Rules is narrated by twelve-year-old Catherine, who does not have a disability herself but has a younger autistic brother, David. David routinely has to go to occupational therapy, which is how Catherine knows Jason, who is non-verbal and uses a wheelchair. While both David’s autism and Jason’s use of a wheelchair are frequently mentioned and remain important to the plot, Jason’s specific disability is never brought up. As readers, we follow Catherine during her summer vacation, as she gets to know Jason better, misses her best friend who is away for the entire break, and attempts to find a new friend in the girl who just moved next door.
There was a small of me that wanted to connect with Catherine. I remember being her age, the oldest sibling, trying to fit in at school and not being able to. Trying to connect with the new kids but just never getting it right. And that’s the part of the book that scares me.
This is a book for youth who have siblings with disabilities, or maybe friends, cousins, other people in their lives. This is a book written by an author who has an autistic child, but is not autistic herself, and admits that the inspiration for writing the book was her non-autistic daughter. That alone isn’t the problem: growing up, I would have loved to see more families like mine represented, and not just because of me and my disabilities. But there is a danger there.
Rules wants you to relate to Catherine. There are very few attempts to humanize David. Very few, and that’s an important point to raise. This is a book about a girl who has an autistic brother. The fact that she has an autistic brother is crucial to the plot, but her actual brother is really more of a plot device than anything else. Jason’s storyline is handled differently and a little better, but the emphasis is still on how Catherine’s friendship with Jason affects her. As she grows as a person, the view we as readers are given on Jason changes slightly, but not enough.
While Jason becomes more independent throughout the book, the description and treatment of David remains largely negative. It took me months to read the book because the writing of David’s character wasn’t just upsetting, it often left me triggered. David’s parents don’t respond to him when he uses echolalia, and reprimand Catherine for doing so. Instead of recognizing David’s communicating as valid, his family chooses to tell David that communication is only valid if done in a specific, non-autistic way. This sends both autistic and non-autistic readers the message that it is okay to ignore autistics communicating in the ways that work best for us. It reinforces the idea that there is one true way to communicate, when really there are a multitude and they are all valid. This attitude encourages the idea that autistic people need to be taught to be non-autistic, and is continued throughout the book with the list of rules Catherine keeps to teach David to “act proper.” She goes so far as to hand David a list of rules to follow when they go out to Jason’s house together. This treatment of David is unfortunately common, and it is not okay. As an autistic individual I cannot recommend a book to other autistic individuals looking for representation where the autistic character experiences so many of the awful experiences that many autistic people have to go through, often from his own family.
Throughout the book Catherine talks about wishing she had a normal brother—wishing David wasn’t autistic. The way this is written, along with Catherine’s constant use of rules in an effort to change David, is alarming. With a constant focus on the need for a “cure” for autism, something myself and a large portion of the autistic community are against, the usage of this in a children’s book honestly scares me. Rather than promoting acceptance, this is showing that autistics need to be changed or cured.
Jason is given better treatment than David: he is given more agency and slowly gains more independence. When we are first introduced to Jason, he is in a manual wheelchair that he cannot wheel himself, and is completely reliant on others for mobility. Mobility aids, especially power wheelchairs, are incredibly expensive, and I understand that not everyone is able to afford them or access funding. However, especially since Jason’s parents purchase a power wheelchair for him later on, it makes little sense that he starts off with no independent mobility. As a wheelchair user, my independent mobility is incredibly important to me. While I use a manual wheelchair, my impairments extend to my entire body, which can make it difficult to wheel my chair on my own, especially where I live. I do everything I can to maintain my ability to push my chair since I can’t afford a power chair. Without independent mobility, you can only go where others are willing to take you, when they want to take you. You become almost completely reliant on others. It is a very frustrating and difficult place to be put into, and I was so frustrated to see Jason put into this position.
Jason also uses a communication book to talk, as he is nonverbal, and routinely attends speech therapy. Although he seems to have no interest in speech therapy, and communicates fine without speech, the focus is on him learning to speak. That both David and Jason are forced to try to be as “normal” as possible, and that this is never criticized, is something that is harmful to disabled people, who experience this daily. Both are able to communicate fine in their own way, but instead of that being accepted, they are forced to find to communicate the way others around them prefer. While I am mostly verbal, I do struggle with speech at times, and I sometimes use my iPhone and various apps to communicate. I also repeat words/phrases often, something David does called echolalia, but which his family forbids him from doing.
Initially, Jason’s use of the communication book confused me, as comparatively low-cost technology for communication now exists, largely thanks to the iPad. However, this book was written prior to the release of the iPad, and communication devices were, and still are, incredibly expensive. The communication Jason book uses works well for him, and is realistic, although he initially has a limited set of cards until Catherine begins to make him more and expand his vocabulary.
Catherine’s role in Jason’s independence made me slightly uneasy, especially as she remained uncomfortable around him throughout. Although not intentionally, Catherine comes across almost as Jason’s “savior.” Prior to Catherine, Jason had no interest in independent mobility, and didn’t have the same vocabulary available to him. Because of this, Jason’s purpose is more to develop Catherine’s character than to be his own independent self.
The other part that made Rules so difficult to read as an autistic wheelchair user was watching Jason become more independent, more developed as his own character, seeing him humanized, and watching how none of that happened to David. It made me think of how many times my other friends in chairs have said awful things about autistic people.
I can understand why this book is so popular, as it fits into a lot of the stereotypes of autistics, and it goes along with the common practice of shifting focus away from actual autistic people to those around us.
But this book hurt to read. I worked really hard to get through it because I wanted to be able to say something about it, but in the end I just wanted to cry really hard for all the Davids out there. And the Jasons.