Helping Your Child Discuss Their ASD Diagnosis with Peers and Friends

Parents, teachers, and clinicians often wonder if a child should disclose their Autism diagnosis with friends and peers. Common questions that arise from parents range from “How does my child tell their peers about their Autism?” to “When should my child disclose their diagnosis?” to “Is it even necessary for my child to disclose their diagnosis?” This blog outlines some tips and considerations for if, when, why and how to disclose an autism diagnosis with one’s peers.

Disclaimer: This blog will highlight certain aspects of the process when a child chooses to disclose their Autism diagnosis to peers; however, questions of when, how, and to whom does the child disclose their diagnosis is nuanced. Depending on the child, the process may look different.

What Are the Possible Benefits of Sharing an Autism Diagnosis with Peers?

Teachers, parents, and clinicians may hesitate to have their student, child, or client disclose their Autism diagnosis with peers because they worry about the potential negative outcomes. Research indicates that approximately two-thirds of children with Autism between 6 and 15 years have been bullied, but that disclosing an Autism diagnosis may actually prevent bullying. Children are often curious about individual differences among their peers and may become more accepting once they learn about a peer’s Autism diagnosis, since they gain some insight as to why the individual engages in behaviors they are unfamiliar with, such as stimming behaviors. This increased understanding may stop student gossip and the spread of misinformation, such as “s/he is weird” or “don’t play with him/her/them.” Moreover, once classmates understand Autism, they may be more accepting of special accommodations, which decreases perceived favoritism. For example, if a classmate with Autism is given extra time on assignments or is first in line because he needs more space, the other students are more likely to recognize that need as an accommodation to Autism and therefore be more understanding. Likewise, if a classmate shares their Autism diagnosis with their peers, this process might be empowering for the child in raising awareness and support for Autism. Parents and schools can also help their child or student by increasing school-wide Autism support.

Things to Consider Before Disclosing the Diagnosis

Before disclosing an Autism diagnosis with classmates, it is important to consider whether or not the child should be present when the class is learning about Autism. Questions to consider include: Is the child with Autism able to understand the content of discussion? Would it be helpful for an Autism specialist or parent to come in and talk to the class? If your child is self-disclosing to their class, ask your child, “What do you hope to gain by disclosure?” For example, a younger child in elementary school may choose to disclose their diagnosis to their entire class so that their classmates are more understanding of special accommodations and more encouraging towards social difficulties. An older kid with Autism, on the other hand, might share their diagnosis on a need-to-know basis. If your child has difficulty speaking in front of a group of people or others have difficulty understanding their speech, another supportive adult can help explain Autism to the class and other specific needs your child has. Some older kids choose to pass out “business cards” that briefly explain their Autism when peers notice social difficulties and inappropriate behaviors, and this might help increase understanding. It can also be helpful for your child if they rehearse their diagnosis disclosure method with a parent, mentor, or another adult prior to explaining their Autism to peers. This can help your child practice explaining their diagnosis, while allowing them to receive support and guidance about the process.

Age Differences in Understanding Autism (Tips for Talking to Different Ages)

Depending on the age of the child or peer who is learning about Autism, an individual with Autism might paraphrase concepts differently.

For ages 2 to 5 years, it is best to explain Autism clearly and concisely. When disclosing your Autism diagnosis to this age group, you can say things like, “My brain works a little bit different than yours” or “I find it hard to look people in the eyes” or “I like to do things a certain way every time.” Younger children often ask a lot of “why” questions, so parents and other supportive adults can help facilitate discussions when appropriate.

For ages 6 to 9 years, children are better able to understand more abstract and complex descriptions. When you are disclosing your Autism to this age group, you can say things like, “I find it hard to read peoples’ thoughts or emotions at times” or “I find it hard to communicate sometimes.” There is also a misconception within this age group that Autism is contagious. Parents and teachers can help clarify that you can’t “catch” Autism because it is a special and unique brain difference that a person is born with.

For ages 9 years to adolescence, children can understand more detailed, written information on Autism, so poster boards, presentations, and/or pamphlets may all be helpful in facilitating a class discussion.

Tips When Disclosing your Autism Diagnosis

Below is a list of helpful pointers children can use as they are preparing to disclose their Autism to peers.

Your child can explain Autism as “differences in my brain” as opposed to “neurological developmental condition.” The former description is much easier to understand, whereas the later description, while true, may be confusing to peers and warrant more questions.

Address differences in your learning preferences, such as “I like to have visuals when I learn” or “Sometimes I need to take a break when I’m overwhelmed by noise.”

Discuss what task completion looks like for you, such as “It takes me longer to complete tasks even when I’m trying as hard as other students.”

Explain social difficulties during breaks, recess, lunch, or snack, such as “I sometimes prefer to do other activities or tasks by myself,” “Sometimes I don’t notice how other people feel” or “Sometimes I find it hard to follow other children’s games.”

Explain any language difficulties, such as “Sometimes I don’t understand what others are saying” or “Sometimes I am not able to follow instructions when others speak them.”

Explain any thinking or repetitive behaviors, such as “I have to have things done in a particular way every time”, “Sometimes I move my hands around when I’m nervous or excited” or “I might get upset if things change.”

Remember to talk about your strengths and what you are really good at! You can tell your peers that Autism is not just about your difficulties; your Autism means you also have unique strengths.

Let your classmates know how they can help you, such as being patient, friendly, quieter, understanding, etc.

Explain that your Autism can be totally different from another kid’s Autism.

Check out this video of a 4th-grader who is disclosing his Autism to his class:

Check out the START Project from Grand Valley State University, which provides resources for your child’s self-advocacy and presentation templates and examples for disclosing their diagnosis:

GVSU: Self-Advocacy and Diagnosis Disclosure Resources

What Schools Can Do to Help

Schools administrators and educators are in a unique position to help facilitate an inclusive culture and environment for children. As a way to help a child who decides to disclose their Autism diagnosis to peers, schools can provide additional resources that explain Autism. Providing additional resources can increase school-wide understanding and student growth. Schools can also encourage diversity and difference through school events, projects, and programming. By discussing the theme of difference and emphasizing that everyone has strengths and differences, students begin to understand and honor cultural, learning, and social differences among each other. Moreover, it is important for educators to check in with their students after they disclose their diagnosis to their classmates. This check-in is for the student, who is encouraged to think about the process of disclosure, and for the teacher, who can offer additional support.

Schools can also implement specific programs that encourage peer relationships among students with diverse learning, social, and communicative needs. School-based peer support groups promote peer discussion and collaboration, and educate students on peer differences. By integrating students with diverse social and academic needs, students begin to relate to peers with unique differences and ultimately gain a stronger understanding of individual differences. For one example of a peer-support school program, click the link: Students Talking And Relating (STAR) Program.

References

Autism Speaks (2019). Retrieved at https://www.autismspeaks.org/autism-facts-and-figures

Foster, A., Rude, D., & Grannan, C. (2012). Preparing parents to advocate for a child with autism. The Phi Delta Kappan, 94(4), 16-20. Retrieved from http://www.jstor.org.proxy.lib.umich.edu/stable/41763729

Kerr, K. (2011). Sharing the Diagnosis of Autism Spectrum Disorder. Amaze Autism Victoria. Retrieved from http://www.amaze.org.au/uploads/2011/08/Fact-Sheet-Sharing-the-Diagnosis -of-Autism-Spectrum-Disorder-Aug-20111.pdf

Lyons, J. (2005). How to present an Autism awareness program for your child’s classmates. Autism Society of America. Retrieved from https://asa.confex.com/asa/2005/techprogram/S1538.HTM.

Munn, K., Jozsa, J., & Nichols, L. (2019). STAR: Students Talking And Relating Curriculum. Saline Area Schools: Woodland Meadows Elementary. Retrieved from: https://www.salineschools.org/departments/special-education/elem-k-3/students-talking-and-relating-star/

START Project. 2019. Self-Advocacy. Retrieved from https://www.gvsu.edu/autismcenter/self-advocacy-242.htm