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General Autism Information
We’ve been to the annual conferences that this organization and its affiliates sponsor, noting that they are the flagship for autism information and advocacy in the United States. They have information for individuals with autism, parents, teachers, and others in the helping professions. At various times, we’ve also tapped into the resources to be had by local chapters, which sponsor their own activities in support of their communities. The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders officially describes the diagnostic criteria for autism and related disorders, but here is the ASA’s definition of autism: Autism is a complex developmental disability that typically appears during the first three years of life and is the result of
a neurological disorder that affects the normal functioning of the brain, impacting development in the areas of social interaction and communication skills. Both children and adults with autism typically show difficulties in verbal and nonverbal communication, social interactions, and leisure or play activities. One should keep in mind, however, that autism is a spectrum disorder and it affects each individual differently and at varying degrees. Autism is one of five disorders that falls under the umbrella of Pervasive Developmental Disorders (PDD), a category of neurological disorders characterized by “severe and pervasive impairment in several areas of development.” The five disorders under PDD are:
• Autistic Disorder
• Asperger’s Disorder
• Childhood Disintegrative Disorder (CDD)
• Rett’s Disorder
• Pervasive Developmental Disorder-Not Otherwise
Specified (PDD-NOS)
We knew Sam was in trouble around age two because he spoke so little. We soon learned the difference between receptive language (hearing and understanding) and expressive language
(talking). While Sam’s speech didn’t develop at a normal pace, it did seem to follow the pattern of normal development. We wanted to recognize new skills in hearing and understanding
when they emerged so we could encourage Sam to express himself when the opportunities came up in our everyday interactions.
Weekly sessions with the speech pathologist were helpful for him, but we found it important that we became familiar with the normal development patterns ourselves. The association’s Web site includes valuable information for parents to help foster speech development. Here are the stages of speech and language development for babies, toddlers and preschoolers within their typical time frame. (see page 175 - 179 of See Sam Run for further details)
Parenting Resources
Based at the University of Kansas, the center offers a number of resources on its Web site and call center. I found the parent-to-parent links the most helpful in finding older, more seasoned
parents who had both reliable information and solid emotional support.
Books
Autism: Explaining the Enigma
By Uta Frith
2nd ed. Malden, Mass.: Blackwell, 2003. First published, Oxford, U.K.: Blackwell, 1989.
I enjoyed Frith’s speculations over historic figures who might have had autism, which wasn’t formally described until the 1940s. As a parent, I found the case descriptions of real human beings drew a picture of autism far less abstract than the official lists of general characteristics. Frith’s book is now available in an expanded, updated second edition.
Siblings of Children with Autism: A Guide for Families. 2nd ed.
By Sandra L. Harris and Beth A. Glasberg
Bethesda, Md.: Woodbine House, 2003.
Also in its second edition, this is one book I wish had been out when the kids were younger. However, we took part in a psychology study of siblings and children with autism. The researchers showed us how the boys could play together, and thus have a better relationship.
Board games and other play that had some structure worked best for us. Sam couldn’t do much pretend play with Michael. Of course, after video games came to our house, the boys were home free, though we still have a family game night from time to time.
Children with Autism: A Parents’ Guide. 2nd ed.
Edited By Michael D. Powers
Bethesda, Md.: Woodbine House, 2000.
Now in its second edition, this reference guide is on its way to becoming a classic. I learned a lot about the special education system from this book and how to be an effective advocate for Sam.
You Can Postpone Anything but Love.
By Randy Rolfe
New York: Warner Books, 1990.
Almost a treatise on the life cycle of human love, this book is dense and a little hard to read, but I found it well researched and persuasive. Rolfe underscores that we all come into the world as loving beings and that layers of loving interaction sustain love’s vibrancy.
Health Resources
Sensory Integration and the Child. 2nd ed.
By Jean A. Ayres
Los Angeles: Western Psychological Services, 2004. First published 1979.
Ayres draws on extensive clinical experience to develop her sensory integration theory. It’s a seminal work for occupational therapy, as she walks through sensory dysfunction in meaningful ways. Addressing the therapeutic community, the first edition was a hard read for me, but it still helped sort through some of the odd things that Sam did—not only among five senses, but his vestibular system of movement and balance and his proprioceptive system, or awareness of his body in space. The publisher’s second edition, which marks the book’s twenty-fifth anniversary, was created to meet the continuing demand made by lay readers.
The CDC campaigned to alert family practitioners and pediatricians to the need to diagnose early. The Web site links to information about, and encourages doctors to take the time for, developmental screenings.
Checklist for Autism in Toddlers (CHAT)
This screening instrument for children eighteen months old was first described in a paper by Simon Baron-Cohen et al. published in the Journal of the Royal Society of Medicine 93, no. 10 (October 2000): 521-525. See a reprint and other tests at www.autismresearchcentre.com/tests/default.asp. Researchers have been refining the checklist, which has a U.S. version, the M-CHAT, and a Chinese version, the CHAT-23.
Journal of Autism and Developmental Disorders
Published since 1993, 1997–present are online at www.springeronline.com. This journal can be a resource for doctors and allied health professionals as well as teachers and parents. Its original research papers cover behavioral, biological, educational, and community aspects of autism.
One of Sam’s speech therapists encouraged us to read autism research, telling us to simply skip past the literature review and methodology, which can be difficult for the lay reader, and go right to discussion and results. Those sections often had new, useful insights. For example, we learned how to use video modeling to teach some social skills by reading the research studies on the technique for ourselves.
This research network, which began in 2000, includes studies identifying factors that distinguish children with autism from those without as early as eighteen to twenty-four months.
P.O. Box 33150, Denver, Colo. 80233
Sam has been in a NARHA-certified therapeutic horseback-riding program since he was five years old. Horseback riding provides stimulation that develops the trunk and core muscles that many kids with autism don’t seem to develop normally. In addition, horseback riding reinforces a social relationship between the rider and the animal; the better a horseman Sam becomes, the better his ride. Some riders benefit from one-on-one lessons led by a physical therapist trained in hippotherapy, but other riders get enough benefit from small recreational classes led by experienced trainers. NARHA is a referral and certifying agency that helps establish and maintain ethical standards of professionalism and safety. Programs accredited by NARHA have submitted to outside review of their programs and operations.
This company sells equipment for sensory integration activities, such as swings, mats, and ball pits. We adapted some of their mounting hardware to our Rainbow Play Systems swing set so that Sam could swing on a net-and-tire swing at home. We also bought a ball pit.
Educational Resources
Montessori on a Limited Budget: A Manual for the Amateur Craftsman
By Elvira Farrow and Carol Hill
Ithaca, N.Y.: Montessori Workshop, 1975.
This book is full of simple projects for things you can make or build to help your child, and they are just as fun for children without autism.
Founded by the father of a young man with autism, this publishing company specializes in educational books and guides on many topics in autism. They often hold conferences that help bring the authors of the material together with parents, teachers, and people with autism.
Our visit to the preschool in Syracuse opened our eyes to the power of inclusion for kids with autism. Over the year, Sam benefited from being held to the same academic standards as the rest of the kids. But it was a challenge. Teachers and administrators, while easy to convince
of the value of inclusive education in principle, didn’t always have the skills to pull it off. Sadly, a few lacked the generous heart needed for success, too. At those times, we were happy for his schoolmates, who sometimes did better than the adults at helping Sam adapt. He picked up more social understanding by learning to get along with them, too.
Maria Montessori was first to say that play is a child’s work. Lekotek is an international network of toy libraries, adaptive computer devices, and trained therapists who help children with disabilities
develop through play. Services we received from a Lekotek leader helped us realize that Sam got plenty of work done during his playtime, too. Our leader had a gift for finding toys that Sam responded to, even though much of her training was toward adapting toys for physical disabilities. I observed her closely and learned what to look for at the toy store. Many Lekotek chapters have family play sessions and toy lending libraries.
The Absorbent Mind
By Maria Montessori
New York: Holt, 1995.
First published New York: Holt, Rinehart & Winston, 1967.
Dispatched to teach the children living in the slums of Rome, Maria Montessori was far ahead of her time in observing and describing the way children learn, “a child’s work,” as she called it. Children are ready to soak up all they can through their five senses. I found it dense, but it helped me become a careful observer of Sam’s readiness for different things to learn, whether it was letters or numbers or other concepts. He was just as spongelike as other kids when he had
the right materials at the right time.
The Montessori Method
By Maria Montessori
New York: Schocken Books, 1964.
In this book, she describes the science behind the learning activities that she designed. The most important idea I picked up from this book was the idea of toys that teach, often designed so that a child can readily see any errors and fix them. Sam always did better with learning activities that had a good structure or routine to them.
Counseling Resources
Circle of Friends helps not only the child with the disability make friends but helps other children overcome their fear of interacting with children who are different from themselves. While this publishing company has a compendium of resources to support everyone in learning and living together, we were lucky in that Sam’s elementary school counselor developed a program around it. I asked Michael Ball, Sam’s counselor, how he came about his program, which has about twelve circles around kids who have difficulty making friends, and he offered this explanation:
At my annual counselor’s conference in Austin, I heard a presenter speak about how each one of us has circles around us. The first circle we have is our family; the second circle, close friends; third circle, groups of friends (teams, scouts, church, etc.); fourth, mere acquaintances (classmates, people we know their name and face, but not much else); and fifth, paid professionals (doctors, dentists, barbers, etc.). It is the second circle that is often the one that is the hardest for some people to develop, especially those with some type of disability that interferes with that.
I looked for books and materials. I found a few things called “Circle of Friends,” but as I worked with different kids, I began to realize quickly how different every child is and how there couldn’t
be that perfect curriculum. I think that it is about finding activities that the child with the disability can have some success with and that the rest of the group will enjoy to some extent. I have realized that Circle usually works best when I provide the activity and then let things unfold. I facilitate my groups by helping the kids solve problems and by providing them information about the nature of each disability.
I attended one of Carol Gray’s lectures and learned how kids with autism miss social cues. Then she explained how, once those cues are described, kids with autism can figure out the correct social response. Social Stories are the best of several techniques that she developed to explain these cues. We bought a sample collection of stories to get started. My favorite was a one-page story explaining how to hug. “Put your arms around someone and squeeze gently.”
