5 Parents’ Perceptions of the College Experiences of Twice-Exceptional Students with Autism Spectrum Disorder

Joseph Madaus; Emily J. Tarconish; Shannon Langdon; Ashley Taconet; and Nicholas W. Gelbar

Madaus, J., Tarconish, E., Langdon, S., Taconet, A., & Gelbar, N. (2022). Parents’ Perceptions of the College Experiences of Twice-Exceptional Students with Autism Spectrum Disorder. Developmental Disabilities Network Journal, 2(2), 49–64. https://digitalcommons.usu.edu/ddnj/vol2/iss2/5/

Parents’ Perceptions of the College Experiences of Twice-Exceptional Students with Autism Spectrum Disorder PDF File

Abstract

Students with Autism Spectrum Disorder (ASD) are accessing college in increasing numbers. Within this group, there is a cohort of academically talented students who can be considered twice-exceptional, or 2e-ASD. While research about college students with ASD is increasing, there is a relative dearth of literature about 2e-ASD college students and their secondary transition and college experiences. The current study presents the results of individual interviews that were conducted with 10 parents of 2e-ASD college students to explore their perceptions of their children’s experiences, including what things went well and what were problematic areas. Parents described clear and early expectations that the student would attend college and that college provided the student with independence and the chance to be with people who shared similar interests. They described factors that were considered during the college search including the size of the campus and distance from home, and the importance of letting the student take increased responsibility, and if necessary, make and learn from mistakes. The need to focus on executive functioning and social skills was also noted. Implications for families, secondary transition personnel, and vocational rehabilitation counselors are presented.

Plain Language Summary

Some students with autism spectrum disorder (ASD) attend very competitive colleges. Unfortunately, there is very little published literature about their preparation and their experiences in college. We interviewed 10 parents of ASD college students who go to competitive colleges. The parents talked about things that went well and what things were difficult for their student. They had high expectations that their children would go to college. They also believed this gave their child independence and allowed them to be with people who shared similar interests. Many parents said that it was important to let their child make and learn from mistakes. They also talked about how important organization, time management, and social skills were in college. They described factors that they thought about during the college search. The information shared by these parents can help families and teachers prepare high school students with ASD for college.

Autism Spectrum Disorder (ASD) is a group of complex neurodevelopmental disabilities that may lead to difficulties with social and communication skills and restrictive, repetitive patterns of behavior, interests, or activities (American Psychiatric Association [APA], 2013). Individuals with ASD may also have a number of strengths and unique skills such as strong memory, consistency, creativity, dedication, focus, and an eye for detail (Anderson et al., 2018; Nuske et al., 2019; Van Hees et al., 2015). Some individuals with ASD have a range of strengths and can be considered highly gifted individuals (Reis et al., 2014). Highly gifted individuals with ASD are often called twice-exceptional students with ASD (2e-ASD). Twice-exceptional refers to:

 …students who demonstrate the potential for high achievement or creative productivity in one or more domains such as math, science, technology, the social arts, the visual, spatial, or performing arts or other areas of human productivity AND who manifest one or more disabilities as defined by federal or state eligibility criteria. (Reis et al., 2014, p. 222)

Students who are 2e can be difficult to identify because high abilities may overshadow the disability or the disability might hide their high abilities (Reis et al., 2014). This can make it difficult to determine exactly how many of these students are in K-12 settings and postsecondary education.

Postsecondary Education and Students with ASD

The rates of students with ASD who attend postsecondary education is substantially lower than the general population (Sanford et al., 2011), but their rate of attendance has been steadily increasing over the last decade (LeGary, 2017; Shmulsky et al., 2017). Students who have postsecondary education as a transition goal are more likely to attend postsecondary education (White et al., 2017). According to the National Longitudinal Transition Study 2012 (NLTS-2012), 75% of youth with ASD and 53% of parents of students with ASD expected that the student would attend postsecondary education (Lipscomb et al., 2017). The most recent data on college access of high school students with disabilities comes from the National Longitudinal Study-2. This indicated that approximately 47% of students with ASD were enrolled in postsecondary education within 6 years of exiting high school, but only 35% graduated or completed their programs (Sanford et al., 2011).

The parents of 2e-ASD students can play a critical role in the student’s transition to college. They are officially members of the student’s special education team, and therefore, are involved in secondary transition planning (Individuals with Disabilities Education Improvement Act, 2004). Parents may also be involved in researching and helping to select the college that the student attends. This can include finding the right fit in relation to institutional location, size, and amount of support offered (Thierfield Brown et al., 2012).

Parental Roles in the Transition to College

Parents of students with and without disabilities experience a learning curve in regard to parenting when the child transitions to college (Morrison et al., 2009; Sosonowy et al., 2018). Parents of college students with ASD often act as the primary advocates and decision-makers for their young adult (hereafter referred to as child during their time in primary and secondary education; Morrison et al., 2009; Pena & Kocur, 2013; Van Hees et al., 2018). They may struggle to develop a balance between acting as a coach to their children with ASD, supporting their children in navigating the physical campus and campus services while still encouraging independence (Alverson et al., 2019; Pena & Kocur, 2013). Parents may feel that their children may not be ready to advocate for themselves or ask the right questions (Pena & Kocur, 2013). Crib et al. (2019) reported that parents perceived their child’s lack of initiative, underlying difficulties with self-regulation, planning and organizing, and keeping track of time as having a negative impact on their transition. Needing to keep boundaries with their child and finding a delicate balance of pushing them to do things and letting them be independent were also noted by families (Crib et al., 2019). Alverson et al. suggested that there needs to be “a balance between the individual’s right to make decisions independently at age 18 and professionals collaborating with the family to ensure that ongoing supports are in place” (p. 62).

Parental Roles When Their Child Is in College

The roles of parents shift when the student enters college. At this point, only the student has a right to their education records under the Family Educational Rights and Privacy Act of 1974 (FERPA). Students may choose to sign a consent form allowing schools to share information and talk with their families, though this could result in a lack of opportunity to practice self-advocacy skills (Barnhill, 2016). Even with consent, parents may be told to limit their involvement so the student can learn to advocate for themselves (Pena & Kocur, 2013). Some parents may remain involved behind the scenes. For example, they may provide support with executive functioning skills, such as organization, as well as with financial and emotional support (Bolourian et al., 2018; Cai & Richdale, 2016).

Other perceived needs identified by parents include finding accommodating professors and identifying someone to serve as an advocate and point person at the school (Morrison et al., 2009; Pena & Kocur, 2013). Support with study skills, organization, and socialization were also identified as important areas (Sosonowy et al., 2018). Some parents were unsure if their child understood what it would take to live independently and if they could keep up with tasks such as self-care, cooking, cleaning, and scheduling appointments (Sosonowy et al., 2018).

Study Purpose

The current literature base primarily focuses on the experiences of students with ASD in general, but not on 2e-ASD students. One literature review reported that there were no articles that focused on 2e-ASD students (Gelbar et al., 2014). Another recent analysis found the area of educational research on this topic to be lacking and emphasized the need for more research on 2e-ASD students in the field of education (Luor et al., 2021). There is also limited research on the perceptions of parents of 2e-ASD students (Gelbar et al., 2014; Luor et al., 2021; Nuske et al., 2019). Parents play a significant support role in the transition process and when the student is in college, so they offer invaluable perspectives that can assist in improving the experiences of future 2e-ASD college students. The purpose of this study was to add to the knowledge base on 2e-ASD postsecondary education students by capturing parents’ perspectives and experiences as their children transition to 4-year colleges. The study attempted to address first-person perspectives on parental involvement, their child’s overall transition experience, and both challenges and difficulties faced in regard to academic and social experiences in college settings.

Methods

Ten parents of college students with ASD participated in individual interviews with the first author. Nine were parents of students with ASD who were enrolled in top national universities as rated by U.S. News and World Report (2021) and who participated in a study of 2e-ASD college students (Reis et al., in press). Each participant in that study was contacted and asked if they would be willing to have a parent be interviewed, and if so, to provide their parent’s contact information. In total, 15 students provided this information, and nine of the parents agreed to participate. The 10th interview was conducted with a parent who learned about the study during a professional presentation and volunteered to participate. This participant’s student was enrolled in a top regional university as rated by U.S. News and World Report and had been identified as gifted during his K-12 education.

Six of the participants were females and four were males. They all confirmed that their child had ASD; six described different ages of initial identification, including early childhood (n = 1), pre-adolescence (n = 2), late middle school (n = 1), and high school (n = 2), while four did not specify an age. Each student discussed was identified as gifted while in K-12 education (n = 6) or took Advanced Placement courses (n = 3) or honors courses in high school (n = 1). Eight of the students identified with the pronouns he/him, one with she/her, and one with they/them. Four of the parents shared that their child experienced anxiety disorders; two that their child experienced depression; and one each mentioned a sensory processing disorder, oppositional defiance disorder, obsessive-compulsive disorder, mood disorder, and a learning disability. Four parents stated that their child did not experience any co-occurring disabilities. Five of the students discussed were graduates of public high schools, three were graduates of private schools that focus on neurodiverse learners, and two attended a combination of public and private schools.

A semistructured protocol was used for each interview. This was based on the protocol used by Reis et al. (in press) in order to ultimately facilitate comparisons of student and parent perceptions of the students’ transition and college experiences. The protocols were sent to the participants prior to the interview to allow them to consider the questions being asked. All but one interview was conducted by phone and the other was conducted via videoconference at the parent’s request. Each interview was recorded and lasted an average of 46 minutes. The recordings were transcribed and reviewed for accuracy.

Data Analysis

The first three authors analyzed interview transcripts using basic thematic analysis, which is “a method for identifying, analyzing, organizing, describing, and reporting themes found within a data set” (Braun & Clark, 2006, p. 79). The first step involved all three authors familiarizing themselves with the data by both listening to the interviews and reading the written transcripts. Throughout this process, each made notes along the way, documenting their initial reactions to data that may have been relevant to the research questions. Next, each author generated initial codes, or the smallest units of meaning in the transcripts, staying as close to the participants’ words as possible. The authors then met to share their initial codes with each other, resolve any coding discrepancies, and note similarities and overlap among the codes. The last of these steps led to the identification of emerging themes. Themes were cross-referenced with the initial codes to ensure that they were inclusive of the codes within them (Braun & Clarke, 2012).

Trustworthiness Measures

The authors incorporated credibility measures into the analysis process to ensure the trustworthiness of the findings. Investigator triangulation, or the use of multiple investigators, was used to analyze the data. The authors also recorded audit trails to make the analysis transparent. Rich and thick descriptions that relied on the participants’ actual words were used as frequently as possible to provide evidence for the authors’ interpretations (Merriam & Tisdell, 2016). Finally, the identified themes and corresponding codes were shared with the participants, who were asked to provide feedback on any that they disagreed with or if they felt the themes and codes did not reflect their perspectives and experiences. None of the parents provided such feedback.

Results

Expectations for College

Nine of the parents expressed early expectations that their children would attend postsecondary education. Five parents described how attending college was an expectation because of their child’s intellectual capabilities, which aligned with college-level academic work. In addition, two parents mentioned how postsecondary academics involve research and deep exploration of specific topics, which fulfilled their child’s need to study special interests. One parent said,

There was no doubt that from a very early age, my child was happy learning, could contribute and would be enriched in every way with a college education, intellectually, discovery. My child’s capacity for research is so unmet. There was no, no doubt that they will, they will ultimately thrive and, and finish well at college.

Others indicated that special interests drove their child’s determination to attend college. One parent explained that her child’s interest and abilities in art dictated the school their child selected. This parent said, “it was bar none that she was going to go to college, and it was going to be an art college because this was a kid that everything came out in art form.” Another parent commented that her son loved to learn and thrived in environments that met this need. She shared,

He wants to be an engineer and he’s very focused on that. It’s a great field for him and he likes to learn new things, so he loves school. I don’t know if he could be in a job where he’s not constantly learning cause he loves to learn.

Two other parents indicated that because their children were not yet ready to enter the workforce or live completely independently, college was an appropriate next step of their children’s transitions. A final parent stated that it was not important to her if her son went to college and that it was up to him to decide if he wanted to go.

College Search Process

Several considerations influenced the college search process for parents and their children, including identifying colleges that were close to home, that offered specific academic majors, and that contained support services for students with disabilities. Identifying a school that contained their child’s academic major of choice was a priority for six parents. One parent explained, “We looked mainly into something where he wanted to go for a major.” Parents shared that the availability of academic majors was critical for their children for a number of reasons, including maintaining their intellectual interests and offering courses that could build on their children’s prior knowledge or artistic talents.

Seven parents reported that selecting a school that was close to home was their biggest priority, so they could offer support to their children if needed. One parent shared,

I also looked at schools that were about two hours’ drive, two to three hours driving distance range. And that is because in case he had a meltdown, I wanted to, wanted him to be in an area where I could drive and you know, calm him down or, or, or help him get out of the meltdown.

Her child ended up attending college 1 hour and 30 minutes away from home, which the parent characterized as “a good distance.” Other parents shared similar sentiments of wanting to be available if their children needed them or in case of emergencies. For the same reason, two parents described not supporting their children’s interests in attending schools that were far away. One explained,

I would only financially support somewhere that we could drive to within 5, maybe 6 hours in case there was a major problem to go get him, because we had a big concern about his independent living skills.

The second major consideration driving the college search for these parents was the support services offered to students with disabilities. Parents wanted to ensure that colleges supported their children’s academic and psychological needs, specifically by providing accommodations, mental health support, and academic counselors. One parent discussed how learning about available services at a college was a definitive moment for her as she helped her son select a college. She said,

That was the absolute clincher that, and they had a department for, you know, kids that, you know, needed support…emotional stuff and whatever it was, you could see, you know, a psychologist. You could get kinda the executive functioning skills and just have somebody to help you get your homework and get on top of your schedule.

Parents were attracted to colleges that not only offered disability-specific services, but also included other professionals, such as faculty, who created a supportive environment. Offering to help students with general academic skill development, providing encouragement, and reminding students that additional supports were available were areas of importance that parents mentioned. Several parents commented on how these factors helped their children feel that college was an achievable goal for them. One said,

All of the other professors, the food staff, there’s just so many people they’ve met this past year that could not have made my child feel like more success oriented. Like I’m going to do this. I’m going to apply myself. I’m going to love it. Like just excited and proud.

Another described that before enrolling, her son,

…had a couple of visits there and they were very welcoming and he had like a personal interview and they talked to him and I think that really made him feel comfortable, like it was approachable and that he could go there if he had any issues.

Three parents specifically mentioned that the level of support their child required would be more readily available at a small institution, which was another important factor in the college-decision process. One parent discussed not wanting her child to “get lost” in a big school and assumed he “wouldn’t be able to get the attention” he needed. Another parent said, “We looked at very small schools where there’d be a lot more personal support.” The last parent who shared this concern compared the supports offered by small colleges to the support networks that were available to her son in high school. She said,

A smaller school is better because…his classes are small and his teachers know him by now…people in the disability office know him by now…it’s a community where you get to know each other. And when you’re in a smaller college, it’s a little bit closer to high school. It’s not high school, but you have a community and it’s easier. It’s not as overwhelming to navigate.

Only two parents emphasized the need for their child to lead the decision, and specifically noted that they tried not to treat their children like children, but young adults. One parent shared the importance of having her son actively involved in the decision-making process. She said,

It’s not treating them like a child, you know, they’re, they’re young adults and they’re going to be adults. And part of that process is taking responsibility for where you go and what you do.

Five parents described that they, themselves, carried out much of the research involved in the college search and application processes, especially regarding how to register for and receive disability services. One parent explained the process of connecting with disability services, stating,

It was all me. I had to connect and make all these relationships and connect and go behind the scenes like even to the point where two years before helping her figure it out and it was arduous.

Best College Experiences

Two themes emerged regarding parents’ perspectives on their children’s best college experiences, including enjoying independence and forming or solidifying relationships. Five parents discussed how their children appreciated living and acting independently at college. One parent said, “He loved the experience. He loved being on the campus. He loved the freedom.” Others shared how their children enjoyed independently making decisions, including how they spent money and practiced self-advocacy and responsibility. One parent noted,

He does do what he needs to do: talk to the TA or the professor, or whatever about some issue, you know, some assignment or something, or for help on a test reviewing material and, and so on. So he was, he was able to do that.”

Another parent stated, “He has to advocate for himself cause he’s over 18 and I can’t be there to like go to set up his appointments and talk to his teachers. He needs to do that and he’s taken responsibility.”

The second theme involved how students were able to meet and sometimes connect with others who shared their interests. Parents described their children meeting “like-minded” peers in classes and student organizations. One parent said,

He had met a group of people who had joined clubs that he liked. So, he met people through there. And again, even though he wasn’t in a huge group socially, and he didn’t hang out with tons of people, there was a core bunch of people that he got along with.

Three parents discussed how their children were connected with student groups for students with disabilities. One said,

They have a social group at that disability office…if you are having a bad week and you want it to end together, have to have a pizza group every week and he would go and he met some people that way. And it was just like, you go for pizza. Sometimes they would bring a dog and that you could pet.

Four parents shared how their children stayed in touch with friends from high school after they transitioned. One parent even noted that his child identified six peers from his high school who attended the same college and they continued to spend time together. He said of his son, “He went to school with like six of his friends. They all caught the bus, so he was comfortable with all his friends…they all went to the same school and the same classes.”

Challenging College Experiences

All but one parent (9/10) indicated that executive functioning difficulties were an area of challenge for their children. The most commonly mentioned executive functioning challenge was time management. Students struggled to make schedules for themselves, plan time to study, or ensure they were planning time to care for their basic needs, such as eating meals. One parent discussed her son’s difficulty with time management. She said that a challenge for him was,

Figuring out time management. He has a very hard time with that, like the balance. He’ll tell me, actually we talked yesterday, and he was doing, he told me eight hours of class or 12 hours of class. He doesn’t have time to eat and I’m like, come on, you know? So we had to talk about that a little bit.

Other parents noted that their children struggle to follow up with professors, know what schoolwork to prioritize, check emails, and determine and use effective study and learning strategies.

While the five previously mentioned students were able to form new relationships at college, making friends was a struggle for the other five students. Parents of these students described that some of the biggest challenges involved unstructured communication and social activities, especially when the student had to initiate interaction. One parent described, “He does not seek friendships if that makes sense. If he is in a group and he starts talking to someone, they get along, then that’s fine, but he’s not the one to go looking.”

Another area of challenge reported by five parents included the rigor of college-level work. Parents indicated that their children were surprised, and sometimes disheartened, by the increased academic demands, especially as academics came easily to their children in high school. Students were sometimes shocked by not earning A’s, and also the required level of work they had to complete. One parent said,

The toughest part was academics because it came relatively easy to (name) in high school, but college is a different story. He didn’t do as well as he thought he would in some courses, especially the computer science classes, which have been very difficult for him. So that’s one challenging part.

Two parents added that their children were surprised when work continued to become harder each semester. One parent shared,

Second year he got frustrated because it got harder…so he got a little discouraged because his grades wasn’t what it was the first freshman year. And I told him every grade year you’ve to work harder.

A final area mentioned by four parents included dealing with psychiatric issues. These parents described their children experiencing depression, anxiety, substance use, or “feeling upset.” These individuals did not clarify if their children sought or received treatment for these issues, although one parent shared that she and her child did not seem to think these services were available. This parent indicated,

Most of the campus does not have enough mental health providers, like, I guess for student counseling. I guess it’s the supply does not meet the demand. So, there were times when I’d say, “Well, can’t you call dah dah dah, or can’t you talk to dah”? And they made it sound like it was unavailable.

Supports Used in College

Nine out of 10 parents described that their children registered for disability services, although one specified that his son chooses not to use the accommodations for which he is registered. The following accommodations were reported: extended time on exams (five students), approval to live in a single room (four), reduced distraction environment for exams (three), reduced course load (three), and note-takers (two). One parent explained why living in a single room was a beneficial accommodation:

He’s always had a single. We always figured just taking out the complication of a roommate would just make sense all along. He’s been very happy to kind of be on his own. Well, he’s very, he’s neat. He’s kind of fastidious in, as in, as keeping things the way he likes them. Yeah, he just enjoyed his freedom of kind of being able to go home sometimes and just unwind by himself.

Four parents reported that their children met with a disability services professional for help with course selection, accommodation provision, organization, and general support. One parent said, “She developed a system with someone where they would just do it over the internet when they couldn’t do it in person to help her keep on track.” Another parent described,

The school has a good wellness and disability office that helped him write the letters he needed to write to all his professors so he could get the accommodations he needed. And they also have services where if he needed to go talk to someone cause he was upset or frustrated he could too.

One parent discussed the importance of his son’s disability services advisor in his college experience, stating “He loves (disability services advisor name). When he has somebody, when he trusts somebody, and deal with somebody that’s all he wants to deal with.”

Parental Involvement

Five of the parents also addressed the need to allow their children to fail. Parents expressed the importance of “learning to fight (one’s) own battle,” and how “sometimes you have to fail to succeed.” They also described the learning that comes from failing and picking oneself up to try again. One parent said, “It’s okay if there’s failure because one of the things in life, you’ve gotta level up to where you can fail and get up and pick up the pieces.” Another parent shared that she supports her son but pushes him to self-advocate “as much as he can.”

Three parents were frustrated with their inability to set up services for their children or have campus representatives to check in with on their children’s progress. One parent described how when her daughter was reluctant to sign up for disability services, she tried to take the lead, but disability services wanted to work directly with the student. She said,

I told her I was going to go walk in there or she was going to go do it herself and so we had to have a meeting my husband and I with the head of the disability office who didn’t wanna hear from us because its college and you know and it’s how it has to be.

All three parents also indicated that they desired a way to “check in” on their children when they were unable to contact them. One parent shared,

As I recall with moving into a dorm and I couldn’t hear from her and I was scared something happened…I couldn’t get a hold of the RA, so I got a hold of the one that runs the whole dormitory situation. And she got a note from her. She wasn’t happy with me, but I just wanted to make sure she was safe.

Another parent portrayed a similar situation. He contacted campus police, who performed a wellness check. He said,

An officer went over there who was very, very nice about it. And eventually, they got his RA and they managed to talk to him, and he got out and went down to the cafeteria for some food and it was mostly okay after that.

Discussion

Ten parents of 2e college students with ASD shared their perceptions of their children’s transitions to postsecondary education and their college education. They reflected on the positive and challenging experiences their children had throughout their collegiate career thus far. They also discussed the challenges they faced as they adjusted to their new role as a parent of a college student. Half of the parents discussed understanding the need to make decisions and to be independent, even if it meant letting their child make mistakes. Despite allowing students to figure things out independently, a few parents were disappointed that they could not be involved with their children’s education and work with disability services. This appeared to be a learning curve for several parents in this study.

Some takeaways align with previous research on college students who are 2e and college students with disabilities. Nine out of the 10 parents had expectations that their child would attend postsecondary education. These findings align with current research on students with disabilities, which state that parent expectations are positively associated with a student’s likelihood of attending postsecondary education (Chiang et al., 2012; Doren et al., 2012).

The parents discussed the factors that came into play when choosing a college to attend. These included the availability of majors of interest, distance from home, and support available for students. Six out of the 10 parents in this study highlighted the importance of the availability of a major in the student’s area of interest. This is similar to findings by LaFave et al. (2018) who reported that a “desired program of study” was ranked as the second most important factor when choosing a college by 74% of high school students. The importance of major availability in an area of interest may be increased because of specialized interests in the ASD population. Distance of the college from home was discussed by seven parents in the study who preferred that the student be closer to home. In comparison, “being close to home” was only ranked as very important by 26% of high school students when discussing the choice of a college (LaFave et al., 2018). The additional support needs of the 2e-ASD population may explain the greater emphasis on the college distance from home when choosing where to attend.

Social relationships were noted by half of the parents interviewed to be a struggle for their children, which has been previously discussed in the literature on ASD. College students with ASD face challenges with social skills such as maintaining friendships. However, students with a higher sense of belonging have reported greater associated student satisfaction (Dymond et al., 2017; Fleming et al., 2017). Moreover, postsecondary education institutions need to focus on practices that can foster social skills and social relationships for students with disabilities, specifically 2e-ASD students.

Implications for Providers and Parents

The insights of these parents of 2e-ASD students raise implications for parents and for the professionals who support students in the transition process.

Awareness of Support Services in College

The Office of Disability Services is often the primary resource accessed by students with disabilities to receive support. Parents in this study discussed services available as being key in choosing an appropriate college for their child as well as being the driving force in researching disability services on campus. Transition professionals should take the time to discuss disability service options prior to the student conducting their college search process. It can be useful for students to be aware of the services as well as the process required to access appropriate services. Information provided to parents should include the shift in legal responsibility. This includes the differences in services under the IDEA and Section 504 at the high school level and Section 504 and the Americans with Disabilities Act at the college level. Parents should be notified about the impact of FERPA, as they will no longer have access to their children’s information at the postsecondary level. Parents should also be provided ways to support their child without attempting to contact the Disability Service Office and allow their child to do so independently. These suggestions may help with the reluctance of students to utilize services and support parents of students with disabilities as they transition into their new roles.

Supporting Students in College

Parents discussed specific challenges that their 2e-ASD children faced in postsecondary education. Almost all of the parents (9/10) mentioned executive functioning as an area of concern. Half (5/10) of parents mentioned challenges with social skills, and four mentioned mental health struggles. These findings align with current research on challenges for students with ASD in college. Executive functioning skills and social skills are noted areas of challenge for students with ASD (Dymond et al., 2017). Students with ASD may also experience co-existing conditions such as anxiety, depression, and social isolation in higher education settings (Fabri et al., 2020; Gelbar et al., 2014). These factors should be considered during the secondary transition process. Planning and services should focus on the development of executive functioning and social skills. In addition, mental health needs should be carefully considered. This includes what types of campus mental health supports are available at the schools that the student is interested. Consideration of factors like distance from home should be thought about if the student works with a private therapist and plans to continue. If the student will need to be connected to a new therapist closer to the college, consideration should be given to finding a trusted therapist and how the student will get to appointments. If the student needs medicine and will be away from home, thought should be given to how the student can independently manage taking correct dosages and getting refills.

Limitations

As with many other qualitative research studies, this study contained a small sample size. A small sample size limits the generalizability of the results from the study. Participants may also have provided socially desirable responses, which potentially could influence the information that was shared with the researchers. There was also potential for researcher bias, which may have impacted the interpretation of the study results. The researchers who analyzed the data attempted to minimize potential biases by individually coding the data prior to comparing results to determine themes as well as by conducting an audit trail.

Conclusion

The perceptions of parents of 2e-ASD college students in this study provide important insight and implications for other parents, secondary teachers and related services school personnel, and vocational rehabilitation counselors. The importance of early expectations that the student can attend college, and of executive functioning and social skills, are pieces that can be incorporated into secondary transition plans. Families can be supported through an inclusive college search process that involves parents, students, and counselors. This process can also focus on increasing awareness of support services available at college and providing specific support to this population based on their areas of need.

References

Alverson, C. Y., Lindstrom, L. E., & Hirano, K. A. (2019). High school to college: Transition experiences of young adults with autism. Focus on Autism and Other Developmental Disabilities, 34(1), 52-64. https://doi.org/10.1177/1088357615611880

American Psychiatric Association (APA). (2013). Diagnostic and statistical manual of mental disorders (5th ed). Author.

Anderson, A. H., Carter, M., & Stephenson, J. (2018). Perspectives of university students with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48(3), 651-665. https://doi.org/10.1007/s10803-017-3257-3

Barnhill, G. P. (2016). Supporting students with Asperger syndrome on college campuses: Current practices. Focus on Autism and Other Developmental Disabilities, 31(1), 3-15. https://doi.org/10.1177/1088357614523121

Bolourian, Y., Zeedyk, S. M., & Blacher, J. (2018). Autism and the university experience: Narratives from students with neurodevelopmental disorders. Journal of Autism and Developmental Disorders, 48(10), 3330-3343. https://doi.org/10.1007/s10803-018-3599-5

Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77-101. https://doi.org/10.1191/1478088706qp063oa

Braun, V., & Clarke, V. (2012). Thematic analysis. In H. Cooper, P. M. Camic, D. L. Long, A. T. Panter, D. Rindskopf, & K. J. Sher (Eds.), APA handbook of research methods in psychology, Vol. 2. Research designs: Quantitative, qualitative, neuropsychological, and biological (pp. 57-71). American Psychological Association. https://doi.org/10.1037/13620-004

Cai, R. Y., & Richdale, A. L. (2016). Educational experiences and needs of higher education students with autism spectrum disorder. Journal of Autism and Developmental Disorders, 46(1), 31-41. https://doi.org/10.1007/s10803-015-2535-1

Chiang, H. M., Cheung, Y. K., Hickson, L., Xiang, R., & Tsai, L. Y. (2012). Predictive factors of participation in postsecondary education for high school leavers with autism. Journal of Autism and Developmental Disorders, 42, 685-696. https://doi.org/10.1007/s10803-011-1297-7

Cribb, S., Kenny, L., & Pellicano, E. (2019). ‘I definitely feel more in control of my life’: The perspectives of young autistic people and their parents on emerging adulthood. Autism, 23(7), 1765-1781. https://doi.org/10.1177/1362361319830029

Doren, B., Gau, J. M., & Lindstrom, L. E. (2012). The relationship between parent expectations and postschool outcomes of adolescents with disabilities. Exceptional children, 79(1), 7-23. https://doi.org/10.1177/001440291207900101

Dymond, S. K., Meadan, H., & Pickens, J. L. (2017). Postsecondary education and students with autism spectrum disorders: Experiences of parents and university personnel. Journal of Developmental and Physical Disabilities, 29(5), 809-825. https://doi.org/10.1007/s10882-017-9558-9

Fabri, M., Fenton, G., Andrews, P., & Beaton, M. (2020). Experiences of higher education students on the autism spectrum: Stories of low mood and high resilience. International Journal of Disability, Development and Education, 1-19. https://doi.org/10.1080/1034912X.2020.1767764

Family Educational Rights and Privacy Act of 1974, 20 U.S.C. § 1232g. (1974). https://www2.ed.gov/policy/gen/guid/fpco/ferpa/index.html

Fleming, A. R., Oertle, K. M., Plotner, A. J., & Hakun, J. G. (2017). Influence of social factors on student satisfaction among college students with disabilities. Journal of College Student Development, 58(2), 215-228. https://doi.org/10.1353/csd.2017.0016

Gelbar, N. W., Smith, I., & Reichow, B. (2014). Systematic review of articles describing experience and supports of individuals with autism enrolled in college and university programs. Journal of Autism and Developmental Disorders, 44(10), 2593-2601. https://doi.org/10.1007/s10803-014-2135-5

Individuals With Disabilities Education Act, 20 U.S.C. § 1400. (2004). https://sites.ed.gov/idea/statute- chapter-33/subchapter-i/1400

LaFave, A., Kelly, E., & Ford, J. (2018). Factors that influence student college choice. Data Point. NCES 2019-119. National Center for Education Statistics. https://files.eric.ed.gov/fulltext/ED589838.pdf

LeGary, R. A., Jr. (2017). College students with autism spectrum disorder: Perceptions of social supports that buffer college-related stress and facilitate academic success. Journal of Postsecondary Education and Disability, 30(3), 251-268.

Lipscomb, S., Hamison, J., Liu Albert, Y., Burghardt, J., Johnson, D. R., & Thurlow, M. (2017). Preparing for life after high school: The characteristics and experiences of youth in special education. Findings from the National Longitudinal Transition Study 2012. Volume 2: Comparisons across Disability Groups. Full Report. NCEE 2017-2018. National Center for Education Evaluation and Regional Assistance. https://files.eric.ed.gov/fulltext/ED573334.pdf

Luor, T., Al-Hroub, A., Lu, H. P., & Chang, T. Y. (2021). Scientific research trends in gifted individuals with autism spectrum disorder: A bibliographic scattering analysis (1998-2020). High Ability Studies, 125. https://doi.org/10.1080/13598139.2021.1948394

Merriam, S. B., & Tisdell, E. J. (2016). Qualitative research: A guide to design and implementation (4th ed.). Jossey Bass.

Morrison, J. Q., Sansosti, F. J., & Hadley, W. M. (2009). Parent perceptions of the anticipated needs and expectations of support for their college-bound students with Asperger’s syndrome. Journal of Postsecondary Education and Disability, 22(2), 78-87.

Nuske, A., Rillotta, F., Bellon, M., & Richdale, A. (2019). Transition to higher education for students with autism: A systematic literature review. Journal of Diversity in Higher Education, 12(3), 280-295. https://doi.org/10.1037/dhe0000108

Pena, E., & Kocur, J. (2013). Parent’s experiences in the transition of students with autism spectrum disorders to community college. Journal of Applied Research in the Community College, 20(5), 512.

Reis, S. M., Baum, S. M., & Burke, E. (2014). An operational definition of twice-exceptional learners. The Gifted Child Quarterly, 58(3), 217-230. https://doi.org/10.1177/0016986214534976

Reis, S. M., Gelbar, N. W., & Madaus, J. W. (in press). Understanding the academic success of academically talented college students with autism spectrum disorders. Journal of Autism and Developmental Disorders.

Sanford, C., Newman, L., Wagner, M., Cameto, R., Knokey, A.-M., & Shaver, D. (2011). The post high school outcomes of young adults with disabilities up to 6 years after high school. Key findings from the National Longitudinal Transition Study-2 (NLTS2) (NCSER 2011-3004). Menlo Park, CA: SRI International. https://ies.ed.gov/ncser/pubs/20113004/pdf/20113004.pdf

Shmulsky, S., Gobbo, K., Donahue, A. T., & Banerjee, M. (2017). College students who have ASD: Factors related to first year performance. Journal of Postsecondary Education and Disability, 30(4), 375384.

Sosnowy, C., Silverman, C., & Shattuck, P. (2018). Parents’ and young adults’ perspectives on transition outcomes for young adults with autism. Autism, 22(1), 29-39. https://doi.org/10.1177%2F1362361317699585

Thierfeld Brown, J., Wolf, L. E., King, L., & Bork, G. R. K. (2012). The parent’s guide to college for students on the Autism Spectrum. AAPC Publishing.

U.S. News and World Report. (2021) Best national university rankings. https://www.usnews.com/best- colleges/rankings/national-universities

Van Hees, V., Moyson, T., & Roeyers, H. (2015). Higher education experiences of students with autism spectrum disorder: Challenges, benefits and support needs. Journal of Autism and Developmental Disorders, 45(6), 1673-1688. https://doi.org/10.1007/s10803-014-2324-2

Van Hees, V., Roeyers, H., & De Mol, J. (2018). Students with autism spectrum disorder and their parents in the transition into higher education: Impact on dynamics in the parent-child relationship. Journal of Autism and Developmental Disorders, 48(10), 3296-3310. https://doi.org/10.1007/s10803-018-3593-y

White, S. W., Elias, R., Capriola-Hall, N. N., Smith, I. C., Conner, C. M., Asselin, S. B., Howlin, P., Getzel, E. E., & Mazefsky, C. A. (2017). Development of a college transition and support program for students with autism spectrum disorder. Journal of Autism and Developmental Disorders, 47(10), 3072-3078. https://doi.org/10.1007/s10803-017-3236-8

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Developmental Disabilities Network Journal, Volume 2, Issue 2 Copyright © 2022 by Joseph Madaus; Emily J. Tarconish; Shannon Langdon; Ashley Taconet; and Nicholas W. Gelbar is licensed under a Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License, except where otherwise noted.

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