5 Reasons to Avoid "World Class" Autism Centers

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There are quite a few "world class" autism in the United States. There's Kennedy Krieger in Maryland... The MIND Institute in San Francisco, ... these and several other top organizations do a great deal of important work and provide the world with reams of research papers on topics ranging from treatment protocols to genetics. These organizations are typically quite well-founded, and they're staffed by some of the smartest, best-educated autism researchers in the world.

You'd think that living near such impressive institutions would be a wonderful "plus" for a family with a child on the spectrum. But there are some serious downsides as well.

  • Research institutions are focused mainly on...research. Yes, you can get one of those top docs to see your child -- if you wait many months -- but that top doc's main focus is not clinical service provision, it's research and publishing. If you really, really want to see the top person in the autism field, you may see him or her very infrequently, and for short periods of time. Smaller treatment centers and service providers are more likely to focus specifically on patient services, be available on relatively short notice, and be willing to get to know you and your child.
  • Researchers -- even when they see patients -- are not tied into the local community. Ask a top doc at a major autism center "which preschool is best for my child?" and you'll almost certainly receive a shrug coupled with a pre-printed sheet of available options. No, that researcher has no idea what any of the preschools offer, or whether their program are likely to be ideal for your particular child. Local agencies and providers, on the other hand, are more likely to come from your neck of the woods and really know the programs and schools available. Their kids may even be in those schools. As a result, they may have better insights and be better able to help you make smart choices.
  • Top autism institutions are not usually set up to provide comprehensive programming for you and your child. If you want things like support groups, buddy groups, school advocacy, 1:1 aides or community supports, insights regarding residential programs, or other services -- you'll almost certainly have to look elsewhere. Local organizations, on the other hand, are often closely tied to parent and provider groups, and may be able to help you find the support you need, right within the community.
  • Large research organizations are often able to offer you access to clinical trials -- projects that are testing out new therapies, medications, or theories about autism. Clinical trials are very important, as they are a key tool for exploring and better understanding autism, its causes, and its treatments. But clinical trials are not the same thing as an ongoing, customized, personal treatment program. If you're interested in clinical trials, it makes good sense to tap into a big city research center; if not, it may not be your best option.
  • When you live in a big city with big, important autism research groups at your fingertips, the community assumes that you have all the resources and opportunities you need to cope with autism. But the reality is that those organizations don't provide inclusion supports, schools, arts programs, buddy groups -- or any of the day to day services you really need to live life well with autism. In smaller communities, the assumption is that supports are NOT in place -- and, as a result, you may find that the community is more willing to reach out, and connections are easier to make.

    Are world class autism research centers important? Absolutely! Will they help you make daily life easier or more successful? The answer isn't always "yes."

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