Book Review:
Elijah's Cup by Valerie Paradiz

Reviewed by Phil Schwarz

Valerie Paradiz's book Elijah's Cup is a real gem - a must-read.

It is heartfelt, lyrical in its imagery, and engaging in its narrative style.

But beyond that, it is an important milestone in the history of autism literature. Like many of the books that have been written about autism in the last ten years, it is a parent's narrative - but it is no ordinary parent's narrative. It reaches out, and tries, and more than any book before it in its genre, succeeds in understanding and communicating the perspectives of those of us who, like Valerie's son Elijah, are on the autism spectrum.

I came to Elijah's Cup with a great deal of background and a great deal of expectation. I am the father of a high-functioning autistic boy a year younger than Elijah - my son Jeremy - and I am also an adult on the spectrum, my own mild variant of AS having been identified in the course of obtaining a proper diagnosis for Jeremy. Since that time, back in 1994, my family and I have been members of Autism Network International (ANI) - the autistic self-advocacy organization whose annual retreat, Autreat, Valerie describes in the pages of Elijah's Cup. Jeremy and I, and later my daughter Rachel, Jeremy's big sister, would see Valerie and Elijah each year at Autreat. We know many of the ANI folks Valerie describes and converses with and learns from in the course of the book's narrative. They are family and community to us - and as Valerie's narrative unfolds, it is clear that they have become family and community for her and Elijah too.

And that is one of the important ways in which this is no ordinary parent's narrative: Valerie instinctively sought out, listened to, and took seriously, the perspectives of adults on the spectrum in the course of trying to figure out how best to be a parent to Elijah. She instinctively sought, and found, and understood, the meaning and purpose in autistic behavior - in reaction to sensory stimuli, in learning through repetition and pattern-making, in reveling in a different yet none-the-less valid set of aesthetic sensibilities. She refused to accept the cavalier manner in which the medical model of autism dismisses the relevance and meaning of autistic behavior, sensory preferences, and cognitive style, and instead correctly understood them as the ways in which we attempt to make sense of the world and communicate with it. She refused to accept as complete and sufficient the diagnostic definitions of autism that state, on the one hand, that autism is pervasive and factors into every aspect of the individual's existence, and then on the other hand reduce that existence to a laundry list of negatively stated and devalued traits. She understood that Elijah, and the rest of us on the spectrum, are more than that - and that that "more" is nevertheless at essence autistic - strengths as well as weaknesses.

This is what we adults on the spectrum have been trying to tell the world ourselves for the past decade and more - but it is downright radical stuff to be coming from a parent.

Yet it is especially important that it is coming from a parent, and from a gifted and lyrical writer to boot. By speaking as a parent, Valerie reaches and engages potential non-autistic allies - family members, professionals, friends - in ways in which even the most brilliant writing by adults on the spectrum who are not themselves parents, might not.

Valerie understood the importance of finding and connecting Elijah and herself with autistic peers, mentors, and role models. Her search for the latter, coupled with her dissatisfaction with the devaluing descriptions of autism in the diagnostic manuals and the clinical and research literature, led her to study the history of autism and the lives of several famous individuals who might have been on the spectrum.

She traces the sorry history of autism through its decades of mischaracterization by the psychotherapeutic field - and its outright hijacking by the charlatanism of Bruno Bettelheim. She chronicles the misogyny and victimization of parents, particularly mothers, who were blamed by practitioners as the cause of their children's autism. That much, her inquiry has in common with others' histories of autism.

But with her gifted eye, she goes further: she makes palpable a keen sense of the damage that blame and relentless cause-seeking can do, the wedge it can - and does - drive into the hearts of marriages, and into the hearts of relationships between parents and children, and between nuclear family and relatives and friends. She makes her quest one of moving beyond blame and cause-seeking, to concern and attention to the development and vitality of the people involved, and to their connectedness with self, peers, and mentors - however different or unusual that development, vitality, sense of self, and connectedness with others might turn out to be. She refuses to believe that this is in any way less important for people with that diagnostic laundry list of autistic impairments - and she is profoundly right. She remains steadfastly open to the legitimacy of the different ways in which these basic human needs are articulated and met by those of us on the spectrum.

And that is what is so important about this book, why it is such a milestone.

It opens the eyes of those of us who are family members of people on the spectrum to new possibilities, to an alternative path for parenting, a more holistic and constructive way to proceed than that which parents who are exposed only to the medical model of autism are left with.

In a set of conversations on the ANI listserv and on autuniv-l, the listserv for current, past, and prospective university students on the spectrum, I characterized this alternative path for parenting as having the following 4 essential elements:

First: a recognition that autism is more than deficit and disability: it is identity, and a way of being -- a legitimate way of being. If one could eradicate all traces of autism in an individual, one would not expose a "normal" individual that had been buried underneath a "shell" of autism. One would be making fundamental changes in the individual's personality, identity, cognition, and processing of emotions, in effect erasing a legitimate personality and identity. The alternative path's approach is for parents to give their autistic children quite the opposite: to help them develop a solid sense of positive identity and pride as autistic people, and a firm sense of the legitimacy of their way of being, even though their way of being is in a vastly outnumbered minority.

Second: a recognition that even that part of autism which manifests itself as deficit and disability breaks down into two categories: intrinsically disabling factors, and those which are disabling only because of inflexibility and lack of accommodations in the surrounding society's social and sensory landscape. The alternative path's approach is for parents to invest some of their energy in activism to change the unfavorable conditions in the societal environment their children live in and will grow up in, as well as in efforts to mitigate the intrinsically disabling factors in their children. Acceptance of neurological diversity needs to be made as fundamental as acceptance of religious, ethnic, racial, and gender-related diversity.

Third: a recognition that most autistic people benefit from contact with a community of (autistic) peers, mentors, and role models. The alternative path's approach is for parents - whether autistic or NT themselves - to help their autistic children to connect with those peers and mentors, and to learn about and take pride in those role models.

Fourth: a recognition that the community has a common shared experience that is different from the majority's, and is expressing itself in an emerging culture, much like Deaf culture or gay culture or minority ethnic cultures. The alternative path's approach is for parents to help their autistic children to partake of that shared experience and culture.

And that is what Valerie teaches her readers in Elijah's Cup, in much more eloquent, lyrical, and poetic language.

Valerie Paradiz, Elijah's Cup. Simon & Schuster Free Press, 2002, ISBN 0-7432-0445-X

Phil Schwarz is the vice-president of the Asperger's Association of New England (www.aane.org). Information about Autism Network International and Autreat can be found at www.ani.ac, and information about autuniv-l, the University Students with Autism and AS listserv, can be found at www.users.dircon.co.uk/~cns

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