What do you think?
Rate this book
256 pages, Hardcover
First published August 1, 2015
Prizant’s primary message, that autistic people are fully human, and as such, autistic behavior is human behavior, is critically important. So is his insistence that before trying to get rid of unusual behavior, it is critical to ask what that behavior means to the person doing it. His willingness to acknowledge that extinguishing atypical behavior can be the wrong approach is incredibly rare and refreshing. Compared to the vast majority of autism books written by and for parents and professionals, this approach is so much of an improvement that I can’t say I don’t recommend Uniquely Human.
Where I struggle more is with some of the basic assumptions that Prizant makes about what autism is. In large part, he defines autism as a “disorder of trust,” with disruptions in three particular areas: trust in one’s body, trust in one’s environment, and (he considers this most significant) trust in other people. He assumes that the primary reason trust in people is particularly difficult is an innate inability to read body language and understand the norms that guide everyday social interactions.
Of course, this is almost certainly true (at least in part), for at least some (possibly many) autistic people. It is also almost certainly an overgeneralization. People with disabilities are not treated in the same way as people without disabilities, no matter how hard those around them try to make it so. If an autistic person with significant speech difficulties picks up social rules from watching interactions between non-disabled peers, then tries to apply them herself, the results will not be the same. This is true no matter how good her comprehension is. Even people with more subtle impairments can stand out as different in ways that affect others’ responses to them. For many autistic people, motor, sensory, cognitive and/or language impairments may be more fundamental, with social impairments occurring more as a consequence. For others, these impairments may be misinterpreted as being primarily social. In any case, the response that other people have to disability, and the stress of being routinely misunderstood are certainly reason enough to lose trust in other people.
I worry that Prizant’s seeming immediate acceptance that autism is primarily a social disability makes it far too easy to prematurely decide the answer has been reached, after following his instructions to ask “why?” He provides an example of a child who solves an algebra problem, but refuses to explain how he got his answer. His assumption is that the child simply lacks an innate desire to please the teacher. While that may be better than assuming the child is acting out of intentional defiance, there are a number of other plausible explanations. For example, there is a considerable difference between the internal logic of solving a math problem and the syntax and exchange of conversational speech. In childhood and adolescence, I always found it difficult, sometimes downright painful to bridge the gap between the two, and it could become impossible under pressure. I was also very deeply concerned about pleasing my teachers. Assuming my primary problem was a lack of social motivation would not have been a kindness.
Overall, the practical suggestions that come out of Prizant’s use of the dysregulation model are great. Not being constantly in a kid’s face, sincerely listening to and trying to understand communication attempts (whether by speech, AAC, or body language), providing opportunities to make authentic choices, not attempting to get rid of harmless but atypical behavior that makes life easier — all of this should go without saying. It doesn’t, and I’m so glad that somebody with professional clout did say it. The main place I’m leery of his suggestions is the way he talks about using children’s interests as lures. Using the things that someone cares most about to tempt them into doing the things that are most difficult and painful for them is inherently risky. I don’t think Prizant fully appreciates that.
What I'm less fond of is that it seems Prizant only views atypical behavior as legitimate when it's a coping mechanism. Sometimes, the way I move my hands is because of joy. Or because I’m tracing the contour of something I see that I’m interested in. I’m okay with that. I don’t want to get rid of it. (Trying would be dysregulating, but that doesn’t mean that I did it in the first place because of dysregulation.) If that makes some people not interested in getting to know me, fine. They can go their way. I’ll go mine. It wouldn’t have worked out well for us to be friends in the long run anyway.
(There’s also a serious issue with oversimplification and conflation of “unacceptable” versus “unexpected” behavior. I think it’s coming from an over-reliance on the Social Thinking model. Behavior that violates completely reasonable boundaries and behavior that just looks weird are treated as basically equivalent.)
Overall, I can’t not recommend this book, because he gives concrete examples that show that treating autistic people as real people worthy of respect is a workable option in education and therapy. That’s still far too rare. I just have some serious reservations as well.