How to Explain Autism to Kids
When you got the diagnosis for your child, chances are they weren't actually in the room (and even if they were, it's unlikely the doctor was explaining autism to your child). The task of telling them they're autistic and explaining autism to them therefore falls to you...even if you don't understand autism well yourself yet. Moreover, you also get to tell their siblings. What do you do?
Our parents were also in this conundrum, and as a result, even though we both went to countless therapy sessions (for Caley, but I was dragged along), walked for autism, and had autism as part of our daily lives...neither of us actually understood what autism was. Our parents really didn't know how to explain it, so they never really taught us. I remember being hotly embarrassed whenever people asked me - what kind of sister was I, that I didn't even know what autism was? Even Caley herself only knew it had to do with her troubles with social skills. We wish we'd known more, but my parents didn't know how to explain it to us.
Our parents were also in this conundrum, and as a result, even though we both went to countless therapy sessions (for Caley, but I was dragged along), walked for autism, and had autism as part of our daily lives...neither of us actually understood what autism was. Our parents really didn't know how to explain it, so they never really taught us. I remember being hotly embarrassed whenever people asked me - what kind of sister was I, that I didn't even know what autism was? Even Caley herself only knew it had to do with her troubles with social skills. We wish we'd known more, but my parents didn't know how to explain it to us.
Should I Really Tell My Child They're Autistic?
In a word, yes. Even if you don't think they'll understand it, because, for one thing, your child almost certainly understands a lot more than you think, and for another, that's exactly when - ideally - you want to start. Before they understand, rather than after. Because if they don't hear about autism from you, they will inevitably hear about it from someone else. Better for you to start telling them before they understand, rather than risk having them hear about it for the first time in a negative context. Brooke's story illustrates that even when you don't think a child understands, starting to tell them early on about autism (in a self affirming way) will reap benefits down the road.
And, yes, you should tell them. Chavisory did an amazing job of explaining the rationale, which you should read if you're still questioning this, but it all comes down to this. Whatever really awesome reason you think you have not to tell your child - fear of bullying, fear of a child feeling different, fear of stigma, what have you - it's all overruled because, alas, your child runs an equal risk of feeling this way with or without a diagnosis. And most of the problems you may be thinking are reasons to not tell your child are actually improved, not made worse, by knowledge of an autism diagnosis (as Caley has discovered, a diagnosis can actually be a great shield from bullying).
Moreover, the most common experience autistic people report upon finding out their diagnosis is a feeling of immense relief. Though she says she wishes more had been explained to her, that simple knowledge of a diagnosis helped her. Caley learned she was autistic when she was 8, right after we got the diagnosis, and she likened it as akin to having a giant weight lift off of her. Like any autistic kid, she had always known she was different, even if she had no label for it (yes, your child knows that); having the diagnosis, however, taught her that her difference wasn't her fault. As a result of this benefit, Caley and I highly recommend telling your children (and their siblings) about their diagnosis.
So now that you're absolutely committed to telling your child about their diagnosis, what steps should you take? Here are the do's and don'ts.
And, yes, you should tell them. Chavisory did an amazing job of explaining the rationale, which you should read if you're still questioning this, but it all comes down to this. Whatever really awesome reason you think you have not to tell your child - fear of bullying, fear of a child feeling different, fear of stigma, what have you - it's all overruled because, alas, your child runs an equal risk of feeling this way with or without a diagnosis. And most of the problems you may be thinking are reasons to not tell your child are actually improved, not made worse, by knowledge of an autism diagnosis (as Caley has discovered, a diagnosis can actually be a great shield from bullying).
Moreover, the most common experience autistic people report upon finding out their diagnosis is a feeling of immense relief. Though she says she wishes more had been explained to her, that simple knowledge of a diagnosis helped her. Caley learned she was autistic when she was 8, right after we got the diagnosis, and she likened it as akin to having a giant weight lift off of her. Like any autistic kid, she had always known she was different, even if she had no label for it (yes, your child knows that); having the diagnosis, however, taught her that her difference wasn't her fault. As a result of this benefit, Caley and I highly recommend telling your children (and their siblings) about their diagnosis.
So now that you're absolutely committed to telling your child about their diagnosis, what steps should you take? Here are the do's and don'ts.
DO Learn About Autism Yourself
It is extremely hard to explain something you don't understand yourself. And even if you cobble together a decent explanation, if you don't understand it, when your child starts asking you questions you won't know how to answer them. So I highly recommend making sure your own understanding of autism from an autistic person's point of view is at a decent level before you tell them. (Unless, of course, this turns into a delaying tactic. You are never going to completely understand autism, all you need to be able to tell your child is a decent grasp on the concept.)
The Autistic Self Advocacy Network put together two hand outs/mini books explaining autism to newly diagnosed adults and autistic adolescents. I recommend reading the one for adults and going through the rest of our website here at Autism Spectrum Explained to bone up on your understanding of autism first, so you can answer any questions your children have.
After you have that down, I recommend reading/skimming the mini book for adolescents. Even if your children are too young to be able to read, reading it will give you a good idea for how to phrase and explain things when you talk to them. Better yet, the mini-books couch explanations in ways that are great for kids' self esteems, so their messages are good to emulate.
The Autistic Self Advocacy Network put together two hand outs/mini books explaining autism to newly diagnosed adults and autistic adolescents. I recommend reading the one for adults and going through the rest of our website here at Autism Spectrum Explained to bone up on your understanding of autism first, so you can answer any questions your children have.
After you have that down, I recommend reading/skimming the mini book for adolescents. Even if your children are too young to be able to read, reading it will give you a good idea for how to phrase and explain things when you talk to them. Better yet, the mini-books couch explanations in ways that are great for kids' self esteems, so their messages are good to emulate.
DO Use Metaphors and Picture Books
Kids get metaphors, and they're easy for parents to use, too. I really love this mom's hairdryer brain vs toaster brain explanation. She phrases it REALLY well, and answers common kid's questions in an accurate way that even younger children can understand. (If you're interested, she also explains echolalia, verbal stimming, sensory problems, and much, much more, also using some great metaphors). The nice thing about these explanations being out there on the internet is that you can take her explanations and adapt them into your own. For older children, you can also use the metaphor of a Mac/Apple vs PC operating system. They are different types of brains, good at different things, but they're both computers.
No, I am not connected to any of the books in any way, I just think they're great! The added benefit of using books, of course, is that if you're intimidated by the idea of having 'the autism talk' (which, really, that's half the problem right there), the books will guide you through it.
For younger children (and even older children - one of the books I found could go up to middle school or potentially high school age, depending on the child), picture books are a GREAT resource! I've read through many of them, and I've made a list of the top five - the ones I would recommend without reservations. Here they are in no particular order.
1. "Autism is...?"
Target audience: Young child or any child who prefers short picture books. This book is aimed specifically at younger children on the spectrum, but siblings and other young children who want to learn about autism would also benefit.
Description: "Autism is...?" is the story of a grandmother explaining autism to her autistic grandson. I think it talks about autism in a self affirming way, and unlike many other books is also quite general so many children on the spectrum should be able to relate, particularly sensory seekers. Because of these generalizations, and the fact that the author made it with her six year old grandson in mind (which means it has a focus on being fun and general more than explaining diagnostic features), it doesn't do the best job of giving all the details on what autism is. However, for the target audience I don't think that going into the details is necessary. The important thing is to give children a brief, self-esteem enhancing idea of what autism is, and if they have questions they can ask them and you can move into one of the more advanced books when you think they're ready.
2. Ian's Walk
Target audience: Siblings of children on the spectrum, although other children seeking to learn about autism would also learn from the book. The autistic child highlighted in the book appears to be non-speaking, or at least doesn't speak during the book, so it might be a particularly good fit for siblings of non-speaking children on the spectrum. There are more words in this book than "Autism Is...?", although it is still most definitely a picture book, so the age level/attention span of the child being read this may need to be a bit higher than "Autism Is...?", though young children would still benefit.
Description: I really loved Ian's Walk. It's actually got a nice story line which I think a lot of siblings can relate to - Ian's big sister starts out a bit annoyed with him, but when Ian gets lost she has to try to see things from his perspective, and appreciates his company more afterwards. I think it's a wonderful book for siblings and it may help them see their autistic brother or sister with more understanding.
3. Can I tell you about autism?
Target audience: The nice thing about this book is that you could adapt it to work for different age ranges/attention spans. There are pictures on every other page, so for shorter attention spans you could just go through and look at the pictures and read the caption underneath. For greater attention spans, you can read the entire story to them (there's a page of text that goes along with each picture), and get a lot more detail and explanation that way. Unfortunately, the pictures aren't in color, so children who need engaging pictures to be interested may not appreciate this book.
Another nice thing about the book is that it's not just for children. The first half of the book is the story where autism is explained for children. The second half of the book is a parent's section with advice about helping children on the spectrum. I thought that was an unexpected bonus!
For children previously diagnosed as having Asperger's Syndrome, or who would still fit that profile even if the name wasn't used, there's a book specific to that which the same authors put out called "Can I tell you about Asperger Syndrome?" which you could use instead, or better yet, in addition to "Can I tell you about autism?" to help children understand the diversity of the spectrum. You can simply preface it by saying Asperger's Syndrome is something people used to call some autistic people, and use that for a bouncing off point to talk about the autism spectrum.
Description: Basically in the book a boy about eight talks about his difficulties with different situations. This book does the best job of describing the details of what it's like to be autistic of any of the books I read, and it explicitly states at the beginning that not everything that Tom (the character) feels is going to apply to all autistic people. I wish it had something positive about being autistic in it - it's not that it's a negative book, but it doesn't do as much to encourage pride in oneself as I think the other books do. For that reason, I'd combine it with Different Like Me, the next book I'm going to highlight.
4. Different Like Me: My Book of Autism Heroes
Target audience: This is intended for older children on the spectrum, potentially those with longer attention spans, but the same as "Can I tell you about autism?" I think you could adapt it to fit shorter attention spans. The book is broken up with a picture on one page and a story about that famous autistic person on the other. As a result, you could simply read one at a time to break it up for children with shorter attention spans, or you could just go through the book and talk about the pictures.
You can adapt the book to make it fit a variety of needs, and I love that. This book could go as far down as around age seven or eight (if you break it up and the child likes books), and safely as far up as middle school. (Although I'll be honest, I myself enjoyed the read and learned a lot, so it could potentially go up even higher than that.) Though it's made for children on the spectrum, I think siblings and any other children who are interested would definitely benefit.
Description:
So often autistic children can feel alone, like there's no one else like them. All the books help with that to some degree, but this book does the best job. It gives some really great autistic role models for kids to see that not only are they not alone, but there are some pretty cool autistic people out there! I love it, it's absolutely fantastic, and I really think most all kids on the spectrum would benefit from it.
Einstein, Fossey, Warhol, Banneker, Kaufman, Kandinsky, Julia Bowman Robinson, Piet Mondrian, Turing, Sophie Germain, Lewis Carroll, Tesla, Paul Erdos, Glenn Gould, Kant, McClintock, Cornell, Hans Christian Andersen, and Temple Grandin are highlighted within. I love how there are lots of examples, not just of men, but of women as well.
No, I am not connected to any of the books in any way, I just think they're great! The added benefit of using books, of course, is that if you're intimidated by the idea of having 'the autism talk' (which, really, that's half the problem right there), the books will guide you through it.
For younger children (and even older children - one of the books I found could go up to middle school or potentially high school age, depending on the child), picture books are a GREAT resource! I've read through many of them, and I've made a list of the top five - the ones I would recommend without reservations. Here they are in no particular order.
1. "Autism is...?"
Target audience: Young child or any child who prefers short picture books. This book is aimed specifically at younger children on the spectrum, but siblings and other young children who want to learn about autism would also benefit.
Description: "Autism is...?" is the story of a grandmother explaining autism to her autistic grandson. I think it talks about autism in a self affirming way, and unlike many other books is also quite general so many children on the spectrum should be able to relate, particularly sensory seekers. Because of these generalizations, and the fact that the author made it with her six year old grandson in mind (which means it has a focus on being fun and general more than explaining diagnostic features), it doesn't do the best job of giving all the details on what autism is. However, for the target audience I don't think that going into the details is necessary. The important thing is to give children a brief, self-esteem enhancing idea of what autism is, and if they have questions they can ask them and you can move into one of the more advanced books when you think they're ready.
2. Ian's Walk
Target audience: Siblings of children on the spectrum, although other children seeking to learn about autism would also learn from the book. The autistic child highlighted in the book appears to be non-speaking, or at least doesn't speak during the book, so it might be a particularly good fit for siblings of non-speaking children on the spectrum. There are more words in this book than "Autism Is...?", although it is still most definitely a picture book, so the age level/attention span of the child being read this may need to be a bit higher than "Autism Is...?", though young children would still benefit.
Description: I really loved Ian's Walk. It's actually got a nice story line which I think a lot of siblings can relate to - Ian's big sister starts out a bit annoyed with him, but when Ian gets lost she has to try to see things from his perspective, and appreciates his company more afterwards. I think it's a wonderful book for siblings and it may help them see their autistic brother or sister with more understanding.
3. Can I tell you about autism?
Target audience: The nice thing about this book is that you could adapt it to work for different age ranges/attention spans. There are pictures on every other page, so for shorter attention spans you could just go through and look at the pictures and read the caption underneath. For greater attention spans, you can read the entire story to them (there's a page of text that goes along with each picture), and get a lot more detail and explanation that way. Unfortunately, the pictures aren't in color, so children who need engaging pictures to be interested may not appreciate this book.
Another nice thing about the book is that it's not just for children. The first half of the book is the story where autism is explained for children. The second half of the book is a parent's section with advice about helping children on the spectrum. I thought that was an unexpected bonus!
For children previously diagnosed as having Asperger's Syndrome, or who would still fit that profile even if the name wasn't used, there's a book specific to that which the same authors put out called "Can I tell you about Asperger Syndrome?" which you could use instead, or better yet, in addition to "Can I tell you about autism?" to help children understand the diversity of the spectrum. You can simply preface it by saying Asperger's Syndrome is something people used to call some autistic people, and use that for a bouncing off point to talk about the autism spectrum.
Description: Basically in the book a boy about eight talks about his difficulties with different situations. This book does the best job of describing the details of what it's like to be autistic of any of the books I read, and it explicitly states at the beginning that not everything that Tom (the character) feels is going to apply to all autistic people. I wish it had something positive about being autistic in it - it's not that it's a negative book, but it doesn't do as much to encourage pride in oneself as I think the other books do. For that reason, I'd combine it with Different Like Me, the next book I'm going to highlight.
4. Different Like Me: My Book of Autism Heroes
Target audience: This is intended for older children on the spectrum, potentially those with longer attention spans, but the same as "Can I tell you about autism?" I think you could adapt it to fit shorter attention spans. The book is broken up with a picture on one page and a story about that famous autistic person on the other. As a result, you could simply read one at a time to break it up for children with shorter attention spans, or you could just go through the book and talk about the pictures.
You can adapt the book to make it fit a variety of needs, and I love that. This book could go as far down as around age seven or eight (if you break it up and the child likes books), and safely as far up as middle school. (Although I'll be honest, I myself enjoyed the read and learned a lot, so it could potentially go up even higher than that.) Though it's made for children on the spectrum, I think siblings and any other children who are interested would definitely benefit.
Description:
So often autistic children can feel alone, like there's no one else like them. All the books help with that to some degree, but this book does the best job. It gives some really great autistic role models for kids to see that not only are they not alone, but there are some pretty cool autistic people out there! I love it, it's absolutely fantastic, and I really think most all kids on the spectrum would benefit from it.
Einstein, Fossey, Warhol, Banneker, Kaufman, Kandinsky, Julia Bowman Robinson, Piet Mondrian, Turing, Sophie Germain, Lewis Carroll, Tesla, Paul Erdos, Glenn Gould, Kant, McClintock, Cornell, Hans Christian Andersen, and Temple Grandin are highlighted within. I love how there are lots of examples, not just of men, but of women as well.
5. Autistic Planet
Target Audience:
For children with shorter attention spans who like lots of pictures. There are full page pictures in this book, few words on each page, and the lines rhyme!
Description:
I think this book is a great introduction to seeing the difficulties autistic people face as difficulties brought about by the way society is constructed, rather than the fault of the person themselves. I think it's also a great way to start a conversation with your child. After you end the book, you could ask 'what does your autistic planet look like' and maybe get more insight into your child's needs and view of the world.
Target Audience:
For children with shorter attention spans who like lots of pictures. There are full page pictures in this book, few words on each page, and the lines rhyme!
Description:
I think this book is a great introduction to seeing the difficulties autistic people face as difficulties brought about by the way society is constructed, rather than the fault of the person themselves. I think it's also a great way to start a conversation with your child. After you end the book, you could ask 'what does your autistic planet look like' and maybe get more insight into your child's needs and view of the world.
DON'T Present Autism as Something Negative
We also recommend speaking openly about autism, not in hushed tones, nor telling the kids it's a secret (as Caley and I were told). And I know it's going to be hard, but try not to set autism up as being a bad thing - when you talk to your child about autism, 'different, not less' should be your mantra. Because you are your child's guide and as soon as anything negative is said or implied, your children are learning that being autistic (ie, being the way they are) is something to be ashamed of, which is the last thing any parent wants their children to feel.
DO Refer Your Child to More Resources
The last thing you can do is refer your children to a website they can learn from themselves! I put together a website explaining autism for kids - you can either go through it with them. I also designed the website to be good for helping siblings understand autism, too, and tried to make it as well as I could to hold attention spans (which means LOTS of fun videos and pictures!). The website is called Autism Spectrum Explained for Kids, and it's set up in a self-affirming way that's easy to understand. Check it out and see if you think it would help your child(ren)!
If you trust them browsing online, still older children may benefit from the autistic discussion forum Wrongplanet.net. They have a kids zone, which may be good for children who aren't quite prepared for the rest of the forum, an adolescent zone, and the rest of it kids who are in the upper grades of high school would likely benefit from. Wrongplanet is a place with a gathering of their autistic peers, a place to ask questions and get advice and just feel accepted. For that reason, I highly recommend it. (I recommend it for you, too - they have a great parent's section, full of lots of advice. It's a great place to ask questions!) [Note: A message will come up when you click on the link saying they're checking your browser. That's just an extra security step they use, it's perfectly normal and is not a sign of harm to your computer.]
And, of course, if you think your child would like it you can always pair them up with an autistic penpal! We have a program here at ASE that does that, you can learn more about it here.
If you trust them browsing online, still older children may benefit from the autistic discussion forum Wrongplanet.net. They have a kids zone, which may be good for children who aren't quite prepared for the rest of the forum, an adolescent zone, and the rest of it kids who are in the upper grades of high school would likely benefit from. Wrongplanet is a place with a gathering of their autistic peers, a place to ask questions and get advice and just feel accepted. For that reason, I highly recommend it. (I recommend it for you, too - they have a great parent's section, full of lots of advice. It's a great place to ask questions!) [Note: A message will come up when you click on the link saying they're checking your browser. That's just an extra security step they use, it's perfectly normal and is not a sign of harm to your computer.]
And, of course, if you think your child would like it you can always pair them up with an autistic penpal! We have a program here at ASE that does that, you can learn more about it here.
The Point
These are just some guidelines to help you, but really, the point of all of this is simply that you need to tell your child. As soon as you can in a not-negative way. It doesn't have to be a perfect explanation - as you'll note, Caley only had the vaguest of ideas what autism was and still reaped benefits from the knowledge. The important thing is just to tell them, and hopefully now you're better prepared to do so.
