Sending Postcards from the Airport

Imagine traveling to an exotic island, and the only postcard you send to family and friends is from the airport upon arrival. How would you describe where you're going to go and what it will be like from just the sales brochures and travel guides? In some ways, writing about autistic spectrum disorders (ASD) at this moment is like that; we have a good understanding of what to expect but very little that we can count on.

Identified in the 1940s, autism is a developmental disability that, per the Autism Society of America (ASA), "impacts the normal development of the brain in the areas of social interaction and communication skills." The term autism was first applied to only nonverbal children who could not communicate in a meaningful way with others. In the 1980s, professionals realized that children who attained language could also be autistic if they had similar social and communication problems. This led to the American Psychiatric Association's expansion in 1994 of the recognized conditions in the Diagnostic Statistical Manual-IV.

We have come to know autism, high-functioning autism (HFA), Asperger's syndrome, and PDD-NOS (pervasive developmental disorder—not otherwise specified) as ASD. Though the application of these diagnoses varies a great deal, they are listed here in somewhat decreasing order of severity. The most debilitating condition, autism involves severe impairment of social and communication development, while HFA and Asperger's syndrome are often used synonymously to describe those with lessened conditions. The primary distinction between the two is that people with HFA develop language late and those with Asperger's do not have a speech delay. PDD-NOS is used as a catchall to describe people on the autistic spectrum who are not identified with one of the other groups.

Because ASD manifests itself very differently, hardly any two affected children or adults are alike. Our broader understanding of this condition could explain the tremendous increase in diagnoses. In the 1970s, the ASA estimated that one in 3500 people had autism. Today, one in 500 children is diagnosed with ASD (a 700 percent increase). In May 2003, California's Department of Developmental Services issued a report on the prevalence of ASD in that state and supported the notion of an epidemic by providing a 100 percent increase in reported cases in the last four years alone.

Vaccines (particularly the MMR), environmental toxins, and pollutants have also been pointed to as causes for the dramatic increase in ASD. While compelling evidence supports that thesis, there are equally strong studies that don't. Clearly, far more research needs to be done. What is certain is that early intervention programs, starting at 18 months through three years, are critical if these children are to grasp language and develop social interactions and a framework for future success. However, not every child exposed to early intervention programs—or any therapy for that matter—will succeed. This is a critical concept because different programs and therapies can produce dramatically different results. As we view ASD as a lifelong condition, much of the solid efforts are on controlling the behaviors, not necessarily curing them.

The boom in ASD diagnoses was followed by a book explosion. In the last three years alone, publishers released nearly 650 titles—about 20 percent of the books ever published on the subject. While this is a great sign for people studying ASD, libraries cannot possibly purchase them all.

Of the many publishers of ASD materials, three stand out: Future Horizons, an excellent source for videos and workbooks (www.futurehorizons-autism.com); London-based Jessica Kingsley, producers of the greatest number of titles per year (www.jkp.com); and Woodbine House, a special-needs company with a fantastic series called "Topics in Autism" (www.woodbinehouse.com).

Given autism's range of severities, in selecting books, embrace those that cultivate hope, while staying away from ones that provide unilateral or simplistic solutions. Also, focus on our four divisions to address the needs of the parent, educator, child, and interested patron. Books that champion biomedical or natural interventions for ASD children pose a challenge because they connect vaccines, environmental toxins, and diet to autism; they present an unbalanced approach and often make assertions that they alone can reverse or cure autism. Videos are very important in showing therapies in action, as well as clearing our minds of Dustin Hoffman's Raymond Babbitt in Rain Man as the face of ASD.

Librarians should set aside fears about books by apparent "nonexperts," many of them parents or family members. Though these accidental authors may lack the traditional credentials sought by librarians, they have become the biggest experts in the field through reading everything available on the subject. They have used their intellectual curiosity and desire to help others with ASD, garnering all the credentials that they need.

Autism today is practically a different condition than it was thought to be just 20 years ago. Early books, most notably Bruno Bettelheim's The Empty Fortress (1971), wrongly concluded that unloving, or "refrigerator," parents caused autism. Although that work is historically important, it would be damaging for someone to read it today. Public libraries, then, should look at tossing books published before the mid-1990s. However, an exception should be made for personal narratives, which have value regardless of age. Starred [* books are essential for all collections.

*Attwood, Tony. Asperger's Syndrome: A Guide for Parents and Professionals. Jessica Kingsley. 1997. 201p. ISBN 1-85302-577-1. pap. $18.95.
One of the leading figures on the lecture circuit, Attwood has written extensively on Asperger's syndrome and HFA. Despite age, this book still offers tremendous insight into the identification and treatment of children on the higher functioning end of ASD. While this title is essential for libraries, two additional and related sources should also be considered. First, the author's web site (www.tonyattwood.com) provides links to his papers and lecture schedule. Second, Future Horizons is offering his presentations on VHS and DVD: Asperger's Syndrome DVD with Dr. Tony Attwood and Dr. Tony Attwood: Asperger's Syndrome DVD, Vol. 2.

Balsamo, Thomas (photogs.) & Sharon Rosenbloom (text). Souls: Beneath and Beyond Autism. McGraw-Hill. 2003. 126p. ISBN 0-07-288170-4. $29.95.
At first glance, this volume could be easily dismissed as just a coffee-table book, but it is tremendous, with beautiful photos by Balsamo and wonderful prose by Rosenbloom, who captures the challenges, triumphs, and tragedies for the parents and families of a child with ASD.

*Cohen, Shirley. Targeting Autism: What We Know, Don't Know, and Can Do To Help Young Children with Autism and Related Disorders. Univ. of California. 2002. 240p. ISBN 0-520-23480-4. pap. $16.95.
Updating her 1999 volume, Cohen (special education, Hunter Coll., New York) provides strong overviews of current work being done with autism and addresses the different life cycles of children with the condition through preschool, elementary school, and adolescence. She effectively uses narratives to help illustrate her points and the treatment methods that parents and educators should consider.

Frith, Uta. Autism: Explaining the Enigma. 2d ed. Blackwell. 2003. 249p. ISBN 0-631-22901-9. pap. $26.95.
One of the most recognized names in autism research, Frith counts Tony Attwood (see above) among her many students. Her book is valuable for educated parents interested in learning about autism in a larger historical context. Frith writes a great deal on the problem that autistic people have with "mind blindness," the inability to look at and see other people. Certainly not the first book that people should read, but still enlightening.

*Harris, Sandra & Beth A. Glasburg. Siblings of Children with Autism: A Guide for Families. 2d ed. Woodbine House. 2003. 160p. photogs. index. ISBN 1-890627-29-1. pap. $16.95.
The sibling relationship is the longest relationship that a person with ASD will have during his or her lifetime. This fantastic resource for families with autistic children and nonautistic siblings examines the perceptions, needs, compromises, and inevitable stresses that brothers and sisters face. The updated edition includes a new chapter on the needs of adult siblings. (LJ 6/1/03)

Hewetson, Ann. The Stolen Child: Aspects of Autism and Asperger's Syndrome. Praeger. 2002. 264p. ISBN 0-89789-844-3. $26.95.
A strong introductory text that includes personal narratives, historical information, summaries of different treatment programs, and excellent resources for people to move forward. A big plus: Hewetson, the mother of a son with high-ability autism, carefully balances the different approaches and does not promote one treatment over another as the cure for all people with ASD.

*Ozonoff, Sally & others. A Parent's Guide to Asperger's Syndrome & High-Functioning Autism: How To Meet the Challenges and Help Your Child Thrive. Guilford. 2002. 267p. ISBN 1-57230-767-6. $35; pap. ISBN 1-57230-531-2. $17.95.
This is an excellent resource for parents of children on the higher end of the autistic spectrum. All educators, the authors provide the basics on diagnosis, causes, and treatment. What makes their title essential is their positive emphasis on finding and channeling a child's strengths, as well as a sensitive discussion of home life, school, and the social world and life as an adult. Included are numerous case studies from older children and young adults that go beyond basic communication issues to social situations such as dating, living on their own, and holding a job. (LJ 8/02)

Romanowski, Patricia Bashe & Barbara L. Kirby. The OASIS Guide to Asperger's Syndrome: Advice, Support, Insights and Inspiration. Crown. 2001. 480p. ISBN 0-609-60811-8. $27.50.
Written by the leaders of the valuable OASIS (Online Asperger's Syndrome Information & Support) web site, www.udel.edu/bkirby/asperger, this is an excellent resource for a growing component of ASD. The authors address the difficulties in diagnosing Asperger's and other conditions that are sometimes confused with it. (LJ 9/1/01)

*Waltz, Mitzi. Autistic Spectrum Disorders: Understanding the Diagnosis and Getting Help. 2d ed. O'Reilly. (Patient-Centered Guides). 2002. 504p. ISBN 0-596-50013-0. pap. $29.95.
In this update of her 1999 edition, Waltz offers expanded resources and current information on topics such as medical and therapeutic interventions, insurance, education, family issues, support, and resources. An advocate for children and adults with neurological disorders, she shows the human side of the condition by including numerous personal accounts from interviews with people with ASD, as well as their families and caretakers. For more information (e.g., useful links and chapter outlines), visit the book's homepage, www.patientcenters.com/autism/news/resources.html. (LJ 7/02)

Aquamarine Blue 5: Personal Stories of College Students with Autism. Swallow: Ohio Univ. 2002. 134p. ed. by Dawn Price-Hughes. ISBN 0-8040-1054-4. pap. $14.95.
An educator with Asperger's syndrome, Price-Hughes presents valuable accounts contributed by current and recent ASD students. The excellent role models profiled here demonstrate that many such children can not only attend college but excel there.

Claiborne, Clara Park. Exiting Nirvana: A Daughter's Life with Autism. Little, Brown. 2002. 225p. illus. ISBN 0-316-69124-0. pap. $14.95.
Like many parents of autistic children, Claiborne became an expert out of a need to fill gaps in the literature and share information. Her 1967 memoir, The Siege, was one of the earliest personal narratives on autism. This follow-up covers the past 40 years of her daughter Jessy's life and wonderfully describes what Jessy has been able to accomplish, as well as setbacks along the way. Also included are color illustrations of Jessy's amazing artwork. For more information, see their web site at www.jessicapark.com. (LJ 3/1/01)

*Grandin, Temple. Thinking in Pictures: And Other Reports from My Life with Autism. Vintage. 1996. 222p. ISBN 0-679-77289-8. pap. $12.95.
Grandin is a high-functioning autistic adult who has a Ph.D. in animal science and teaches at Colorado State University. Besides being a designer of livestock-handling facilities, she has been a tremendous role model and advocate for autistic people. Complementing her earlier Emergence: Labeled Autistic (1986), which chronicled her overcoming her disability without the benefit of a strong educational system that knew what to do with her, Grandin explains what it is like to "think in pictures" and reveals how autism gives her an advantage in her work.

Hamilton, Lynn M. Facing Autism: Giving Parents Reasons for Hope and Guidance for Help. WaterBrook. 2002. 366p. ISBN 1-57856-262-7. pap. $14.99.
Hamilton here recounts the diagnosis and treatment of her son, Ryan, born in 1992. She and her husband chose a balanced approach with diet intervention and applied behavioral analysis to great success. Hamilton provides excellent resources and strategies for those two approaches and other information such as sensory issues, education, and family and friend relationships. (LJ 5/1/00)

*Jackson, Luke. Freaks, Geeks & Asperger Syndrome: A User Guide to Adolescence. Jessica Kingsley. 2002. 217p. ISBN 1-84310-098-3. pap. $17.95.
In this terrific book that is sure to inspire other adolescents with the same condition, 13-year-old Jackson offers a teenager's perspective on what it's like to live with Asperger's. He also writes about his younger brother, who has a more severe condition on the ASD spectrum. Jackson is also the author of A User Guide to the GF/CF Diet for Autism, Asperger's Syndrome and AD/HD .

*Karasik, Judy (text) & Paul Karasik (comics). The Ride Together: A Brother and Sister's Memoir of Autism in the Family. Washington Square: S. & S. 2003. 208p. illus. ISBN 0-7434-2336-4. $23.
This exceptional account of a family's experience with autism fills a gap in the literature by featuring the siblings' point of view. In chapters that alternate between Judy's prose and Paul's graphic illustrations, the Karasiks chronicle the life of their autistic brother from the 1950s to the present. (LJ 11/15/02)

*Maurice, Catherine. Let Me Hear Your Voice: A Family's Triumph Over Autism. Fawcett: Ballantine. 1994. 371p. ISBN 0-449-90664-7. pap. $13.95.
In one of the best memoirs on autism, Maurice, who went on to edit Behavioral Intervention for Young Children with Autism, documents her struggle to find a successful treatment regimen for her daughter. She not only examines what worked—applied behavior analysis—but also what failed. Included are two accounts of other families who also struggled with the condition during the same time (early 1990s).

Willey, Liane Holliday. Pretending To Be Normal: Living with Asperger's Syndrome. Jessica Kingsley. 1999. 175p. ISBN 1-85302-749-9. pap. $17.95.
Willey is a good example of someone who was not diagnosed with ASD because she could speak. Like many people of her generation, she only discovered her place on the autistic spectrum after her infant daughter was diagnosed with Asperger's.

*Bondy, Andrew & Lori Frost. A Picture's Worth: PECS and Other Visual Communication Strategies in Autism. Woodbine House. (Topics in Autism). 2001. 156p. photogs. index. ISBN 0-933149-96-4. pap. $16.95.
Bondy and Frost developed the Picture Exchange Communication System (PECS) of nonverbal communication during their years of working with autistic children. The strategy incorporates pictures, symbols, and words on cards to allow nonverbal children to communicate. In this introduction, Bondy and Frost do an excellent job of providing examples for implementing PECS with a wide range of autistic children and clear instructions on how to create one's own set of cards or objects. They also offer parents a way to expand the program with their child as communication goals are met. (LJ 4/1/02)

*Gray, Carol & Abbie Leigh White (text) & Sean McAndrew (illus.). My Social Stories Book. Jessica Kingsley. 2002. 224p. ISBN 1-85302-950-5. pap. $18.95.
*Gray, Carol. The New Social Story Book. 2d ed. Future Horizons. 2000. 280p. ISBN 1-885477-66-X. pap. $34.95.
Educator Gray has written several volumes of "social stories," brief and often illustrated tales that help children with ASD learn how to interact with classmates, teachers, family members, and others. These are listed as a pair because they complement each other in offering valuable resources that parents will need to implement those interactions.

More information can be found at www.thegraycenter.org, or from the Future Horizons video Writing Social Stories with Carol Gray.

Greenspan, Stanley I. & Serena Wieder with Robin Simmons. The Child with Special Needs: Encouraging Intellectual and Emotional Growth. Perseus. 1998. 496p. ISBN 0-201-40726-4. $30.
Many professionals use Greenspan's "floortime" method to engage children with ASD. Through play activities, it offers a method to improve socialization and language, while reducing repetitive behaviors. Though not dedicated to autism, it is an important work for libraries.

Holmes, David L. Autism Through the Lifespan: The Eden Model. Woodbine House. 1998. 383p. illus. ISBN 0-933149-28-X. pap. $21.95.
For more than 20 years, the Eden Family of Services in Princeton, NJ, has been offering behavior management aid to ASD children and adults. Here, its director walks readers through his institution's specialized programs and provides still relevant background on autism. The book is well illustrated with photos, graphs, and charts, allowing it to double as a reference for parents and educators looking to incorporate applied behavioral analysis with children.

*McAfee, Jeanette, M.D. Navigating the Social World: A Curriculum for Individuals with Asperger's Syndrome, High Functioning Autism and Related Disorders. Future Horizons. 2001. 350p. ISBN 1-885477-82-1. $49.95.
McAfee left her pedatric practice to teach her ten-year-old daughter social skills; this book, an excellent resource for parents and educators, was the result. Along with great appendixes and examples, her text can help parents to improve communication and other skills that are difficult for ASD children. For more information, visit the author's web site at www.jeaniemcafee.com/index.htm . Spiral bound.

*Richman, Shira. Raising a Child with Autism: A Guide to Applied Behavior Analysis for Parents. Jessica Kingsley. 2001. 173p. ISBN 1-85302-910-6. pap. $19.95.
Behavior therapy consultant Richman clearly outlines the applied behavior analysis (ABA) activities that parents can use with ASD children. Included is helpful guidance for toilet training, daily living, and increasing communication and sibling interaction. Since ABA consultants may be out of the financial or geographic reach of many parents, having a strong resource like this is invaluable.

Seroussi, Karyn. Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery. S. & S. 1999. 288p. ISBN 0-684-83164-3; pap. Broadway. ISBN 0-7679-0798-1. $12.95.
Though primarily a personal narrative, this offers one of the better accounts of biomedical and diet interventions with autism. Seroussi's son, Miles, was diagnosed with autism at 19 months (around 1995) after receiving the measles, mumps, and rubella (MRR) vaccine. In sharing the treatments that did and did not work, she describes the gluten-free/casein-free diet that she placed Miles on and his positive reaction to it. Many children with ASD are also on that diet, and parents have reported an improvement in their general behavior. Seroussi is one of the principals of the Autism Network for Dietary Intervention (www.autismndi.com ).

*Siegel, Bryna. Helping Children with Autism Learn: A Guide to Treatment Approaches for Parents and Professionals. Oxford Univ. 2003. 320p. ISBN 0-19-513811-2. $30.
Carefully tailoring her book to multiple audiences, with free use of commentary and introductory notes, Siegel (The World of the Autistic Child) excels at showing what parents and educators need to do to reach autistic children. She includes a valuable section on having successful individualized educational programs (IEPs), the standard for children with special needs. (LJ 5/15/03)

*Embracing Play: Teaching Your Child with Autism. color. 47 min. Woodbine House, 6510 Bells Mill Rd., Bethesda, MD 20817; www.woodbinehouse.com. 2003. ISBN 0-9727080-0-6. $34.95.
Prepared by the Behavioral Intervention Association of Emeryville, CA, this video is an excellent guide for parents who incorporate applied behavior analysis with their child. With strong production values and informative illustrations, it focuses on using play as a way to interact better with a child with ASD.

The Invisible Wall: Autism. color. 51 min. Films for the Humanities & Sciences, PO Box 2053, Princeton, NJ 08543-2053; 800-257-5126; www.films.com. 2001. ISBN 0-7365-3987-5. $129.95; DVD $154.95.
Narrated by actor Ed Asner, this is a good overview of autism and related disorders. It features interviews with Ivar Lovaas, the creator of applied behavior analysis therapy; Temple Grandin, a prominent high-functioning autistic author (see above); and the founders of Cure Autism Now (www.cureautismnow.org). Of particular note are case studies that demonstrate interventions.

Autism Resources
www.autism-resources.com
Maintained by John Wobus, the father of an autistic boy, this site provides links (broken down by category), frequently asked questions, an excellent bibliography of more than 700 books, and other resources. Additionally, the section on "Advice to Parents Who Discover Their Child Is Autistic" includes messages from parents on what they would have liked to know when their child was diagnosed.

National Institute of Mental Health: Autism
www.nimh.nih.gov/publicat/autismmenu.cfm
Maintains a series of autism information links as well as downloadable booklets that provide a good introduction to the condition.