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Concepts of NormalityReview - Concepts of Normality
The Autistic and Typical Spectrum
by Wendy Lawson
Jessica Kingsley Publishers, 2008
Review by Guy Dove, Ph.D.
Jun 16th 2009 (Volume 13, Issue 25)

In Concepts of Normality: The Autistic and Typical Spectrum, Wendy Lawson makes an impassioned appeal for treating individuals on the autistic spectrum with respect and a spirit of inclusiveness. Lawson is an autistic individual who has written a number of semi-autobiographical books on issues surrounding the treatment of Autism. She writes in an accessible and succinct conversational style that is not burdened by academic jargon. This particular book, though, is somewhat uneven. It consists of ten short chapters that vary in terms of quality and tone. Two are contributions from other authors: Dinah Murray (a frequent collaborator with Lawson) and Estée Klar-Wolfond (a mother of a son with Autism and the founder and executive director of The Autism Acceptance Project). These chapters are more strident than Lawson's and, to my mind, expose some of the dangers inherent in her project.

Lawson's central thesis is that we should cease to view Autism as a medical disorder and instead accept it as a natural part of human diversity. We should, in other words, see it as an alternative way of living. She attempts to defend this thesis by means of a critical analysis of the concept of normality. Her argument turns on three claims. The first is that our concept of normal is an arbitrary social construct. As the title of one of her subsections puts it, "Normal yesterday may not be normal today." The second is that the current Western conception of normal is harmful because it creates an unnecessary distance between AS (Autistic Spectrum) individuals and, as she puts it, TS (Typical Spectrum) individuals. The third is that expanding our conception of normal to include AS individuals would be beneficial for all.

The book is most powerful when Lawson speaks from her own experience. She eloquently expresses the hurt and pain that she has felt as a result of the pejorative terms with which many people discuss Autism. Building on her own experience, she shows how expectations that AS individuals should strive to act as normal as possible may lead to counterproductive therapeutic strategies. She also makes a convincing case that some of the traits associated with Autism -- such as having "restricted" interests -- can be seen as beneficial, both with respect the well-being of AS individuals themselves and society as a whole. She also offers a number of helpful tips with regard to accommodating and aiding high functioning AS individuals in areas ranging from the art of conversation to the expression of sexuality.

The idea that we should view AS individuals as part of the natural diversity of humanity is appealing and warrants consideration. However, Lawson's arguments have a number of flaws. For one, she relies too often on unsupported generalizations. Consider the following passage from the concluding chapter:

Most individuals, whether typical or autistic probably start their days with familiar routines. Why do we do this? It's because we each have been taught that this is usual/normal practice. It's usual/normal to get up after sleeping. It's usual/normal to have something to drink and eat, or simply get washed and dressed.

The obvious problem is that people do not wake up and go through familiar routines simply because they have been taught that it is the usual/normal thing to do. Matters of physiology, habit and personality often come into play. Although this may seem like nitpicking, one cannot simply brush aside such misstatements because so much of Lawson's argument depends on the idea that normality is socially constructed.

There are also good reasons to question Lawson's overall project. While it seems eminently beneficial to challenge and even extend current notions of normality, it also seems clear that this project can go too far. Consider someone with advanced Alzheimer's disease. For such an individual, aggression, aphasia, confusion, long-term memory loss, and social withdrawal would all be normal. All of this should clearly be taken into effect when socially interacting with her, but it is decidedly not an argument against attempting to cure her disease. Lawson might counter that this comparison is unjustified because Alzheimer's causes a loss cognitive capacities, whereas Autism does not. This move will not work, though, since approximately a third of children diagnosed with Autism exhibit some sort of regression.

Another factor to consider is that it seems likely that there is more than one subtype contained within the Autistic Spectrum. If so, then different treatments may be appropriate for these subtypes. For example, some recent evidence suggests that a small number of severely affected AS children suffer from a metabolic disorder. Few would want to argue that we should not seek to medically treat this problem. Lawson's approach, though, seems to leave no room for distinguishing subtypes. As she sees it, Autism is not a neurological disorder. End of story.

Lurking behind these examples is a conceptual problem. The connection between our notions of what is normal and what is medically appropriate does not seem to be as tight as Lawson imagines. Often our judgments about medical matters turn on a normative concept of health rather than a general concept of normality. For example, most nutritionists would agree that the normal American diet is unhealthy. Although it may be more difficult to disentangle these concepts with regard to neurological conditions, the distinction seems important and relevant. Indeed, many of Lawson's own arguments can be reframed as supporting the claim that some of the traits of AS individuals should not be viewed as unhealthy despite the fact that they fall out of the range of what would be considered normal.

Finally, I would be remiss if I did not mention a disturbing aspect of the book. To differing degrees, each of its authors demonstrates an unfortunate lack of empathy for parents who seek medical or behavioral therapies for their AS children. To be fair, Lawson has a gentler touch than either of the guest authors. Hers is more a sin of omission than a sin of commission. She seems genuinely unaware that her frequent downplaying of the challenges associated with Autism might strike the parent of a more severely affected child as insensitive and damaging. While terminology such as "differently abled" might seem positive and inclusive to her, it has the potential to seem completely irrelevant and even cruelly euphemistic to parents whose concerns are much more fundamental than whether or not their child fits our current conception of normal.

The guest authors, on the other hand, seem openly hostile to such parents. Murray sarcastically remarks, "Some Others [members of the typical population] weep and moan and deplore their autistic child's existence; they wallow in self-pity and congratulate each other on how Truly Dreadful it all is." This statement illegitimately paints a diverse group of people with a broad brush and seems to be little more than a mean-spirited attempt to silence critics. Klar-Wolfond is not much better. In her discussion of the admittedly questionable practice of using scientifically unsupported biomedical therapies, she offers the following rhetorical question, "And to make them what? -- better at maths, quicker on the sports field, or well-mannered?" This is doubly insulting to parents of children who have tried such therapies. First, it belittles their concern. The suggestion is that parents are merely trying to get their children to "act normal" when in fact they are often trying to ameliorate severe challenges with respect to communication and social interaction as well as other difficulties including debilitating anxiety, painful gastrointestinal problems, insomnia, and even violent behavior. Second, it denigrates their reasoning. Many parents who try such therapies agonize over their decision. Although some of these therapies have potentially harmful side effects, most do not. When Klar-Wolfond lumps together treatments as diverse as supplements and detoxification therapies, she is being both misleading and unfair.

In the end, this book achieves mixed results. On the one hand, Lawson's discussion of her personal experiences is compelling. Her suggestions with regard to how we might better treat AS individuals are often insightful. On the other hand, her general argument glosses over a number of very important issues. Worse, it threatens to exclude and demonize those who seek medical and behavioral help for their AS loved ones.

 

© 2009 Guy Dove

 

 

Guy Dove, Ph.D., Assistant Professor, Departments of Philosophy and Psychological and Brain Sciences, University of Louisville  


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