A Parent's Guide to Autism: Understanding & Helping Your Child

Millions of American families go through the challenges of having a child with autism or Asperger’s syndrome. Yet the causes of, and treatments for, these neurological conditions are far from fully understood. Parents of a child on the autism spectrum can often feel as if they are going it alone.

Fortunately, there are enough sympathetic communities and informational resources on the Internet that this should never be the case. The facts, book recommendations, online resources and web communities listed below should help concerned parents whose child has just received an autism or Asperger’s diagnosis get started on the road to understanding what their child needs and how to provide it.

Quick Facts - Book Materials - Online Resources - Online Communities - Asperger's Syndrome

Quick Facts

• Autism is distinguishable by a triad of symptoms: impairments in social interaction, impairments in communication, and restricted interests and repetitive behavior. (Wikipedia)
• More children will be diagnosed with autism this year than with AIDS, diabetes and cancer combined. (AutismSpeaks.org)
• Most parents of autistic children suspect that something is wrong by the time the child is 18 months old and seek help by the time the child is age 2. (Google Health)
• Autism affects 1 in 170 children and 1 in 70 boys. (AutismSpeaks.org)
• Since 2007, April 2 has been designated World Autism Awareness Day. (Wikipedia)
• Asperger’s syndrome is a disorder on the autism spectrum that carries many of the traits of autism but with less impairment linguistically and cognitively. (Wikipedia) 

Book Materials

• 1001 Great Ideas for Teaching and Raising Children with Autism or Asperger's by Ellen Notbohm and Veronica Zysk. This book is absolutely encyclopedic and an essential resource for any parent or teacher who has ever struggled to reach an autistic child.
• A Child's Journey out of Autism: One Family's Story of Living in Hope and Finding a Cureby Leeann Whiffen. This is the story of two parents’ battle to remove the autism diagnosis from their child. Through a long commitment of time and financial resources, they are able to restore their son Clay to neural normalcy through a program called Applied Behavior Analysis.
• Animals in Translation: Using the Mysteries of Autism to Decode Animal Behaviorby Temple Grandin. This national bestseller by one of the most prominent autistic voices in America weaves autobiography with expertise gained through a scientific career spent working with animals.
• Autism Life Skills: 10 Essential Abilities Each Child Needs and Deserves to Learn by Chantal Sicile-Kira. This book’s focus is interviews with autistic adults, recounting the skills they learned in childhood that helped them with success. Small things, like learning how to order at a restaurant, can translate into lifelong tools for interaction.
• Changing the Course of Autism: A Scientific Approach for Parents and Physicians by Bryan Jepson, M.D. and Jane Johnson. If you are curious about the latest scientific findings on autism, this is your book.
• The Curious Incident of the Dog in the Night-Time by Mark Haddon. This novel told from the point of view of an autistic 15-year-old boy is both a murder mystery and a fascinating character study, as it reveals autism to be not just a condition but a key personality trait that influences the way its narrator, Christopher Boone, sees the world.
• Cutting-Edge Therapies for Autism, 2010-2011 by Ken Siri and Tony Lyons. This anthology brings together contributions by scientists, researchers and other autism experts. It offers a good grounding in the merits and disadvantages of current autism therapies.
• Louder than Words: A Mother's Journey in Healing Autism by Jenny McCarthy. A personal account of struggles and successes with raising an autistic son, from a celebrity perspective.
• Playing, Laughing and Learning with Children on the Autism Spectrum by Julia Moor. This is a practical guide centered around activities and lessons for young children with autism.
• Ten Things Every Child With Autism Wishes You Knew by Ellen Notbohm. This heart-tugging book provides information about autism for the benefit of parents, combining anecdotes with scientific evidence to dispel common myths.

Online Resources

• Autism Inspiration: This site offers not just inspiration but practical resources to teach and manage kids with autism. Work with children on their motor skills, writing skills or social games.
• Autism Research Institute: This organization raises medical funding for autism research. It also has a lot of individual resources to read up on.
• Autism Speaks: A major autism charity and fundraiser. It sponsors walks and corporate events to help in the fight against autism.
• Autism Society of America: A large and wide-ranging autism organization. It organizes events, funds research, monitors news and lobbies for autism-related reform.
• Autism Today: This is a deep well of educational resources about autism. You’ll need to become a member (membership is free) to access most of the content.
• Autism Web: This is a useful list of links for all types of autism information. Check out the syllabus for Yale University’s course “Understanding Autism,” or download a 100 Day Kit for what to do in the first 100 days after your child receives an autism diagnosis.
• Autistic Traits: A Plus for Many Careers: This article shows one of the common silver linings to autism: high intelligence and concentration abilities. Autistic children may thrive as scientists, computer animators or museum curators, among other careers.
• Protecting the Child or Adult with Autism: This guide will tell you some common-sense things you can do to protect your loved one with autism out in the world, such as sewing an I.D. tag into their shirt collar.
• Temple Grandin: The Wikipedia page for inspirational autistic animal rights and professor Temple Grandin. An HBO biopic on her life starring Claire Danes came out in February 2010.
• They're Autistic and They're In Love: This moving Glamour article profiles an autistic couple in their twenties. He’s a weatherman and she is a barista at Starbucks.

Online Communities/Forums

• AutismOne: One of the preeminent autism resources on the Web. It has a social community, blogs and even a radio network with autism-related webcasts.
• Autism Blogger: This blog is focused around stories and shared experiences of autism. It encourages users to create an ID, sign up and join the discussion.
• Autism Hangout: A thriving web community with many categories of discussion, such as education, relationships, allergies and foods.
• The Aut Spot: This cutely named autism resource has a web community, an informational library and a calendar of upcoming events complete with photo albums.
• BBB Autism: An online community linked around the MSN Network for those who have loved ones or family members with autism.
• HealthBoards: The autism board on HealthBoards is very active, with questions and topics such as “How do I tell my child they have autism?” and “Three year old won’t sleep!!!”
• IAN Project: IAN stands for Interactive Autism Network. The forum brings together autism sufferers with scientific researchers to create a dialogue that is not only cathartic but potentially valuable for researching a cure.
• MD Junction: A casual, open message board for users to post brief or extended conversations about autism.
• Train4Autism: This organization brings together athletes with autism fundraising events. Recent achievers include a climber who scaled Mt. Aconcaqua for autism, and a bodybuilder who completed the Ironman Triathlon under the site’s sponsorship.
• WrongPlanet.net: This community is an important online resource for individuals with autism and Asperger’s syndrome, as well as their parents and friends. It has original content and interviews with autism-related celebrities such as Joey Travolta, producer of the film Normal People Scare Me.

Asperger's Syndrome

• Aspergers.com: This site is an all-purpose resource for information on Asperger’s. It has a discussion group and even a list of recommended clinicians.
• Asperger Info: An international discussion group revolving around Asperger’s, its thousands of members post on the message board and get feedback. Adults with Asperger’s, as well as parents of children with Asperger’s, are welcome to post.
• The Asperger Parent: How to Raise a Child with Asperger's Syndrome and Maintain your Sense of Humor by Jeffrey Cohen. This book is focused on what parents go through, and is full of personal and humorous anecdotes from one Asperger’s parent.
• Asperger's Syndrome: The Wikipedia page on Asperger’s, useful as a starting point for understanding this complex condition.
• The Asperger's Syndrome Institute: This institute, founded by John Ortiz, PhD, has books by Dr. Ortiz available as well as links to useful outside resources.
• The Best Kind of Different: Our Family's Journey with Asperger's Syndrome by Curt and Schonda Schilling. The legendary Red Sox pitcher and his wife, who is a melanoma survivor, recount their experiences before and after their son was diagnosed with Asperger’s.
• The Complete Guide to Asperger's Syndrome by Tony Attwood. According to its publisher, this is the definitive handbook for anyone afflicted by Asperger’s. The author is considered to be one of the preeminent researchers in the field.
• Documentary about Asperger's Syndrome: This nine-minute clip from a longer documentary has been posted on YouTube by the subject, who has Asperger’s. Seeing how people with Asperger’s interact, particularly with each other, makes the condition tangible in ways that simply reading about it may not.
• Kids Health: Asperger Syndrome: This is a good resource for understanding the details of what Asperger’s means for you and your child.
• The Online Asperger Syndrome Information and Support Center: This organization, which calls itself OASIS for short, has partnered with another organization called MAAP to combat autism with blogs, forums and newsletters.
• Neurodiversity.com: This site has selected a truly impressive list of links to help you continue with your Asperger’s research. A column on the left has links to book resources on Amazon.com.
• Parenting a Child with Asperger Syndrome: 200 Tips and Strategies by Brenda Boyd. This is a practical guide to many aspects of dealing with an Asperger child. User reviews call it “helpful” and “delightfully logical.”
• PsychForums: The Asperger’s forum on PsychForums is very lively and updates often. Recent topics include “AS & Parenting” and “Son diagnosed, maybe I am as well.”
• Spectrum of Support: Formerly OC Asperger Support Group, this group welcomes individuals with Asperger’s or high-functioning autism. They have weekend meetings in Orange County, CA as well as an online discussion forum.