Wednesday, March 09, 2011

Organizations with Misleading Names

Earlier today I was rendered befuddled when someone cited the "federal standards" of the National Autism Center, implying the organization is somehow a government organization. Moments later, I heard a radio commercial for the National Debt Relief Institute. This was followed an hour or so later by a message from the Back Pain Institute. My mind was reeling.

I cannot believe it is an accident or in any manner unintentional that both for-profit and non-profit organizations with various agendas adopt names that imply a connection to the federal government or to respected research universities.

In the autism community, the rhetorical move of including "National" or "Institute" in organization names is widespread. The following is only one example and is not meant to focus on one particular group. The organization might be wonderful -- but the naming is problematic.

National Autism Center. Since today wasn't the first time someone cited this organization to me, at least one confusing it for one of the National Institutes of Health, the name of the organization deserves some analysis. I understand why a parent might believe NAC maintained some sort of "federal standards" for autism therapies. NAC is a private non-profit organization that is a division of the May Institute, which does have "affiliations and consultations" with various universities and governments. NAC's name isn't the only problem.

NAC has published "National Standards Project" for autism treatments and therapies. The title makes the publication sound like a federally published report. It is not. It is a report that, by mere coincidence, supports the May Institute's practices and theories of autism therapy. The NAC website states:
The National Standards Report will serve as a single, authoritative source of guidance for parents, caregivers, educators, and service providers as they make informed treatment decisions. We are confident that these findings and recommendations will change lives and give hope and direction to people whose lives are touched by autism.
That certainly implies a level of authority in line with a "national" project. Parents can be excused for thinking this is a federal standard.

Parents, educators, care givers, and others need to be defensive consumers of information. If you read or hear about a group that sounds like a federal program or a university research institute, there are some steps you should take to confirm this:

1) Websites of government organizations are registered to the ".gov" generic top-level domain. Top-level domains like ".gov" are reserved, meaning not just anyone can register a website with that domain extension. Some websites try to fake government affiliation by embedding ".gov" in their full website address. For example, "" is not a government site. The ".com" indicates the site is commercial.

2) University websites end in ".edu" and are supposed to be clearly identified. Departmental sites, including those of "institutes" within a university, should have the university clearly identified on the page. For example, the University of Minnesota Landscape Arboretum website "" ends in "" which is the official domain of the university. To test this, you can search for "" and find the University of Minnesota's website.

3) The word "affiliated" is a favorite of groups wanting to imply authority on an issue. Claiming you are "affiliated" with a university is technically meaningless. I can claim I have been "affiliated" with various institutions, meaning I worked or studied at those colleges or universities. Having a page of "affiliations" does not mean anything legally, it merely claims a relationship of some unknown variety.

4) If an organization implies it is a public institution, call and ask. Seriously, you have the right to ask an organization what their federal, state, or university connections are (or are not). If they claim to be "affiliated" you know there's a problem. Bluntly ask, to which state or federal agency does your group report? Which university department oversees your research? To whom should I write at the university to verify this? As a taxpayer, you own part of any public institution.

The parent I corrected was rather upset to learn NAC wasn't a federal project. But, I reminded this person, the National Baseball League isn't a federal institution. Names are, for better or worse, simply names. The National Autism Center might be great. You can't assume they aren't, though you can ask questions. Why did the May Institute choose the name they did and why did they form a second organization?

Again, while I'm using one organization and its name as an example, that organization might be wonderful. I'm merely trying to stress that it is easy to confuse private groups for public institutions. There is a difference, and that's important.

Maybe I should fund the National Institute for Chocolate Studies. We will publish the National Standards for Cookies.