- The Unheard Voices of Transition:The Experiences of Four Female Young Adults with ASD as they Prepare to Graduate
Autism Spectrum Disorder (ASD) is an umbrella term defined by the American Psychiatric Association's (2013) Diagnostic and Statistical Manual, Fifth Edition, as difficulties with social communication and interaction, as well as rigid and repetitive patterns of behaviors and/or interests. ASD has historically evolved over time, as it was originally defined as an emotional disorder of childhood directly related to parenting styles in the 1940s, regarded as a form of childhood schizophrenia in the 1950s-1960s, and later identified as a biological disorder of brain development in the 1970s (Mesibov et al., 2008). The single diagnostic term of ASD utilized today was previously categorized into three separate diagnoses: autistic disorder, Asperger's disorder and pervasive developmental disorder-not otherwise specified (APA, 2000).
ASD is about five times more common among boys than among girls (CDC, 2015). Females with ASD who are on the higher end of the spectrum typically have cognitive profiles, comorbid conditions, and altered presentations of clinical symptoms that oftentimes lead to under diagnoses in this particular subset of the population (Young & Rodi, 2014). In the current literature, there is significantly more information on the presentation of ASD in the male population as opposed to the female population (Baldwin & Costley, 2016; Cooper et al., 2018; Jamison & Schuttler, 2016; Mademtzi et al., 2017). This leads to the potential for misunderstanding females with ASD in current literature and identifies a need for current research to be focused specifically on females with ASD (Baldwin & Costley, 2016; Bargiela et al., 2016; Jamison & Schuttler, 2016; Mademtzi et al., 2017; Young & Rodi, 2014). Findings indicate that females with ASD face similar challenges with social interaction as similar to their male counterparts, but challenges unique to females with ASD include navigating female friendships with typically developing peers, facing barriers to accessing services due to delayed diagnosis, and coping with female-specific puberty issues (Mademtzi et al., 2017).
The prevalence rates of ASD continue to soar rapidly, increasing from 1 in 68 children in 2014, to 1 in 59 children in 2018. (Center for Disease Control [CDC], 2018). The number of students with ASD enrolled in the U.S. public school system is also increasing, as 0.4% of students had a diagnosis of ASD in the 2004-2005 school year [End Page 283] compared to 0.9% of students in the 2011-2012 school year (U.S. Department of Education, 2015).
For youth with disabilities, some older students are educated in public schools and/or vocational programming until they are 21 years old (U.S. Department of Education, 2007). One of the regulations of the Individuals with Disabilities Education Act (IDEA) is Secondary Transition, which produced guidelines for transition services to be provided to children with disabilities as they begin the process of transitioning out of high school (U.S. Department of Education, 2007). In this study, transition services refers to a group of activities that cater towards individual needs of children with disabilities as they prepare to transition from high school. For adolescents with ASD transitioning into young adulthood, understanding their experiences before their transition is growing in importance; 80% of college students with ASD drop out before graduation, exemplifying challenges in the areas of understanding this population (Van Bergeijk, Klin, & Volkmar, 2008).
Some studies (Camarena & Sarigiani, 2009; Davies & Morgan, 2010; Hetherington et al., 2010) presented both youth with disabilities and their families' perspectives on the transition process from high school. Camarena and Sarigiani (2009) interviewed 21 youth with ASD and their parents who all identified college as their aspiration following high school. Davies and Morgan (2010) interviewed ten youth with Down syndrome and one or two of their family members about the youth's experiences as they transitioned into adulthood. Hetherington et al. (2010) interviewed 13 youth with various disabilities and their parents as they prepared for the transition from high school.
Although these studies presented the experiences of youth with varying diagnoses, some notable commonalities regarding the collective transition experiences among the groups were found: the importance of...