Autistic Spectrum Disorders Resource Project

About This Project

Goal of this project

The goal of this project is to provide families with tools that will help them make informed decisions. As the volume of printed material doubles every few years and there are currently over a billion web pages, our objective was to sort though large amounts of information and organize it into smaller, usable pieces. Rather than ‘reinvent the wheel', we have provided information on many of the existing autistic spectrum disorders resources that are updated on an ongoing basis. These sites contain a wealth of information related to autistic spectrum disorders. As with all resources, you must evaluate the quality and relevance for your family.

In each section you will find a Parent Recommended Starter Kit. This Kit highlights resources that were identified by families of children with disabilities and their professional partners as those that may be the most helpful to families. Many pages also include expanded lists for those who want to dig a little deeper.

How this information was developed

This information was collected by the Family Resource Centers Network of California by parents for parents as part of the Autistic Spectrum Disorders Resource Project funded by the California Department of Developmental Services.

How resources were identified

Over a twelve month period, input on content and suggested resources was solicited from California parent organizations, professionals and family members. Through a collaboration with the Autism Society of America, requests for input were distributed to the California entries in their Autism Source database. Suggested resources were reviewed by parents and professionals and the Parent Recommended Starter Kit was identified.

We would like to thank the many family members and professionals who volunteered their time to review resources and assist in the development of this website. Some of the organizations that lent their expertise included the UC Davis Center for Excellence on Developmental Disabilities, the USC Center for Excellence in Developmental Disabilities, the Family Resource Centers Network of California member agencies and the Department of Developmental Services.

Autism, Autism Spectrum Disorders, PDD-NOS, Aspergers....

Throughout this website, you may see the terms autism, autistic spectrum disorders (ASD), autism spectrum disorders, Pervasive Developmental Disorder- not otherwise specified (PDD-NOS) and Aspergers used. For the purposes of this project we have adopted the definition used by the Department of Developmental Services in the development of the Autistic Spectrum Disorders Best Practice Guidelines for Screening, Diagnosis and Assessment:

"Broadly described, autistic spectrum disorders (ASD) refers to a pattern of behaviors involving three central features-impairments in socialization, verbal and nonverbal communication and restricted and stereotyped actions-that can vary widely in terms of symptom expression, degree of impairment and developmental onset through the individual's life span. Use of the term, "autistic spectrum disorder" in these Guidelines are meant to be descriptive; the reader should not use the term autistic spectrum disorder as a formal diagnostic classification."

Consensus was reached among advisory panel members to employ the term "autistic spectrum disorder" as the most familiar expression and the one most commonly used in the literature and by professionals in practice. Broadly described, ASD refers to a pattern of behaviors involving three central features- impairments in socialization, verbal and nonverbal communication and restricted and stereotyped actions-that can vary widely in terms of symptom expression, degree of impairment and developmental onset through the individual's life span.

The conditions on the autistic spectrum addressed in these Guidelines include: autistic disorder, pervasive developmental disorder-not otherwise specified (PDD-NOS) and Asperger's Disorder. Each disorder is defined in the Diagnostic and Statistical Manual of Mental Disorders, 4th edition and the Diagnostic and Statistical Manual of Mental Disorders, 4th edition, Text Revised (American Psychiatric Association, 1994; 2000). Autistic Spectrum Disorders Best Practice Guidelines for Screening, Diagnosis and Assessment.

How do I know if the information I am reading is accurate or reliable? ^ Top

As in all aspects of your life, it is important to evaluate the validity and relevance of information that you encounter. In addition to the quick tips on internet sites listed below, you may want to visit the following sites to help you evaluate information on the internet, print and video resources before you apply them to your family.

Evaluating Internet Sites

With more that a billion web pages, the internet can be a source of good information or a source of extreme misinformation. Anyone can post a website on the internet so users must evaluate and verify the accuracy of all information. Following are some quick tips to determine if an internet site contains reliable information:

Identify the sponsoring organization for the site. Sites such as a university medical centers or federal health agencies generally contain information that is research-based. The last letters in the site address (the URL) are usually ".edu" or ".gov.", for example, "universityname.edu" or "agency.gov."
See if the author's credentials are listed
How current is the information on the site? Many sites list the date it was last updated.
Are there any references, citations or links to other resources?
Is the author presenting a biased point of view?

Web Resources about evaluating Internet sites

The National Dissemination Center for Children with Disabilities (NICHCY)

Weighing Information for Its Worth

University of Oregon

Critical Evaluation Of Information Sources

Health on the Net (HON)

HON’s mission is to promote the effective and reliable use of the new technologies for telemedicine in healthcare around the world to guide both lay users and medical professionals to reliable sources of healthcare information in cyberspace.

What does Evidence Based mean?

You may hear the terms "evidence-based," "research-based" or "scientifically-based" used interchangeably as you learn more about autistic spectrum disorders. According to A Call For Action: Improved Services for Children with Autism Spectrum Disorders (pdf) (download free acrobat reader), the final report of the California Superintendent of Public Instruction Autism Advisory Committee, there is no universally accepted definition of evidence-based strategies and interventions but examples are listed in Appendix C of the report.

Lending Libraries

With so many resources available, you may wish to borrow rather than purchase. Check the following lending libraries to see if they have the items in which you are interested.

Early Start Family Resource Centers

Your local Early Start Family Resource Center maintains a lending library with a wide variety of disability-related resources.

California Early Start Library

The California Early Start Library is open to any California resident interested in resources and information about prevention and early intervention. Patrons are allowed to borrow up to 10 items per order for a two-week period. 800-869-4337

RiSE Library

Resources in Special Education Library books and videos may be requested by phone or email and received via mail or UPS. Items must be returned by insured first class mail or UPS and the borrower is responsible for return postage fees.

Local Libraries

Your local library may be able to purchase or transfer resources to your local library branch

Hospital, Medical groups

Local hospitals, medical groups may have health resource centers that are open to their patients or the public.

Universities and Colleges

If you have a university or college in your area, you may be able to use the campus library

Many of California's 21 regional centers have lending libraries that are available to their clients.

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This portion of the FRCNCA.org website has been developed by the Family Resource Network of California (FRCNCA), with funding provided by the California Department of Developmental Services (DDS). DDS, FRCNCA, and FRCNCA.org are not responsible for the content found at the aforementioned links, nor do the links imply endorsement or promotion of the company/organization, its content, services, therapeutic treatment options, or products. DDS, FRCNCA, and FRCNCA.org are also not responsible for the policies and practices of these sites, such as their Privacy Policy, use of cookies, etc. The user visits these site at their own risk. Our website provides links as information only. Information at this site is not intended as a substitute for medical/health care. This information is not to be taken as medical or other health advice pertaining to any specific health and medical condition. DDS and FRCNCA strongly encourage consumers to speak with their physicians/health care professionals about their particular health and developmental concerns. DDS and FRCNCA do not recommend or endorse any specific tests, physicians, products, procedures, opinions, or other information that may be mentioned on this site, sites mentioned on this site, and linked sites.