Researching Autism? Here Are 7 Tips to Help You Get Started

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woman on computer. Getty Images

You've recently learned that your child has an autism spectrum disorder.  And, being a good parent,  you want to find out everything you can about your child's disorder, so that you can find the best therapies, schools, treatments, and outcomes. You may feel a little panicky -- and eager to find solutions and put them into place.

While you'll find no lack of information about autism on the Internet, though, you might want to take a moment (and a deep breath) before leaping into Internet research.

  Yes, there are useful and reliable sources of information on the Web -- but there are also an amazing number of potentially misleading (or limiting) sites and "experts."

So where do you start? Here are a few tips to help you find the most reliable and useful information available:

  1. Put your prejudices aside. While there are plenty of reasonable people who dislike and disbelieve the US Government, large autism foundations, and other "authorities," these organizations do provide a great deal of information that is likely to help you along. Similarly, there are plenty of reasonable people who believe that ONLY government agencies and people with degrees from major universities can provide useful information -- but in fact there are quite a few bloggers, therapists, adults with autism and parents of children on the spectrum who are surprisingly knowledgeable and helpful.
  2. For basic information, start with government sites.  You may or may not believe that the CDC, NIH, or any other government source is absolutely credible -- but the basic information about autism that you'll find on the NIH and CDC sites is a good place to start.  There, you'll find solid, up to date information about diagnosis and symptoms, along with links to regional research centers that might be helpful to you.
  1. For more in-depth information, consider major autism funders and research institutions such as the MIND Institute in California, the National Autism Foundation in the UK (a great source), or even the oft-denigrated Autism Speaks.  Yes, Autism Speaks is a 500 pound gorilla in the world of autism advocacy, and yes, they have done some really questionable things. But they also host an extensive website with a surprisingly rich array of "tools," directories, and other resources. You are not required to love Autism Speaks to use their resources -- and they really are useful.
  1. Avoid zealots.  If you happen upon a site written by a single individual or group that appears to have a political agenda, know that they are almost certainly providing biased and questionable information. And there are plenty of political agendas in the autism world.  Of course, if you're curious about their agenda that's another story -- but don't expect to find useful, straightforward information on their site.
  2. Avoid individual therapists who are promoting their own products or therapies -- at least until you feel you have a good handle on your own child's particular needs and abilities. Yes, there are some terrific therapists and therapies out there, but of course each is promoting his or her own perspective on the causes, treatments for, and potential cures for autism. If you're brand new to the subject, you're unlikely to be ready to analyze their perspectives and make your own decisions about their claims.
  3. Do read sites and blogs by adults on the autism spectrum -- but be aware that their experience and perspective represents only their own experience and perspective. Individuals such as Stephen Shore and Temple Grandin, who are both authors and speakers with autism, can provide a great deal of insight -- but  they may also be completely different from your child.
  1. Go local.  Once you have a good understanding of what the autism spectrum is, what some of the possible causes and treatments are, and how the disorder is managed in schools and communities, it's time to find local resources. Use your school district and Google to find parent groups, general support groups, agencies, and other resources that can help you select local therapists, develop your child's educational program and IEP, and find any additional help you may need.

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