How you tell your child about their autism diagnosis is very personal and specific to your child’s level of awareness and understanding. We’ve broken the process down to make it simple for you to work out how to undertake this daunting task.
Preparing to tell your child
There are essentially two ways of imparting the information: a formal way in which everything is pre-planned: the language thought about, materials (such as books and visuals) gathered and the place chosen (see later). The other way is more informal, with the conversation being child lead and answers are given in direct response to the child’s questioning (this is discussed more later). Even with the latter method, a little preparation and forethought can help to choose words / phrases that might be used, produce visuals and store them away, identify and obtain books that might support the message / help a child cope with their emotions, inform other key people that the child may turn to etc.
Points to consider:
- How does the child assimilate information? How do they understand the world around them? How well will they understand the ideas needed to explain the diagnosis (such as neurodiversity)? Are there stories or social stories that can help explain the ideas?
- How do you expect the child to react to the news? Initially they may express a range of emotions such as anger or relief, at least until they have come to terms with the diagnosis. Ensure that the child is able to do this without censorship or retribution. Alternatively they may not appear to react at all. Do not assume that they have not understood what you have said – they may need time to think about the information and formulate questions for later.
- Does the child have anxiety, sensory issues or other underlying conditions that could impact on their ability to understand the diagnosis? If possible, ensure that the discussion happens in an environment that is free from distractions.
- Does your child find it hard to leave the house, go to certain shops or learn in a certain way? Do you understand why? It may be possible to use the conversation to further your own understanding of the difficulties that the child experiences.
- What support will available for the child from family, friends and school after they have been told? Prepare the adults surrounding the child so that they can answer questions and react positively to behaviours linked to stress. This ensures that the child receives similar positive information from multiple sources, rather than conflicting information.
- Are there additional stresses such as ill family members or parents splitting up that may be affecting the child and impact on the timing of this conversation?
Think about the language and terminology that you could use, which the child may encounter day to day, and how it will be accepted. For example, the term ‘neurodiversity’ may be accepted easily as it describes how everyone thinks in different ways, rather than suggesting something is ‘wrong’. The term ‘neurotypical’ may be harder to accept as it describes what the autistic individual isn’t. In contrast, the term disability is often a hard one to accept because of all the connotations linked to it. For those who find understanding words difficult, simple language with few or no new terms is better than that which contains many new words that won’t be understood.
Choose your location
The choice of venue is very important. If the conversation is being engineered by an adult, choose a venue that:
- doesn’t have any prior associations / connotations
- that isn’t a favourite place
- that doesn’t trigger any sensory issues
- where there aren’t any time constraints (such as closing times, car parks etc)
- which doesn’t have an audience
- which is quiet
- which is safe (it may be that the child will want to have some time by themselves).
- where distractions are at a minimum
It may be that the child will come to associate the venue with negative emotions (as many parents have about the location of the actual diagnosis), and so be reluctant to revisit it in the future. Also consider what activities (e.g. walking, building a den, doing colouring, playing with Lego etc.) might help the conversation.
Who should tell them?
Decide who is the best person to initiate the conversation with the child. Is it a parent, who may be struggling emotionally to come to terms with the diagnosis themselves, or who may be seen and trusted by the child as their ‘safe person’. Alternatively is there another adult close to the child (who may be more ‘neutral’) to open the conversation? Remember that the initial conversation is unlikely to be the only one: it is more likely to open the door for a barrage of questions that will come once your child has had time to think about the idea. Such questions may arrive at the most inopportune moments for weeks to come!
Who else needs to know?
When preparing to tell your child about their diagnosis, remember to tell anyone working with your child on a regular basis (on a need to know basis), such as school, personal assistants, nursery workers etc. Your child may ask questions / bring the topic of autism up in conversation with others to see how they react, to test their ideas / perceptions of things, or just because an idea has occurred to them at that moment. Also, their behaviour may change. If people know that you have told your child about their diagnosis they will not be taken unawares, will know what is and isn’t suitable information to provide, and will be able to meet unexpected behaviour / questions appropriately.
Initiating the conversation
There are an infinite number of ways to open a conversation with a child about their diagnosis. For example, starting a discussion about things the child finds difficult (such as reading, writing, sitting still, answering questions etc.) can provide a way to illustrate how autism makes things harder for them. Talking about parties (for instance) may help children think about how they cope / don’t cope with noise (e.g. loud music, crowds, flashing lights, smells, conversations between groups, playing games etc.) Such a topic may also help them to understand how different people like / dislike different situations.
Discussing with a child why they stim, how it makes them feel and how it helps them to process information / emotions may help them understand that they process things differently to other people. Talking with your child about why they haven’t been invited to a party, why they struggle to understand the rules of playground games, why they need to have extra help in the classroom when others don’t or why they struggle to learn something (such as reading) as well as child XYZ may be difficult to start with. However, under the right circumstances (often chosen by the child themselves at a point when they are willing to talk), it may prove to be highly illuminating and informative for both the adult and the child.
Chatting about a child’s special interest such as trains, numbers or Dr Who offers another way to open the conversation, focusing on something the child understands and can relate to. Concentrating on your child’s strengths will make the conversation a more positive experience. It is likely that your child will remember this conversation for a long time to come, and so making it a positive experience will strongly influence how your child perceives themselves, how they understand what is going on and how they use their new knowledge to explain their experiences.
Another way to initiate the conversation may be to think about the benefits that a diagnosis can bring. For example, acknowledgment of a child’s difficulty with writing caused by autism can result in the provision of additional time in exams; identifying difficulties with fine motor skills can entitle the child to input from occupational therapist services. Additional support in school from agencies such as the Bristol Autism Team (which can only be accessed by those with a confirmed diagnosis) can change a child’s life at school immeasurably. Therefore, engineering a conversation about the difficulties experienced by the child and offering a way forward, a way round the problem may help the child to think positively about their situation.
After the conversation
It may help some children to find out about others that experience difficulties similar to themselves, to know they are not alone, and to know that the world as they know it does not end with a diagnosis of Autism. There are many individuals who have openly discussed their diagnosis of Autism / Asperger’s syndrome (Examples include Lionel Messi, Guy Martin, Chris Packham, Greta Thunberg), how it affects them and how it has turned them into the people they are today.
Closer to home, it may help to talk about family members or friends (with their permission) who may have autistic traits, a diagnosis, or who may need additional help with specific tasks such as writing, overcoming anxiety, making friends etc. Discussing the help needed by people known by your child may also help them understand that we are all different, that everyone has issues (some more obvious than others), and that some autistic traits can actually be extremely beneficial (such as good memory), etc.
- When to tell your child about their autism diagnosis
- Why it’s important to tell your child about their autism diagnosis