Diagnosis Discussion Tips for Parents

AANE Staff

Many parents and family members wonder how to talk to their Autistic child or teen about their diagnosis. Several variables can impact the decision, such as the child’s age, reason for the evaluation, and whether or not the child needs particular therapies or supports. While each Autistic individual and family dynamic is unique and there is no formula for the perfect approach, there are many things parents and family members can keep in mind to make the process of talking about autism helpful and supportive.

  • Gain Understanding. First, it is key to understand the diagnosis yourself. Whether the diagnosis helped answer questions you have had for some time or it came as a surprise, recognizing that you need to process the information and understand your child’s unique set of Autistic traits will help you know what is important to convey to your child. You can sometimes find the information and support you need through the diagnosing physician, school evaluation team, a therapist, or through organizations like AANE.
  • Create an Ongoing Conversation. Instead of thinking about having a single talk with your child about their diagnosis, consider it as part of an ongoing conversation about them the same way you might talk about their likes and dislikes as they come up, or discuss things you and your child both observe about them as it arises. If your child was diagnosed at a young age, use simple language they can understand. As they get older, this conversation can evolve to incorporate terms and concepts that might be more complex. It’s important to check back frequently to make sure their understanding remains clear. Keeping the lines of communication open as your child grows will allow them to ask questions as they arise without feeling the subject is restricted or needs to be kept a secret.

Older children and teens may have a range of responses from feeling they finally have an explanation for aspects of themselves to difficulty accepting the diagnosis. Keep in mind that a person’s feelings about their diagnosis may change over time. Validate their feelings and be with them where they are. Rather than letting labels and terminology become barriers, shift the focus to self-discovery. How do they feel in particular situations? What makes things easier? What doesn’t work? Creating an open dialogue helps to build self-awareness, which helps us understand how to navigate the world around us and advocate for our needs. When your child has questions, foster a sense of exploration together and figuring out who can help when you don’t know the answers.

  • Provide Context. Depending on your child’s needs, they may have multiple assessments and various therapies. Talk about it as openly as you can so they understand what it is for. As your child gets older, find ways for them to provide input on services, activities, and school supports, and look for opportunities for your child to engage in the IEP process or meetings as early as possible. As different supports are implemented with your child at school or at home, create a dialogue about that support and discuss how it is working. This builds rapport, mutual respect, and self-awareness, which generally leads to greater self-advocacy.
  • Recognize Strengths. It is easy to slide into only devoting time and attention to the areas in which your child needs support. But this limited view neglects the facets of autism that make up your child’s unique personality. Take opportunities as they arise to point out all of the strengths, talents, and abilities your child has. Shifting away from a deficit focus helps your child see that their Autistic traits also make them who they are and allow them to explore their interests. There are skills they can develop and accommodations that can be made to help them navigate the world, but fostering an attitude of self-discovery will help your child understand that autism is a part of them.
  • Find the Points of Connection. Sometimes when a child is diagnosed, a parent recognizes they have similar traits to their child or they may already know they are Autistic as well. It can be helpful for children and teens to know that a parent has experienced what they have experienced or knows how they feel.

But regardless of neurological profile, everyone needs help at certain times. Sometimes we can find easy ways to alter the situation or environment. Sometimes we can develop skills. Sometimes we can figure out how to do these things on our own, but sometimes we need support from other people who know more about a challenge than we do. Point out the areas where you may have recognized you have needed help and show how you use strategies or support from others to learn skills or to work through the issue.

  • Be a Parent First. As a parent, you are many things to your child: their teacher, their support, their guide, their best advocate. But we want to remember to also just be their parent and enjoy who they are. Filling time with a constant emphasis on developing skills doesn’t allow for your child to also be themselves and find the things that bring them joy.

Recognize that understanding and discussing autism with your child is a journey. You may realize later you didn’t say things the way you wanted. Don’t be afraid to admit that to your child and try again. Demonstrate through your actions that it is not about getting things right the first time, but finding your way together.

Stay Current

Subscribe for AANE weekly emails, monthly news, updates, and more!