IAN Open for Autistic Adults

The Interactive Autism Network (IAN) has started an adult section. Formerly only the parents of autistic children were involved in IAN. From the Kennedy Krieger Institute article,

"By expanding the IAN Project beyond children, we will provide much-needed insight that will ultimately enable caregivers, the community, legislators, advocates and researchers to better serve adults with autism," said Dr. Paul Law, Director of the Interactive Autism Network at the Kennedy Krieger Institute in Baltimore, Maryland. "By surveying and registering adults with autism, the IAN Project will be able to gain a clearer picture of how adults with autism are living today, and connect them with researchers who are working to understand the disorder at all stages of life."

I've been struggling with this post for about a week, because on one hand, including autistic adults directly in research as IAN is now doing is critically important. On the other hand, there are general ethical concerns with the current state of autism research quite apart from IAN but which affect it and can't be ignored.

Some basic tips for deciding whether you want to participate in any research are:

1. What are the aims of the research project? Do you agree with those aims?

2. Who are the researchers? Are they credible? What is their agenda? Who are they affiliated with? Can you trust them to do valid research that doesn't conflict with your own ideals?

3. Research the researchers a bit--when they write up their results do they use respectful language? Do they use respectful language when they are interviewed about their research, when they give presentations? Do they refer to their research participants as human beings or as objects?

4. If in the U.S. or countries with similar checks, has the research been approved by a credible Institutional Review Board?

5. Is there a consent form and does it include a clear description of what you will be asked to do, the risks and benefits of participation, and your rights as a participant?

IAN definitely passes 4. IRB approval and 5. clear consent form. However, the very nature of IAN means 1. - 3. are by definition unclear. The data entered into IAN by participants can be used by any researchers who participate in the program. In other words, the data entered by participants goes into a pool of information, or a database, that can be used by any researchers who use IAN. Who these researchers are is unspecified. What research the data will be used for is unspecified. While I'm sure that quacks and blatantly unethical researchers are not approved to access IAN data, some questions remain:

1. What is the chance that my data will be used for research that I don't approve of and wouldn't want to participate in?

2. What is the chance that incorrect conclusions will be drawn from my data due to bias or lack of direct engagement on the part of the research team?

3. What is the chance that reports and papers that use my data will use terminology I find offensive?

In a different world, autism researchers and autistic adults would have an aligned agenda, researchers would be very cautious about checking their theories vs. direct experience, and researchers would use respectful language when discussing their research. In that world, I'd register for IAN immediately. But as the current state of things stand-- ? This is not a problem with IAN specifically; it is a problem with the overall state of autism research.

In the end I'll likely be unable to fight my enormous curiosity and register. Plus there's also a chance my data will be used for some research I would like to see done. But this is definitely not a decision I, or anyone, should take lightly.