Autism - You're Not Alone
Susan Brissette | Best of Best
image by: Kevinfruet
One of the most common disorders afflicting children today is autism. So we figured out some of the best resources. We hope it helps!
As most of us know, parenting is always a big job. Every parent wants the very best for their child and most parents work hard to be sure that their children's needs are well met. When your child suffers from special circumstances, your job becomes even more crucial and more complicated. Parents of children with autism know that only too well.
According to the Center of Disease Control, autism is diagnosed in 1 out of 150 children today, making autism more prevalent than childhood cancers, multiple sclerosis and cystic fibrosis combined. Savvy parents turn to the Internet to help them find answers and strategies for helping their children with autism. The problem is, the Internet is a huge repository of information about autism, sometimes helpful, sometimes not.
After reviewing hundreds of websites (there are over 16,000,000 hits for autism in a typical Google search), we’ve identified autism spectrum disorders sites that we think more than adequately cover the world of Autism. You’ll notice that we don’t include some of the major sites or some of the sites that come up early in a Google “autism” search.
That’s because we found that many of the commercial sites are just that, commercial, selling a specific tool or point of view. Their high ranking in the search results is more an indication of marketing strategy than of quality. And many of the major sites are repetitive with content we have listed here, which is not to say that they aren’t good resources. So, here's our list.
This site is dedicated to educating parents and professionals about how to recognize, diagnose and treat autism. It contains easy-to-use milestone lists, monitoring tools and lots of very practical advice. There are tools available that you can provide to professionals who may need extra coaching on how to handle or deal with your child’s autism. We like the fact that this site is based on up-to-date clinical research.
This site is great for families with recently diagnosed children because it specializes in the provision of bridge services while awaiting publicly funded programs. Their Early Intervention Network attempts to increase public awareness of Autism's early warning signs with its 'Red Flags of Autism' campaign. And the program 'More than Words' helps parents develop the special skills required for an Autism Spectrum Disorder child.
This is a fascinating website that matches children and families with researchers in the field. The site includes an active forum, a great deal of excellent background information and many, many useful articles. We appreciate that this site is very active, frequently updated and relies on scientific sources for its information.
We liked this site for two reasons. First, it offers a mentoring service, matching experienced parents with families who have a newly diagnosed child. We don’t know how well the service works for any specific situation but it’s a wonderful idea. We also found information for emergency care professionals on the site, something that we haven’t come across too often. This information is very valuable and worth downloading from the site. We were excited to find a directory of services by state with listings such as autism-friendly dentists. However, we found that there aren’t too many listings available in the directory. We say A for effort and hope that the work continues and the directory grows.
This is a slightly quirky site which seems to be blog-based. It’s a bit difficult to follow and there are a lot of commercial distractions going on (probably to pay for maintaining this site run by the parent of a child with autism). However, we liked it because there was a real ring of authenticity to the material there. Plus, the site owner publishes and updates a list of top 20 fun sites for children with autism and that seemed like a great service.
This site consolidates blogs about autism. The blogs cross all areas including adults with autism blogging about their lives, political issues, parents blogging about their experiences or documenting their children’s experiences and so on. The material can be controversial but it’s a real up-to-the-minute view into autism in daily lives. The left hand side of the homepage lists all of the blogs it indexes by category. You can use this site as a jumping off point to find blogs you like.
Using the world of art this unusual and captivating site conveys its message in its mission which states "through original works of art, music, literature, poetry, photography and video, as well as many other resources, Awe in Autism seeks to provide inspiration and encouragement to those affected by autism." It's worth coming back to this site on a regular basis!
While this may seem to be primarily an advocacy site, it has some of the best resources we’ve seen including links to local chapter websites that provide specific local information. There’s a “science” section which is easy to read but very in-depth, with enough information to satisfy the need to understand the science behind autism. There’s also a video glossary that covers words and terms that are useful in working within the autism world. The section titled “Autism and your family” has wonderful advice and the section titled “Your Child’s Rights” is a succinct description of the services your child is entitled to under the law. One of the most valuable tools we’ve seen anywhere is the “First 100 Days” eBook that helps parents organize themselves in the first 100 days after receiving the diagnosis of autism.
This site specializes in the genetics of autism. It’s not necessarily useful for general information but it’s one of the few sites we’ve seen that provides such an excellent look at the scientific thinking behind the genetic research. The site is very up-to-date and will give you a very clear look at the state of the art in this area. And this site will probably not be your first stop in your information gathering but it’s definitely worth marking as a favorite and visiting from time to time.
The United Kingdom’s National Autistic Society site is an excellent resource for everyone. We particularly liked their sections with advice for grandparents, siblings and employers. There’s also a section where you can sign up for research studies, participate in research surveys, contribute articles to the site or volunteer to work with authors interested in writing about autism.There’s even information available for professionals such as architects to help them create autism-friendly spaces. This site is a treasure trove of interesting and less common information that transcends national borders.
There are several large Canadian autism sites. We like Autism Society Canada best because of the extensive practical information provided. We especially appreciated the section on how to evaluate treatment programs which gives parents the tools to stay in the driver’s seat, even when they are the only non-professionals in the discussion. We also found the section for adults with autism to contain very useful information. Finally, the resources section has a huge number of links covering everything else you might need to know about autism and autism services.
About.com is an enormous content site where you can find information about just about anything. Each topic is managed by a topic editor who keeps the information current. The autism area is huge, stuffed with information, resources, commercial offerings and so on. You can get lost in all of the material that is available there. The articles are well written and constantly updated. This site is worth checking frequently.
We would be remiss if we didn't supplement our list with Wrightslaw, the huge disabilities law website with everything you could want to know contained somewhere in its depths. That’s the good news. The less good news is that it can be overwhelming to find the information that you need. You can get to that information most efficiently by entering the term “autism” into the internal search box. You will be taken to an area that pulls together all of the info you need in one place. There is also excellent advice on how to advocate for your child’s special needs with professionals, especially within the school system.
The Bottom Line
We hope this helps. Of course there are hundreds and hundreds of excellent sites available and over time you may want to visit many of them. You're not alone.
Published June 04, 2010, updated June 14, 2012
Susan M. Brissette brings 30 years of experience in healthcare, ranging from positions as Chief Executive Officer and Chief Operating Officer in the acute care hospital setting to Senior Executive for a major national healthcare management company. Ms. Brissette holds a BS in Biology from Northeastern University and an MS in Health Policy & Management from the Harvard School of Public Health. She has lectured on healthcare management at the University of Massachusetts, developed a healthcare delivery system for a mining company in Cajamarca, Peru, and recently led the Afghanistan Public Health Redevelopment Task Force for the Washington Harvard Alumni Group. She has consulted on healthcare projects in Poland, Romania, Israel, Kuwait, Peru, Canada, and Mexico. She now owns and operates SB Cass Associates, a healthcare consulting firm located in upstate New York. Ms. Brissette’s consulting practice handles client projects ranging from business plan development for clinics, assisted living facilities, and clinical research groups to the development of market research reports for the pharmaceutical and biotechnology industries. She has written dozens of healthcare articles published on the internet and in national professional and consumer journals. She has also authored or edited online courses on HIPAA compliance, corporate security, childhood obesity, and business ethics.
Susan Brissette can be reached at SB Cass Associates [email protected]
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