Autism: A National Health Emergency
Autism is a neurological disorder that strikes an estimated one in 150 children every year, usually within the first three years of life. These children's contact with the world differs radically from what is considered normal. They may be unable to communicate or form meaningful relationships with others. Depending on the degree of affectedness and the path their education takes, they may be able to function independently in society in later life, or they may always require a strong support system. In April 2002, a congressional hearing declared autism to be a national health emergency.
The behavior of some autistic children may seem strange: repetitive motions, an inability to tolerate change or to tolerate a great deal of stimulation of the senses. No medical tests exist to definitively diagnose the condition, yet symptoms make it part of the spectrum of disorders known as PDD or Pervasive Developmental Disorder as defined by DSM-IV (the Diagnostic and Statistical Manual).
Parents and teachers of autistic children can read widely and should continue to read as methodologies differ and research yields additional information. Consider further research at Gale's Health & Wellness Resource Center and with recommended books and Web sites from our autism webliography.
Autism Society of America
http://www.autism-society.org/
A good place for newcomers: information packages on treatment options, educational rights, pervasive developmental disorder (PDD), challenging behaviors, medications and developing Individualized Education Plans (IEPs).
Autism Support Group of Fredericksburg
http://autismsgfred.info/
Hosts two monthly meetings and offers support and networking opportunites for parents of children with autism.
Autism Speaks
http://www.cureautismnow.org
This private organization of parents, physicians and researchers uses its funds to support scientific research on the causes and cures for autism. They are developing a gene bank especially of interest to families who have more than one affected child.
Center for the Study of Autism
http://www.autism.org/
This site covers issues such as self-management and sensory integration and includes essays by Temple Grandin, a very successful autistic woman, as well as discussions of some sub-categories and related disorders of autism.
Commonwealth Autism Service
http://www.autismva.org/
"Commonwealth Autism Service is partially funded by the Virginia Legislature to carry out activities in four major goal areas--providing ongoing support to families and professionals, developing regional networks, providing technical assistance, and conducting conferences related to pervasive developmental disorders. Our Board of Directors and Advisory Council include representatives of state agencies, school professionals, medical professionals, parents of children with autism, persons with autism, attorneys, and other relevant stakeholders."
MedlinePlus: Autism
http://www.nlm.nih.gov/medlineplus/autism.html
Has sections devoted to overviews of the condition, diagnosis/symptoms, treatment, alternative therapy, rehabilitation, clinical trials, genetics, research, statistics, and more.
Unlocking Autism
http://www.unlockingautism.org/
This group's mission is to increase awareness about the disorder, educate parents about legislation and treatments, raise funds for research, help those with autism reach their potential. Features a national call center for information and an online book store.
Virginia Autism Resource Center
VARC provides free services for information and referral, individual case consultation, and training and technical assistance. Services may be requested online. Be sure to check out their library of books, videos, and audio materials on autism which may be borrowed by mail.
The Virginia Institute of Autism
http://www.viaschool.org/
Located in Charlottesville, VIA offers a full-day, twelve-month program for learners aged two and up. They also offer workshops and conferences and provide behavior analysis. Their site includes helpful links for parents.
Aquamarine Blue 5: Personal Stories of College Students with Autism edited by Dawn Prince-Hughes.
Dawn Prince-Hughes sees numbers as colors. To her, the number 5 is always a lovely shade of aquamarine. As an anthropology professor, she sees the Internet as the perfect place for a rise of autistic culture. The book's essays are written by autistic adults who face challenges every day in interacting with "neurotypicals" while pursuing the perfectly typical social and academic goals of the college years.
Emergence: Labeled Autistic by Temple Grandin..
Intelligent and creative Temple Grandin gives a stirring account of a life lived coping with autism. She has a unique vision of the way autistic people think and also provides some clinical information. Ms. Grandin has also written another fascinating book, Animals in Translation: Using the Mysteries of Autism to Decode Animal Behavior.
Exiting Nirvana: A Daughter's Life with Autism by Clara Claiborne Park.
The little girl first described in her mother's book The Siege has grown up to become a talented artist but she still needs her family's support to draw away from the idyllic yet isolated world of her childhood.
Let Me Hear Your Voice: A Family's Triumph Over Autism by Catherine Maurice.
The Maurice family successfully used behavior intervention techniques to reverse the autism in their two young children. This is their story, and it includes the intense emotions that face the parents of autistic children in an unfriendly medical climate.
The Mind Tree: A Miraculous Child Breaks the Silence of Autism by Tito Rajarshi Mukhopadhyay.
As a result of his mother's intensive work with him, a young, autistic boy learned to write in English as well as his native Bengali. In poetic words, he tells what the autistic experience is like, both its beauty and its pain.
Nobody Nowhere: The Extraordinary Autobiography of an Autistic by Donna Williams.
What's it like to be high-functioning autistic faced with an extreme sensory overload? To search for answers to one's differences while struggling with an abusive family? Donna Williams' story continues in Somebody Somewhere.
Songs of the Gorilla Nation: My Journey Through Autism by Dawn Prince-Hughes.
Dawn Prince-Hughes, an anthropologist, tells of her journey from an early childhood of being an undiagnosed autistic to the moments of joy she experienced as an adult working with primates, being drawn ever closer to her fellow humans.
Activity Schedules for Children with Autism: Teaching Independent Behavior by Lynn E. McClannahan.
An activity schedule is a set of pictures or words that cues a child to follow a sequence of activities. When activity schedules are mastered, children are more self-directed and purposeful in their home, school, and leisure activities-doing puzzles, interacting with classmates, and preparing food with minimal assistance from adults. Based on research performed at the Princeton Child Development Institute.
The Autistic Spectrum: A Parents' Guide to Understanding and Helping Your Child by Lorna Wing.
"The Autistic Spectrum clearly and simply explains how to better understand your child's specific condition.The author, a world-renowned expert and mother of an autistic child, describes how people with autism experience the world, the reasons for their disturbed behavior and why they resist change. Then she offers ways to plan daily routines as well as to deal with unexpected occurrences. Dr. Wing offers real-life solutions to everyday problems."
Biofeedback for the Brain: How Neurotherapy Effectively Treats Depression, ADHD, Autism, and More by Paul G. Swingle.
Contents: The basics of biofeedback -- How do brain waves work? -- Interpreting the signals of the brain -- Neurotherapy and its partners in treatment -- Diagnostic chaos: the case of ADHD -- The broad reach of neurotherapy -- The promise of neurotherapy in the future.
Creative Therapy for Children with Autism, ADD, and Asperger's: Using Artistic Creativity to Reach, Teach, and Touch Our Children by Janet Tubbs.
"Her goal is to balance the child's body, mind, and spirit through proven techniques. Part Two provides a wide variety of exercises, activities, and games that are both fun and effective. Each is designed to reduce hyperactivity, increase and prolong focus, decrease anger, develop fine motor skills, or improve social and verbal skills. All are part of a program created to help these children relate to their environment without fear, anxiety, or discomfort."
(From the publisher's description)
Getting the Best for Your Child with Autism: An Expert's Guide to Treatment
"...shows how to get an accurate assessment of your child's strengths and weaknesses so you can develop a plan of action suited to his or her individual learning style, interests, verbal abilities, and social skills."
(From the publisher's description)
Helping Children with Autism Learn: Treatment Approaches for Parents and Professionals by Bryna Siegel.
A book which gives practical advice for educating autistic children. One caveat: some of her opinions and conclusions concerning motivations to behaviors and causes are controversial.
My Social Stories Book by Carol Gray and Abbie Leigh White.
Takes autistic children step by step through such activities as using the toilet, brushing their teeth, and wearing a safety belt in the car.
Navigating the Social World: A Curriculum for Individuals with Asperger's Syndrome, High Functioning Autism and Related Disorders by Jeanette L. McAfee.
The author addresses how to teach students about emotions, abstract thinking skills, acceptable behavior, and communication skills. Includes useful forms for tracking development.
The Oasis Guide to Asperger Syndrome: Advice, Support, Insights, and Inspiration by Patricia Romanowski Bashe and Barbara L. Kirby.
Written by activist, caring mothers of autistic children, the OASIS Guide gives useful strategies for working with children at home, in the community, and at school and outlines different educational programs. The authors manage the OASIS Web site, Online Asperger Syndrome Information and Support.
A Parent's Guide to Asperger Syndrome and High-functioning Autism: How to Meet the Challenges and Help Your Child Thrive by Sally Ozonoff and others.
"From leading experts in the field, the book is packed with practical ideas for helping children relate more comfortably to peers,learn the rules of appropriate behavior, and participate more fully in school and family life. It also explains what scientists currently know about autistic spectrum disorders and how they are diagnosed and treated."
A Picture's Worth: PECS and Other Visual Communication Strategies in Autism by Andy Bondy and Lori Frost.
Visual communication strategies can provide the critical language bridge for autistic students who are unable to use spoken language effectively. This book discusses why such strategies can help and how to get the most out of them.
Right from the Start: Behavioral Intervention for Young Children With Autism : A Guide for Parents and Professionals by Sandra L. Harris.
Explains a teaching technique called IBI (intensive behavioral intervention) and offers suggestions on how to examine different treatment methods.
The Stolen Child: Aspects of Autism and Asperger Syndrome by Ann Hewetson.
"Personal stories and professional research findings make this highly readable book a ready summary of the current knowledge surrounding autism. Directed toward parents and professionals, this book explains what research has revealed and supports it with personal accounts written by people with autism and the parents of autistic children."
Targeting Autism: What We Know, Don't Know, and Can Do to Help Young Children with Autism and Related Disorders by Shirley Cohen.
This book is geared to both professionals and families. It has a strong research component (as of 2002), but it also gives suggestions on how to work with affected children.
On the Web
ABA Resources for Recovery from Autism/PDD/Hyperlexia
http://rsaffran.tripod.com/aba.html
"I am the father of a school-age child who has autism. This is a collection of Internet and other resources which parents of children with PDD, PDD-NOS, autism, Asperger's Syndrome, or hyperlexia may find useful. All the information concerns teaching methods that are a branch of applied behavior analysis (ABA) called behavioral intervention. One of the methods is discrete trial training. Some (inaccurately) use the term 'Lovaas method.'"
Beyond Autism
http://trainland.tripod.com/
"Beyond Autism is a site by a parent that has 'been there, done that, and still doing it.' This autism site contains over 2,700 working links to other resources and is a comprehensive source of information for those of you just starting out - to help you move 'beyond' the label of autism - somehow we all have to do that no matter how difficult it is... I have included many links on teaching methodologies, education and 'special' education resources, IEP information, augmentive and communication assistance with assistive technology information, disability legal information, sensory dysfunction issues, specialized catalogs,behavior problems and much more!"
Look for the 77-page teaching guide for working with autistic children.
Do2Learn: Educational Resources for Special Needs
http://www.do2learn.com/
Many resources, such as the daily organizers, songs with graphics, and art activities, are free, but the site also gives ordering information for useful commercial education products such as books, videos, and software. Also has supportive content for parents on legal advocacy and advice from professionals.
Autism
http://kidshealth.org/kid/health_problems/brain/autism.html
When Stacey went over to her new friend Chelsea's house, she met Chelsea's 4-year-old brother, Shawn, who is autistic. This site explains, from a child's perspective, what autism is-- and what it isn't, and what can be done to help autistic children and adults.
Ian's Walk: A Story About Autism by Laurie Lears.
Julie and her sister take little brother Ian for a walk in the park. When he wanders off, Julie's stomach "does a flip-flop", but she is able to use her special understanding of him to help her find him. This book has expressive paintings and a simple, true voice. A "Pick of the List" from American Bookseller and recognized by The Council for Exceptional Children. For grades two and up to read; it may also be used as read-aloud with younger children.
The Ride Together: A Brother and Sister's Memoir of Autism in the Family by Judy and Paul Karasik.
In this critically acclaimed book, Judy and Paul Karasik tell of growing up with and getting to know their autistic brother, David, from the 1950s until today. Told in Judy's words and Paul's cartoons.
Siblings of Children with Autism: A Guide for Families by Sandra L. Harris.
Suggests how to foster a feeling of family normality for brothers and sisters of autistic children.
Research Studies and Alternative Medicine
Autism: Explaining the Enigma by Uta Frith.
This classic work discusses how the problems of autism unfold under the pressures of childhood interactions. An explanation rich in neuropsychological research.
Developmental Delay Resources (DDR)
http://devdelay.org/
This nonprofit organization publicizes the latest research and maintains a registry to track trends of children who may be at risk for developing autism. Includes online publications.
The Essential Difference: The Truth About the Male and Female Brain by Simon Baron-Cohen.
A psychologist argues that the reason autism is so much more prevelant in males than females is because it is a manifestation of an "extreme male brain."
Impossible Cure: The Promise of Homeopathy by Amy L. Lansky.
At the core of this popular work on homeopathy is the author's own quest to find a cure for her autistic son.
MedlinePlus: Autism
http://www.nlm.nih.gov/medlineplus/autism.html
Has sections devoted to overviews of the condition, diagnosis/symptoms, treatment, alternative therapy, rehabilitation, clinical trials, genetics, research, statistics, and more.
The AiA Gluten and Dairy-Free Cook Book compiled by Marilyn Le Breton.
For those who wish to try a dietary approach to some of the symptoms of autism, this book has over 400 recipes to help add variety to family meals.
The Gluten-free Gourmet Cooks Comfort Foods: More than 200 Recipes for Creating Old Favorites with New Flours by Bette Hagman.
More recipes for parents who would like to try a gluten-free diet with their families.
Special Diets for Special Kids, Two: New! More Great-tasting Recipes & Tips for Implementing Special Diets to Aid in the Treatment of Autism and Related Developmental Disorders by Lisa Lewis.
This sequel to Special Diets for Special Kids has recipes for everything from breakfast to holiday meals. Includes a glossary and a list of resources.
Unraveling the Mystery of Autism and Pervasive Developmental Disorder: A Mother's Story of Research and Recovery by Karen Seroussi.
Karen Seroussi, the mother of an autistic child, tells of the positive results of pursuing dietary therapy for her son.
A User Guide to the GF/CF Diet: For Autism, Asperger Syndrome and AD/HD by Luke Jackson.
"What is the glueten and casein free diet? Does it work? What's it like to go on it? Luke Jackson, who is 12 years old and has Asperger Syndrome, tells you everything you need to know - both good and bad. He offers encouragement and practical advice on what to expect when beginning the diet, how to alleviate any initial discomfort, and how to live with the diet. Appendices by Luke's mother provide some of the family's favorite recipes, extensive lists of useful addresses, a food diary for an average week, and suggestions for packed lunches, making the book a really practical source of information."
Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy by David Kirby.
The author, a writer for The New York Times, follows several families as they try to discover the reason behind the onset of autism in their children. He reports on meetings at the FDA, the CDC, drug companies, and Congressional hearings and reaches the conclusion that despite statistical and anecdotal evidence, the medical establishment is determined to deny that harm has come to children from thimerosal and mercury in vaccines.
Immunization Safety Review: Vaccines and Autism from the Institute of Medicine of the National Academies.
This official study (2004) rejected the link between vaccinations and autism.
Vaccines, Autism, and Childhood Disorders: Crucial Data That Could Save Your Child's Life by Neil Z. Miller.
The author makes his case for the rise in diagnosed autism being linked to vaccinations.
The author wishes to acknowledge the invaluable assistance of parent and teacher Kathy Hybl in compiling this updated bibliography.
