In Part 1 I enumerated the many benefits of joining an online support group. But what are the pitfalls and dangers?

• Misinformation might be exchanged in online communities. Sometimes, online community members misunderstand, misinterpret, or unknowingly communicate inaccurate, second-hand information about learning disabilities and related laws, services, or research. How much information is out there and how much danger depends on your perspective. As in face-to-face life, there are people online who try to exploit the “quick-fix” myth. And there are parents whose children have been greatly helped by a therapy or intervention who forget that one size doesn’t fit all. But being a critical consumer of information applies both to online support and all support, resources you obtain.

• Very few organizations are able to provide expert guidance to the discussions in their online communities. This caution was listed in the Schwab Learning article, and I would concur that very few online support groups are led by professionals who are experts in the topic being discussed. In fact, all the online support groups I’ve been involved with are moderated by parents who have children with the disability(s) being discussed. Sometimes the owner/moderator is also a therapist or other professional, sometimes other professionals participate, but more than likely the bulk of the communication is parent-to-parent. While this has it’s pitfalls (such as lack of expert information being dispensed), it does have the decided advantage of another parent who has “been there; done that”.

• The group can get off-topic and cliquish! Well-established online communities can sometimes steer off-course into discussions unrelated to the support topic that is the main goal of the group. And, as in face-to-face support groups (unless a moderator directs otherwise) a few of the folks do most of the talking. So online support groups have their own “personalities”. But they often have their own rules on how to handle off-topic discussions and delicate topics such as religion or politics.

• There are limits to what the written word can communicate. This is the pitfall that often hangs me up. Tone of voice, body language, non-verbal cues are missing from this mode of communication. Miscommunications can occur, and lead to misunderstandings and hard feelings. Especially when the topic is as sensitive as parenting special needs children. Online support group participants should use prudence when participating in these groups. I always re-read my post before sending, just to double check things like tone and clarity. A good rule of thumb is not to say anything online that you wouldn’t say to the person if they were sitting in the room with you. Another good thing to remember is that this written communication often does “live on” in archives, unlike the spoken word, which is only remembered by those who heard it.

• Being anonymous can be either a negative or a positive. On the one hand, being anonymous may allow you to feel more comfortable about revealing details of your situation that feel too personal to share in your family, school, or community. And my experience has been that sharing this level of detail has allowed for often deep discussions, and subsequent friendships, with others. But being anonymous also allows us to be “whoever we want to be”, meaning we can make our situation sound like whatever we want, either consciously or subconsciously. And we do so by the details we give out (or the ones we omit).
• We’re not as anonymous as we might think. This, too, is another pitfall that users of online groups need to be aware of. Just because you don’t use your name or your full name or identify where you live, etc., doesn’t mean that someone can’t figure out who you are, especially as you communicate over time. If it’s important to you to remain anonymous, then you want to check the rules of the group. Some groups don’t keep archives of the mail or chats; while others allow even people who are not members of the group to read them.

Still, the benefits of online support groups generally outweigh their pitfalls, if you keep in mind the source of the information is not a professional and you recognize the other limitations of this medium. It does allow a community of people who are all dealing with similar issues to communicate, at a schedule that’s convenient to them, without paying for gas or adding mileage to their cars (and without having to find a babysitter).

In the next part I’ll list some online support groups that are good examples.