REVISED RESEARCH PROJECT: FALLING BETWEEN THE CRACKS 1

Revised Research Project: Falling Between the Cracks

Courtney Clark

University of California, Davis

Cover Letter
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I struggled more with the Wicked Problem Research Project in comparison with the

literacy narrative. First, I was more overwhelmed with the assignment because it required a

different type of research than I had performed before. I have always been heavily dependent on

google and resources that do not usually have one specific author. Through this research process,

I learned that these types of sources may not be as reliable. During the peer review process, I feel

like I did not receive as helpful suggestions as I did in comparison to my literacy narrative. This

may have been because I was more aware of the strengths and weaknesses of my narrative, so

when my peers constructively criticised weak points that I already acknowledged in my mind it

was easier to revise.

I organized my essay according to the structure we discussed in class because it clearly

separates main ideas so that an argument can be built on itself piece by piece. One of my

audience’s largest needs was an understanding of why I am unable to interview the subject

themselves, which I believe I addressed. In a different medium, I would have most likely felt

more pressured to use highly academic images or visuals to aid in maintaining the professionality

of a formal essay. However, this specific process has taught me that even if I do not know the

exact direction my essay is going, as long as I continually check that my work is meeting the

requirements and goals I set I can come to a comprehensive draft.

I revised the project using Gardening-Surgery and Grammar Blog activities. Physically

printing so many pages for the Gardening-Surgery activity and then cutting and taping them was

so time consuming that I was too stubborn to identify a “line of argument” that was completely

different than what I had originally created. With the grammar blog, I felt like it was not helpful

to the actual revision process because it only edited my grammar. I plan on using the other two

options, which I found helpful in previous revisions, before final submission of the project.
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The most helpful peer review comment was “In the literacy review part, you use a

resource about the autism’s mothers’ stress. It is better to choose other resource about the

autism’s educational opportunities since your research topic is not on the autism’s mother”. This

was helpful because it gave a concrete reason why my literature review seemed like it did not

flow well with the rest of the project. I tried to edit this by creating a more linear thought

process. I want to include parental aspects in my literature review, because they serve as my

primary sources for interviews. However, I am still willing to swap out this quote if it would

make my essay more effective.

I am not confident in the state of my paper, since it needs significant work changing the

literature review to flow better and potentially adding more of the results I found. Specifically I

would like you to provide feedback on my title, literature review, and results. I do not believe my

title is academic enough for the purpose of the assignment. I believe my literature review seems

a little out of place in comparison to the rest of the work, and I want to ensure that the data

presentation tools I used made sense. I appreciate the feedback!

Abstract

In this research project, I used both primary and secondary research in order to

investigate the educational opportunities available within the San Ramon Valley Unified School
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District (SRVUSD) to adults 22 years of age and older with moderate autism according to their

parents. By conducting two interviews and comparing and contrasting the information collected

to secondary sources, I presented data that supports the conclusion that within the SRVUSD,

parents believe there is a lack of appropriate educational opportunities for their adult autistic

child.

Introduction

A normal twenty two year old attends college. Meanwhile, a twenty two year old with

moderate autism graduates from a high school transition program. In a special needs classroom,

the majority of students perform at grade levels significantly lower than usual for their age level.
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A person with moderate autism encounters significant challenges in everyday life. For example,

an autistic individual may be nonverbal or unable to communicate basic needs, implying that he

or she is incapable of speaking on his or her own behalf. A lack of proper cognitive function also

contributes to an inability to learn and live independently, creating a cascade of issues that persist

into adulthood. One of the greatest difficulties is finding and enrolling in adequate adult

educational programs. An additional five hundred thousand children with autism will mature to

adulthood within the next decade; thus, the demand for viable education options will grow

(Monica 2015). The purpose of this research is to study what parents of moderately autistic

adults ages 22 years and older perceive as available educational opportunities within the school

district of their residence.

Literature Review

Age serves as a crippling limiting factor in special education. Starting at the age of 3 and

ending at the age of 21, students with disabilities are guaranteed a public education protected by

the Individuals with Disabilities Education Act, otherwise referred to as IDEA (Neuwirth 2003).

Sharyn Neuwirth (2003), author of multiple books about special education, also claims that after

turning 21, adults with disabilities lose rights under the IDEA and can experience a turbulent

time of “change to include work/study programs, job-related behavior training, and independent

living classes” (p. 33). These programs require bridging a gap between the community and

special needs classrooms. For example, students may work at a local store to gain knowledge of

the working world with the help of a classroom aide. Without careful planning, programs may

not offer many benefits to its students that require exceptional care and put additional stress on

the caretakers of the autistic adult. This caretaking responsibility usually falls on the parents,

more likely the mother, of the individual with autism.

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In a 2009 study published in the Journal of Autism and Developmental Disorders, social

scientist discovered that mothers of adults with autism have levels of the stress hormone “similar

to those found in combat soldiers and sufferers of post traumatic stress disorder” (Cottle). This

hints that the conditions of care, such as in an educational setting, for their child outside of their

own home may be insufficient. It could also reveal that the mothers have such a negative

associations with offered programs that it affects their own happiness. Davie (1995) confirmed

there is difficulty associated with planning for an autistic adult after they no longer are

guaranteed public education under IDEA. If autism scientists and experts recognize the struggle

of a lack of educational opportunities, it is possible that parents of adult children with autism

believe the same. A great worry can develop out of this issue: are parents able to find sufficient

resources to educate their adult child with moderate autism? This worry established the direction

of my research.

Research Question

According to parents, what educational opportunities are available to adults 22 years of

age and older with moderate autism within the San Ramon Valley Unified School District?

Method

In this case, the region of study was the San Ramon Valley Unified School District. I

conducted an over-the-phone interview with Elizabeth and an in-person interview with Stefanie.

I chose to interview the parents of autistic adults because they make the decisions about future

educational pursuits in which their child will partake. I chose my specific parent participants

based on familiarity and availability. The interviewees are both mothers of a son with moderate

autism. Below is a more complete description of the participants and their sons.
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Stefanie Stefanie previously worked as a medical claims specialist before becoming a

stay-at-home mother to her three children. Her only son, Lucas, was diagnosed with Fragile X

Syndrome and autism as a toddler. She lives in San Ramon, California, where she receives help

caring for Lucas from members of her immediate family.

Elizabeth Elizabeth is a political lobbyist who fights for the expansion of autism research

and awareness in Danville, California. Her son Alex is 23 years of age and higher functioning

within a classroom than most adults with moderate autism. He was diagnosed with autism when

he was 6 years old. Elizabeth juggles her political career and the constant care of her son.

After collecting the data, I compared and contrasted similar sets of phrases mentioned in

response to interview questions using a Venn Diagram. I used the same open ended questions to

ensure that the results could be comparable. From the interview questions I was able to gauge

and keep a tally of the general perceptions of the mothers with reference to educational

opportunity. If a comment was made in a negative tone or could be deemed as a complaint, I

recorded the response as negative. If a comment seemed hopeful or upbeat as a compliment, I

recorded the comment as a positive one. From this data I created a table and Venn Diagram to

organize information.

Results

Participant Negative Comments about Positive Comments about

Educational Opportunities Educational Opportunities

Stefanie 8 2

Elizabeth 7 4
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In summary, both mothers were overwhelmingly disappointed with the availability of

educational opportunities for their sons. In both cases, more negative comments were made in

reference to education for adults with special needs in comparison to positive comments. Despite

having multiple programs their child could attend within the SRVUSD, both mothers chose to

continue the education of their child outside of the district.

Discussion

Both Stefanie and Elizabeth highlight the difficulty of both finding and being accepted to

adult day programs. For example, Stefanie claimed “I will not let my son lose educational

ground by not receiving mental stimulation” during an emotional discussion about an adult with

moderate autism that remained on a waiting list for a program within the SRVUSD for two years

(Clark 2019). Instead of falling between the cracks to the same fate, both mothers chose to search

for and involve their sons in programs outside of the educational district in which they live. Their

need for proactivity supports the argument that the SRVUSD does not have sufficient educational

opportunity in the opinion of parents. Just like authors that study special education like Davie

and Cottle, the parents of adults with moderate autism like Stefanie and Elizabeth recognize the

lack of sufficient educational opportunities within most communities. Thus, both available

literature and primary sources reveal the seriousness of a lack of adult special education.

Conclusion

Parents act as accurate representatives of autistic children because they determine the

future educational pursuits of their child. They reinforce the established opinion that the

educational transition for moderately autistic adults after high school can be turbulent. The

limitations of this study include a small sample size and limited familial context. This is due to

only having enough time to conduct two interviews with a matriarch of a household affected by
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moderate autism. In the future, I would include more parents, especially fathers, since the only

primary sources of information were mothers with similar backgrounds and it would diversify

participation. It would be easier to reach more parents by conducting an online survey that I

would send through the Fragile X Research Foundation family database.

Results from primary sources, such as the mothers of Lucas and Alex, support a

conclusion that without sufficient educational infrastructure, moderately autistic adults would fall

between the cracks of the community. Individuals with moderate autism can thrive as they are

integrated into a community through an educational system that improves their own life, the lives

of their family members, and the lives of those in the community.

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References

Cottle, Michelle. (2012). WHEN LOVE IS NOT ENOUGH. Retrieved January 8, 2019, from

http://sks.sirs.com/cgi-bin/hst-article-display?id=ST135848-0-

9386&artno=0000340664&type=ART&shfilter=U&key=%22when%20love%20is%20not

%20enough%22&title=When%20Love%20Is%20Not

%20Enough&res=Y&ren=N&gov=N&lnk=N&ic=N

Clark, S. (2019, February 10). Personal Interview.

Davie, A. R. (1995). YOUNG ADULTS WITH LEARNING DISABILITIES AND OTHER

SPECIAL NEEDS. Retrieved February 16, 2019, from

https://www.heath.gwu.edu/sites/g/files/zaxdzs2346/f/downloads/young_adults_with_learning_d

isabilities_adn_other_special_needs.pdf

Monica, L. (2015, March 12). Personal interview.

Neuwirth, Sharyn. (2003). “Families and Fragile X Syndrome.” National Institute of Child

Health and Human Development (NICHD). Retrieved February 14, 2019, from

http://permanent.access.gpo.gov/lps37822/fragileX.pdf

Schwartz, E. (2019, February 9). Personal Interview.

Courtney, this is a decent start to this research paper, although it’s rather basic overall. I need to see
deeper discussion/connection to the established literature in the discussion and so what in the conclusion.
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The lit review needs more development too. Your discussion is quite basic at this point. You have some
organizational issues (unclear connections between ideas and missing topic sentences). Stronger, clearer
language would also help.