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Sarah Giovagnoli
IDS-400 Diversity
7-1 Final Project
Southern New Hampshire University
Professor Paul Anderson
February 25, 2024
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Topic: Autism Spectrum Disorder
As a mother to a thirty-three year old son on the spectrum, the topic I have chosen for my
project is Autism Spectrum Disorder. Specifically, I would like to explore the resources and
opportunities for individuals on the spectrum, as I am sure they have changed since my son was
first diagnosed. I would also like to focus on society promoting inclusion and diversity with the
culture. “Autism spectrum disorder (ASD) is a neurological and developmental disorder that
affects how people interact with others, communicate, learn, and behave. Although autism can
be diagnosed at any age, it is described as a developmental disorder because symptoms generally
appear in the first two years of life” (N.I.H., 2023). Individuals on the spectrum face disparities
and stigmas all the time. Due to the misconceptions about autism, often times neurotypical
adults are less willing to engage with autistic adults during a first meeting. The lack of
information and education on ASD is a major part of the reason for the disconnect this group of
individuals has within society.
Population
According to the Centers for Disease Control and Prevention “1 in 36 children have been
identified with autism spectrum disorder (ASD). ASD is reported to effect all racial, ethnic, and
socioeconomic groups. Autism spectrum disorder is nearly four times more common in boys
than in girls” (2023). These numbers have drastically changed over the last twenty years as the
number of individuals diagnosed with ASD continues to grow. Autism is also known as a
“spectrum” disorder as there is a wide variation in the types and severity of symptoms that
people experience (N.I.H., 2023).
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Lives and Experiences
There is no cure for autism and that is okay, it is something that does not need a cure.
Individuals with autism are just being who they are and seeing the world through their
perspective. Although there definitely can be challenges with being on the spectrum. “One of
the main symptoms for individuals with autism is an inability to process all the different sensory
inputs in their environment” (Szczerba, 2016). Different sounds, sights, touch, and even smells
can affect someone with autism differently than they might affect others. I remember my son,
when he was a toddler, not being able to go into the grocery store because the lights would hurt
his ears. At the time we did not know that was what was making him tantrum but soon realized
after he was diagnosed and we learned more about his diagnosis.
Many people with autism also feel like they need to hide their true selves from the world.
Known as masking, autistic individuals often feel like they need to pretend to be who others
want them to be (Lee, 2019). Often time’s individuals with autism will feel alone, shunned by
society and misunderstood. This is not the case with all autistic individuals but more so than not.
Trisha Van Berkel states, “Autism is about having a pure heart and being very sensitive . . . It is
about finding a way to survive in an overwhelming, confusing world . . . . It is about developing
differently, in a different pace, and with different leaps” (Martin, n.d.).
Social Science
I chose the Social Science lens because I feel like too many times society tries to change
a person with autism and make them fit into what society considers normal instead of being
accepted for the person they are. According to Aylward, et.al., (2021), “discrimination, fear of
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stigma and uncertainty regarding the diagnostic process and services also continue to negatively
affect the receipt of early diagnosis and intervention.” How people are treated, looked at, and the
expectations that are put on them matter. In order to change the stigma, we first need to
understand the stigma. Is it fear? Fear or the unknown or fear of change? Fear can make
society stigmatize groups of people before they learn the facts. According to Hurley-Hanson,
et.al., (2020), “The stigma of individuals with ASD is unique from the stigma felt by individuals
with other disabilities. This is because autism is considered an invisible disability.” People
cannot put a face to what autism is supposed to look like. Society needs to understand the needs
of individuals on the spectrum and education is the key to this understanding.
Thesis Statement
Autism spectrum disorder (ASD) is a community of neurodivergent individuals that is
numbers have dramatically increased over the last twenty years. This trend will continue to rise.
Social changes need to be made to the stigmas that society has placed against this community of
disabled individuals. Education and early intervention are key for both the ASD community and
society in general.
Constructively Collaborate
According to the Centers for Disease Control and Prevention (2023), “As of 2020, one in
thirty-six children have been identified with Autism Spectrum Disorder (ASD).” With ASD
being reported to occur in all racial, ethnic, and socioeconomic groups, this continues to be a
large population that we need to learn how to collaborate with in a constructive manner.
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The best way to start this conversation would be first to understand the correct
terminology that individuals with autism would prefer. “In the autism community, many self-
advocates and their allies prefer terminology such as Autistic, Autistic person, or Autistic
individual because we understand autism as an inherent part of the individuals identity – the
same way one refers to Muslims, African-Americans, Chinese, Gay/Lesbian/Bisexual/Queer, or
gifted. On the other hand, many parents of Autistic people and professionals who work with
Autistic people prefer terminology such as person with autism, people with autism, or
individuals with ASD because they do not consider autism to be of an individual’s identity and
do not want their children to be identified or referred to as Autistic. They want first-person
language that puts person before any identifier such as autism, in order to emphasize the
humanity of their children” (ASAN, 2024). This may not seem like it matters, but it does. If an
individual feels like they are not being referred to in a respectable way, than further dialogue will
not continue. According to Konyn (2022), “By becoming a by listening and learning from the
autistic community, it opens a safe and constructively collaborative space for a more diverse and
inclusive world.”
Positive Element
While there is still prejudice and discrimination against autism and the ASD community,
there have many positive changes that have helped individuals with autism fight for resources
they need and that help with more inclusivity. According to Elemy (2020), “There are many
organizations that support people who are affected by autism spectrum disorder (ASD).
Charities, nonprofits, support groups, and governmental organizations help to drive research,
provide advocacy, and offer resources to families and individuals impacted by autism. These
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eight autism organizations offer vital information and assistance to the autism community:
Autism Speaks, National Autism Association (NAA), Autism Society of America (ASA),
Autism Research Institute (ARI), Simons Foundation Autism Research Initiative (SFARI),
Autistic Self Advocacy Network (ASAN), Association for Science in Autistic Treatment
(ASAT), and Autism Key.” These organizations have allowed transformation within the
community and help with support and acceptance within society. Most of these organizations
offer networking opportunities, information, resources, and policy advocacy. For example,
Autism Speaks is a nonprofit organization founded in 2005 that provided support to individuals
with autism and their families. “With their five main goals, Autism Speaks strives to: Increase
acceptance and understanding of individuals with autism across the globe, provide access to
reliable autism information and services for all stages of life, increase early intervention and
early childhood autism screenings, catalyze breakthroughs in autism research, and improve the
transition from childhood into adulthood for individuals with autism” (Autism Speaks, 2023).
These organizations help to fight for the rights of all autistic people. Their advocacy improves
the lives of so many individuals with autism, as well as their families. Without these
collaborative approaches, families would feel alone, like they have no support.
Benefit from Change
When we think about diversity, we think about a diverse group of people from all
backgrounds that all get along with each other and treat each other as equals. All these people
are contributors in society; all having their roles to play, and all contributors are necessary and
essential. Unfortunately, this is not always the case. The truth is not all members of society,
subgroups within society feel free to be themselves, or feel truly accepted for who they are. This
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is true for some individuals with autism. Although there have been many changes over the last
several decades in offering a more inclusive world to those individuals with autism, there is still
work to be done. This can be done by continuing to build societies awareness of the autistic
community.
Potential Obstacles
Changing discrimination and bias against the autistic community does not come without
obstacles. Implicit bias often times runs deep and needs time and the willingness to change.
“Gaps between communities can be a real obstacle that needs to be faced” (Han, et.al., 2021).
As autism is not as “visible” as other intellectual disabilities, this also adds to the increased
stigma autistic individual’s face. As many other developmental disorders can often, times be
more easily identified, autistic individuals do not have this common denominator. In many
different countries and cultures, autism is seen as a source of disappointment, annoyance, or even
shame. Unfortunately, for change to happen progress would have to be made worldwide. This is
a difficult task to accomplish as cultural norms and beliefs are different everywhere which can
make it harder for a global acceptance of autism. During a speech to his followers Pope Francis
(2014), urged people to “break down the isolation and stigma that burdens people living with
autism.”
Significant Factors
Imagine feeling as if you are discriminated against just because people think you act
differently? That is how adults within the autistic community report feeling. This is a highly
relevant topic and a conversation that needs to be discussed within both society and the autistic
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community. “With children with autism receiving more empathy and sympathy from society, a
recent study concluded, neurotypical adults hold negative implicit attitudes toward autistic
adults. These findings may help explain why autistic adults report experiences of discrimination
such as social exclusion, humiliation, and neglect” (Dickter, et.al., 2020). This means that most
neurotypical adults unconsciously and unintentionally have negative biases against the autistic
community. This is a deep-rooted problem within society. People are discriminating against
autistic adults and not even realizing that they are being discriminatory. Awareness of implicit
biases need to be talked about more and society needs to make an effort to change their feelings
and assumptions about autistic adults. The discrimination that adults with autism feel can
severely affect their mental health and how they perceive themselves. According to Han, et.al.,
(2021), “The review literature demonstrates that autistic individuals are acutely aware of being
stereotyped, judged, and discriminated by others. Autistic people also show signs of
internalizing stigma, rendering them more vulnerable to low self-worth and poorer mental
health.”
To manage the impact of stigma, it has been suggested that autistic individuals may use
strategies such as concealment and camouflaging, selective disclosure and self-advocacy, as well
as positive reframing and reconstructing identity. Neurodiverse individuals who are the insiders
in this subculture should be able to be their true selves around the outsiders without having to
feel the fear of discrimination. They should not feel the need to camouflage their behaviors for
anyone. Increasing awareness of how the stigmatization those outsiders are placing onto the
autistic community should hopefully draw attention to these behaviors and eventually decrease
this unjust discrimination.
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Societal Conversations
Community engagement is key to influence a culture of compassion. This would be a
good way for the insiders and the outsiders to connect in a real and authentic way. There is not a
better way for an autistic person to be seen and really heard than if they were self-advocating
their true and real life message with outsiders. With this experience, hopefully, change would
occur with the way outsiders interact with the autism community. Kris McElroy (2020), an
autistic blogger, shared that he felt that autistic individuals are misrepresented in the media and
that if there was correct representation than may be certain stigmas could be dismissed.
Outsiders cannot begin to have the right conversations when misrepresentation of the autistic
community continue. According to McElroy (2020), “Ways that this can be achieved in the media
is with comic strips (Spectrum Voices Comic), books (All the Weight of Our Dreams: On Living
Racialized Autism), Digital magazines (Zoom Magazine: Created for and by the Autistic
Community), film shorts (Pixar's Loop), and organization's for and by the community (Art of
Autism).
In the words of Kris McElroy (2020), “I am unique and there is beauty in my differences.
Everyone has gifts and talents, including me. I am doing my best, and my best is good enough. I
am enough exactly as I am. I am autistic, awesome and I do not need to be fixed. There is value
in the way I communicate and do things. I am unapologetically me.”
Personal Experience
Critically analyzing the inclusion of individuals with autism and the biases they face has
been an eye-opening experience. It has taught me to be more compassionate, understanding, and
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tolerant of all individuals not just those that society considers neurotypical. Growing up, I did
not understand the complexity of individuals that are considered neurodiverse. Inclusion was not
typical in my school environment and individuals with “special needs” were placed in a separate
classroom. When my eldest son was diagnosed as an autistic child, the school district we lived in
still followed this same classroom placement. Throughout his education, I fought for his
placement to be one in an inclusive environment. My son, and others with autism, have strengths
and weaknesses just like any other student. These strengths should be fostered for growth and
development, not limited due to the biases others have placed on them.
Within the autism community, I have gained valuable perspective. I have often spoke as to
how my son and his peers have taught me more about life than I could have ever taught him. It has
given me a greater appreciation for diversity and a wider acceptance of community as a whole.
People with autism deserve to be treated with respect and included in all societies without
judgement. As time goes on, I am hopeful that there will be inclusion for the entire autistic
community and people like my son can feel comfortable in their own skin without bias.
Bias
When I was younger, the only exposure to individuals with autism I had was what was
shown on television or in a movie. Needless to say, this often times was not a great representation.
As a result, I viewed autistic people as strange or awkward. It was not until my son was diagnosed
with autism at age three that I started to do my own research and try to learn as much as I could
about why my son had the differences he had. I realized all my pre-conceived thoughts and
notions I had about autism were wrong. I learned about the diverse range of strengths,
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experiences, and amazing contributions that autistic people have to offer. I have come to
understand that people with disabilities are just as entitled to the same rights as everyone else. It is
not enough to simply “tolerate” them or seclude and separate, we must strive for equity,
acceptance, and inclusion. By examining or biases and being mindful of our assumptions, we can
create an environment of acceptance where everyone is valued for who they are.
Diversity in Society
Being self-aware is the key to learning about diversity and implementing inclusion into
your life. Having a broader view on diversity can help society deal with biases and stereotypes,
hoping to avoid grouping communities, such as the autism community, into one broad category.
There is so much research to prove that inclusion and diversity not only benefits the individual
but society as a whole. According to Phillips (2017), “Diversity enhances creativity as it
encourages the search for novel information and perspective, leading to better decision making.
Diversity enhances the human experience.” Having a greater awareness of cultures as well as
subcultures shows respect. “Through awareness of intersectionality, we can better acknowledge
Field of Study or Profession
It is important for us to understand why diversity and inclusion in healthcare is so
important. By learning about different cultures and their healthcare practices, nurses are better
equipped to provide care that is respectful and responsive to the needs of all patients. Diversity
and inclusion directly affect patient health outcomes and quality of life. By understanding how
people on the Autism spectrum may interpret or feel about hospital stays or doctors’ visits, a
nurse can help to make the experience more comfortable.
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Autism spectrum disorder is an increasing diagnosis on a global scale. Despite
limitations that may accompany this disorder, it is not unheard of for a doctor or nurse to be an
autistic individual. With appropriate adjustments, empathetic colleagues, greater understanding
of autism, and support doctors and nurses with autism can continue to be assets to medicine.and
ground the differences among us” (Grace, 2018).
General Education Lens
By analyzing, the topic of diversity in the autistic community, through any lens, will
allow us to learn so much about this very important topic. If I were to focus on this topic
through the natural/applied science lens, it would look very different from that of the social
science lens. For instance, by analyzing using the social science lens it provides us with the
context of how humans form relationships and how they act within their environment.
According to Poulson (2009), “Perhaps as sociologists spend more time watching how children
with autism are taught to navigate the social world they’ll find interesting examples that show
how socialization—despite disability—still determines much of who we become.” However,
analyzing the autistic community through a natural//applied science lens would place my
research at more of scientific, evidence-based with facts that could help the community and less
on the human relationships and connections within the culture. For example, within the
natural/applied science lens I could have focused my research on how the advancements in the
field of neurodiversity have helped to understand how individuals with autism deal with stress
and coping mechanisms (Baron, et.al., 2006).
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Interactions with People
When individuals have a greater awareness of diversity, conversations can be
strengthened, allowing for more sincere interactions with others. When speaking with others we
want to make sure we aware and culturally appropriate. What might seem innocent to some, or
what might be culturally acceptable, can be inappropriate or offensive to others. Everyone has
the right to their own feelings, beliefs, and thoughts. According to Oguntimein (2020),
“Meaningful conversations can expand our worldview, leaving us better informed and more
connected with others.” The whole point of speaking to someone in a diverse manner is to
include them in your life and hopefully to be included in theirs. Approaching diversity in this
way places value on your interactions and encourages an open-minded approach.
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References
Alyward, B.S., Gal-Szabo, D.E., & Taraman, S. (2021). Racial, Ethnic, and Sociodemographic
Disparities in Diagnosis of Children with Autism Spectrum Disorder. JDBP, 42(8),
682-689. https://doi.org/10.1097/DBP.0000000000000996
Autistic Self-Advocacy Network. (2024). About Autism. ASAN.
https://autisticadvocacy.org/about-asan/about-autism
Autism Speaks. (2024). About Autism Speaks. Autism Speaks. https://www/autismspeaks.org
Baron, M.G., Lipsitt, L.P., & Goodwin, M.S. (2006). Stress and Coping in Autism. Scientific
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Dickter, C.L., Burk, J.A., Zeman, J.L., & Taylor, S.C. (2020). Implicit and explicit attitudes
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References
Konyn, L. (2022). 6 Ways to Become an Autistic Ally. Assistive Ware.
https://www.assistiveware.com/blog/6-ways-to-become-an-autism-ally
Lee, R. (2019). It is Time to Stop the Stigma. Autism Speaks. https://www.autismspeaks.org/life
Martin, D.N. (n.d.). The Ever-Changing Social Perception of Autism Spectrum Disorders in the
United States. Explorations. https://uncw.edu/csurf/explorations/documents
McElroy, K. (2020). 5 examples of autistic representation that made me feel loved. The Mighty.
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Phillips, K.W. (2017). How Diversity Makes Us Smarter. Greater Good Magazine: Science
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