parent’s knowledge of autism

PARENT’S KNOWLEDGE OF AUTISM

Parent’s Knowledge of Autism

Courtney DeNicola

A Research Paper

Submitted to the Faculty of the Frances M. Maguire School of Nursing

Gwynedd Mercy University

Research Processes in Nursing Practice- Nursing 412

This study was completed through the use of simulation data and with a hypothetical setting.

Findings are not intended to change practice.

December 2016

Gwynedd Valley, PA

19437

Parent’s Knowledge i

Parent’s Knowledge

Abstract

The purpose of this descriptive research study is to identify and describe the general

knowledge that parents have of Autism Spectrum Disorder. A sample of 30 participants that have

at least one child was utilized. A ten item questionnaire was used to measure the knowledge that

parents have of facts, signs, and symptoms of Autism. Demographic information was obtained at

the end of the questionnaire as well. The questions were assigned one point for a correct answer

and zero points for an incorrect answer. A score of seven demonstrates average knowledge of

Autism. The mean score of the questionnaire was 8.1, showing that overall, parents of this

sample have an average knowledge of Autism. Out of the thirty participants, only two received a

score of below 7, indicating below average knowledge of Autism. Adequate knowledge of

Autism and the warning signs is crucial for early diagnosis. Early diagnosis of Autism can lead

to early intervention, which has shown the best outcomes for children diagnosed with the

disorder. This study shows that parents have an adequate knowledge of Autism, and may be able

to benefit from more in depth teaching by nurses.

Keywords: Autism, parent’s, questionnaire, descriptive research

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Table of Contents

Table of Contents

Title Page iAbstract iiTable of Contents iii

List of Tables ivList of Figuresv

Chapter One: The Conceptual Phase 1Introduction1Statement of the Problem 1Review of Literature 1Conceptual Framework 6Statement of Purpose 6Definition of Terms 6

Chapter Two: Methodology 8Research Approach/Technique for Data Collection 8Study Subjects/Setting Description 8Procedures 8Limitations 9

Chapter Three: Presentation of Data 10

Chapter Four: Discussion 14Conclusions14Limitations 14Recommendations 15Implications 16Translation into Nursing Practice 16

References 18Bibliography 20

Appendix A: Questionnaire 21Appendix B: Permission Letter 24Appendix C: Cover Letter 25

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List of Tables

Table 1: Average Scores by Age Category 11Table 2: Average Scores by Experience with Autism 12

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List of Figures

Figure 1: Ethnicity of Participants involved in study 11Figure 2: Variation of Scores by Knowledge Influence of Autism 13

v

PARENT’S KNOWLEDGE OF AUTISM

Chapter 1

Introduction

There have been numerous studies regarding early diagnosis and intervention in autistic

children as the most important part of treatment. Early intervention allows for proper support and

treatment to take place as soon as possible to avoid or lessen effects of a developmental or

intellectual disability. According to the Center of Disease Control, the prevalence of Autism in

children in the United States has increased by 119% from 2000-2010 (CDC 2016). Additionally,

the cost of lifelong care of a person with Autism can be reduced by two-thirds with early

diagnosis and intervention (National Autism Network 2016). Since most parents interact with

and care for their children more than anyone else, parents should be well versed on early signs

and symptoms of a developmental disability, such as autism. Parents can relay their observations

to their primary care providers, who can then recommend treatment and support to limit the

problem. Nurses have the potential to be exposed to autism when caring for patients in the

hospital, primary, or school setting. If nurses are able to teach parents about signs and symptoms

to be aware of, then parents may be more motivated to reach out for help to prevent chronic

problems with their child. Since the prevalence of Autism is rapidly increasing by 6-15% each

year, the chances of encountering a child with Autism are much more likely (CDC 2016).

Statement of Problem

What are parent’s knowledge of Autism Spectrum Disorder?

Review of Literature

There are a number of studies published in recent years that relate to developmental

disabilities and early detection. There are few that go in depth regarding the average parents’

Parent’s Knowledge 1


knowledge of early signs of a disability. Nonetheless, the following articles all contribute

valuable information that can be of importance to this research study.

One study discusses and investigates the development and feasibility of a structured

interview to be used to assess both parenting and developmental problems in children. The study

implements and examines the validity of the use of an instrument for early detection and

assessment of problems in toddlers that uses the perspectives and experiences of the parents as

well as the professional (Staal, van den Brink, Hermanns, Schrijvers, & Stel 2011). The

instrument, developed with an expert group of experienced nurses, examined twelve areas of

parent and child development using a structured interview with the parents. The areas examined

ranged from infancy review, motor, speech, language, and thought development, behavior,

parenting approach, early education, how the child spends their time, living environment, social

contacts, family issues, and an opportunity to discuss anything not mentioned during the

interview. The instrument first detected problems and concerns. Then, the researchers clarified

and determined the seriousness of the problems. Finally, the problems were analyzed and a plan

to address them was devised. The parents of 1000 toddlers were interviewed by a group of

trained nurses. The researchers’ goal was to develop a tool to identify problems and were

successful in doing so. They were able to obtain quality information from parents that could lead

to a conversation about the possibility of a developmental delay. They found that the topics with

the highest level of support needed were family issues, living environment, motor development,

and day care (Staal et al 2011). From this information collected by the health care providers,

83% of parents followed-up with their nurses. The researchers determined this instrument could

be useful for early detection of parenting and developmental problems in toddlers, but needs

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further studies to determine validity and reliability. This tool, if valid and reliable, could be

extremely useful in helping identify the earliest signs of autism for early intervention.

Another study explored barriers to early intervention evaluations among referred infants

and toddlers. The method of data collection used was semi-structured interviews with parents of

children referred for early intervention services (Jimenez, Barg, Guevara, Gerdes, & Fiks 2012).

The researchers used an interview guide developed from literature reviews and consultations

with pediatricians, developmental psychologists, early intervention employees, and experts in

qualitative research. They used open ended questions regarding their child’s learning and

development. The researchers found five primary themes: parents reported communication

problems with their pediatrician, parents saw themselves as experts on their child’s development

and chose not to pursue services, families preferred to wait for the concern to resolve or work

with their child themselves, practical obstacles limited the completion of the evaluation, or early

intervention employees felt the parents avoided the evaluation because they mistook them for

child protective services. This study does show some causation as to why a referral would not be

followed up, which is helpful information for healthcare professionals. If a nurse can understand

why a family may neglect to follow up with an early intervention, they may be able to

compromise or work with that family to get the child resources.

Another study aimed to identify parent, child, community, and health care provider

characteristics associated with early intervention referral and multidisciplinary evaluation by

early intervention (Jimenez, Fiks, Ramirez Shah, Gerdes, Ni, Pati, & Guervara 2014). The

problem these researchers focused on was the fact that while children are being identified with a

developmental concern, only a small percentage were actually being referred for early

intervention. The method for data collection was from a secondary data analysis and qualitative

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interviews. The secondary analysis was conducted from the Translating Evidence Based

Developmental Screening (TEDS) study, which tested the effectiveness of developmental

screening protocols. The interviews were conducted with the physicians who participated in that

study. The results of the data analysis showed that of a total of 2083 families who participated in

the TEDS study, 21% were identified with a developmental concern, but only 58% of that

number were referred to early intervention. The qualitative interviews showed common themes

among the pediatricians: office processes played an important role in facilitating the screenings

and referrals, family preference may discourage or promote the referral, and providers may defer

a referral if they thought the parents misunderstood a screening question. The researchers

determined that many children who were positively screened for a developmental concern were

not referred to early intervention for a variety of reasons. The researchers cannot assume

causation, but their findings open doors to other researchers to look into further understanding

the causes for these deferrals.

Another study, “Assessing early communication skills at 12 months: a retrospective study

of Autism Spectrum Disorder”, written by Swain, Eadie, Prior, & Reilly, aimed to investigate if

differences in early social communication skills could be detected at twelve months of age,

compared to children who were later diagnosed with Autism Spectrum Disorder, and to

determine whether differences remain when groupings are based on age and subsequent Autism

diagnosis (2015). The researchers collected data on children in early life, and then conducted

retrospective analyses for the children who were later diagnosed with Autism by age seven. They

used the Communication and Symbolic Behavior Scales- Developmental Profile Behavior

Sample when the participants were twelve months of age. This tool is a face-to-face evaluation

with the child and parent, which is videotaped and analyzed (Swain et al 2015). The researchers

4


found that there were clear differences in the abilities of twelve month old children later

diagnosed with Autism compared to a control group in social communication skills (Swain et al

2015). This study shows that there is reliable evidence of the importance of social

communication skills for the early detection of Autism. This is useful information for both

parents and healthcare professionals. If a parent or nurse was able to identify a symptom as early

as one-year-old, that could lead to a diagnosis and allow for timely early intervention.

One nurse performed a study interviewing a variety of nurses regarding their particular

professional contribution to the assessment of pre-school children for autism. The researcher

used written reflective accounts and transcripts from one-to-one interviews about their practice

as a method of data collection. To begin, each participant wrote an account of a time in their

practice that they contributed to an assessment of a child for autism. Then, those accounts were

reflected upon with the researcher in a discussion, where the researcher could ask questions and

gain an understanding of their feelings. The final phase included a discussion with a group of

participants, where they reflected on their actions and how they were influenced in the context of

their practice. The researcher found that the participants shared certain beliefs and values that

influenced their practice. First, they believed autism is real: meaning, they believe it is a medical

condition with a biomedical cause, not a “socially defined construct” (Halpin 2016). They also

believed the notion that “parents want perfect”, in that parents perceive that any kind of disability

as undesirable, but the nurses also noted they have empathy for the emotional distress the parents

go through (Halpin 2016). Nurses also stated that they believe that their knowledge and practical

expertise can serve as a great resource for parents, but acknowledge that parents know their

children best. The participants described nursing as “key” to the child’s care because the care is

holistic. The nurses value knowledge development, the nurse-patient relationship, and the

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parent’s views when caring for the child. The most common notion was that holistic care is

important because it provides the most well-rounded care for the child. This study is similar to

the research question purposed in the purpose of this paper, only questioning parents on their

knowledge of autism.

Conceptual Framework

The concept behind this study is that early diagnosis and intervention of children with

Autism leads to better outcomes. Many studies have been conducted that test the effectiveness of

early intervention in children with Autism. In these studies, the interventions almost always yield

positive results in the improvement of the child’s social and communication skills. If a child is

diagnosed at an early age with autism, special initiative can be taken to enroll the child in an

early intervention program to improve the outcome. Some children with Asperger’s syndrome, a

variant of autism spectrum disorder, can go on to live normal lives if they have the proper

resources during their childhood. On the other hand, some children will regress and lose any

skills they once had if they do not receive prompt and proper intervention. If parents have

knowledge of autism and early symptoms, they may be able to refer their child for an early

diagnosis if they believe there is a problem.

Statement of Purpose

The purpose of this research study is describe of the knowledge parents have of Autism

Spectrum Disorder.

Definition of Terms

a. Early signs and symptoms: Includes inability to point to show interest, does not look at

objects when another person points at them, avoiding eye contact, dislikes being held or

cuddled, unaware when someone talks to them, inability to communicate, play, and relate

6


to others, repeats or echo’s works or phrases, will not play pretend games, repeats actions

over and over, trouble adapting to a new routine, unusual reactions to smell, taste, feel,

sound

b. Autism Spectrum Disorder: According to the CDC, autism is “a developmental disability

that can cause significant social, communication and behavioral challenges” (2016).

c. Early Intervention: As simple as talking to the primary healthcare provider, seeing a

developmental pediatrician, neurologist, or psychologist, enrolling in special classes for

school aged children, support/parenting groups, and most importantly good parenting

techniques.

d. Parent: a father or mother; person who cares for a child

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Chapter 2

Research Approach/Technique for Data Collection

The study used a descriptive research approach with a questionnaire. The questionnaire

(Refer to Appendix A) included a section of multiple choice questions to test knowledge of

autism. The questionnaire also included a demographic section. The participants were asked if

they were a parent, their age, their ethnicity, if they had a child with autism or had ever

interacted with a child with Autism, and what most greatly influenced their knowledge about the

disorder. The results of the questionnaire were then interpreted to conclude the level of

knowledge parents have regarding Autism. A score of 7 out of 10 indicated average knowledge

of Autism. Scores of parents of children with autism and parents without were also compared.

Study Subjects/Setting Description

A convenience sample was utilized for this study. The study subjects ranged in age from

under 24 to 55-64 years. The study was conducted online using Google Forms. The subjects

studied were parents of children in a local, suburban elementary school. The target population

were parents with at least one child.

Procedures

Permission to perform this study was granted by the International Review Board (IRB). A

letter of permission (Refer to Appendix B) and a copy of the cover letter (Refer to Appendix C).

explaining the purpose of this study were sent to the suburban elementary school’s principal. The

principal granted permission to perform this study. The cover letter was also given to parents

participating in the study informing them of the procedure. (Refer to Appendix C). The

questionnaire was sent to a large local elementary school to parents via e-mail. The participants

were asked to voluntarily participant in the study. They were informed that by participating, they

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agree to do so voluntarily and answer all questions to the best of their ability. The school sent out

an email with a link to the questionnaire to 100 parents at random. The participants filled out the

questionnaire via Google Forms at their convenience, and submitted it for the researcher to

analyze. Each knowledge based question was given a score of 0 or 1, based on if it was answered

correctly. The highest potential score was a 10, and the lowest a 0. A score of above a 7 and

above indicated average knowledge of autism.

Limitations

The limitations of the questionnaire include limited time to carry out the study, a small

sample size, a low return rate, inexperience of the researcher, and the use of a new questionnaire

tool. A greater time allotted may have yielded a higher return rate and greater sample size. A

greater sample size would allow for more generalizability. The questionnaire developed by the

researcher was never used before and lacked reliability and validity.

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Chapter 3

Presentation of Data

The aim of this research study was to identify the knowledge of parents regarding autism.

The sample was composed of 30 parents from a local elementary school. The parents were

emailed an online questionnaire and asked to voluntarily complete the questionnaire. Of 100

parents that were randomly sent the survey, 30 completed it, giving the research study a 30%

return rate. The questionnaire contained ten knowledge based questions and six demographic

questions. The demographic questions asked whether or not the participant was a parent, their

age, whether they have a child with Autism, whether they have interacted with a child with

Autism, their ethnicity, and what they feel most greatly has influenced their knowledge of

Autism.

The researcher determined that a score of 7 or above indicated an adequate knowledge of

Autism. The participants scores ranged from 6 to 10, with an average score of 8.1 out of 10.

100% of participants stated they were parents. Of the parents that responded, four were

under the age of 24, six were 25-34 years old, eight were 35-44 years old, seven were 45-54

years old, and five were 55-64 years old. No participants were over the age of 65. As shown in

Table 1, the 35-44 age category scored highest with a score of 8.6 on average. The lowest

scoring age category was under 24 with a score of 6.

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Table 1: Average Scores by Age Category

Age Category Average Score

Under 24 6

25-34 7

35-44 8.6

45-54 7.25

55-64 7.5

The majority of participants were Caucasian, as identified in Figure 1. 93.3% of

participants identified as Caucasian, with the remaining 6.7% identifying as African American.

Caucasian participants had an average score of 8.1 and African American participants had an

average score of 8.0, which shows no real variance of knowledge between the two races in this

sample.

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Ethnicity of Participants

Caucasian African American

Figure 1: Ethnicity of Participants involved in study

All but one parent stated that they did not have a child diagnosed with Autism. The score

of the parent with a child with Autism was 9, while those without scored an average of 8.1. Both

groups still have sufficient knowledge by the researcher’s term, but the parent with a child with

Autism did score slightly higher. 73.3% of parents stated that they had interacted with a child

with Autism before, while 26.7% said they did not. As shown in Table 2, the scores did not vary

significantly.

Table 2: Average Scores by Experience with Autism

Category Average Score

Parent has interacted with child with Autism 7.6

Parent has never interacted with child with

Autism

7.3

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The researcher’s final demographic question asked what the participant felt had the

greatest influence on of their knowledge of autism. The majority of respondents stated that word

of mouth by family and friends was the greatest influence of their knowledge of autism. 26.7%

replied formal education, 13.3% replied social media, and 13.3% replied television. As shown in

Figure 2, there was a slight variation between the groups. Those who said word of mouth from

family and friends influenced their knowledge had an average score of 8, and those who said that

formal education influenced their knowledge had a score of 7.8. Those who said social media

influenced their knowledge had an average score of 6.2, which was deemed insufficient by the

researcher’s standard.

Television Social Media Formal Education Word of Mouth 0

1

2

3

4

5

6

7

8

9

Knowledge Influence of Autism

Figure 2: Variation of Scores by Knowledge Influence of Autism

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Chapter 4

Conclusions

The purpose of this study was to determine parent’s knowledge of autism. Based on the

analysis of the data from this study and sample, the following conclusions were made:

1. Overall, parents have adequate knowledge of autism.

2. Parents under the age of 24 do not have adequate knowledge of autism.

3. There is no significant variance of scores among different ethnicity groups.

4. Parents of children with autism have a greater knowledge of those without.

5. Parents who interact with children with autism have a slightly higher knowledge of

autism.

6. Parents who allow social media to influence their knowledge of autism have insufficient

knowledge of the disorder.

Limitations

Several limitations can be identified in this study. The first limitation is the small sample

size. Only thirty participants were used to describe a large population. The second limitation was

that the questionnaire was online, so it is possible that not every participant had access to the

internet to complete it. The participant could have been distracted when completing the study as

well since it was done at their convenience. The third limitation was the use of the questionnaire.

Questionnaires lack validity and reliability. Another limitation is the researcher’s inexperience

with questionnaires and research studies. Finally, time constraint was identified as a limitation,

due to only having 3 months to complete the entire study.

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Recommendations

Ongoing research is needed to indicate the validity of these results. Given the

interpretations, the researcher suggests that the study should be replicated, with a different group

of questions. Another questionnaire with more in-depth questions may elicit a different response.

The questionnaire used in this study only discussed broad, generalized questions related to

autism. Incorporating questions about new research theories, different types of interventions, and

specific diagnostic criteria, for example, may affect the scores. This will also further assess

knowledge of parents.

The sample size should also be increased. This study only had thirty participants to

represent a large population. Having a sample size of 100 or more participants would most likely

show a more valid indication of parent’s knowledge of Autism. Future studies should also

incorporate and encourage more diversity. A large majority of participants were Caucasian, and

only two of the thirty were African American. A more diverse population could potentially show

differences of scores among ethnic groups, since different cultures are known to have different

views on disorders such as autism. The sample used in this study was also of parents with

elementary school-aged children. Future studies in different settings, such as middle or high

school, could elicit different responses.

Using a different tool or research method in the future could also unveil more information

about parent’s knowledge of Autism. Many studies discussed, including one performed by

Jimenez, Barg, Guevara, Gerdes, & Fiks in 2012, used semi-structured interviews to collect data.

Using a guide with open-ended questions that allows for parents to explain their views and

beliefs on different topics related to autism may show more insight about their knowledge level.

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Implications

Nursing Education

Studies show that early detection of symptoms and early diagnosis is key in successful

treatment of Autism. Nursing education should stress the importance of developmental

milestones, as the inability of a child to reach a milestone could be a symptom of autism. During

a nursing student’s pediatric rotation, they should practice observing patients in the clinical

setting to determine if the child has reached a milestone for their age. They should be given the

opportunity to practice with a screening tool as well, ideally in a primary care setting.

Nursing Practice

If the results of the study were accepted, this study shows there is room for teaching for

parents about Autism. While the overall score was deemed sufficient by the researcher, it was

not a perfect score. Nurses have a responsibility to teach and educate patients. While nurses

assess the child in the doctor’s office or hospital setting, they could educate the parents about

warning signs for autism, as well as explain some facts they may not already know. They may

give examples of milestones the child should be reaching and when to call the pediatrician for an

opinion or screening. Teaching parents about autism before the child is diagnosed could be key

in an early diagnosis. Usually, parents are with their child more than anyone else. If a parent is

aware of what milestones should be reached and can identify warning signs, they may be able to

receive early intervention for their child and prevent impaired functioning.

Translation into Nursing Practice

The researcher will present the research study and its findings at the Gwynedd Mercy

University Senior Research Day held on November 30th. The results of the study will be

discussed with peers and professors, as well as various other members of the nursing and

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university community. Returning the questionnaire with an answer key to the original

participants would also provide an opportunity for them to see which questions were incorrect

and learn any mistakes or misconceptions. Fact sheets or check lists with different milestones

according to age groups may also be useful for parents. These would be discussed and distributed

at doctor’s offices during visits. As mentioned, the overall score identified adequate knowledge

among this group of parents, but there was still room for improvement, so teaching is necessary.

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References

Autism Society. (2016). Facts and Statistics. Retrieved from: http://www.autism-

society.org/what-is/facts-and-statistics/

Center for Disease Control and Prevention. (2016). Developmental Milestones. Retrieved from:

http://www.cdc.gov/ncbddd/actearly/milestones/

Center for Disease Control and Prevention (CDC). (2016). Facts About Developmental

Disabilities. Retrieved from:

https://www.cdc.gov/ncbddd/developmentaldisabilities/facts.html

Halpin, J. (2016). What do nurses think they are doing in pre-school autism assessment? British

Journal of Nursing, 25(6), 319-323.

Jimenez, M. E., Fiks, A. G., Ramirez Shah, L., Gerdes, M., Ni, A. Y., Pati, S., & Guevara, J. P.

(2014). Factors Associated with Early Intervention Referral and Evaluation: A Mixed

Methods Analysis. Academic Pediatrics, 14(3), 315-323.

Jimenez, M. E., Barg, F. K., Guevara, J. P., Gerdes, M., & Fiks, A. G. (2012). Barriers to

Evaluation for Early Intervention Services: Parent and Early Intervention Employee

Perspectives. Academic Pediatrics, 12(6), 551-557.

National Autism Network. (2016). The Importance of Early Intervention for Autism. Retrieved

from: http://nationalautismnetwork.com/about-autism/autism-treatments/early-

intervention.html

Staal, I. E., van den Brink, H. G., Hermanns, J. A., Schrijvers, A. P., & van Stel, H. F. (2011).

Assessment of parenting and developmental problems in toddlers: development and

feasibility of a structured interview. Child: Care, Health & Development, 37(4), 503-511.

doi:10.1111/j.1365-2214.2011.01228.x

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Swain, N. R., Eadie, P. A., Prior, M. R., & Reilly, S. (2015). Assessing early communication

skills at 12 months: a retrospective study of Autism Spectrum Disorder. International

Journal Of Language & Communication Disorders, 50(4), 488-498. doi:10.1111/1460-

6984.12150

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Bibliography

Novak, C., Lingam, R., Coad, J., & Emond, A. (2012). 'Providing more scaffolding': parenting a

child with developmental co-ordination disorder, a hidden disability. Child: Care, Health

& Development, 38(6), 829-835. doi:10.1111/j.1365-2214.2011.01302.x

Wankoff, L. S. (2011). Warning Signs in the Development of Speech, Language, and

Communication: When to Refer to a Speech-Language Pathologist. Journal Of Child &

Adolescent Psychiatric Nursing, 24(3), 175-184. doi:10.1111/j.1744-6171.2011.00292.x

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Appendix A: Questionnaire

Autism Knowledge Questionnaire

InstructionsPlease select the best answer, to the best of your knowledge. Circle the letter that

corresponds with your answer. Please answer questions truthfully, without researching any information.

Percentages to the right of each question reflect the number of participants that answered the question correctly. Correct answers are bolded.

Questions

1. Which of the following is an example of an early sign that may indicate Autism? 96.7%A. Baby does not respond to their name by 12 months of ageB. Baby waves to family membersC. Baby becomes excited when a stranger enters the room D. Baby throws toys across the room

2. Of the following factors, which is the most common link to Autism? 62.1%A. Receiving vaccinations at a young ageB. Certain genetic conditions C. Asian ethnicityD. Being born a twin

3. Which of the following is the best definition of Autism? 93.3%A. A problem where the child does not have the ability to focus.B. A developmental disability that can cause significant social, communication, and

behavioral challenges.C. A disorder where the child does not achieve a normal rate in height or weight.D. A developmental disability caused by a combination of genetics and poor parenting.

4. How early can interventions begin in a child who shows signs of Autism? 86.7%A. 5 years old.B. 3 years old.C. When the parent deems necessaryD. As soon as the child is diagnosed

5. What is the best action for a parent to take if they feel their child is displaying an early symptom of Autism? 83.3%

A. Take the child to the Emergency RoomB. Mention it at the child’s next well visitC. Contact your doctor as soon as possible and schedule a screening testD. No action is needed.

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6. When does the American Academy of Pediatrics recommend children be screened for developmental delays and disabilities? 60%A. Ages 9 months, 18 months, and 24 months.B. Birth, once they begin preschool, and once they begin first gradeC. Every well visitD. Screening is only necessary if the child has a high risk factor

7. Which statement is true? 56.7%A. Autism Spectrum Disorder is 4.5 times more common in boys than girlsB. Autism Spectrum Disorder is 2 times more common in girls than boys.C. Autism Spectrum Disorder is more common in families with a history of cancerD. Autism Spectrum Disorder is just as common in boys as it is girls.

8. Which of the following is (potentially) NOT a sign or symptom of Autism? 83.3%A. A one-year-old child is shy and nervous around strangersB. A four-year-old child does not understand “same” and “different”C. A five-year-old child cannot brush their teeth, wash their hands, or get undressed

without helpD. A four-month old baby doesn’t smile at people

9. Which, of the following, is a potential sign of Autism? 93.3%A. Child plays “pretend” gamesB. Child does not point at an object to show interest C. Child enjoys hugs from parentsD. Child is social with new people

10. Which best describes a child with Autism? 93.3%A. A young boy has poor handwritingB. A young boy cleans up his toys after playingC. A young girl “tests” her parents by not following their directionsD. A school aged girl has trouble forming complete thoughts and sentences

Demographics

Are you a parent of at least one child?

____ Yes ____ No

Please identify which age category you fall into.A. Under 24 yearsB. 25-34 yearsC. 35-44 yearsD. 45-54 years E. 55-65 years

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F. older than 65

Has/have any of your children been diagnosed with any form of Autism Spectrum Disorder?____ Yes____ No

Have you ever interacted with a child with any form of Autism Spectrum Disorder?____ Yes____ No

Which ethnicity do you most identify with?A. CaucasianB. AsianC. African AmericanD. Middle EasternE. Other (Please Specify): ________

Which of the following has most greatly influenced your knowledge of Autism Spectrum Disorder?

A. TelevisionB. Social MediaC. Formal Education (school)D. Word of Mouth from family and friendsE. Other (Please specify): ________

By submitting this questionnaire, you attest that you have answered the above questions truthfully and to the best of your knowledge, and are voluntarily and anonymously participating in this study.

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Appendix B: Permission Letter

205 Maplewood DrivePhoenixville PA, 19460

October 18, 2016

Dear Principal:

I am a registered nurse currently enrolled in Gwynedd Mercy University’s Bachelor of Science in Nursing program. To fulfill the requirements for my course, Research Processes in Nursing Practice, I must carry out a limited descriptive research project. I would like to conduct this study at your elementary school.

The purpose of my research study is to determine the knowledge of parents regarding Autism. In order to achieve this purpose, I plan to use a descriptive research approach. A short questionnaire would be sent out via email to parents of children in the school to complete voluntarily. I would like to collect data and send out the email on November 5th.

All information will remain confidential and all participants anonymous. A summary of the research findings will be made available to you upon completion of the study.

Enclosed is a copy of the cover letter and questionnaire I plan to use. Also enclosed is a card for you to indicate permission to conduct this study.

Thank you for your consideration.

Sincerely,

Courtney DeNicola, RN610-724-2245

[email protected]

Enclosures

Dear Courtney:

_______ Permission has been granted to proceed with your research

_______ Permission has not been granted to proceed with your research

Signature

Title

Date

Appendix C: Cover Letter

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mailto:[email protected]


Dear Participant,

As part of my Research Processes in Nursing Practice course at Gwynedd Mercy

University, I must carry out a limited research study. The purpose of my study is to assess the

knowledge parents have of Autism.

I would appreciate your participation in this study if you are a parent. Participation is

voluntary. This questionnaire should take less than ten minutes to complete. It consists of ten

knowledge-based questions about Autism, followed by 6 demographic questions. All information

is confidential and anonymous. By completing the questionnaire, you give permission and

consent to be a part of this study. Please answer the questions to the best of your knowledge.

Sincerely,

Courtney DeNicola, RN

Gwynedd Mercy University

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parent’s knowledge of autism

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