116 Telling an Individual about Their Diagnosis

Why:

To some individuals, knowing about their disability may bring comfort. They may finally have a name and an explanation as to why some things are hard for them. It will allow them to educate themselves so when they get older, they will be able to advocate for the services that they need. This will also lead to a more open, cohesive environment where family, teachers, therapists and doctors can be on the same page. There could be some negative reactions, such as blaming behaviors on this newly found diagnosis, but situations like this may happen regardless. Sharing information is a very personal decision that no one else can make for you; you are the expert on your child. Talk to people who support you, weigh your concerns and the positives, and decide what you feel will be best for your child.

Who/Where:

As parents, responsibilities mostly fall to you. However, there are others to support you in the process. Think about all your options–are there grandparents, aunts or uncles, teachers or friends with whom your child is comfortable and who you may want to get involved? They may have insight into ways to discuss this with your child. This would also give your child other people to go to when they need help or support.

When you do discuss the diagnosis with your child, make sure you are in an environment where you both feel comfortable and relaxed. A higher stress level can make the ability to process information difficult for everyone, but especially harder for your child with ASD. Try to discuss this in an environment with minimal interruptions or distractions.

What/How:

Start small. Every family dynamic and situation is different so everyone will handle this conversation differently. Due to this, you may not wish to complete the discussion in one setting or even give all of the information right away. Depending on your child’s ability to process this information, you may only give some of the necessary pieces and fill in the rest. You can add more information over time. Also keep in mind the level of information you want to share and be sure to talk in terms that your child will understand. For instance, a younger child may need less information than a child functioning at a high school level.

When:

Deciding when to tell your child about their diagnosis is a very personal decision. Many circumstances will help you to determine when is right for you. Some families discuss the diagnosis while the child is young so they can be aware of their differences; other families may wait to ensure their child will be able to understand the diagnosis. Keep in mind that until a child is 18, it is the parents’ decision as to when to have this talk with their child.

Children may begin asking questions about themselves. Why are they different? What is wrong with them? This could be a natural start into the conversation. Other children may be thinking these same questions but are unable to verbally express them. Look for these signs to judge an appropriate time. As the parent/caregiver, you will know best!

Use consistent terms.

It is helpful to speak openly about the diagnosis, using accurate terms. If your child has diabetes, you will refer to their condition by name, as diabetes. So, if your child has autism spectrum disorder, don’t be afraid to use the term with your child.

There are some books listed at the end of this article that may help you in the process. You will also find a handout in this section that is a simplified explanation of ASD. These visual supports are nice because you and your child can read them over and over to help with understanding and refer to them as needed.

Be positive.

What is your child good at? What do they know a lot about? What makes them special? Let them know you love all this good stuff and that you don’t ever want them to change. Think about discussing how each person in your family is unique. By setting this tone, you are more likely to get a more positive response from your child as you explain their diagnosis.

Resources

Pike, R. (2008). Talking together about an autism diagnosis. London: National Autistic Society.

Huws, J.C., & Jones, R. S. P. (2008). Diagnosis, disclosure, and having autism: An interpretative phenomenological analysis of the perceptions of young people with autism. Journal of Intellectual & Developmental Disability, volume 33 (2), pages 99-107.