How Do You Know Who to Listen to?

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Hello Everyone,
I wanted to see what other parents do when choosing who to listen to online. There are so many organizations, blogs, websites etc out there and a lot of media attention (not all of it is always correct)

I have a couple of blogs I follow and of course I stop her fairly regularly for advice, but I wonder how other parents find resources.

Thanks for your input.

I wonder the same too. I know sometimes you can get bad advice or advice that may be bordering on abuse or that is child abuse. Someone once told me on Facebook to get some rope when I said on there I can't keep my son in his bed and I knew that advice was bad. But he said he was just joking. But what if someone did follow that advice not realizing the person was kidding because they were really that stupid?

Plus each kid is different so you know your child better than others so you know what may not work with your kid. Plus trial and error I call it. You try something and if it doesn't work, don't follow that advice again. But sometimes it takes more than a few times for it to work and my mom told me you try it for a month and if nothing has improved, you can stop doing it. I suspect parents try something but they don't do it long enough so they quit and do another thing and it's inconsistent to a child.

Note: I am talking about parenting normal kids. Since this is an autism forum, I realize you may be talking about parenting autistic children.

I think you are correct in that we get information mostly from other parents, friends and family. I know a lot of parents go to Autism Speaks when they first get a diagnosis because it is probably the most famous - but what about all of the other autism organizations?

I'm a voracious reader. I checked out every book I could find on the library (first on Aspergers, later on dyslexia) and anything remotely related. After awhile you begin to get a sense of what is mainstream advice and what is really out there. Also, you can see what books get mentioned over and over and get a sense of who the experts are. Finally, I may try some of the smaller suggestions, and if they work, that source goes up in credibility in my mind.

This was the first place I tried, and I basically started by checking out resources suggested by people with similar issues with kids with a similar temperament. I did enough of my own trial and error with the standardsuggested strategies that I had an idea of what was working and what was not. I am cautious with Google and assume that anything that sounds too out there is probably a scam or dangerous.

Edited for the usual illiteracies

Last edited by ASDMommyASDKid on 08 Oct 2014, 12:21 pm, edited 1 time in total.

I think reading up on your own is important before you take advice from the internet about anything. If you start out relatively well educated on the subject it is less likely that you will be guided by someone else's really bad ideas. Also before I take any advice, esp about my son, I do a real gut check. Does this feel right, does it feel like good parenting, is it dangerous or counter productive to anything else in his life that is working. If I still am a go and it is easy choice(duh why didn't I do this earlier) I just implement it and see. If it is more complex, I do further research.

Another issue, I never take advice being sold, hocked or proselytized without major skepticism. Most parents are saying this is what worked for me, maybe it would work for you, but if they are trying to force it down everyone's throat the less likely I am going to listen. Nothing I have seen yet works for everyone and it seems like a lot of people are trying to make money off these kids. Even well intended people who see it as miracle for their kid and are just excited to share are wrong to assume it is right for everyone.

More to the post. This is the only discussion group I go participate with but I go to different sites for research. Most are associated with major universities or dept of health. The MIND Institute, the Internet Modules from Ohio and the National Autism Center.

I've relied on my instinct. If it makes sense with my instincts, and I feel good about enacting it, then that is the advice I follow. I feel like somehow you know when you've gotten the right advice. When you continue to feel discomfort with all the suggestions, or on the flip side they all feel equally logical to you, maybe it is as simple as that you haven't found the right answer for your unique family yet.

I've definitely lived in forums like this one, because I found it so useful to hear people articulate what was going through my son's head before he was able to articulate it himself. Some ideas were so simple, like using straws for the chewing problem; who else would have thought of that? I had to hear it from someone who loved to chew, as to what gave appropriate satisfaction - and why they did it. You do have to sort through a lot of different opinions, many of which don't sound at all like your child, but somehow I kind of knew when I'd found the right one. It would just strike a chord, and suddenly I'd find myself smiling.

I believe in taking it all in, but using your instinct as a filter. Every child is different and every family is different. One person's magic may not work for you at all.

I've also, by the way, found enormous success from "it can't hurt" suggestions. Some things are easy to experiment with; they don't require anything that feels to me like a potentially devastating commitment (I consider medical interventions to be huge and risky commitment; letting my son "pace" around a fully ASD-proofed house? Not so much). I've always leaned towards those, and they've WORKED. So that type of advice is a great place to start, and then see how far you can get.

Anyone trying to sell you something can, of course, not be trusted.

Autism Speaks tends to treat ASD like a terminal illness (lots of talk about despair and grief), and frequently ignores the high-functioning as well. That makes me mistrustful of all their advice, even though some of it is probably helpful.

The "puke test."

If believing what they say literally makes me want to puke, I don't listen.

If implementing what they suggest literally makes me want to puke, I don't listen.

If I think the reaction at home is going to make someone want to puke, I don't listen.

If I bring it up and the fight with my husband makes me want to puke, I don't listen.

It's the "gut instinct." "I want to puke" is just how my gut talks to me.

If the idea of doing that to myself, my spouse, or my child makes me angry, I'm trying to get up the balls to not listen. If I think it would make me angry to be treated in that way, I'm trying to get up the balls to not listen. If I read it or hear it and go, "Man, that ain't right," I don't listen.

This is awesome!

I was directed there when he was first diagnosed and it really upset me because of that exact reason. Then it kinda pissed me off. I just stay away from them now. For me they are the Fox News of Autism. That is not a disparagement to any conservative folks out there, I personally am just very liberal so ultra conservatives and their news is upsetting to me. I am sure that conservatives feel the same about more liberal news channels. Just an analogy I use, not a war on anyone's news outlet.

Thanks everyone for your help - I am trying to figure out how to make my website better so I thought it would help to know what parents are looking for. I know Autism Speaks is the gorrilla in the market, but there are so many other great resources that are overlooked - I want to help families find the right resources for their family situation.

Thanks again for the insight.

If you are trying to build a useful website, I can tell you what I have never found out there: a comprehensive website that accurately portrays contradicting points of view in an unbiased way, educating the reader and then letting them decide what they think is best. Kind of like Chelation: here's what the research supporting it says, here's what the research debunking it says, here's what the people who support it say, and here's what the people who oppose it say. All equally weighted and unbiased. I think that people cannot have an educated opinion unless they can reasonably argue the counterpoints. Then you know they understand the issues and have drawn a conclusion that is based on more than how persuasive someone else is.

What I found in the beginning was that finding all-inclusive, well-balanced information was like going on a scavenger hunt. You find really good stuff on site A, but it completely neglects topic 1. On site B, the information about topic 2, is sketchy, but the stuff about topic 3 is pretty good. Site C sounds awesome and has lots of persuasively written personal testimony, but there is no credible evidence out there to support any of it, and they don't tell you that. Site D has information that is contrary to mainstream opinion, so you don't even read it, even though it has good information on it that you missed because you have never really critically evaluated mainstream opinion. And you never even come across site E, because you don't even know to look for it, but it actually has some information you need.

I'm lucky I like to research, otherwise I am certain it would have been very overwhelming and I probably would have just listened to the first person who seemed to know what they were talking about. The problem with that is a lot of people can seem to know what they are talking about and wholeheartedly believe what they are saying, but unless you know the "other side," you have no way of evaluating their statements. Some of the stuff out there is potentially dangerous, and some of it does not apply to all autistics. But it seems to me that people (both IRL and on the web) mostly only want to tout their own perspective, without acknowledging any potential dangers, or the fact that their perspective will not apply to all.

I agree. It feels like there are opposite camps that rarely shall meet.

Although I think chelation is too dangerous to give equal time to.

Last edited by DW_a_mom on 11 Oct 2014, 5:02 pm, edited 1 time in total.

But, see, that is your opinion. I think people should review both the supporting/debunking evidence, and the pros/cons and decide for themselves. As soon as someone starts determining what is appropriate to give time to and what is not, then you lose the whole "unbiased" part of it. It becomes filtered.

FWIW, I am not in support of chelation (except of course in autistic and non-autistic people who have documented heavy metals in their system--by regularly accepted lab procedures according to industry standards--then chelation is the appropriate medical treatment). But if I were to create the mega-site of autism-related information, I would have to put my own opinion to the side and present the information on both sides for the reader to evaluate. Otherwise, my mega-site of autism-related information would be simply another biased site that parents can visit. There are enough of those already.

I think that is why a site like this doesn't exist. No one wants to give time to things they don't advocate. It's a hard thing to locate and give space to information that contradicts your own opinion. Generally speaking, once you have drawn your own conclusion, it means you have discredited the contradicting information. Placing the contradicting point on equal footing with your own is cognitively uncomfortable to most, I imagine.

IMHO.

I wouldn't have trouble including things I don't advocate IF they are accessed through sections that FIRST indicate how controversial they are, and what the leading thinking is.

Something like, "a small percentage of the community firmly believes that ASD is caused by and, thus, advocates Chelation as a treatment. The majority feels this cause has been disproven and considers the treatment to not only be worthless, but also highly dangerous. Information from both sides can be found HERE."

I just think it is important to show that not all options have equal weight. It is, of course, difficult to judge where the weight lies, but terms like "small percentage," "minority," etc can be used to give a general indication of where scientific thought currently is.

When it comes to "it can't hurt ideas," that can be said, to. I have no issue with the most fringe of the fringe ideas when they can't hurt anything.