Resources for Parents

Resources for Parents

In the “old days” (say, before the mid-1990s), there was no such thing as the internet. When a person wanted to find out information, he or she put on hiking boots and started the long uphill walk (both ways in the snow) to the local community library. Once there, he or she had to look for resources and information in a card catalogue, which directed people to various books throughout the library. Of course, libraries continue to be great free resources of information.

Today, we also have the world wide web and all of the resources that are associated with it. Luckily, most libraries have internet connections so new resources and research are also available to everyone—even if you do not have internet access in your home. As autism gains recognition, there are more and more websites devoted to general information about the disorder. Even better, institutions and colleges that used to be virtually off limits to the general public, now throw open their virtual doors allowing hoi polloi to browse their voluminous tomes of information and research.

While much of the research available is technical jargon that might be difficult for even the most steadfast student of human development to read, there is still a great deal of common sense material available with just a few clicks of a button. Many of these institutions will have watered down frequently asked question (FAQ) sheets or general information that is fairly easy to find (and if you’d like, printout).

One such organization is the National Autism Association (www.nationalautismassociation.org). They have a great deal of information about autism in general as well as a list of local autism chapters that are spread intermittently throughout the continental United States. In addition, they have a section devoted exclusively to various treatments for autism, although, at this time, they do not make a recommendation for one type of treatment over another.

Don’t be afraid, however, to check out resources outside of the country, such as the National Autistic Society (NAS), which is based in the United Kingdom (www.nas.org.uk). The NAS is a leader in the fight to bring autism awareness in the U.K. and has specific information for parents, grandparents, partners, siblings, etc. They also have a media center, which could be important if you are acting as an advocate because you do not feel that you are getting the response you deserve. As a friend’s daughter once said, “I’m going to ask the same question, but this time I want a different answer.”

Another site that has a wealth of information is the National Institute of Neurological Disorders and Stroke (www.ninds.nih.gov). Again, because this is a large government institution, it is a clearinghouse of information. There will be generic information for the layperson as well as more detailed information that a seasoned reader will be able to sink his or her teeth into including research literature, and other resources and organizations that provide information for parent’s of autistic children.

There are, of course, other good sources of general autistic information. If you are a parent, grandparent, or caregiver of a child who was has been diagnosed with autism, begin your internet research to orient yourself with the basic facts. About.com and WebMD.com provide basic autistic information and include references to other sites and organizations.

Parents and caregivers should also talk with their child’s doctors and therapists and ask questions about issues that concern them and their autistic child. It is likely that your child’s medical team will be able to point you toward even more resources for autistic children and families in your community.

Whatever resources you decide to use, try to remember one thing: It is vital that you educate yourself. There is nothing easy about being a parent of an autistic child, but it’s even harder if you don’t understand the neurological disorder.