HealthyChildren.org is the health information component of the AAP's website. Their autism Information is linked here.
- Sound Advice on Autism. Recorded Interview with Physicians, Researchers, and other Experts. Produced by the American Academy of Pediatrics, link here.
Learning about the Autism Spectrum
Families new to a diagnosis of autism spectrum disorder (ASD) have many questions about what exactly this condition is. It's understandably confusing because ASD represents a very wide spectrum of challenges and differences in the way a person experiences the world, organizes information, and interacts with others. A piece of wisdom often quoted to new parents goes like this: "If you've seen one child with autism, you've see one child with autism."
There are a number of well developed website and books that explain to parents and to the general public what researchers have discovered about the nature of autism. If anything, there's far too much information, and you can soon find yourself swimming in conflicting ideas about this complex subject. It's important to know your own learning style, set your own pace, and select materials created by well respected organizations like the American Academy of Pediatrics.
Scientists are discovering new information about autism every day. An online publication like the Schafer Autism Report or the Easter Seals weekly parent support letter, "Just Plain Good ASD Stuff" will alert you to new findings, as well as developments in public policy, education, and changing attitudes about ASD. There are also a couple of excellent lending libraries available to NH residents: The NH State Library System will deliver books, videos, and other materials right to your mailbox free of charge. NH Family Voices also has books to loan to you.
We are fortunate to have more and more individuals with ASD who have been willing to share with readers or viewers what they value in their unique understanding of the world around them.
These stories can give family members new to a diagnosis the opportunity to revise their understanding of the perceptual differences, preferred activities, and behaviors associated with ASD. First-person narratives are a powerful tool that can counter negative stereotypes and help us to envision a positive future for those who experience ASD.
Sources of Information
The Family Resource Connection
Any NH resident may borrow books and videos about parenting issues through the State Library System for free. Materials are sent to your home with a postage paid envelop for convenient return. Their catalogue includes over 271 materials about ASD. One important caveat, however: Research is rapidly changing in this field. The majority of these materials were published 5 or more years ago. If browsing, you may wish to sort by publication date so that you see more recent materials first. The NH Council on ASD is working to raise funds to update this collection. For more information, link here.
"Just Plain Good ASD Stuff"
Compiled by a parent support provider from Easter Seals, NH, this semi-weekly,on-line newsletter focuses primarily on events in the Seacoast region. However, parents statewide ask to be put on the mailing list so that they can enjoy Viki Gayheart's wisdom and wit, along with well selected information about living with ASD. To join the mailing list, contact Viki at this link
The Schafer Autism Report
For a $35 annual subscription, Lenny Schafer of Sacramento, CA will send you a digest of all the significant stories related to ASD that have appeared in newspapers, research journals, and other mainstream media within the last few days. Information includes policy reform, research findings, forensic reports, special education issues, personal success stories and opinion pieces. While Schafer has an acknowledged bias toward a bio-chemical explanation for increasing rates of ASD, he is balanced in his selection of articles. There is no better way to stay current on ASD. Free trial subscriptions and/or scholarships can be arranged through Schafer's non-profit organization, link here.
The advocacy arm of Autism Speaks, this is far and away the best website for keeping up-to-date on national public policy as it relates to ASD. Sign up for advocacy alerts, link here.
The Thinking Persons Guide to Autism
Their mission statement reads, "Thinking Person's Guide to Autism (TPGA) is the resource we wish we'd had when autism first became part of our lives: a one-stop source for carefully curated, evidence-based information from autism parents, autistics, and autism professionals....." for more, link here.
New Hampshire Council on Autism Spectrum Disorders
Putting the Pieces Together in the Granite State
LEARN the SIGNS, Understanding Autism
The NH Council on Autism Spectrum Disorders
21 S. Fruit Street
Concord, NH 03301
Copyright (c) 2012 NH Council on ASD, all right reserved
- American Academy of Pediatrics. What Every Parent Needs to Know by Alan I. Rosenblatt, MD, FAAP, and Paul S. Carbone, MD, FAAP.
- Autism Speaks. "The First 100 Days." Be warned: Some parents find this booklet overwhelming; others say it was invaluable.
- National Institute of Mental Health. See especially their "Parents Guide to Autism Spectrum Disorders,".
- Clinical Trials. For a list of government-funded clinical trials involving the nature and treatment of autism spectrum disorders, link here.
- The Interactive Autism Network (IAN). The world's largest database of autism-related information, the IAN Community publishes many articles based on what they have learned from the thousands of families that voluntarily register with IAN and answer detailed questionnaires.
- Maternal and Child Health (MCH) Library at Georgetown University. The MCH "Knowledge Path" for autism spectrum disorders provides links to information that meets the highest quality standards, linked here. A collection specifically for families.
Two excellent books for parents new to a diagnosis of ASD.
Temple Grandin, PhD is one of many individuals with ASD who shares her unique experience.