One of the biggest struggles I hear parents of a neurodivergent child discuss is how much information we share with others. How do we tell their siblings? What about extended family? Our friends? Teachers at school? Do they all have a right to know? Is sharing information invading my child’s privacy?

However, one of the most critical conversations you can have is with your child. They must understand their disability and be able to ask questions before you share information with others, especially outside of your home. So, what do they need to know and when? At any age, your child needs to know who they are. They may already feel different or be treated like so. You must help them understand why.

Many parents are worried that their child may not completely understand their disability or even use it as an excuse. A memory comes to mind of my daughter refusing to complete an essay in mainstream English class because she told her teacher, “I have an individual support plan (ISP) for a reason, and I don’t do this type of work.” I was shocked at first by her response but also proud that she advocated for herself.

I also recollect speaking to a mother of a 21-year-old boy on the cusp of entering college. He spent years not knowing he had an autism diagnosis while his mother quietly advocated with his principal and teachers. As he entered college, she struggled with the reality that she finally had to tell him so that he could self-disclose his disability to the school for support with accommodations. How would he function if he didn’t know he needed specific things? How could she tell him at 21 that he has had autism his whole life?

Here’s the thing: Parents often blame themselves or feel guilty about their child’s diagnosis. They are scared and worried about their child’s future. These feelings are normal, but you can’t bury them. Ensure you’ve processed the information before you speak with your child (and you should). Do your research. Talk to professionals and other parents. Help yourself be at peace with the diagnosis before you have the conversation.

Once you feel grounded, here is a step-by-step approach to talking with your child.

When and how you share information with a child will depend on their age and level of understanding. Make sure you’re aware of these factors before you share too much information with your child.

Clear and open communication with your child can help manage expectations, reduce anxiety, and maintain family harmony.

Remember that additional information should be shared as your child processes and understands more, especially as their environments continue to change. Allow your child to continue asking questions and be open and honest with you.

Ultimately, helping your child understand their brain can empower them to manage ongoing challenges and honor their strengths. In the future, I’ll share language guidance about how to talk with your child at every age.