Parental advocacy is a fluid journey that evolves based on the unique situations and requirements of both the child and the parent¹. The fall brings a wave of transitions for all children, but for autistic children and their families, these changes can present unique challenges and opportunities. Shifts in classrooms, new therapies, and the introduction of unfamiliar routines or instructors can feel overwhelming. As a parent, it’s natural to feel unsure about how to best advocate for your child in these new settings. This blog offers practical advice on navigating new schedules and people, ensuring your child thrives in educational, community, and therapeutic environments.
- Take Time to Reflect. Begin your advocacy journey by reflecting on what your child specifically needs. Create a detailed list that includes preferred schedule arrangements, additional support, necessary downtime, and the order of daily activities. Spend time alone to draft this list, as it will serve as your guide in discussions with teachers and therapists.
- Ensure Alignment and Match. Not all environments will be the right fit for your child. Evaluate potential educational and therapeutic settings to ensure they align with your child's unique needs and the list you’ve crafted. If it becomes clear that an environment isn't a match, don't hesitate to seek an alternative one that better supports your child's development and comfort.
- Do Trial Runs. Before fully committing to a new schedule, test it with trial runs. These trial runs can involve spending a short period in a new classroom or therapy session to observe how your child responds. These trials provide valuable insights into potential issues and can help ease your child into unfamiliar settings with minimal stress.
- Take One Step at a Time. Introduce changes gradually to prevent overwhelming your child. Focus on one transition or adjustment at a time, allowing your child to adapt before moving on to the next change. This methodical approach helps build their confidence and mitigates anxiety related to new experiences.
- Maintain Consistent Communication. Open lines of communication with educators, therapists, and other support staff. Regularly discuss your child's progress, any concerns, and their responses to new environments. This open communication ensures everyone involved is informed and can collaboratively address any challenges that arise.
- Develop and Maintain Rapport. Establish a strong relationship with your child’s teachers and therapists. Trust is essential for effective collaboration, and having a positive rapport ensures all parties are comfortable sharing feedback and working as a team to support your child’s success.
- Notice When Something’s Not Working. Be attentive to signs that something may not be working for your child. Behavioral changes, increased distress, or reluctance to engage can indicate the need for adjustments. Trust your instincts and act promptly to address any issues, by modifying environments or schedules.
- Regularly Assess Your Child’s Stress Levels. Schedule regular check-ins with your child about their feelings and stress levels. These check ins will help you identify areas of concern, and reassure your child that their emotions are valid and important to you. Use these insights to tailor support strategies.
- Adapt When Needed. Flexibility is key in advocacy. Research shows that parental choice in decisions around treatment helps parents of autistic kids better advocate for their children². Be prepared to adjust your approach, schedule, or environment as needed. This adaptability ensures that your child’s needs are continuously met, even as they grow and change over time.
- Celebrate Wins. Acknowledge and celebrate each success, no matter how small. Providing praise and attention when changes occur and your child accepts them can help boost your child’s self-esteem and encourage them to embrace new challenges. Sharing these victories with teachers and therapists also strengthens your collaborative relationship and reinforces your child’s progress.
Research suggests that advocacy may itself be an active coping strategy for parents of autistic children³. By actively speaking up and collaborating with educators and therapists, you can create a supportive environment that aligns with your child’s needs and promotes their development. Remember, as a parent, you are your child's most important advocate.
Interested in learning more? At Mindcolor, our team members are specifically dedicated to learning about your unique individual child. We truly listen to you and your child about their needs and are eager to support them in the best way possible. Contact us at info@mindcolorautism.com to learn more about our specialized ABA services.
Author: Amber Valentino, Psy.D., BCBA-D, Chief Clinical Officer at Mindcolor Autism
References
¹ Smith-Young J, Chafe R, Audas R, Gustafson DL. “I Know How to Advocate”: Parents’ Experiences in Advocating for Children and Youth Diagnosed With Autism Spectrum Disorder. Health Services Insights. 2022;15. doi:10.1177/11786329221078803
²Valentine, K. (2010). A consideration of medicalisation: Choice, engagement and other responsibilities of parents of children with autism spectrum disorder. Social Science & Medicine, 71(5), 950-957. https://doi.org/10.1016/j.socscimed.2010.06.010
³ Ewles, G., Clifford, T., & Minnes, P. (2014). Predictors of advocacy in parents of children with autism spectrum disorders. Journal on Developmental Disabilities, 20(1), 73.