For parents of children with Autism Spectrum Disorders (ASD) finding out right information on how to support their child can be a very challenging task. There are a vast amount of conflicting information on the internet on how to support children with Autism Spectrum Disorders. Many sources of information can be cost ineffective and may even cause more harm than good to the child. Therefore, it is extremely important that parents find the right information in order to support their child in the best possible way and in making right decisions for their child.
Professional Organizations and Medical Centers
These organizations have done a lot of research into autism and offer families information on the best ways to support children with autism as well as information on various services and resources to support children and adults with autism and their families. Autism Speaks, the Autism Society and the National Autism Center have extensive libraries of autism resources on their websites. Each of these resources has been reviewed by professionals in the field of autism.
Some of the most valuable information comes from the Academic medical centers with autism programs at places such as the Children’s Hospital of Philadelphia (www.chop.edu), Cincinnati Children’s (www.cincinnatichildrens.org), or the University of Rochester Medical Center (www.urmc.rochester.edu). Their web sites publish a variety of information, including extensive practical guides for families of children with autism. Guides published by the clinics and hospitals translate the latest research on autism intervention into practical strategies to assist families and children with autism and their supporters. Because these guides are written by the clinicians who treat children with autism, the language and level of detail can be too sophisticated for many families.
The American Academy of Pediatrics (AAP) has a website about autism and other developmental disorders. Their information includes position papers on autism written by experts in the field, as well as family-friendly handouts about autism and other conditions. These resources can be a good place to start for information and to learn more about the different stages of development and how your child may progress. It is unlikely that your child’s doctor has time to go through all of the information on the website with you, but it can be a good starting point for discussion.
Government Resources Offer Standardized Information
In addition to finding current information about the diagnosis of Autism Spectrum Disorders, families can also look to State Health Departments for local information on the support and services of individuals with Autism. Many of the State Health Departments have put together guides for families with children with Autism and contain such information as contact information for various support providers as well as a description of the different funding sources available for services. Department of Education technical assistance centers also publish information which will enable families and students with Autism and their respective schools to better understand the support and services that can be provided through school as well as the processes that schools must follow to ensure that all eligible students with a disability receive a Free and Appropriate Public Education (FAPE) under the provisions of the Individuals with Disabilities Education Act (IDEA).
Online Communities Require Careful Evaluation
Online forums and Facebook groups can be a great way to connect with other families who have children with Autism Spectrum Disorders. Many of these groups are moderated by a Behavior Analyst or other professionals and can be a great place to get information on topics such as travel, schools and using tools to support individuals with ASD. When looking at online forums make sure the information is based on evidence. Some online forums have better than others so look for groups that only allow approved postings from the moderator and discard any postings that are for profit.
Forums such as autism, news and personal stories on Reddit have a large number of highly active and very knowledgeable users. In many cases users will provide reviews and personal accounts of the effectiveness of various autism tools and strategies. Each submission can be voted by users to allow the most useful information to rise to the top of the page, therefore making it a very useful resource for those looking for information on Autism and its related tools.
Anecdotal success doesn’t guarantee broad applicability.
Red Flags in Online Spaces
Groups that hope to “cure” autism and advise against the treatments and health care of qualified providers should be avoided. Also, be wary of any programs or people touting a “miraculous” cure for autism. These programs are based on hope and can cost families thousands of dollars. Families are especially susceptible to these programs when they are desperate for help for their child and are willing to do anything to help their child.
Professional Networks
As mentioned above, parents and family members of individuals with autism can often consult with Board Certified Behavior Analysts (BCBAs) or other providers of autism services. They can also find professional websites and lists of resources compiled by BCBAs on the Behavior Analyst Certification Board (BACB.com) website. Additionally, parents can search for Speech-Language Pathologists (SLPs) and Occupational Therapists (OTs) and find lists of evidence-based tools and interventions on their professional association’s website. For example, the American Speech-Language-Hearing Association (ASHA) and the American Occupational Therapy Association (AOTA) websites offer information on various therapeutic approaches and ways in which families can support their child’s treatment in different settings. For example, Bierman Autism Centers has developed a comprehensive guide to using specific interventions for autism including step-by-step instructions for how to implement each intervention at home.
Bierman Autism Centers is a provider of Autism services. They have developed a comprehensive guide on how to use specific intervention tools for Autism. In this guide, they provide step by step instructions on how to implement the tools in the home environment for optimal results.
Libraries and Educational Institutions House Curated Collections
Most libraries, whether public or university-based, have free databases, books and other information concerning Autism that patrons can download and use. These typically are a very good selection of current research, in the form of databases, books, manuals and guides for parents and others caring for children with Autism Spectrum Disorders.
Verify Resource Quality Before Implementation
Make sure to evaluate the credentials of the person or organization providing the information. For example: An author with a Masters degree or higher in Special Education, Psychology, etc with experience working with children and youth with Autism Spectrum Disorders is likely to write quality information. Check to see if the author is affiliated with any institutions or organizations. Are they from a University or Center that serves children and youth with Autism Spectrum Disorders? In addition, check to see if the information that you found in one resource is also found in several other resources. For example, if you are researching one strategy for supporting children and youth with Autism Spectrum Disorders, check to see if that same strategy is also written about in several other resources.
Just because the information on autism was published recently does not mean it is current or of value to families and individuals with autism and their families. The field of information on autism is constantly changing and interventions in particular can become outdated quickly. Information needs to be crosschecked among various sources and from different authors before being implemented by families and individuals with autism and their families.
It can be confusing and often overwhelming for families to sift through the many resources that are available for individuals with autism. In order to assist families in selecting the best resources for their child and family, it is recommended that families review a list of recommended reading and resources with their child’s treatment team. In this way, the family and treatment team can discuss whether or not certain interventions and strategies will be a good fit for the child, and the family can also receive guidance from the treatment team on how to modify more general interventions in order to best meet the needs of the individual child and his or her family. The best resources for autism are those that are grounded in evidence, and which contain practical, step-by-step information regarding how to implement interventions at home. Such resources acknowledge the differences that exist between individuals with autism, and recognize that what works for one child will not necessarily work for another child with autism. The best resources for families of individuals with autism are those that can provide the family with connections to other professionals and resources that will continue to support the child and the family over time.
