vaccines. Due to the fact that the people who answer the questions will be kept

anonymous, it will allow us to reduce the bias to the minimum and focus on the pure factor of

determining the awareness and knowledge of Autism Spectrum Disorders. Over the course of the

survey, we will keep track of themes and patterns after we collect all the information by means of

these methods, we will then begin analyzing the data.

Data Collection

https://www.surveymonkey.com/r/T7FQG7R


Much of our data came from the interviews with our participants. In the qualitative study,

we used phone interviews between two families. Due to the privacy we will note the families as

Family A and Family B. The other interviews focused on the perception by other members of the

family, mainly daughters, and aunts. In total, there were 4 parent interviews and 5 relative

interviews. These participants were contacted over the phone and agreed via oral consent to

participate in our study.

When it comes to the quantitative data we relied on a survey monkey online. We had a

total of 17 responses after sending it to multiple classrooms, Facebook, and blogs. Originally 39,

technical issues made us create a new survey. The questions on the survey talked about the

everyday knowledge of Autism Spectrum Disorders and how much the public knows and

perceives it. The participants of the survey were kept anonymous by design of the survey. Only

the statistical results and open ended responses were shown.

Results

RQ1: How much knowledge and awareness the normal public has of Autism Spectrum Disorders

and its relation to vaccines?

For the quantitative results in our survey, we noted that we expected people to have a

limited but growing knowledge of Autism Spectrum Disorders including symptoms, its cause,

and its relation to vaccines. While we are true in that people still have questions about the

condition, there is proof that people are growing more aware of Autism.

Public Awareness of Autism Spectrum Disorders

When questioning how much people actually know about Autism Spectrum Disorders,

78.95% of participants noted that they are still learning about Autism, showing that it is still a


condition that hasn’t been fully explored. Out of our participants, there was an equal number of

people who know a lot and know nothing about Autism Spectrum Disorders at 10.53%.

Despite many people citing the negative portrayals in the media later on, the majority of

participants noted that the awareness of Autism Spectrum Disorders has risen greatly over the

years. With 89.47% noting that awareness has been rising all over compared to the 10.53% who

said no.


Challenges to Autistic Children

In a question related to the challenges of Autism Spectrum Disorders, the highest answer

was people with Autism Spectrum Disorders is having trouble living independently at 47.37%.

This is in comparison to the other options such as; finding friends at 36.84%, obsessive

compulsion tendencies at 15. 79%, I don’t know at 21.05%, and other at 21.05% with the

responsive being either; “It depends on the person” or “I think all of them.”


In a question that relates to what can make an Autistic person happy, the majority of

responders listed friends and support at 84.21% with “close family” at 57.89%, A good doctor at

31.58%, and other at 0%


This shows that many are knowledgeable of Autism Spectrum Disorders causing

problems in terms of social communication and friends and family are big contenders to helping

that.

In relation to above, the question that asked the participants about the signs of Autism

Spectrum Disorders. The majority of responses for the open ended question about the signs

indicate that repetitive behavior, difficulty in social relationships, and emotion reading as top

signs that people are aware of.

Causes of Autism

One of the biggest mixed reactions as we expected were noting what the cause of Autism

Spectrum Disorders were. The leading cause people answered were brain disorders at 47.37%,

followed by: I don’t know at 42.11%, other being at 26.32% with many citing genetics,

environmental problems at 10.53 %, and vaccines at 5.26 %. It’s clear that people have an idea,

but answers are still needed.


In our more prolific questions about the discussion between vaccines causing Autism

Spectrum Disorders, we were surprised to find that there is a more definite conclusion about

vaccines nowadays in the general public. 63.16% of the answers being no, 5.26% was yes and

31.58% being I don’t know.


Media’s Impact

In one of the open ended questions concerning the portrayal of Autism Spectrum

Disorders and similar disorders in the media, it was slightly mixed. Many of the responders

noted that the media does not do a good job, citing that they tend to be helpless or gets facts

wrong and only portray the “mild” version of Autism Spectrum Disorders. Just as many

however, note that while many would say that it has been bad, the media has been improving in

the portrayal. Despite that, many noted that they are still unsure as they haven’t seen many

portrayals.

Family Interviews.

RQ2: How Autism Spectrum Disorders have affected the family life and whether or not they got

support from extended family?


The results for many of the qualitative interviews have been similar, but overall different.

Due to the study being placed among two different families, certain views regarding certain

topics will be different.

The differences were determined largely due to Child A in Family A having a mild form

of Autism Spectrum Disorders, but is affected by mild mental retardation. This is in contrast to

Child B in Family B who has a mild form of Autism Spectrum Disorders but is on the higher

functioning end of the mental scale. Amongst the questions asked during the interview, there

were similar trends for each of the parents.

Family’s Reaction to the Reality and Treatment of Autism in a Family: How did it Happen?

When asked about their reactions to the news that their child had Autism Spectrum

Disorders, both sets of parents and relatives talked about being sad and taken back by the news.

The parents after words both asked their doctors many questions and used multiple treatments for

their child. They did not know a lot about the treatments due to being rather new to the condition.

When looking at the trends relating to vaccine questions, most of the parents and relatives

agree that while they may have believed in vaccines being the cause at first, they have since let it

go and no longer believe in that anymore. This coincides with the parents and relatives belief on

the cause, with the majority citing a combination of genetics or environment. Overall, they admit

that they have little idea and that it’s just speculation.

Family Life and stress

Social Life. For both parents, the lack of social life was common and showed a good deal

of stress due to the demands of their child. In Family B, they already had some children so their

social life was already being hampered, but nonetheless had some time to see friends. Family A


noted that they have been more grounded and have resorted to taking Child A with them as they

go. Despite that, one of the recurring trends in the interviews was the notion that they have

accepted and are proud of their children regardless, becoming closer as a family all together.

Many of the relatives also noted the closeness as their defining factor.

Child Independence. Despite this, there were big differences between the two parents

when asked if they believe their child will be able to live independently. Family A believes that

Child A will never be able to live an independent life. The reason for this is because of the

severity of Child A’s condition. Child A, while a bright child, has an impaired mental function

that makes him unaware of danger, is very childlike, and having an impaired vocal pattern. His

parents note that Child A works well under safe conditions, but still needs someone to look after

him as he gets older. This is in contrast to the Family B, who mentions that despite the mild

severity of Autism Spectrum Disorders, Child B can function at a normal level. Despite this, the

prevalence of stress in their life was clear largely due to their child’s condition and the demand it

takes to take care of them.

How to Help Autistic Child and Family

Planned Behavior. Both parents answered similarly to the question that relates to theory

of planned behaviors when asked how they changed their child’s behaviors. Both families note

that when trying to change behaviors, they would use the intention of subjective norm, where

both parents will talk to their child to show them proper behaviors.

Support to Family. For nearly all of the participants in the family member interview,

many have noted that they have helped out the family with some of their problems. Many of

these deal with babysitting the Autistic individual or offering advice. With the exception of the


siblings, many of the aunts noted that they are not as close as they would like to be. Family A’s

relatives noted that while Child A recognizes them, due to the distance they are from the family,

they have not spent quite as much time with the Autistic individual. This indicates that while

related family members are willing to help, the distance impedes some relatives from helping the

family more.

When it came to discussing how they believed Autism Spectrum Disorders happen, many

are left unsure. The relatives believe that vaccines are largely uninvolved and their attentions

have moved towards other areas such as genetics or environmental causes. However, most of the

family is not entirely sure about the cause of Autism Spectrum Disorders. All of the family

members have noted that one of the strengths of the family is the closeness they have despite the

challenges they face as well as issues with time management.

When it came to asking how other members of the family act towards the target families,

all across the board have been respectful. While in Family A, there have been many cases of

families with disabilities and they usually try to help when they can. However, as one of the

participants in Family B exclaimed, many of the family members tend to be standoffish due to

confusion and out of respect for the family.

Communication:

Communication is a big challenge for people with Autism Spectrum Disorders. Family

A’s child condition has taken away a good percent of his verbal ability, limiting it to around one

or a few words at a time. This on top of the fact that his low mental function leaves him unable to

understand or give feedback to his parents leaves them puzzled on what he wants at times.

Despite this, he is able to get around this by writing in simple sentences and communicate that


way. This is in contrast to Family B, whose child can communicate with everyone on a normal

level.

Discussion

Social Analysis:

Overall, the amount of awareness in Autism Spectrum Disorders have surprised us during

this study. Many people have distributed knowledge about challenges and the signs of Autism

Spectrum Disorders. We can contribute the rise in Autism Spectrum Disorders awareness in due

to the rise of medical technology and certain programs in the media (Williams, Woolfenden,

Roberts, Rodger, Bartak, & Prior, 2014). The prevalence of medical advancement and media has

also seem to contribute to the lessening beliefs of vaccinations being a cause of Autism

(Williams, Woolfenden, Roberts, Rodger, Bartak, & Prior, 2014). Despite this, there are very

mixed reactions to areas such as what causes Autism Spectrum Disorders, as it is something that

doctors are still struggling with. Because of this, the overall perception behind the medical side

of Autism Spectrum Disorders are mixed, as while some have strong opinions about the cause,

many have no idea how it is caused. We suspect that this perception behind the science of

Autism will be answered in the future as science and medical technology grows. As many people

are still learning about Autism Spectrum Disorders, the perception and the troubles understood

the general public seems to indicate that help is on the way for many Autistic individuals.

Despite the possibility that the media may be giving rise to more awareness, similar to

Alexandria Prochnow (2014), many have noted that the overall portrayal in the media being

rather negative. Many in the public note that the media promotes negative stereotypes such as

being helpless in many areas. This would mean that the cultivation theory is not having a strong


effect on the public. While there is a small contingent indicating that it can be played well, the

overall view is negative.

Family analysis:

Based on the answers from qualitative end, it is apparent that the aspect of Autism

Spectrum Disorders has deeply affected the family. The challenges in taking care of the child has

led to stress within the family, primarily due to the lack of a social life (Sage, & Jegatheesan,

2010). In addition, we can relate the stress level of the family as well as the child being able to

live independently based on the severity of Autism Spectrum Disorders (Hines, Balandin, and

Topher 2013). Due to Child A’s mental functions, communication has also been hampered. It

was noted that communication is hard for Family A as said by one of the parents due to their

child not responding well to understanding the message and primarily the feedback that health

communication relies upon (Corcoran, 2007).

He does have problems understanding the message and giving back feedback. He does

understand written language better than verbal. He doesn’t like interacting with people he

doesn’t know but he can warm up to them. This applies to people that he works with and

communicates to them by written and visual language. He communicates through

software on his iPad. His initial comprehension is at 20 percent, but can go up with

practice. However, he can't speak and form words properly due to his condition. (Family

A participant)

The combination of these symptoms have made the possibility of Child A living

independently is impossible. This in general gives Family A more stress than Family B. Despite

this, much like Hines, Balandin, and Topher (2013) touched upon, living together has developed

a healthy relationship between parent and child.


Despite this, the families have adapted pretty well and have shown to be pretty caring to

the child as was noted by Pozo, Sarria, & Brioso (2014). This was shown during the questioning

about the treatments, as they asked their doctors anything they could to help their child lead a

normal life. Whether it came from the relatives or the parents, all sides noted that the family

seemed to be very close to each other. However, the relative distance the relatives lives away

from the immediate family plays a big factor in determining how close they are to each other. As

the siblings, who normally live alongside the individual performs a much more prominent

caretaker role than the relatives who are limited by distance. We believe that this can be based

upon that fact that the families have to bond together in order to make the best of the situation; if

this were not the case, then the families would have been in a more dire state. That being said,

the fact that the families have adapted very well could have been because of the factors between

the severity of Autism Spectrum Disorders in the family and their socioeconomic status. Sadly,

this study did not have the resources to find families with an Autistic child in lower classes or

more severe cases of Autism Spectrum Disorders.

In relation to the theory of planned behavior, the theory is on track with the second

intention of using peers and family to help shape behaviors and intentions. The reason can be

directly related to above, as the families pull themselves together to create an environment

needed for the child to survive. Due to the effects of Autism Spectrum Disorders on thinking and

mental impairment in certain areas, weighing pros and cons or believing their own behavior

seems to be a less viable option in parenting (Lowth, 2015). Family B, provides a quote that

helps support this:


We always tried to have a pretty relaxed way of raising him. If there was a problem we

would just kind of sit him down and have a chill talk with him to find out what the

problem was. (Family B participant)

When it comes to the belief in vaccines from either parents or relatives has gone down

over the years. Since the findings that relate vaccines to Autism, e.g., the newspaper incident in

1998, have been overall confirmed to be false, (Holton, Weberling, Clarke, & Smith, 2012), the

family members have looked to other ways. More often than not, many of the parents have gone

to consult multiple doctors and to get multiple tests to find a solution to the problem or answers

as to why it exists (Call, et al., 2015). This relates to the idea that parents will go to multiple

doctors and treatments as mentioned by Family A, even though their overall knowledge of the

subject is minimal (Call, et al., 2015).

I did seek help for Jason. Over the years we went through the education system and got

him speech therapy. We also sent him to numerous doctors. We were young so we didn’t

know a whole lot about the treatments. (Family A participant)

Despite this, the interviews at least show that families that have an Autistic individual are

affected very much in areas such as the social life, but are nonetheless able to band together and

make the best of the situation.

Conclusion.

The overall perception of Autism Spectrum Disorders have been positively growing as

time marches on. With the advance of medical technology and growing sensitivity in society,

more people are doing their best to learn about Autism Spectrum Disorders so that they know

how to help those around them. In addition, it is true that families are largely affected by Autism


Spectrum Disorders and deal with stress due to many factors. Despite this, it is shown that at

least for some families, they can come together and live a happy life regardless.

We can assume that vaccines are not on the public's nor families’ mind in terms of the

cause, though the answer is still lost. Regardless, the future for Autistic individuals seems to be

growing strong as families become stronger and the public more aware of the signs so they can

be of help.


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http://www.ark.ac.uk/publications/updates/update84.pdf


Martin, D (2012). The Ever-Changing Social Perception of Autism Spectrum Disorders in the United States, Explorations, 7(0), 160-170. http://uncw.edu/csurf/Explorations/documents/DanielleMartin.pdf

Matthews, N., Ly, A., Goldberg W. (2015). College students' perceptions of peers with autism spectrum disorder. Journal of Autism & Developmental Disorders, 45(1), 90-99. doi:10.1007/s10803-014-2195-6

Potter, W. J. (2014). A Critical Analysis of Cultivation Theory. Journal Of Communication, 64(6), 1015-1036. doi:10.1111/jcom.12128

Pozo, P., Sarriá, E., & Brioso, A. (2014). Family quality of life and psychological well‐being in parents of children with autism spectrum disorders: A double ABCX model. Journal of Intellectual Disability Research, 58(5), 442-458. doi:10.1111/jir.12042

Prochnow, A. (2014). An analysis of autism through media representation. ETC: A Review of General Semantics, 71(2), 133-149. Retrieved from: http://eds.a.ebscohost.com/eds/detail/detail?vid=1&sid=2c201682-854b-44e8aaac621ab337a050%40sessionmgr4001&hid=4211&bdata=JnNpdGU9ZWRzLWxpdmU%3d#db=afh& A N=99149554

Sage, K. D., & Jegatheesan, B. (2010). Perceptions of siblings with autism and relationships with them: European American and Asian American siblings draw and tell. Journal of Intellectual & Developmental Disability, 35(2), 92-103. doi:10.3109/13668251003712788

Williams, K., Woolfenden, S., Roberts, J., Rodger, S., Bartak, L., Prior, M. (2014). Autism in context 1: Classification, counting and causes. Journal of Pediatrics & Child Health, 50(5), 335-340. doi:10.1111/jpc.12451

http://uncw.edu/csurf/Explorations/documents/DanielleMartin.pdf


Questions:

Parent Interview: Susann Mumm

1. What was your first reaction to hearing that your child had Autism Spectrum Disorders?

It was heart breaking. I broke down for a little while. Your dad was very helpful through the whole thing just being his positive self.

2. How did your friends and family react to the situation about your child?

They were all amazing. Every one of them. They all knew what to say and how to say it to give us, mostly me, the reassurance that I needed.

3. What questions did you ask your doctor after receiving the information?

I remember the first thing I asked was why him. And the answer “we don’t really know,” left a pretty sour taste in my mouth. All I wanted was for my son to live a normal life.

4. At any point did you think vaccines had anything to do with it?

Yes. Still yes. I think that they had everything to do with this. In my opinion, I think that the government isn’t going to tell us if the vaccines that they almost force people to get are causing kids to get autism. They aren’t going to tell us that 1/180 kids suffer from their mistake.

5. Did you seek professional help?

Yeah, we have him see a professional but now he just has some meds that he takes to help him.

6. What strengths do you see in your child which you are proud of?

Tanners 4.0 for sure. Having such good grades makes me so happy. It just makes me proud that he was able to find something that he can excel in so much.

7. How have your family life and social life changed since you became aware of this fact in your family?

Well it’s gotten a little more difficult. It was hard to make time in the beginning but now we got a pretty good grip on it.

8. Have you found any peace with your child’s condition?


Like most things in life, given the right amount of time and you’ll be able to get over it. I learned to accept that there isn’t anything we can do about it no matter how hard we want it.

9. Has the experience with your child helped you bond more as a family, or does it have the opposite effects?

I think so very much. I think that this has brought us together but we were already pretty close before I think.

10. Do you think your child will be able to live independently?

Oh no doubt. I think Tanner will be able to live by himself and live an almost completely normal life.

11. When trying to change certain behaviors, did you ever try to use tactics based on intentions. Such as getting the child to weigh pros and cons, influence from peers, or the factor of knowing your child can control that behavior.

I don’t know, when I wanted to change his behavior having a sit down conversation was the best way. Just talking worked better than scolding him.

12. How is your child at communicating with others? Do he/she have problems understanding the message and giving feedback to others?

Tanner communicates just like everyone else does it just takes him much longer to open up to people. He doesn’t particularly want to be with people, so he’ll stay locked up in his room for a majority of the day. I don’t think he has a problem communicating, but sometimes I think that he doesn’t listen that intensively.

Parent Questioner

I am …., please tell me your true thoughts on each question.

Parent: Regina Honke

All of the information we are talking about here will be kept entirely confidential. The purpose of the research project is….

Parent’s names: Regina Honke- I’ll not reveal your name in any circumstances.

1. What was your first reaction to hearing that your child had autism?

I cried. There was a little bit of fear because we did not know what Autism meant for us.



They were all very compassionate but also did not understand it that much.


We wanted to know how we can help Jason

Can we fix him?


Yeah, at some point I did.

Now days I believe that it is a false study and that vaccination theory has been disproven and is made up. Now I believe it is a number of factors.


I did seek help for Jason. Over the years we went through the education system and got him speech therapy. We also sent him to numerous doctors. We were young so we didn’t know a whole lot about the treatments.


I think that Jason is adaptable. I think that he is independent in safe areas. Jason has learned a lot and keeps learning all the time. He is very kind.

7. How has your family life and social life changed since you became aware of this fact in your family?

I think it made as a family much closer, we are more aware of what we do so that Jason stay s comfortable. I don’t has as much freedom as I used too. It can be a burden at times, but it’s something that needs to be accepted. Despite that, I am very happy and Jason is happy. My happiness is related to my children’s happiness.

8. Have you found peace in your child’s condition?

At this point yes.


I believe that the family is closer than ever.


10. Do you think you child can live independently?

No, Jason’s low mental ability means that he can’t live alone.


We also tried telling him and showing him examples from ourselves.


He does have problems understanding the message and giving back feedback. He does understand written language better than verbal. He doesn’t like interacting with people he doesn’t know but he can warm up to them. This applies to people that he works with and communicates to them by written and visual language. He communicates through software on his iPad. His initial comprehension is at 20 percent, but can go up with practice. However, he can't speak and form words properly due to his condition.

Parent Questioner



Parent’s names: Keith Honke, I’ll not reveal your name in any circumstances.

1. What was your first reaction to hearing that your child had Autism Spectrum Disorder?

I knew something was wrong. I was taken back when I was told that it could not be reversed.


They were sympathetic and supportive.


My question was “what can we do as parents to try to make Jason normal.”


Yes, at the beginning. We have heard that his immunization shot may have played a factor


Today, I guess I have been told that it has been proven that vaccines are not a contributing factor. But, I am still unsure personally because he started demonstrating Autistic behavior soon after he was given him immunization shot.


We have sought help for Jason and tried to improve his behaviors.


He is a very loving and gentle person. He also demonstrates that he is very smart in his own way.

7. How has your family life and social life changed since you became aware of this fact in your family?

We are closer as a family. It does limit my social life in what I can and can’t do. It has probably made us become more grounded. Grounded as in we have to stop and think before we do it. We have to always think about whether or not Jason can be a part of it or should Jason be watched over. We always had to be careful about where we take Jason.


Yes


We have come closer as a family.

10. Do you think your child can live independently?

No, he doesn’t have the mental fortitude for that.


I have tried telling him and showing him what needs to be done with his behavior?



He is not good verbally. He has understanding the message and can really only talk short and simply. I know that he is better at writing however.

Parent Interview: Bryan Mumm

1. What was your first reaction to hearing that your child had Autism Spectrum Disorders?

At first it was a difficult pill to swallow. Being a father to one son with autism know you knew

was going to struggle and have a few more difficulties isn’t something you ever want to hear

from a doctor.


Of course our family and friends accepted it and were extremely caring when they found out.

They all were there for us when and if we needed a single thing in a heartbeat.


For me it was the fact of accepting it. It was something that I almost refused to accept for a

while. I would constantly question their diagnosis and had a lot of tests done because I would

always question if they had made a mistake somehow.


In the beginning I might have thought that just because at this time there was a lot of hype

behind vaccinations being behind it. Since they have called those studies trash and said they were

very much wrong.


Yeah, we had a lot of different doctors try and diagnose and all of that.

6. What are the strengths of your child that you are proud of?

He’s always been smarter than most.


7. How have your family life and social life changed since you became aware of this fact in

your family?

I don’t think I can give a real answer to that one. I mean we had Jenna before but the second

round we had you and your brother at the same time. I mean twins definitely added a little more

stress than your sister did. And of course taking your brother to and from appointments was time

consuming, but I’ve always thought that you can make time for the stuff you want in your life

and if I wanted to see a friend I would. Just maybe a little bit later or a little bit more sporadically

than some people.


I think that I’ve learned to accept it. It’s something that after some time you just learn that there

isn’t any changing it and you live with it. He’s different from you or your sister but I love him all

the equally. He’s everything that other people are, just in his own different and corky way.

9. Has the experience with your child helped you bond more as a family, or does it have the

opposite effects?

I think that it’s helped us come together, don’t you? I mean I like to think that we have each

other’s backs a lot more than other families and that that will stay that way.

10. Do you think your child will be able to live independently?

I don’t doubt it for a second. I think he’ll find the right person and fall in love and live a pretty

normal life.

11. When trying to change certain behaviors, did you ever try to use tactics based on

intentions. Such as getting the child to weigh pros and cons, influence from peers, or the factor of

knowing your child can control that behavior.


We always tried to have a pretty relaxed way of raising him. If there was a problem we would

just kind of sit him down and have a chill talk with him to find out what the problem was.

12. How is your child at communicating with others? Do he/she have problems

understanding the message and giving feedback to others?

I think he does a great job considering the circumstances. He isn’t a huge fan of being around

people and he doesn’t think he needs to be at all. But he still communicates with his family and

his girlfriend very well.

Family Member interview sheet



Relative Interview: Loretta Rizzuti

1. What is it like having a relative that has an autistic family member?

It was unusual, in the beginning we didn’t know what was going to happen. We weren’t sure what the problem was. Once we found out we could figure out how to handle. Approaching Jason was the biggest problem. We have figured it out since then.

2. What do you think it is the hardest struggle for the family?

I would say it was leaving him alone. It is a struggle to see if he can be left alone or is always supervised. Deciding who is always home to be with Jason

3. What is your relationship with the autistic individual? How close are you two?

I am his Aunt on his Mother’s side. As for our closeness, it’s not as close as I would like. We live a distance away from each other, we always hug and kiss.

4. What was your reaction when you heard the family’s diagnosis of Autism Spectrum Disorders?

My first thought was “oh good lord, now what” and “why”. For the longest time, I thought if there was a special child in the family, he picked the most responsible family to have it in.


5. Have you helped the family or the autistic individual in any way during the years? If so, how?

Yes. When the family first moved to Butte, I came over to babysit Jason. Regina called and asked me to babysit. I have babysitter for the family many times.

6. What do you believe is the cause of Autism Spectrum Disorders?

I don’t know, I know some people think it’s related to vaccines but I don’t really know.

7. Do you believe in the correlation between vaccines and Autism Spectrum Disorders?

I do not believe in it.

.8. What is the impact of the child’s condition on the family?

Jason’s impact overall as seemed to have brought them closer together despite the challenges. I would think that they would have to be. I have even seen it.

9. How do the outside members (aunts, uncles, cousins, etc. etc.) act in regards to Autism Spectrum Disorders?

In the beginning, it was tough. There was no special treatment, everyone else treated him like everyone else. We didn’t want the other kids to see him getting special treatment. I know that members outside the family is amazed how he interacts with the family and that they are amazed at how aware he is of what is happening.

10. What is the strength of the Autistic individual? Does the family help the individual develop his/her special skills?

I would have to say that they do help his skills. Jason make some stuff for his mom from school. Anything he does with his hands are made very well. He is one of the smartest people I know. It’s just his communications and mental state is the hard part. Other than that, Jason excels a lot.

11. What do you perceive is the family’s biggest strength to deal with the challenges?

Their undying support of whatever is needed to be done to make Jason happy. This is in regards to his own education or venture into activities to make him happy.





Family Member names: Jenna Mumm, I’ll not reveal your name in any circumstances.


Well I mean having a brother with it can be a little exhausting. I remember when I was younger I would get annoyed by it and I would take it out on him but that’s something that I obviously can’t do. It’s not fair.


I don’t know if there’s anything that I can really pin point. I guess when he gets mad at us the fact that we can’t really lose it on him.


Well obviously I’m his sister. And I think we’re pretty close.

4. What was your reaction when you heard the family’s diagnosis of Autism?

I was so young that I don’t think I can even really remember it.


I would like to think that I have. I try to always be there for him if he needs to talk and stuff.

6. What do you believe is the cause of Autism?

I kind of think that it just happens. Like there really isn’t a certain thing that causes it.


7. Do you believe in the correlation between vaccines and autism?

I know mom stands pretty firm behind it but I don’t know if I do. I’ve never really looked into it that hard but I know the doctor who said that vaccines caused it had his studies thrown out so I don’t really think so.

8. What is the impact of the child’s condition on the family?

He really helped bring the family together even with the challenges.


They help at times but they tend to stay out of it.


For sure his strength is in his school work. He’s always out did us two.


Probably how close we are. We always help each other through anything that comes up.



Family Member names: Elizabeth Honke, I’ll not reveal your name in any circumstances.


It’s different. You never really know what to expect with him. He is not difficult but his inability

to talk can be frustrating



Being accepted. It’s easy for us for our immediate family. But outside the family people can

give Jason looks based on some of his interactions such as crying. Being accepted in public is the

hardest.


Jason and I are pretty close.

4. What was your reaction when you heard the family’s diagnosis of Autism Spectrum

Disorders?

I didn’t really understood what it was. I used to remember being told he was special. We were

young and I think our reactions were subjective because we were young.

5. Have you helped the family or the autistic individual in any way during the years? If so,

how?

I am his babysitter a good portion of the time. I help him get ready for school and other events.


I think it’s a mix of few things. Genetic predisposition in the family and the environment.


No. Like I said, it probably involves genetics. We have come a long way in health but

sometimes vaccines may have a reaction but we really are not sure.


He is never going to be independent. Until the parents can’t do anything, it will go into myself

and my brother. It has been hard but it’s a responsibility.

9. How do the outside members (aunts, uncles, cousins, etc. etc.) act in regards to Autism

Spectrum Disorders?


I think they are really open to it. Jason has changed a lot of people in our family and have

become more accepting of other people with disorders. I have multiple family members that have

been handicapped that didn’t have people around them but it is different with Jason

10. What is the strength of the Autistic individual? Does the family help the individual develop

his/her special skills?

Jason is really smart. He has a photographic memory, good with electronics, but it’s hard for us

to have him excel when he doesn’t want to. He has a different frame of mind such as watching

movies in different languages or messing with the VCR.

I think mom and dad do help him with those skills. But it’s a difficult challenge due to him not

really understanding what is going on.


I think we are all really close to each other. We always try to keep Jason in mind and putting his

needs before ours. We are also aware of this disorder and that helps us.



Family Member names: Shirley Lindeman, I’ll not reveal your name in any circumstances.


For me personally, it makes me want to know more about Autism. It’s so I could offer suggestions. I know that it is hard to deal with it at times. So I want to know more about it


The hardest struggle initially is believe that they did something wrong. We don’t know the causes, but it’s nothing they did. The other struggle is having other people comprehending what the family is going through and getting help.



I am Jason’s Aunt. I think we are close. I have stayed at his house many times and he acknowledges me. When I am there, I am downstairs a lot and he is comfortable around me.


At first I was saddened, I knew the struggle the family faced due to the Autistic students I had in my class. My initial response was that I was sad for the family member and the family


Yes. I have helped give moral support and give information to the family about autism


I think it’s a combination. Anything from the environment that they encounter. I also think things like shots at an early age might be too much. I think there is also some genetics


Yes I do. I remember when my daughter was working with a non-profit Autistic group and asked how many shots I gave her. She told me that if her child got 22 shots by the age of two according to her doctor, she was afraid the child might have autism.


It brought them closer together. Any time that a family deals with Autism it affects the whole family. Many things will be more difficult to do with an Autistic child, however, the time together is more valued. Going to church when he was younger was a challenge do to short attention and long sitting.



My brother Buddy, was physically disabled and we grew up helping him. When Jason was brought up, people always thought of him as another relative and has always helped him.


Jason is a very loving child. When he interacts with his family you can tell he is very attached to them. He is also not a violent child and the parents have done a nice job in making him obedient and friendly to others as well.


I think your families biggest strength is the support the family give Jason. The siblings are very supportive, and have done everything from babysitting to finding joy in Jason. The parents are also very supportive.



Family Member names: Kathy Rizzuti, I’ll not reveal your name in any circumstances.


It is a unique responsibility for the family. We always try to be aware of Jason’s needs and his surroundings.


The demand of their time and effort are probably the biggest problem. Jason always need someone to watch over him at least to my understanding.


I am not very close to Jason. He recognizes me but we don’t interact that often. We don’t see each other that often but I think we have a good relationship regardless.



The initial reaction was that of sadness, confusion on what might have triggered it. Empathy on mostly what their lifestyle was going to be like from here on out.


I don’t believe that I have helped them that much. I don’t really babysit that often.

But if the need arises I would love to help them more.


I don’t know. There are more cases now compared to years ago that there has to be something.

I used to think immunizations were a factor. But I don’t know if I believe it, it could be diet or environmental.

7. Do you believe in the correlation between vaccines and autism?

I used to but now I do not know.


I have seen negatives and positives. The time commitment on the parents have been hampered. That being said, I have seen your mother becoming far more caring and patient. The relationship between all the members are very close


I would say that we are standoffish. Not that we don’t care, but its complicated and we don’t know the full level of communication and we stay out of the conversation. But we do help when we can.


Jason’s strengths are his intelligence and gentle personality. I don’t really know how the family brings those qualities out from them.


The biggest strength is the time commitment. As time goes on, their free time grows larger and spend time taking care of Jason.

Survey Questions


1. How much do you know about Autism Spectrum Disorders?A lotNothingStill Learning

2. What do you think is the biggest challenge for a person that has an Autism Spectrum Disorder?Finding FriendsLiving IndependentlyObsessive Compulsive TendenciesI don’t knowOther (Please Specify

3. Do you believe that vaccines at an early age can cause Autism Spectrum Disorders?

YesNoI don’t know

4. If in the case the person is unhappy. What do you suggest would make a person diagnosed with Autism Spectrum Disorders happier in their life?

Friends and SupportA good doctorClose FamilyOther (please specify)

5. What signs of Autism Spectrum Disorders are you aware of?


VaccinesEnvironmental ProblemsBrain DisordersI don’t knowOther (please specify)

7. How well does the media portray Autism Spectrum Disorders or similar disorders?

8. Do you think the awareness of Autism Spectrum Disorders in the general public is rising?

Yes No


Consent Forms

Oral Consent Form

Participant Name: Bryan Mumm

Hello, I am asking for the consent of the individual who will participate in our study of the perception of Autism Spectrum Disorders.

The purpose of this study is to understand the social perception of Autism Spectrum Disorders, how it affects the family life, and the views on vaccines and their correlation to Autism Spectrum Disorders.

Should you choose to give consent, we will interview you via in person or on the phone various questions the concern autism. In order to protect your identity, we are giving you the option of changing your names as you wish.

If there are any questions that may seem uncomfortable to you, then we are able to skip that question or come up with a new one that can suit your needs.

If you choose to consent, then you will help us understand Autism Spectrum Disorders more.

Oral Consent Form

Participant Name: Regina Honke

Hello, I am asking for the consent of the individual who will participate in our study of the Autism Spectrum Disorders.






Oral Consent Form

Participant Name: Keith Honke

Hello, I am asking for the consent of the individual who will participate in our study about the effects of Autism Spectrum Disorders.





Oral Consent Form

Participant Name: Susan Mumm







Oral Consent Form

Participant Name: Loretta Rizzutti






Oral Consent Form

Participant Name: Kathy Gimer






Oral Consent Form


Participant Name: Shirley Lindeman






Oral Consent Form

Participant Name: Jenna Mumm






Oral Consent Form

Participant Name: Elizabeth Honke


autism spectrum disorders research paper

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