After getting a diagnosis, parents often ask me how they should tell their child that they have autism spectrum disorder (ASD).
Many struggle with how outsiders will view their child, worry that the information will be confusing or upsetting, fear that their child might use ASD as a crutch, or simply wonder just how useful (or potentially limiting) knowing will be. Most parents express that they want their child to know, but simply don’t know when to tell them or what words to use.
You know your children better than anyone, and recognize the most meaningful ways for them to best process information about themselves. There is no right way or single answer. Yet, over time, I have seen some parents frame their child’s autism in beautiful ways, allowing their kids to take ownership and pride in their differences while recognizing their unique challenges.
Here are five considerations to consider when trying to help your child understand and develop acceptance for who they are, as valuable members of the autism spectrum.
1. Developmental Readiness
Age and cognitive development matter when deciding when and how to share your child’s diagnosis. In my son’s early childhood years (2-4), we didn’t feel that this knowledge would be useful for him. I know other parents who were open and direct with their child as soon as they got the diagnosis, but this was not something we felt would help our son. ASD was something we kept between teachers, service providers, close friends, and family.
As soon as he entered primary school, we monitored our son’s readiness for self-understanding. When he entered kindergarten, we began to notice the developmental gaps between him and his classmates. This was when we started talking to him about his unique brain. We pointed out his strengths and abilities, and empathetically supported the things that were more challenging for him. We emphasized that all kids are better at some things than others. While some may need extra help with math or reading (which he didn’t), others (like him) benefited from support with speech and understanding emotions.
In 4th grade, we noticed that not only was he ready to understand his diagnosis, but the vocabulary could serve him as he related to others. It is hard having an ‘invisible’ disability, and we wanted to provide him with tools to help him navigate his world (and help others know that just because he was the spelling bee champ, doesn’t mean he could easily tie his shoes). He became the voice of his autism and helped educate classmates through presentations and self-advocacy.
In adolescence, self-awareness becomes even more important. Having the right vocabulary is very affirming at a time when life feels so fragile. This can be tricky, as teens don’t want to stand out or appear different. Yet, when framed well, significant relief can come from realizing that their struggles are not their fault. Moreover, this can be an affirming way to make sense of their experience of the world.
Many young adults come to me after receiving a later diagnosis. Not one has ever said that they are glad that their parents withheld information or didn’t get an evaluation earlier. Similarly, they were all relieved to have an explanation for their differences and struggles, and could now begin the process of healing years of self-berating.
2. Strengths-Based Focus
The folks I meet with who have the most positive, optimistic outlook for their child with ASD have always viewed autism as a remarkable strength that comes with some challenges. They value their child’s amazing brain which allows the child to focus on his/her enthusiasms, observe the world through a unique perspective, dismiss the confines of social norms and develop brilliant thoughts and ideas.
These parents also teach self-compassion about challenges, helping their kids understand that things that may be easy for their peers might be hard for them (though the reverse is also often true). They also recognize that ASD makes some things MUCH harder, like processing sensory information, reading social cues, flexibility of thought, maintaining reciprocal relationships, managing anxiety and anything related to executive functioning. And as these challenges are significant and difficult, parents help their children recognize that they can ask for support with things that don’t flow as well.
They can receive therapy, get accommodations at school or work, advocate for themselves with others, and help those around them learn how to be supportive. They can find others on the spectrum (and their families) who get it, who understand the meltdowns and idiosyncrasies, and where they can safely be themselves.
3. Time and Place
It’s helpful to think about a comfortable scenario for telling your child. Where does he/she feel most at ease? What time of day is your child most receptive to receiving information and having conversations? Are there upcoming events where sudden knowledge may lead to stress or anxiety? Parents have described different scenarios about how they’ve successfully shared the diagnosis.
One family talked to their daughter right before bed and after story time. Another shared the information on a morning walk around the neighborhood. A third did it in their therapist’s office, knowing that their son would grasp it better with a professional to help answer questions. While the initial discussion may seem especially important, it is also good to remember that autism self-awareness is a life-long process that changes over time and that the conversation is open-ended.
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So, what language do you use? How do you help your child fully understand the complex diagnosis that is autism? What is going to make sense?
Focus on strengths: “You know how you’re really good at…?”
Describe behaviors: “It can be hard for you when schedules change…”
Provide vocabulary: “Lots of people on the autism spectrum have repetitive behaviors like flapping their arms. It’s called stimming…”
Address who might benefit from knowing: “Who do you think ought to know?”
Let him/her ask questions: “Is there anything you want to ask me about autism?”
5. Use Examples
I have also seen families help their children see their strengths through the eyes of others who have accomplished much before them. Would your child be wowed by learning that the creator of Pokemon, Satoshi Tajiri, is on the spectrum? Might your animal lover be inspired by Temple Grandin’s contribution to large animal welfare? Or how about knowing that Dan Harmon, co-creator of humorous, cult TV shows like Rick and Morty and Community says ASD has helped his writing? Having successful examples of people on the spectrum can be empowering and open minds to the infinite possibilities that lie ahead.
Some families have also introduced their children to other people on the autism spectrum in their community. Social groups, slightly older mentors on the spectrum, and community events can be helpful in ‘normalizing’ the diagnosis, learning from the experiences of others with ASD, and helping kids find people who they can identify with.
Stories help kids make sense of the world. Books can be especially helpful for making meaning of autism and allowing kids the opportunity to learn from the experiences of others. There are numerous stories for children of all ages that present different perspectives of autism. It’s helpful for young people to know that these examples share one view of autism and that their experience may be different.
Knowledge is power. Use local agencies and online ASD support sites to find information that will connect with your kid. Many of my literal thinkers appreciate a direct explanation for autism, and the resources are out there.
Finally, I would say, trust your gut. Don’t rush it. Don’t slow down too much. Expect to keep this conversation open and repeat often. Just help your child understand, accept, and celebrate who they are in a way that feels right for them.
This article was featured in Issue 95 – Managing Autism Together