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Insight for Autistic Students and Their Families About Developing Self-Advocacy Skills: Two Studies on Emerging Adulthood

How should students and parents navigate interdependence when their goal is self-advocacy and a successful college transition for the student? Traditional wisdom says that too much parental involvement or support is a bad thing for students’ growth, but a couple of recent studies suggest it’s not so much about the frequency of interaction, but the type and quality of interaction, and that can be good news for autistic students.

Study: “Parent Involvement: Investigating the Parent-Child Relationship in Millennial College Students”

Many neurotypical students rely on their parents throughout their college years for support and help with their studies (Pizzolato & Hicklen, 2011). Millennials (those born after 1982) and Generation Z (those born between 1995-2010) have parents who are more involved in their college experiences than ever before. However, we know that increasing independence during the emerging adulthood years is an important step in overall development. Pizzolato & Hicklen write:

For those adolescents considering matriculation into higher education, and for those college students enrolled in post­ secondary institutions, the importance of such separation and decreased dependence is tied to an increased likelihood of persistence in school and achievement of desirable outcomes.[1]

This is significant in highlighting that when students take ownership of their education and become more self sufficient, they are more invested in their schoolwork and are more likely to stay on the road to success.

At the same time, the study reveals the way that separation and decreased dependence don’t necessarily mean a decrease in communication. For example, students might seek to develop independence via means of a “consultation” with their parents, either by speaking with them directly or even by imagining what parents might say about an issue without actually engaging them. These kinds of interactions do not inhibit intellectual or social growth and, in fact, can contribute to it:

If students and parents can learn to interact in ways that support the development of healthy mutual relationships—in which both parties recognize and respect the other as fully functional, capable individuals—then the parent–child relationships may be able to push emerging adult children to develop epistemological orientations previously found to be rare in college students.[2]

In other words, it’s not about the frequency of interaction, but the quality. In their study on the parent–child relationship in the context of important decision-making, Pizzolato & Hicklen found that almost half of the college student participants involved their parents in important decision making, but only 15% involved their parents on a consistent basis. This shows that while parents are still sought after for advice, college students are also successfully navigating the decision making process by using their own problem solving, turning to friends’ advice, or seeking out other mentors within the school.

Study: “Students with Autism Spectrum Disorder and Their Parents in the Transition into Higher Education: Impact on Dynamics in the Parent-Child Relationship”

What do the findings of Pizzolato & Hicklen mean for neurodivergent students? Perhaps such findings can help alleviate some anxiety about what “independence” should look like, as well as help families focus on the kind of communication that best supports students’ self-knowledge, self-advocacy, and academic growth. Another recent study shows why attention to the kind of communication can be an important step in developing self-advocacy skills in emerging adulthood.

According to a recent study (Van Hees et al., 2018), adolescents with autism and their parents were more concerned with the non-academic aspects of the college years than they were academic success. Many students in the study “expressed their need for ‘freedom’, ‘independence’, ‘autonomy’, ‘responsibility’, ‘fitting in’, and tied these concepts to roles they had to master successfully in order to construct—as one student called—the identity of ‘a legitimate college student.’”[3]

Unsurprisingly, the effort to construct this identity could be a source of anxiety and fear.

Autistic students in the study typically asked their parents for help choosing classes, thinking about career options, gathering documentation for in-class accommodations, and helping with the administrative side of transferring paperwork from high school to college – and continually sought out parents for emotional support. But many students with ASD still cited a reluctance to seek help and a desire for a higher level of independence from their parents and support services.

This perceived conflict between wanting to do more independently but still needing guidance can be a tricky path to navigate. The good news is that these articles show us that the real danger to independence or interdependence is when parents and students set up a dynamic that doesn’t allow the student to grow in responsibility and self-advocacy:

“Due to the emotional vulnerability of their children, their ASD-symptoms and difficulties to take the lead, parents experienced difficulties to handle their child’s wish for independence. Fueled by their own experiences, parents felt inner resistance to promote and stimulate the autonomy of their child.”[4]

In other words, families often found themselves struggling to encourage increased decision-making for the students, even if they understood the benefits of working on these skills.

Both mothers and fathers had lower expectations of autonomy for their children who have ASD than did parents with neurotypical children. This question of how to support students while encouraging them to take the lead in their college opportunities and preparation for full adulthood are challenging, but a couple of conclusions are clear:

  • Like parents of neurotypical students, parents of autistic children still have an important influence on how their child will develop socially and independently as they mature.
  • Students benefit from a loving home environment that is autonomy-supportive in order to develop into capable adults.

So, what can you do as a parent to act in “autonomy-supportive” ways? We’re glad you asked! You can support developmental processes in an independence-focused and communication-driven environment at home:

Study: “Students with Autism Spectrum Disorder and Their Parents in the Transition into Higher Education: Impact on Dynamics in the Parent-Child Relationship”

Help explain the why behind decisions you’re making. Weigh the pros and cons out loud and ask for your teen’s input.

Encourage your teen to research career or academic information on their own first. Then, meet together to discuss what they found.

Allow for failure opportunities. Self esteem and coping skills grow from experiencing a disappointment or misstep and coming out okay in the end. By making a mistake and problem solving, a student can learn what to do differently next time, how to manage perceived-as-negative emotions like frustration and/or humiliation, and practice successful repairs or second attempts.

Talk to your teen about whether they want to disclose their ASD diagnosis to peers on campus. Many students report a desire to participate in activities without their diagnosis pre-defining them because they felt that they would better fit in with the neurotypical students on campus. However, we now know that disclosing a diagnosis often brings significant resources to the table. If a student seems highly reluctant to disclose their ASD to anyone, speak to them about all the positive aspects of their personality and learning style, or encourage them to speak to a therapist who can help navigate these confusing emotions.

Help your teen develop a clear and accurate understanding of their ASD, along with their particular strengths and challenges. As they seek to develop a new social identity in college, they will be doing so knowing where they might need to seek further support.

Problem solve what can be done first before calling home or turning to parents for support. Make a list of who or what resources can help in certain situations that your teen can reference these later. According to the Interactive Autism Network, some parents and students found that having a support person or mentor in the student’s academic setting helped serve as a first line of questioning when support was sought.

Talk about peer involvement and encourage social and academic collaboration. If needed, explicitly discuss what is expected in various social situations and commitments such as group projects, campus extra curricular activities, or relationships.

Ask yourself: “With which task does my teen need the most support around?” If you can identify an area of need, you can start backing off the support given and encourage more independence here systematically. Also, talk to your teen about what areas they believe they need the most support on. Being able to accurately identify personal strengths and weaknesses is an important foundation of independence.

Start the planning process early. Begin talking about transitional skills such as money management, independent living tasks, time management, and self-advocating while your teen is still in high school, so they have practice becoming increasingly independent in these areas.

How do you encourage independence in your college-aged autistic teen? What have you found to be the best courses of communication? Let us know in the comments below! You might also be interested in these other posts from Katie: “Tips for Autistic Students: How to Make the Most of a Tutoring Session” and “Five Tips for Autistic Students: How and When to Meet With a Professor,”  as well as this brief video, “Autistic and Transitioning to College? What Students and Families Need to Know.”

Additional Sources:

Interactive Autism Community

STEM Perceptions: Student and Parent Study: Parents and Students Weigh in on How to Inspire the Next Generation of Doctors, Scientists, Software Developers and Engineers

Antony, P. J., & Shore, S. M. (2015). College for students with disabilities we do belong. London: Jessica Kingsley.

Sax L.J., Wartman K.L. (2010). Studying the Impact of Parental Involvement on College Student Development: A Review and Agenda for Research. In: Smart J. (eds) Higher Education: Handbook of Theory and Research. Higher Education: Handbook of Theory and Research, vol 25. Springer, Dordrecht.

[1] Pizzolato, J. and Hicklen, S. “Parent Involvement: Investigating the Parent-Child Relationship in Millennial College Students,” Journal of College Student Development, 52, no. 6 (2011): 671-686. Accessed November 5, 2018. doi.org/10.1353/csd.2011.0081.

[2] Ibid.

[3] Van Hees, V., Roeyers, H. & De Mol. “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 (2018) 48: 3296-3310. doi.org/10.1007/s10803-018-3593-y.

[4] Ibid.

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Katie Matthews

Katie is a part time speech and language pathologist and part time professional runner. Katie received both her Bachelor’s and Master’s degrees from Boston University in Speech, Hearing, and Language Sciences and Speech-Language Pathology, respectively. She also trains on the Boston Athletic Association High Performance Team. Katie has experience in public and private schools as well as private clinic settings. She works with children and young adults with a variety of disabilities, including those with Autism Spectrum Disorders. Katie loves to share executive functioning and planning tips along with the more traditional social language strategies to help students succeed.

2 Comments

  1. Another thing I want to add to this discussion is that need for support is not always linear. There may be times of stress or transition where a student may need more support again. For instance my father facing a health crisis has increased my stress level this year and I required some help from my Mom as my advocate again in addition to re-enacting some student support services from student success center with interpreting some complex social situations on campus. When things stabilize, I likely won’t need this level of support and will likely return to my previous level of independence.

  2. Laura, thanks for this helpful reminder. I wonder if students who feel they’ve had an autonomy-supportive environment at home or with their support network are better able to acknowledge when they may need a little extra support and seek it out. Thoughts?

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