“I actually wish I knew even earlier, when you first found out. Just to be over and done with it. It’s not even really a big deal, it helps me know why I do things, like when I am angry and anxious".
My (7yr old) daughter’s response when I asked what she thought about knowing she has autism, quite the wise soul. But she is right, I think her knowing from such an early age has made it seem like it's not a huge deal. We weren’t keeping it from her, it wasn’t a secret - simply just a part of what makes her who she is.
Knowing when or how to tell your child about their autism diagnosis can be quite the overwhelming and stressful experience for some families. Completely understandable and I think a lot of the fears around this stem from;
-Worrying their child won’t understand
-They feel like their child will be labelled and others won’t be able to see behind the diagnosis
-That their child may feel upset, angry and confused
-Others may use it as an excuse as to why they can’t do something
-They may feel that it's an excuse for their child to have a ‘why bother’ attitude
However, some may pose the questions ‘Why wouldn’t you tell them? Do you feel guilty? Have you not accepted it? But each family is different and whatever the answers are to these questions is ok. Sometimes it is hard to come to terms with our child’s diagnosis ourselves. I think it is imperative that we truly have acceptance and can embrace our child’s unique mind before expecting them to understand, so take time to be gentle on yourself and to process it first.
My daughter was diagnosed with autism not too long after she turned 3 and over the years, I have had so many – ‘oh this makes sense now’ moments. Because getting that diagnosis opens up a whole new world of information and resources that allow you to better understand your child. So, I can only imagine how beneficial having a little bit of an understanding of Autism is to her
I can’t actually pinpoint when or how we told her. I know it wasn’t a “Sit down mummy and daddy have something to tell you, you’re autistic” type moment. It was more a natural progression that organically happened.
Casually mentioning things over time like “I know you like chewing things but let's chew our therapy toys to help calm us” to more direct things like “Sometimes your autism means that you worry if things are different and that is ok, we talk about it and find ways to make changes easier”. It was only the other day when I started to play a memory game with my girls and my eldest daughter very casually said “Oh I bet Willow's autism will make her so good at this game!” No one thought anything of this comment, especially Willow. She smiled and competitiveness gleamed in her eyes, she just saw it as a compliment really.
There is actually a lot of information about the topic and the two main points that seem to be a common theme are, to tell your child sooner rather than later and that it can be a relief when autistic individuals find out.
While I am sure it's not a jumping for joy ‘woohoo’ party moment! There are so many positive benefits for an autistic child learning about their diagnosis at the earliest age appropriate time.
-It gives them some information about their diagnosis therefore creates an understanding of certain behaviours.
-It can be the first step in encouraging them to be proud of their neurodivergence
-Normalizes behaviours to have a label for it.
-Knowing means they can design a lifestyle that is right for them, it pushes away that constant need to have to fit into a specific lifestyle that doesn’t feel natural and authentic.
-It can add motivation to get through challenges.
-They would prefer hearing it from family first rather than someone else, the latter could cause confusion.
-It may be harder to hear the older they get, knowing from a younger age helps to normalise their disability for them.
-Knowing can be a transformative experience and that makes them feel understood.
-Can be a nice feeling knowing that there are so many other people all over the world with minds that work just like theirs.
-Teaches them to advocate for themselves.
-Allows them to learn more about themselves.
-Teaches them that they don’t need to mask their personalities.
When should I tell my child about their diagnosis?
It's thought that telling your child earlier rather than later is best. I would have to agree with this. I know with my daughter if we waited until she was older, she would probably be pretty angry and confused, worried that she was different. But because she has grown up knowing, while finding out more as she has gotten older it hasn’t been a huge deal for her. I feel it has taught her acceptance and created positive self-awareness.
There are many factors to consider before telling your child about their diagnosis such as age, ability and social awareness. It's important to build on dialogue when they begin to ask questions. Once they begin to notice differences in their behaviours, interests and characteristics then that of their peers it’s a pretty good indication that they are ready and need to hear about their diagnosis.
Before telling your child make sure you are in the right headspace, are positive and ready to answer any hard questions that may come your way.
Tips to consider
-Focus on strengths, challenges and differences that are relevant and unique to them, use concrete examples. “Do you know how sometimes it can be tricky for you to play happily with your sisters when the game changes? This is because your autism makes your brain work a bit differently and you like to play the same thing over and over. Not everyone likes to do this though and that is ok”
-Reassure them that there are so many others that have autism and that is extremely common, so they aren’t alone in the way they think and act.
-Don’t overload with information. It will be a continued conversation and information will be naturally added overtime. It is definitely not just a one time chat.
-Set a positive tone about their uniqueness
-Reassure them that yes, they are different but so is everyone. Their diagnoses does not make them any different to anyone else. Give examples that they can relate to like sharing the different traits, characteristics and behaviours of the people in your family.
-Let it be a natural progression for them to casually learn more about as time goes on.
I believe not making a big deal out of it shows them that their diagnosis doesn’t define them, but just a part of them that makes them unique.
If you are struggling with how to start the initial dialogue perhaps seek advice from a professional in the field. Introducing books, and Tv shows that feature different disabilities (especially autism) can also be a natural progression into open discussions. There are also a lot of social programs as part of early interventions and support to children with autism. Introducing your child to other children with the same diagnosis can help normalise it for them.
It is so valuable for children with autism to be understood for who they are so what better way to lead this by giving them information that allows them to recognise and appreciate themselves.
Remember self-knowledge equals self-acceptance.