Self-advocacy is a critical skill requiring communication for individuals on the autism spectrum, enabling them to express their needs, rights, and preferences effectively. It plays a significant role in their personal and academic lives, particularly as they transition into adulthood and face new challenges. This article explores the importance of self-advocacy and effective communication, drawing insights from the research conducted by Siva Priya Santhanama and Kaitlyn Wilson, as well as Stephen M. Shore’s work on self-advocacy.
Self-advocacy refers to the ability to speak up for oneself and make informed decisions regarding one’s life. This can involve articulating one’s needs and the use of partial or full disclosure in social situations, educational environments, and healthcare settings. According to Shore (2018), self-advocacy is not just about speaking for oneself but also about understanding one’s rights and responsibilities. This understanding empowers individuals to take control of their lives and advocate for necessary accommodations in college or work settings.
Effective communication is a cornerstone of self-advocacy. Autistic individuals may face unique challenges in communication due to differences in social interaction and processing of verbal and nonverbal information. However, developing effective communication skills can significantly enhance their ability to advocate for themselves. This includes verbal communication, non-verbal cues, and written expression (Santhanama & Wilson, 2020).
While transition goals begin at the age of 14 for students with Individualized Education Plans (IEPs), not all students actively discuss their strengths and weaknesses or understand how, when, and what to disclose to others for social or academic purposes. Yet, they are expected to be able to do so upon graduation from high school. In addition, those students may not have access to neurodivergent mentors who speak positively about their differences and can share strategies that have contributed to their accomplishments and self-esteem. Self-advocacy skills need to be emphasized and actively targeted in high school to prepare students for life in college or the workplace.
Universities often have an onsite Speech and Language Center, which can and should be utilized by neurodivergent students to continue to support their social, academic and self-advocacy needs. Speech Language Pathologists should be accessed as social and advocacy coaches in both academic and workplace settings to assist in developing these skills and to help neurotypicals understand and embrace the communication styles of their neurodivergent peers, creating a welcoming environment.
Santhanama and Wilson’s (2020) research highlights several perceived challenges faced by autistic college students in self-advocacy. These challenges include:
- Social Anxiety: Many autistic individuals experience social anxiety, which can hinder their ability to speak up in group settings or confront authority figures.
- Misunderstanding of Rights: A lack of awareness regarding their rights can prevent autistic individuals from advocating effectively.
- Communication Barriers: Difficulties in expressing thoughts and feelings can lead to frustration and misunderstandings, making it hard to advocate for their needs and feel socially connected to their peers and campus community.
- Fear of Judgment: Concerns about being judged or misunderstood by peers and educators can further inhibit self-advocacy efforts.
Despite these challenges, Santhanama and Wilson (2020) found that many autistic students are eager to engage in self-advocacy. Engagement levels vary, with some students actively seeking opportunities to express their needs and others feeling overwhelmed. Their study emphasizes the importance of supportive environments and allies that encourage self-advocacy. It also supports the need for self-advocacy training to be more developed during the high school years so that they may not feel as overwhelmed in secondary settings.
Self-advocacy fosters personal empowerment. When autistic individuals learn to express their needs and preferences, they gain confidence in their abilities. This empowerment is crucial for their mental health and overall well-being. According to Shore (2018), self-advocacy can lead to increased independence and improved life satisfaction. Effective self-advocacy is also linked to academic success. Autistic students who can articulate their needs are more likely to receive necessary accommodations, such as extended time on tests or modified assignments. Santhanama and Wilson’s (2020) research indicates that students who engage in self-advocacy are more likely to report positive academic experiences. Self-advocacy also plays a vital role in building and maintaining social relationships. By effectively communicating their needs and boundaries, autistic individuals can foster healthier relationships with peers and mentors. This communication can help mitigate misunderstandings and promote inclusivity.
Strategies for Developing Self-Advocacy Skills
Educating autistic individuals about their rights and the importance of self-advocacy is essential. Embracing neurodiversity and learning about the autistic individual’s particular learning style, communication preferences, and needs should happen prior to graduating high school. Workshops, seminars, and community-based peer support groups can also provide valuable information on how to advocate for oneself in various settings, shared experiences, and helpful strategies.
Role-playing scenarios can help autistic individuals practice self-advocacy skills in a safe environment with a mentor or socialization coach. This practice can include situations like asking for help in class, setting up meetings with their professors, requesting accommodations, or navigating social interactions. For example, self-advocacy may look like letting peers that you sit with at lunch know that you need some downtime but would like to join them later, e.g., “I’m going to sit outside for a minute to decompress from all of this work, but would like to join you for lunch.” Normalizing self-care through communication is something everyone can relate to. In fact, a peer may even say, “Same, can I join you.” Such exercises can build confidence and reduce anxiety. Having access to a neurodivergent mentor who has already experienced similar situations may provide added support.
Support from educators and peers is crucial in fostering self-advocacy. Educators can create inclusive environments that encourage open communication and respect for individual needs. An example of this would be a professor inviting students with varied learning styles to alert them to their needs as part of their discussion of the class syllabus, which typically happens during the first class meeting. Scheduled meetings or “check-ins” with students prior to midterms are also a way to invite students to share their successes and hurdles, offer executive functioning support, and continually guide students toward success.
Technology can be a powerful tool for enhancing communication and self-advocacy. Augmentative and alternative communication (AAC) devices, apps for note-taking and summarizing key points, and online platforms can facilitate expression and connection. Technology can and should be used both receptively and expressively to aid comprehension of material across settings. Shore (2018) advocates for incorporating technology into self-advocacy training to help individuals articulate their needs more effectively.
Family plays a pivotal role in the development of self-advocacy skills. Encouraging open dialogue within the family can help autistic individuals feel more comfortable expressing their needs. Families can also model effective communication and self-advocacy behaviors by speaking positively about diagnoses strengths and positively praising the act of asking for help when needed.
Self-advocacy and effective communication are essential skills for autistic individuals, impacting their personal, academic, and social lives. Despite the challenges they may face, fostering these skills can lead to greater empowerment, independence, and success. By understanding the importance of self-advocacy and implementing supportive strategies, we can create a more inclusive society that values the voices of autistic individuals.
As we continue to advocate for the rights of autistic individuals, it is necessary to recognize the significance of self-advocacy and effective communication in their journey. Empowering autistic individuals to speak up for themselves is not just beneficial for them; it enriches our communities and promotes understanding and acceptance for all.
Gina-Marie Moravcik, MA, CCC-SLP, is a neurodivergent SLP and ADHDer who owns and operates Sunrise Speech and Language Services. For more information, visit sunriseslpsvcs.net.
References
Santhanama, S. P., & Wilson, K. (2020). The role of self-advocacy in the lives of autistic college students. Journal of Autism and Developmental Disorders, 50(5), 1720-1731.
Shore, S. M. (2018). Understanding Autism: A Guide for Parents and Teachers. Future Horizons.
