Can't Eat, Won't Eat

Can’t Eat, Won’t Eat:  Dietary Difficulties and the Autistic Spectrum Disorders by Brenda Legge is a book compiled mainly of case studies, with survey results, and techniques for change. The first case study is that of the author’s 11-year-old son who has been diagnosed with Asperger Syndrome (AS).  Legge explains how the texture, taste and appearance of foods all affect her child’s ability to eat.   She describes how the inflexible nature of an autistic child goes “beyond stubbornness or an unwillingness to conform. The fear of change, of accepting anything new or unfamiliar, is so great that it seems to defy all logic.” She describes how his eating is beyond “faddy” and how he has a real aversion to trying anything new. She recounts how her son’s eating habits influence all areas of his and his family’s life. 

This book was of interest to me as our son has AS and has had eating difficulties since he was a baby.   Our son’s issues have evolved over time, from going on hunger strikes, to poor growth due to not eating, to now being very particular about the texture, taste, temperature and appearance of food. This book was reassuring in explaining that our family is not unique in having a child with Autistic Spectrum Disorder (ASD) with significant eating issues.

Throughout the book, Legge provides examples of problems that children with ASD have with food. An interesting aspect about eating intolerances is that the parent has to be respectful of the child’s experience even though it may not seem based in any sort of reality. For example, one of the major issues the author describes is her son’s intolerance for eating foods with “lumps” or “bits.”  We know very well about “bits” at our house.  There are some foods in which our son insists there are “bits”.  Even though I don’t think they have ‘bits” in them, I can’t deny his experience of “bits.” It is a subjective experience even though some may argue it is objective. 

 One explanation for children with ASD having eating problems would be that most of these children have heightened senses and the whole eating process is complicated due to this.  Many of these children have sensory defensive neurological systems. Eating is a very sensory experience from how the food looks and smells to how the texture feels on the lips and tongue.  Many children with ASD have problems with sensory integration involving other aspects of daily living, so it makes sense that eating would also be an area where this is an issue.   Another contributing factor to eating problems could be the obsessive characteristics that children with ASD sometimes have and how these characteristics may influence their eating difficulties. 

The author also discusses how it seems as though everyone has an opinion about how to get your child to eat, or how to get your child to stop being particular about food textures, etc.   The author describes experiences of people minimizing her son’s problems, denying the problem or judging her about her abilities as a parent, or blaming her for her son’s problems.  This seems to be a common problem, as many people cannot understand how a child could have such a significant problem with eating.

Legge provides countless ideas, tips, and techniques for helping the child with eating problems.  These include a variety of behavior techniques, bribery, exploiting the child’s interests (e.g. Thomas the Train), etc.  These ideas are wide ranging, and probably the most valuable part of the book.  They are interspersed throughout the book and are provided by health care professionals, the author herself, and multiple parents who completed surveys sent out by the author.

The survey results are rather interesting.  The author developed a survey for other parents of children with ASD and eating problems.  The results include basic demographic information along with responses from parents regarding numerous aspects of their child’s eating difficulties.           

The author maintains that all children are different and how it is important not to make assumptions about one child based on what has worked for another.  Every child with ASD is different, and the eating difficulties and peculiarities will not improve using the same techniques for all.  She reinforces that it is not the parents fault their child is a faddy/picky/peculiar eater.  She believes that parents often have the ability to help their child with their eating problems better than professionals.  She asserts that parents know their child better than anyone else and therefore they often have the ability to come up with solutions to help their child function better at home, school and the community.

One of the best chapters in the book is an interview with a dietician who is also the mother of an autistic son with dietary intolerances and a limited repertoire of desired foods.   The dietician provides many insightful ideas on how to help children increase their list of acceptable foods, including some techniques that are similar to systematic desensitization.  For example, she encourages kids to help shop for food, help cook, smell the food, and watch other family members eat the food, etc.  These techniques, along with others, are also detailed in a program at Great Ormand Hospital in London for those children with eating problems.  This chapter contains invaluable information about some possible solutions to eating problems.

The author includes an interview with 32-year-old women with autism who has had fears and dislikes of foods since her childhood.  She explains how her eating problems have changed over the years but have never gone away.  Even though it impossible to predict the future for our children, past behavior predicts future behavior to a certain degree, and she provides an interesting perspective about how her eating practices have evolved over the years but remained somewhat problematic.

Furthermore, there is chapter on social difficulties relating to eating problems.  The author describes the social expectations and norms of eating at other people’s homes, eating out as a family, birthday parties, play dates and school. Legge stresses the importance of being cognizant of the need for accommodation and accepting that her son is not being difficult intentionally.   She does not in any way think that her son is going to change and be a flexible eater just because he wouldn’t want to hurt someone’s feelings etc.  That is the nature of ASD.  Many children with ASD are limited in their ability to recognize that their behavior may impact another’s feelings.

In the epilogue, the author describes where her son is at this point in time with his eating problems.  She describes that not much is different, but she doesn’t feel that all hope is lost when it comes to improving his ability to enjoy a wider variety of foods in more situations.

Overall, this book is a valuable resource for parents and professionals interested in helping children with eating difficulties.  It is well written, straightforward and easy to read. The case studies are interesting, the information and suggestions from professionals and other parents is valid, and the author’s compassion for children struggling with these issues is obvious.

© 2003 Monique Thorton

Monique Thornton earned her MSW in 1993 from the University of Kansas, and is the mother of a 6-year-old with Asperger Syndrome.