10 Tips to Avoid the Pitfalls of Participating in Autism Facebook Groups

How many of us participate in autism Facebook groups? I’ll bet quite a few of us do in an attempt to learn more about how to help ourselves or a loved one. But should we rely on them so much for our answers? I think we should be cautious about participating too much in such groups. Let me explain why.

First, I am NOT saying we should not participate in FB groups. I’m not saying that at all. They serve a purpose, and there is much good to be found in them. But I’d like to share a few experiences I’ve had and then offer a few pointers to consider before participating in them.

A Negative Facebook Encounter

About a year ago, I joined a group for parents with children who have disabilities. I thought it was full of ladies like me, with similar experiences and mind sets. We even shared the same religion. Unfortunately, after my first attempts at commenting in the group, I left immediately. So what happened?

Part of it was my fault–accidentally. The jist of the initial comment was that a woman’s grown daughter had taken another grown daughter to visit a local children’s museum. The latter woman is cognitively disabled. Biologically, she’s a woman; cognitively she’s a child. The museum has a unique entrance policy: children are the patrons. Admission is charged per child (up to age 12), and each child can bring up to 2 adults. In other words, if you have more than 2 in your party who are over age 12, you need to bring another child.

Why this unusal admissions policy? It’s actually quite brilliant: it keeps adult predators at bay and ensures a child-size audience throughout the museum. The whole point is that once you enter their doors, you step into a story. Everything is child-size: costumes, chairs, other furniture, props. Even the bathrooms utilize child-size toilets (with a few that are adult size). Kids feel totally safe here, and the experience is magical.

. . . In enters Grown Daughter 1 with Grown Daughter 2. Admission is declined (guests didn’t check policies available online). Daughter 1 argues and asks to see manager. Manager makes a one-time exception while making it clear that return visits must adhere to the rules.

Mother to both writes in FB group that Daughter 2 was discriminated against because, though biologically she’s an adult, cognitively she’s a child and should be admitted without having to follow the admissions policy. Mom posts their experience because she just wants to vent. This is where I goof. I assume she simply misunderstood the museum’s admissions policy, because she doesn’t explain it when telling her side of the story.

Mom gets upset with me because I mention how wonderful the museum is. I mistakenly point out that Daughter 2 can go to any other museum, including children’s museums (of which there are several) in our city–all without regards to age. Mom gets upset with me for not seeing her side and misunderstands a metaphor I use to try to help her to understand. (I was trying to be light and funny, so I said something to the effect that we wouldn’t buy china at Home Depot, right? So why not just go to the places that are already set up for what we want or need?) HUGE mistake, on my part. And I’m never given another chance to explain, to clarify, to apologize, to be understood. Instead, I am blasted by several of Mom’s friends in the group, who have all decided that they’re going to bombard the museum’s FB page with complaints. In fact, they’re going to charge the museum with discrimination and seek state/federal action, if possible. Group members also state that they’re going to boycott the museum and encourage others to do the same.

Though my comments are clearly not welcome, I try to defend the museum and those of us who enjoy going there. I suggest we should be careful about stepping on others’ rights, too. I point out that I also have been “inconvenienced” by that particular museum’s rules, because I have a 4-year-old and a 14-year-old. If hubby wants to join us, we have to find another kid under age 12 to come along. But my point doesn’t matter.

The end result? The admin reads the rants (apologizes to me in a private message for the mishap, says she can see I was totally misunderstood, and invites me to stay in the group) and tells the rest of the group to simmer down. There’s more to the story, but I’ll stop here. I simply click “unfollow” and leave the group.

10 Tips to Avoid the Pitfalls

Long story short (too late), how can you avoid some of the pitfalls one might experience while participating in autism/disabilities FB groups?  I have a few ideas. See if you agree:

1. Realize that most women are venting and just want someone to agree with them. If you happen to not agree with a post, just don’t say anything. At the most, offer a heartfelt “I’m sorry.” But don’t say much more. Do NOT add, “I know how you feel.” Emotions run high with a venter, and your comments won’t be well received–however helpful you may intend them to be. Why do I specifically address women here? Because I see this problem repeatedly in my FB groups that are predominantly made up of women. I don’t see the issue in blogging FB groups, for instance, where there is a mix of genders. Also, special needs groups are full of moms who are overworked, stressed, tired, and at their wits’ end. From my observation, emotions run high in these groups and offenses are taken were none are intended. I’ve seen this with others’ innocent comments too, not just mine.
2. Venting women do NOT want solutions. Nope. They want to vent and vent and vent. Rule 2 is similar to Rule 1, but you have to understand this whole concept thoroughly. Even if you 100% agree with a vent, be super dang careful about offering any type of solution. Generally speaking, solutions are NOT wanted. Unless I can truly relate and empathize with a vent, I skim over such posts. Sorry to admit this, but I do. I’m a compassionate person, but I don’t know what to do with others’ vents. I immediately want to help by offering potential solutions. Not. A. Good. Idea. Potential solutions can be seen as “You think you know it all.”
3. If you need to vent, ask yourself if online is the best place to do it. We all need to vent at times. But consider venting to a real-life friend. Why? Read on.
4. Remember that the women in the group are strangers to you. They may seem familiar because you’ve read their posts often. However, they are, in fact, strangers. They do not know you. They do not know your child. They do not know your situation. They may give you good advice; they may give you bad advice. You don’t really know who they are. For instance, the admin for one of the autism groups I belong to (and it has several thousand members) posts to FB anonymously. Her name is a pen name; I figured this out when she asked for comments to a blog post she’d written, which was listed by a different author. I was confused by the two names, so I asked her. Soooooo if she’s anonymous, maybe she is a he (or both). Those of us in the group know nothing about her. Her profile is made up. She’s probably a nice person; after all, she’s the admin. But none of us know who she really is. Take note. Instead of seeking advice from strangers, network in person. Find support in family members or groups in your local areas. More on this later.
5. Be cautious about sharing details. I’m not talking about your phone number, SS number, etc. You all know that. I’m talking about details such as medicine prescriptions, your children’s bowel movements, details of their tantrums, how awful their behavior is. More about the first two in a moment. Keep your child’s lives private. They deserve that. I, personally, would be mortified if someone from my family posted about my bad days and all the dumb things I do. PLEASE don’t risk damaging your child’s self-image because you chose to air their struggles online. If your child needs ABA therapy, maybe ask the group for referrals. But that should be about it. FB groups are not private, even if they’re closed groups. Your comments can be copied, pasted, and shared elsewhere if someone really wants to do so.
6. Don’t seek medical advice from unqualified people. I’m always shocked by how many moms will ask and/or try to answer medical questions online. Occasionally, a commenter will state that they’re a nurse or have a medical background. But the vast majority of group participants are certainly not qualified to be sharing medical know-how. Ask your pediatrician instead. That’s what they’re there for. Don’t have a doctor? You can also ask pharmacists about OTC meds. Don’t take some stranger’s word that it’s ok to give your infant cough syrup. Yes, I’ve seen that question before and about 10 different responses to it. The same goes for psychological/medical questions. I often see people posting questions about prescriptions they’re taking and the dosages. Then they ask others what they’re taking and how much. That is such a bad idea! For. Obvious. Reasons. And I see it all the time, including advice on treating depression and other mental illnesses.
7. Remember that any group member can see your profile. Double check what’s there. Do you have family pictures posted? Do you want strangers to see your kids’ pictures? Maybe you do. Just make sure you’re ok with what information people can see and access.
8. Private groups aren’t more safe than public groups. I’m an admin for both types of groups. The difference in the private group is that I’m just checking for location because that group is region-specific. Otherwise, there are no background checks. No one is making sure that each member is trustworthy. In one autism group I still belong to, a group member was removed because she admitted she didn’t even have a child on the spectrum. Until that point, she’d been a regular commenter but was usually negative and off-topic. She’d been “approved” to join the group simply because she’d asked to join.
9. Treat FB groups as secondary information. Any advice you ask for and receive should be verified, either by a qualified individual or by a reputable online site. I do think that moms have lots of good advice and good intentions; they just might not remember all the details for something that you really need to know.
10. When asking questions, be specific. Instead of saying, “My son is one and isn’t crawling yet, what should I do?” talk to a professional first. Maybe you decide your son needs physical therapy. If you don’t yet have recommendations for a therapist in the area, you could post something like: “My one-year-old is in need of physical therapy. Can anyone here recommend a PT in Salt Lake City and tell why you like him/her?” Otherwise, you’ll get responses from “Oh, don’t worry about it; he’ll figure it out” to “You should panic and have him tested for . . .”

Facebook groups for autism do serve a purpose. As I’ve mentioned here, I’m in several, though my participation is less and less frequent as time goes on. I should probably also clarify that other FB groups on other topics may not have the issues I’ve seen in the autism groups. But for those which are autism-specific, there are issues. Why do we trust a stranger’s validation or opinion so much? Granted, I DO think other moms are some of the best confidants and resources. Getting to know them in person and learning about their children and situations in general helps both of you to know if you’re a match for helping one another. I’ve met wonderful moms while waiting for my son’s therapy appointments. I’ve found great moms through church, school, and community groups. Even if you don’t have family who understands your situation, you can find others who do.

In sharing my experiences here, I hope to bring awareness to the FB group trends that I find unhelpful and disturbing. People join them in hopes of finding answers and support for particular needs. In general, I find them to be online spaces for sharing sometimes negative and inaccurate information. As a parent of a child with special needs, neither I nor you need any more downers, especially when we’re all trying to find comfort, solutions, and understanding.

Do you participate in Facebook groups, specifically those related to autism? What has been your experience?