I had read a review of Rules that made me pretty hesitant to buy it, but since our school library has very few books featuring disabled or differently-abled characters when I saw it I decided to grab it, and read it myself before putting it into the collection. I asked my 12yr old to read it first, and warned her a review had said the treatment of the autistic child wasn’t good. (My youngest child is autistic, by the way, early verbal, with most of his speech scripted or echolalia).
My eldest really liked the book. She said she couldn’t see what the problem was, so I read it today while confined to bed. And I’m a little puzzled by the scathing review I read.
The argument is the main character’s brother is dehumanised. I don’t agree with this assessment at all. The book is squarely from the sister’s perspective, and as a 12yr old whose parents don’t really seem concerned about her needs because they’re overwhelmed by her brother’s needs, it’s clear she’s coping the best she can with a difficult situation, without really being adequate support by her parents. She confronts her dad toward the end over his priorities. Her “rules” seem to me to be an attempt to explain the unconscious rules of social behaviour that NT people seem to absorb, that are so difficult for autistic people to understand. Some of them are blatant rules, for sure, but the majority of them are designed to help David understand the ways other people behave, or as Catherine says, “…how the world works…” (p. 9).
The emphasis on the parents forbidding David’s scripting is overdone. Catherine mentions her parents don’t like David “borrowing” words but she happily goes along with it, and, without spoilers, she obviously understands it’s important to David and it’s important to her. There was one interaction between David and Catherine that made me a little teary, because I hope my daughters will have that kind of interaction with their brother when he’s older, if he continues with scripting (it was a GOOD interaction!). In one scene her mother says “He needs to speak his own words, and he won’t if you keep encouraging him to echo” (p. 111). Maybe it’s my own education and stubbornness that enables me to dismiss this kind of ignorance, but I don’t see this as a flaw in the book, I see it as a flaw in the parents and a flaw in the therapy approach. I know there are therapists who do discourage echolalia and scripting so I would imagine it could be upsetting thinking that this book also condones that kind of thinking. Ideas around speech therapy have changed though. It would be good to include a note at the end that it’s actually ok to use echolalia and scripting, and that attitudes have changed since 2006 (in fact I’m tempted to include such a note in this book when it’s ready for circulation).
Catherine is definitely guilty of micromanaging her brother and overreacting to little things. But I’ll admit sometimes I lose my filter too… I no longer have the capacity to filter out the things people won’t care about, and only focus on the things I really need to focus on. I fear that I end up being over-controlling of behaviour in strange places because I no longer know what’s appropriate behaviour for a 5yr old and I worry things might escalate. I think the story did a good job of illustrating that Catherine was overreacting, through the way other characters responded to her.
Probably the most upsetting thing Catherine thinks is that she wants to change her brother, so he is no longer autistic. She hides this as she knows she gets in trouble for saying that out loud. To be perfectly honest, I have no issue with this being explored in fiction. There would be NT siblings out there who are thinking and saying “I wish my brother/sister wasn’t autistic” and getting in trouble for it. I know how tiring it can be looking after an autistic child (and it’s not that anything he does is terrible), and I know how much my older kids are expected to just deal at times. It can be hard on siblings. And autism can be extra tricky to navigate as other people have unreasonable expectations because there is no visible marker of difference. I do wish Catherine had embraced David’s difference more by the end, but I do think the book ends on a hopeful note, that Catherine is beginning to learn to accept her brother and value what he brings to her life. I get that for people with a disability it would suck to have to read over and over again that people want to fix them, I really do get that. I have no perfect answer. I am a big believer in letting people have their feelings, especially when something does actually affect them, because learning to accept your crappy thoughts is the first step toward changing them. Denying thinking negative thoughts is counter-productive. However, as a counterbalance, we need more portrayals written by people with disabilities themselves.
I haven’t touched on the portrayal of Jason in this review as the criticisms I’ve read stem mostly from the portrayal of David. I totally agree that pushing people to communicate on our terms is disrespectful, and I thought the book itself criticised a particular kind of therapist in the speech therapist and Catherine and Jason’s assessment of her.
In short, people aren’t perfect, and non-autistic people are not perfect, either. I think Rules does a good job of showing how one NT sibling relates to her autistic brother in their family context. Yes, we definitely need more books written from the perspective of autistic people (preferably BY autistic people). I will be including Rules in the school collection and welcome suggestions of books (for primary school kids… 5-12yr olds) that feature autistic main characters too.