Self-Advocacy 2
The purpose of this research assignment was to explore and research self-advocacy for
individuals with autism spectrum disorder (ASD). There are several organizations around the
world which advocate for autistic individuals. Autistic individuals face challenges in the areas of
social interaction and executive functioning. This can impact their academic and social life
which can often lead students to become frustrated and depressed. In order to prepare students
with ASD for postsecondary education (PSE), educators need to promote independence and
encourage engagement in general education; It is essential that secondary teachers focus on
building self-determination, self-advocacy, social competence, and executive functioning
competence to prepare students for PSE (Boutot, 2017). This indispensable skill set is necessary
for autistic individuals to experience an independent adulthood.
The first article I chose is a review of literature on self-advocacy and self-determination
of autistic students. Zuber & Webber (2019) provided some valuable findings as well as a key
value regarding autistic students which I will discuss later. The second article I found focuses on
a case study of a consumer run organization that is run by autistic individuals and is specifically
for individuals with autism spectrum disorder. van den Bosch et al. (2018) found four themes
which were relevant to adults with ASD and their integration into work and society. I will also
examine each of those themes in this paper.
ASAN or the Autistic Self Advocacy Network was established to support the self-
advocacy for individuals with autism. There is an expectation that effective and meaningful
education must be delivered to students with certain learning needs. This in turn puts pressure on
educators who are more than likely not trained to meet this challenge for their student. Through
Self-Advocacy 3
self-advocacy it is possible for the educator to develop better teaching and learning strategies
when the student is able to articulate themselves by describing their challenges, wants, and needs
(Zuber & Webber, 2019).
Zuber & Webber (2019) chose to search databases for peer-reviewed articles regarding
self-advocacy, self-determination, and education of autistic students. Articles had to meet the
following criteria according to Zuber & Webber (2019):
1.) Self-advocacy and/or self-determination was discussed in an educational context
specifically for autistic students.
2.) Peer-reviewed and scholarly
3.) The publication date must have been between 2000 to 2017.
4.) Autistic individuals’ statements and opinions must be included.
After carefully reviewing 26 articles, they were able to narrow down their literature review to
only four articles. These articles provide excellent information for anyone wanting to know more
about the area of education, self-advocacy, and autistic students. The following are the four
articles which Zuber & Webber (2019) chose:
1.) Towards a critical ASD pedagogy of insight: teaching, researching and valuing the social
literacies of neurodiverse students (Walters, 2015).
2.) Comparisons of self-determination among students with learning disabilities and without
learning disabilities: a multivariate analysis (Chou et al., 2016).
3.) Self-advocacy skills as a predictor of student IEP participation among adolescents with
Autism (Barnard-Brak and Fearon, 2012).
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4.) Self-determination among transition-age youth with autism or intellectual disability:
parent perspectives (Carter et al., 2013).
The results of their research were quite interesting. Zuber & Webber (2019) found that there
is mounting evidence that self-advocacy, self-determination, and including autistic individuals in
the educational discussions and research about them leads to positive outcomes that include the
following:
1.) Achieving academic goals
2.) Independent living
3.) Improved confidence
4.) Employment outcomes
The opinions, views, and statements of those with autism are important and should be included.
Unfortunately, Zuber & Webber (2019) found that this is not the case. In fact, they were not
consistently used in research.
The second article I chose for this week focused specifically on an organization which is
run by autistic individuals for autistic individuals in the Netherlands. This particular article
conducted a case study which was based on qualitative research. Van den Bosch et al. (2018)
wanted to explore the experiences and perspectives of individuals with ASD as part of an
organization. The first author in this article, Karin Van den Bosch, is an autistic self-advocate,
founded the Persons on the Autism Spectrum and was even their first chair. Self-advocacy is
when an individual with autism is able to advocate for themselves. Self-advocacy can take place
in many different forms and organizational contexts and is often considered a crucial stage in the
development of more inclusive practices and cultures (Van den Bosch et al. 2018).
Self-Advocacy 5
For years it has been the parents, professionals, care givers and even educators who were
speaking for those on the autism spectrum. More recently though there has been a push for
individuals with autism to advocate for themselves or self-advocate. This is a newer phenomenon
which is often undertaken with a connection to either an organization that is either parent led or
professional. Consumer run organizations or CRO’s have begun to take shape for self-advocacy
of autistic folks. These CRO’s are run by folks on the spectrum and cater specifically to other
folks on the spectrum. This is such a great idea! Consumer run organizations consist of all
organizational control and decision-making lies in the hands of consumers Van den Bosch et al.
(2018). Who better understands the needs of autistic individuals than an individual who themself
has autism. Most consumer run organizations are oriented towards specific goals which include
the following:
1.) Self-help
2.) Self-Advocacy
3.) Peer-support
4.) Empowering participants
5.) Organizational change
6.) Individual change
The case study for this article focused on exploring the views and perspectives of autistic
self-advocates in the Netherlands who are involved with a consumer run organization. The name
of the organization is PAS Nederland. PAS stands for Persons (specifically adults) on the Autism
Spectrum. As of February of 2018, PAS had 600 members which paid a yearly membership fee.
It is this fee which helps the consumer run organization be able to operate. PAS has no paid staff;
all their staff are volunteers.
Self-Advocacy 6
Interviews were conducted with eight autistic males and females between the ages of 31-
67 who had worked with autism self-advocacy organizations from 1999 to 2014. Some of these
individuals still worked with their organizations as of 2018. These eight individuals were chosen
based off certain criteria set forth by Van den Bosch et al. (2018) which included the following:
1.) Having autism
2.) Being a self-advocate
3.) Involved in autism self-advocacy at board or staff level
After analyzing all their data, Van den Bosch et al. (2018) found that there are four
themes relevant to the acceptance and integration of adults with autism into work and society:
1.) ) Invisibility of autistic adults
2.) Diversity of the autism spectrum
3.) Autistic leadership
4.) Collaboration between people with and without autism
Van den Bosch et al. (2018) also found that there needs to be more research on the management
and sustainability of consumer run organizations and other self-advocacy organizations for
autistic individuals.
In conclusion, self-advocacy for individuals with autism is necessary! Autistic individuals
and their opinions and perspectives should be front and center of any decision-making processes
and solutions especially when they are aimed at improving their lives, their outcomes in society,
and their workplace.
Self-Advocacy 7
References
Van den Bosch, K., Krzeminska, A., Song, E., Van Hal, L., Waltz, M., Ebben, H., & Schippers,
A. (2019). Nothing about us, without us: A case study of a consumer-run organization by
and for people on the autism spectrum in the Netherlands.FJournal of Management &
Organization,F25(4), 464-480. doi:10.1017/jmo.2018.54
Zuber,FW.FJ., & Webber,FC. (2019). Self-advocacy and self-determination of autistic students: A
review of the literature.FAdvances in Autism,F5(2), 107-116.Fhttps://doi.org/10.1108/aia-
02-2018-0005
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