How to talk to your child about their autism diagnosis – the earlier the better
- Written by: Josephine Barbaro, Associate Professor, Principal Research Fellow, Psychologist, La Trobe University
With better awareness and acceptance, approximately one out of every 50 children[1] is receiving an autism diagnosis. More and more families are deciding when to share this information with their child. Some parents worry that doing so will “label” their child, or make others treat them differently.
Autism is a neurodevelopmental disability that presents as differences in socialising, communicating, and processing information (including thinking, sensing and regulating). The earlier a child is identified as autistic, the earlier supports and services are provided. This leads to better outcomes for the child[2] and family[3].
These benefits also flow from talking about the diagnosis. But what’s the best way to start that conversation? And what does your child need to know?
Getting in early
Children are receiving diagnoses as early as 12-18 months in our program[4], which helps maternal and child health nurses screen for autism during regular health checks.
Early identification of autism allows parents and professionals to learn how their child communicates as early as possible. Then they can match that child’s communication style to help them learn important, everyday life skills.
Rather than a focus on “changing” or “fixing” an autistic child to suit others, it’s better to encourage acceptance[5].
While some parents may worry about stigma and labelling[6], those within the Autistic community report that labelling happens regardless[7] of whether parents discuss diagnosis or not. It can instead take the form of harmful labels like “weird” or “strange”. In fact, others are more likely to form negative first impressions[8] when they do not know someone is autistic.
Parents may also think they need to wait until their child seems “ready” to understand a diagnosis. But this can lead to people not knowing they are autistic until many years after their diagnosis[9], and fuel feelings of shame.
An empowering truth
Telling children they are autistic as early as possible has several benefits.
Research[10] shows teenagers talk about themselves in a more positive way when their parents have had open conversations with them about being autistic, compared to those who did not. When this conversation is had earlier[11], autistic people have better quality of life and wellbeing in adulthood.
By understanding themselves at an earlier age, autistic people can feel empowered, advocate for themselves, and potentially gain access to supports and services earlier.
An open discussion around diagnosis also provides an earlier opportunity to “find a community”. Some autistic people say they feel[12] understood and accepted when they connect with other autistic people. This can increase positive identity[13] and self-esteem[14].
Read more: Autism is still underdiagnosed in girls and women. That can compound the challenges they face[16]
Having the chat – 3 ideas to guide parents
1. Check in with your own feelings
First, identify where you are at with your feelings around the diagnosis. You may still be coming to terms with this new path for your child and family – and this may make it difficult to have a discussion without becoming distressed or emotional. Wherever you are on your journey to acceptance, it’s important you are in a positive frame of mind when raising this[17] topic with your child.
If you’re not ready, you may choose to wait while you process your own emotions. But don’t wait too long, given the importance of knowing about an autism diagnosis early – especially if your child starts asking about[18] their differences compared to other children.
2. Build awareness into everyday talk
We recommend parents or carers start by talking about autism in everyday life. If your child is very young, not yet talking or communicating much, you could use autistic figures on TV, such as Julia on Sesame Street[19]. For example, you could say: “Did you see how Julia needed to have some quiet time, like you need sometimes? Julia is autistic, just like you.”
Older children and teens already know the world is diverse. They may have classmates or neighbours from different cultural backgrounds or have friends or family from the LGBTQIA+ community. You can start discussions about autism as part of neurodiversity[20]. For example, you could say: “There are different types of brains, just like there are different cultures and ways people express their gender.”
3. Choose a good time
For younger children, it’s best to incorporate everyday talk about autism during times they are calm and alert - for example, in the morning, after a nap, or during calming and wind-down routines like bath time or reading books before bed.
When explicitly telling your older child or teen they are autistic, you might want to do this during “low-demand” times such as during the school holidays. It may be easier for your child to take on new information when they are not busy with school and other activities.
Many autistic children may not have the privilege of fully understanding what being autistic means. This could include autistic children who also have a significant intellectual disability, who may not yet be able to communicate using speech, or who are not able to use assistive technology. However, parents of these children should not assume they have no understanding at all. Such conversations should be part of everyday life for all autistic children.
Julia is an autistic character on Sesame Street.Looking for more information
We recommend resources which describe autism using neutral language (such as “differences” and “challenges”) rather than those which use negative language (terms like “deficits” or “symptoms”). As well as reading material developed by professionals, parents can learn a lot from the lived experience[21] of autistic people.
Our colleague Raelene Dundon’s book[22] is a good example. The Brain Forest[23] by Sandhya Menon (also a colleague) is about different types of brains.
There are free online resources to help you and your child learn about neurodiversity[24]. Reframing Autism has developed resources on next steps[25] after a childhood diagnosis and ways to talk about it[26].
For older children and young teenagers, this self-help guide[27] is by autistic authors. And this video[28] by the Autistic Self-Advocacy Network, covers many of the traits, challenges and strengths of autistic people.
Ultimately, we want all children to accept themselves and their differences, and be happy about who they are. But this is a two-way street – society also needs to accept that being different is OK. This begins with parents and carers and their early conversations with children about their differences, and acceptance of themselves, regardless of their neurological make-up.
Read more: Kids on the autism spectrum experience more bullying. Schools can do something about it[29]
References
- ^ one out of every 50 children (www.cdc.gov)
- ^ child (pubmed.ncbi.nlm.nih.gov)
- ^ family (link.springer.com)
- ^ program (jamanetwork.com)
- ^ acceptance (link.springer.com)
- ^ worry about stigma and labelling (www.tandfonline.com)
- ^ labelling happens regardless (www.tandfonline.com)
- ^ negative first impressions (journals.sagepub.com)
- ^ years after their diagnosis (www.tandfonline.com)
- ^ Research (journals.sagepub.com)
- ^ conversation is had earlier (journals.sagepub.com)
- ^ say they feel (journals.sagepub.com)
- ^ positive identity (link.springer.com)
- ^ self-esteem (www.frontiersin.org)
- ^ Shutterstock (www.shutterstock.com)
- ^ Autism is still underdiagnosed in girls and women. That can compound the challenges they face (theconversation.com)
- ^ when raising this (journals.sagepub.com)
- ^ starts asking about (journals.sagepub.com)
- ^ Julia on Sesame Street (journals.sagepub.com)
- ^ neurodiversity (raisingchildren.net.au)
- ^ lived experience (www.frontiersin.org)
- ^ book (www.booktopia.com.au)
- ^ The Brain Forest (www.booktopia.com.au)
- ^ neurodiversity (raisingchildren.net.au)
- ^ next steps (reframingautism.org.au)
- ^ ways to talk about it (reframingautism.org.au)
- ^ self-help guide (www.booktopia.com.au)
- ^ this video (www.youtube.com)
- ^ Kids on the autism spectrum experience more bullying. Schools can do something about it (theconversation.com)
