Over the last few weeks I have seen an increasing number of Facebook posts about how to talk to a child about being Autistic. As many of you would know, this is an area I am very passionate about and also the topic of my first book ‘Talking with your child about their Autism diagnosis’ so I wanted to join the conversation by sharing what I have learned through supporting parents to talk to their children about Autism as well as from my own personal experience.
One important way to learn about how to approach this conversation is to listen to Autistic voices, and there are some amazing Autistic adults and children that have shared their advice on what to tell a child about their diagnosis and the best way to approach the conversation. Children need to be supported to understand what Autism means for them in a positive and empowering way, and hearing about the lived experience of those in the Autistic community can help parents to do this. The ‘I Can Network’ recently collated some Autistic-led sources of information on this topic and you can find the link to their information below.
In addition to knowing what to tell their child and how to approach the conversation, one of the most common questions I am asked by parents is “When should I tell them?” There are different opinions regarding when a child should be told, but there is no ‘perfect time.’ For me, the ‘right time’ depends on the child and the family and what works best for them.
In deciding when to talk to your child about their diagnosis, there are a few things that can be helpful to consider.
Earlier is better.
Children don’t need to be told by a specific age, but it is generally thought that earlier is better. Obviously, there are big differences in the ages that individuals are diagnosed with Autism, some as young as 18 months and others not until they reach adolescence or adulthood, so the time that an individual can be told varies considerably. I think that the notion of telling a child or adolescent early in their journey allows for greater growth and understanding of what being Autistic means for them.
It is an ongoing process or journey.
When you introduce your child to their diagnosis, you are not going to sit down and have a five minute conversation with your child and then not have to talk about it again. The conversation, however you choose to start it, will likely be an ongoing process that evolves over time, as your child’s understanding of Autism develops.
My own journey discussing Autism with my son started when he was 5 and has taken many twists and turns over the years. Questions such as “Where is my Autism kept?”, and “Does my teacher know I have Autism?”, were answered as best I could when they were asked, with positivity and factual information. Now 16 years old, he has a much better understanding of his Autism, but there are probably more questions and a deeper understanding still to come.
As children get older, their questions are likely to be more complex, and it is important that they have people they can go to in order to receive reliable and factual information. Linking a child or adolescent with a mentor who is Autistic, to provide information that is real and relevant, can be really useful and empowering to the child. Seeking support from professionals with understanding and experience of Autism, and educating yourself about Autism and the experiences of Autistic children and adolescents, can also assist you to be able to answer questions when they come up or help find the answer if you don’t have it yourself.
Choose the time that is right for you, your child and your family.
There are several different approaches to choosing when to tell your child about their diagnosis. Some parents discuss Autism immediately, from the time of diagnosis, others may wait until their child is a certain age or developmental level, or starts to ask questions about differences between themselves and their peers. As I have said earlier, the right time depends on the individual, so I will discuss each of these approaches to help you find one that works best for you and your family.
Taking your cue from your child.
Some professionals and parents say that talking to your child about their diagnosis when they are aware of difference in themselves and other children, is a really good time.
When they are asking questions like, “Why do I have to go to appointments all the time?” they have obviously become aware that they are not doing some things the same as some other children. How great that awareness is may differ, but if they have that understanding and they’re curious about that, it is a really good opportunity to bring up the subject of Autism and talk to them about it. If they are asking questions, hopefully they are ready for whatever answers you have for them.
Alternatively, they might not be directly asking questions, but they might be noticing and commenting on differences between themselves and others, like that they are taller than some other kids at their kinder or some of the kids at school wear glasses and some don’t. Obviously, unlike Autism, those differences can be seen, but that awareness of physical differences gives you an opportunity to start to bring up why they themselves might be a bit different to other kids.
Talking about Autism from day one.
Another option is to talk about Autism from day one, from the time of diagnosis. The idea is to make the word ‘Autism’ or ‘Autistic’ just a part of everyday conversation and use it to describe things that the child is doing, to explain why they may or may not be able to do something or why they need to see professionals such as Psychologists and Speech Pathologists.
Stephen Shore, a professor of special education at Adelphi University, and an author and Autism advocate, described in an interview with Dr Neal Goodman from Boston Children’s Hospital that his parents just talked about his Autism in a matter-of-fact way from as long as he could remember.
“It was very matter of fact,” he explained. “My parents used my diagnosis to explain things to me, like ‘that’s why you’re going to the Putnam School’ or ‘that’s why you’re going to the doctor today.’” When asked about his initial reaction when his parents told him about his diagnosis, he said, “I saw Autism as no big deal. It was just matter-of-fact.”
Making the word ‘Autism’ part of your everyday vocabulary can help a child accept that being Autistic is just part of who they are and is certainly nothing to be scared or ashamed of. It can also assist other family members to understand the child’s strengths and challenges in relation to their Autism in a more normalised way.
Wait until your child has the capacity to understand the diagnosis.
For some parents, waiting for a time when their child is likely to understand what being Autistic means, feels like the best option. This will vary greatly between individuals, and will depend on the child or adolescent’s cognitive and language abilities, as well as how engaged and aware they are of their environment.
It is important to also consider what it is you want your child to understand. If you only want them to have an understanding that the word ‘Autistic’ applies to them in some way, then this may happen early in a child’s development. However, if you want your child to understand more specific information about Autism, such as its neurobiological basis and the pattern of behaviours that characterise it, then it is likely that waiting until your child is older will be necessary, and the information will need to be tailored to the child’s developmental level.
While individuals may vary in their ability to understand what Autism means for them, it is important that they are still given the opportunity to have awareness of being Autistic in whatever way they are able.
Involving your child in the diagnostic process.
For school-aged children and adolescents in particular, the diagnostic process can be experienced in vastly different ways. For some, it is an opportunity to do special activities with a professional that is totally engaged and interested in them. For others, it can be a source of stress and confusion, as the child is being ‘tested’ for a reason they may not fully understand.
Even when a child has not been told they are being assessed, they are often able to pick up on the fact that they are visiting multiple doctors and professionals and have a sense that there is something going on. A great example of this is an 8 year old girl who was coming to me for some help with social skills and anxiety. After a few sessions, her parents decided that they would like to do some more formal assessment to investigate a possible Autism diagnosis. As she was used to our sessions running in a particular way, I explained that we had some different things to do one session, and we completed a play-based Autism assessment. Even though no one had mentioned assessment to her, on the way home in the car she told her mother that she had done a test with me that day.
If your child is old enough to be aware of the process, talking to them about the fact that they are seeing some professionals to help figure out how they can be best supported at school and at home, or to assist them with some of the difficulties they may be experiencing, can be a great way to broach the topic of assessment. Then, if your child does receive an Autism diagnosis, you can further that discussion by explaining what kind of information was gathered during the assessment and what that means for them.
Whenever you decide to talk to your child about their diagnosis, it is important that you have accurate information and feel confident to give your child a positive message about being Autistic. Although the timing for the conversation may be different between families, children should always be told about their diagnosis. The decision about whether a child embraces their neurodivergence (or not) should always be their choice to make.
The I Can Network
Talking with your child about their Autism Diagnosis: A Parents’ Guide
Adapted and updated from Talking with your child about their Autism diagnosis: A Parents’ Guide, written by Raelene Dundon and published by Jessica Kingsley Publishers in 2017.