Autism is quite the complex disability to understand. Well I tend to think so at times.
Perhaps it’s because My daughter also has a diagnosis of Cerebral Palsy (CP) and I feel like you sort of know what to expect each day. I guess it’s also more visible so others can also appreciate the challenges that my daughter faces, whereas Autism can be seen as an ‘invisible’ disability that many aren’t able to recognise or understand. Don’t get me wrong I’m no Wizz on all things CP related and have days where I’m baffled and think ‘why is she falling so much today?’ or ‘why are her legs so stiff?’ but for most of it I know what to expect.
Whereas autism I literally wake up each day not knowing what to anticipate, what the day will look like, and a lot of the time is spent feeling like I’m walking on eggshells. There are times when my daughter may cope with sensory triggers being thrown at her and then other days she explodes if I simply don’t answer a question fast enough. I’m always having moments where I feel at a loss and not sure how to best help her or understand and navigate the autism journey, so I can only imagine how intense it must feel for my two daughters at times.
With my eldest daughter we often talk about her sister’s autism and have done so for many years. It was just a natural progression of chats that evolved over time. I am grateful that we did this as she knows she can talk to us about anything related to her sister’s diagnosis, particularly if she is struggling with an aspect of it. She feels comfortable knowing that she can voice any concerns or opinions, is extremely tuned into her sister’s needs, and has more patience with difficult behaviours.
A few weeks ago, my youngest daughter who is 4 was chatting away about all the babies she was going to have when she was a ‘grown up mum’ and how her and all her kids were going to live with me too. She then says, “But don’t worry mum my babies won’t be naughty like Willow’. It was then that it hit me. I hadn’t intentionally made it a priority to discuss autism with her. I was having chats with my eldest already by this age. I guess I just assumed we are quite open with it and my youngest had an understanding.
A bit ridiculous of me really, I mean I’m 36 years of age and still very much learning about autism but just ‘assume’ my 4-year-old has an idea of what it’s all about (insert forehead slap emoji here). So, the process began of explaining the diagnosis in an age-appropriate way.
Tips for explaining autism to younger siblings
Find out what they already know.
This is a great way to gauge their current understanding so you can introduce autism and build from there. I asked my daughter is she knew what Autism was and if she knew that Willow had autism? She said no but said she knows cerebral palsy means ‘Willow can’t walk or use her hands’ she explained. This was a great starting point for us to be able to relate one diagnosis to the other.
Use age-appropriate Language.
Ok, so it’s given you’re not going to get too complicated with the explanation and throw out words like neurodiversity and self-regulation. It’s hard to keep the attention of young children at the best of times, let alone when you are discussing something so complexed. For my daughter I think I said something along the lines of “Do you know how Willows cerebral palsy makes it tricky for her to use body? Well, her autism means that sometimes she can get really upset about some things”. This was the gist of the language and conversations we had.
Talk about their strengths and challenges.
Again, this would need to be age appropriate, but I often mention things like ‘Willow will help you with learning your numbers she loves numbers’, or the other day when we were playing a game or memory I said, ‘Indy you can go on Willows team, did you know that her autism means that she has a super amazing memory?’ Understandably strengths for each child would look different, so I ensure I try to acknowledge that these are Willows strengths, and everyone is different.
I also like to discuss challenges so she understands why Willow may have difficulty with some things and why she may react some ways.
Explain that it’s a diagnosis and not an illness.
It can be quite a tricky concept to grasp when kiddies are little, and I know often (especially younger children) can get confused by what it all means. I remember when I explained Willows autism to her cousin once she looked so concerned and then asked, “Will I get autism too?” A perfectly normal response which is important to acknowledge. I think it’s natural for young children to worry that they will ‘catch autism’. I ensured to my niece that it doesn’t work like that and that having autism isn’t a bad or scary thing that she should worry about, rather it just means Willows brain works a little bit differently and that everyone is different in some ways.
Encourage them to ask questions.
I think this is important to reassure that their sibling’s autism is something that doesn’t have to be a one conversation type thing. Ensuring them that learning about autism is great and means that they want to understand. Encouraging them to ask questions could give the insight that they need to further comprehend their sibling’s diagnosis.
I think a good starting step it to assure them that many people all over the world have autism which means many children just like them also have a brother or sister that they love who has autism. It could also be useful to explain that they aren’t in pain if they are upset (having a meltdown) and that it doesn’t change anything for their family.
Use books and YouTube clips.
Not quite sure what to say and how to explain autism? There are so many fantastic books out there that you could add to the bookshelf and sometimes stories can be the best teachers! Here are a few.
- ‘All my stripes’ by Shaina Rudolph and Alison Singer
- ‘The superhero brain’ by Christel Land
- ‘Andy and his yellow frisbee’ by Mary Thompson
- ‘Why does Izzy cover her ears?’ by Jennifer Veenendall
- ‘My brother Charlie’ by Holly Robinson and Ryan Elizabeth Peete
- ‘The autism acceptance book’ by Ellen Sabin
- ‘Since we’re friends’ by Celeste Shally and David Harrington
- ‘A friend like Simon’ by Kate Gaynor
- ‘Leah’s voice’ by Leah DeMonia
- ‘Noah chases the wind’ by Michelle Worthington
There are many YouTube clips out there that could assist in bringing autism understanding to young children, here are a few that I like.
- ‘Amazing things happen’ Alexander Amelines
- ‘Autism explained for kids’ House of the spirits
- ‘Marvellous Max’ Autism awareness for kids
- ‘Amazing kids’ Amazing things project
Create a social story.
I have made many social stories for my autistic daughter, and she always responds so well to them. Social stories can be beneficial for all children as it helps bring clarity to important topics and can ease anxieties. Making your own social stories means that you can use photos of the family and wording/experiences that your child can understand and relate to.
Benefits from explaining autism to younger siblings
I’m sure many families could be unsure if they want to discuss their child’s autism with their siblings and some even may make a choice not to, there is no right or wrong way. But, for us it has been the right decision. I feel that by discussing Willows autism in an open way her sisters don’t feel like it’s something that we are hiding and that they should feel they need to hide from others or avoid talking about. I want them to understand that autism is not a negative thing or something they should ever feel ashamed or embarrassed by. Here are some other positives that I have found from explaining autism to siblings.
- can assure them that their sibling’s autism isn’t something for them to be worried about
- help them to feel more comfortable within the family dynamic
- can create a closer bond
- helps them understand their sibling
- reduce any feelings of anxiety around challenging emotions and behaviours
- give them some assurance for challenging meltdown moments
For us this is an ongoing discussion that will constantly evolve and continue. Its normal that children will have different reactions and feelings towards their sibling’s autism, and this will continue to change throughout the years. I have always been honest with my girls (particularly my eldest) and discuss how sometimes autism can be hard and that sometimes their sister does cry a lot and often gets angry at them. I acknowledge this so they too feel that they can talk openly to me about everything as well. I also recognise that their sisters’ needs do take up a lot of time and try to intentionally make some special time for them so they don’t start to feel resentful towards their sisters diagnosis.