Talking to your child about their ASD diagnosis

Introduction

Finding out your child is autistic can bring a mix of emotions. You may start to worry about your child’s future development, or find relief in knowing there’s a name for the concerns you have about your child. After processing your own emotions, you may be wondering how your child may react to the diagnosis, or even if you should tell them? This article discusses the advantages and disadvantages of telling your child about their ASD diagnosis and tips for how to tell them. 

Why tell? The pros and cons of knowing the diagnosis 

The importance of knowing the diagnosis early

Growing up is a process of understanding the world and who we are. Therefore, knowing their diagnosis can be a helpful method for children to explore more of themselves, learn to accept their strengths and weaknesses, and learn to appreciate their uniqueness. Understanding the diagnosis can also be the opportunity for children on the spectrum to learn strategies early on to cope with certain challenges to become the best of themselves. Another benefit of telling your child early on is that if they experience their peers or teachers commenting on their behaviors, the internal thought that “something is wrong with me” will be lessened. As the author of Different, Not Less said in their book, “I promise you that a label of autism, or ADHD, or whatever it may be is far better than the labels they have internally given themselves” (Hayden, 2023, p. 165). 

Disadvantages of knowing the diagnosis later in life

Adults who find out they are autistic later in life are often in therapy services for social problems, depression, or anxiety issues without knowing the core reason (Bishop-Fitzpatrick et al., 2018; Geurts & Jansen, 2012). They may make assumptions about themselves without putting all the pieces together. These adults may also have lower self-esteem, self-acceptance, or even self-blame for letting others down or thinking why they can’t do simple things like everyone else (Wheeler, 2020). It may also be harder for them to make friends or maintain friendships without fully understanding social cues, leading to poorer interactions. Thus, it is suggested by experts and autistic adults to tell your child sooner rather than later about their ASD diagnosis.

How to tell? 

Tips for starting the conversation

Initiating the conversation with your child to discuss their diagnosis can be tricky. Here are some ways to start. First, your child may already notice the differences between themselves and their peers. Parents can initiate this conversation by asking what they know about themselves or answering any questions they have. Secondly, parents can start by stating that everyone is different and have different types of brains. One thing to keep in mind is that while you are exploring the differences with your child, it is also important to point out that people are still very much alike with all the differences. Thirdly, during your first conversation with your child, you may want to start by providing minimal information about neurodivergence so that your child doesn’t get overwhelmed. Talking about their ASD diagnosis and exploring who they are can be an ongoing conversation and journey. As parents, we would want to add information about ASD to your child through time. Last, but most importantly, is to tell your child that having an ASD diagnosis doesn’t define them. Rather, it’s only a part of themselves. 

Tips for what to tell

Parents can start by giving positive concrete examples stating that everyone has their own strengths and weaknesses, and no one is better than the other. It will also be helpful for kids to know that the world is not designed for neurodivergent people and that certain aspects of life may be more complex for them, but not impossible. However, they are not alone on that path, and many other neurodivergent people may experience the same challenges as they do. Along with that conversation, parents can also validate their feelings and support them, whether by having more conversations or finding more resources. Lastly, parents can introduce autistic role models who utilize their special interests as strengths and become successful in their careers. If you haven’t already, check out our previous blog on Impactful people on the Autism Spectrum!

Step by Step

1.  Start by telling your child about their diagnosis
2.  Identify what your child may have noticed about themselves
3. Answer any follow up questions
4. Explain what this diagnosis means – the world is designed for non-autistic people, and certain aspects may be more challenging for them, but they can still do great things!
5. Tell them that this is an ongoing conversation and exploration and that you will support them along this process

Book resources

Picture books:

• Samantha Cotterill’s Little Senses Series by Samantha Cotterill
• A friend for Henry by Jenn Bailey
• The girl who thought in pictures by Julia Finley Mosca
• All cats are on the autism spectrum by Kathy Hoopmann

Books for children and youth:

• The many mysteries of the Finkel family by Sarah Kapit
• Welcome to the autistic community by The Autistic Self Advocacy Network 
• I am special: Introducing children and young people to their autistic spectrum disorder by Peter Vermeulen

Books for adults:

• Living independently on the Autism Spectrum by Lynee Soraya
• Life and Love: Positive strategies for autistic adults by Zosia Zaks
• Pretending to be normal by Liane Willey
• Different not less by Chloe Hayden

Books for parents:

• Talking with your child about their autism diagnosis by Raelene Dundon

References

Chen, G. (n.d.). The talk: Speaking with Your child about autism. The Talk: Speaking with Your Child About Autism. From https://blog.stageslearning.com/blog/the-talk-speaking-with-your-child-about-autism 

Hayden, C. (2022). Different, not less: A neurodivergent’s guide to embracing your true self and finding your happily ever after. Murdoch Books. 

Stagg, S. D., & Belcher, H. (2019). Living with autism without knowing: Receiving a diagnosis in later life. Health Psychology and Behavioral Medicine, 7(1), 348–361. https://doi.org/10.1080/21642850.2019.1684920 

Wheeler, M. (2020, May). Getting started: Introducing your child to his or her diagnosis of an autism spectrum disorder. https://www.iidc.indiana.edu/irca/learn-about-autism/getting-started-introducing-your-child-to-his-or-her-diagnosis-of-autism.html.

Woods, S. (n.d.). Ten tips for talking to your child about their autism diagnosis. From https://depts.washington.edu/uwautism/wp-content/uploads/2020/05/Ten-Tips-for-Discussing-Autism-with-Your-Child.pdf