Researcher looking for advice from parents

Post Reply New Topic

Hi everyone, I'm a graduate student in clinical psychology at Stony Brook University. I'm doing a study on parents of children with autism and am looking for some feedback from parents, where would be good places to reach you? Which forums/ online social groups are you part of?

My questionnaire is at stonybrookautism dot net and if you have want to take it, or have any feedback on that or how its organized that would be welcome as well. What I'm doing is somewhat tough to recruit for, as I'm trying to get both moms and dads to give information about their parenting. Most studies only use moms, and I'm convinced that it's important to get info from dads as well...the problem is getting two people to take a survey is much harder than getting just one! I'm going to post a flyer here in a few days, once the forums determine that I'm not a spam-bot, but I thought I'd get a jump on things by asking for feedback. Any advice or help would be greatly appreciated. Thanks!

I wish you luck, but think it may be hard to get both parents. It's hard for some of us to do things as much together when a child struggles, and by definition, there is struggle dealing with the world going on for any child diagnosed with ASD.

The other thing is seems like there are those on Wrong Planet who are very open who they are, and those who value the anonymity and I see your study asks for names, emails, phone numbers. That scared me, though obviously no connection to Wrong Planet. And it's not like my child's name isn't already out there through her IEP. But the section saying information could be released by others (in the consent) obviously true, but scary.

I think it might work well if you could look, or better go to, an autism conference. I've never been to one, but people who have seem to like, and apparently they're full of parents, plus the people who go are obviously not going for anonymity. Online social groups are much more independent of the other parent than in person activities would be, too, and apparently many couples attend conferences together. Just a thought.

I agree with Waterfalls, you may have a hard time getting subjects when your consent says that people who are under no obligation to keep my information private may have access to my information.

If my kids' dad and I lived together, I'd help, though, because I remember how tough it was to get subjects for my grad/undergrad research. Best of luck to you!

yeah, the silly thing is, it's language that my school's IRB (institutional review board - in charge of study ethics) requires me to put in there, and it's not even really true. I'm the only one who sees the names / emails, and the main reason I'm getting them is so that I can contact the partners / enter people to win the prize. If / when the IRB checks in to make sure the study is being done ethically, all subject names are redacted...and there are no funders, so really there is no reason that anyone other than me would see any info about anyone in the study. Sadly, I have to leave that language in there. Thanks for the feedback though, I really do appreciate it.

edit - maybe I should make it more clear that this is the main reason the names are being collected, and that the actual questionnaire is not connected in any way to the contact info collected there.

You will still get interesting results, I imagine. But that language will, I suspect, be taken more literally by those of us who are more literal. Whether born that way, or through exposure to literal children. A seeming bias that is unfortunate for autism research against parents of higher functioning kids and parents with ASD choosing to participate. Still nice idea to look at both parents in the same family. And I understand not your choice, it's Stony Brooks language. My child is too old for the study. So I wouldn't anyway. And even though the language scared me, you may get some great information that not only gets you a PhD, helps our kids. And we all want that very much.

Thanks so much for your feedback and encouragement!

Good luck with your survey!

DH (dear husband) and I would take it if it were anonymous. I understand that your hands are tied on the confidentiality portion and I sympathize with that. I also understand that there is no intention to share the information. Still, due to my professional training in drafting and reviewing contracts, I take consent language very seriously.

Anonymity is important to us. This is our son's story to tell when and with the words he so chooses. We share it only as needed. I might feel differently if he were nonverbal or if his autism manifested differently.

You may want to ask an occupational therapy office to distribute flyers to their clients. Best of luck!

These are all very good points. In light of this, I made a change to the intro page, allowing parents to complete the questionnaire anonymously. I'll trust in people to try to get their partners to complete the questionnaire, without me emailing them. Thanks again!

I am impressed you did that, thank you. I hope it helps you get the numbers you need,

Thank you for all the feedback. I do clinical work with families of kids with ASDs, but still it's easy to forget how scary the idea of strangers knowing about your kids can be for parents, especially when the kids have ASDs and may not have the skills to protect themselves. Anonymity is a very real and important issue for many of you, and I would rather respect that than not. I'm glad that you all have reminded me of that.

Emile, if I may, another aspect that I think it would be helpful to keep in mind...my desire to keep things anonymous stems from something other than desire to protect my kids in the sense that I think most people view "protecting." My kids are both high functioning and can, at least on the surface, fly under the radar. I feel that this is their story to tell, or not to tell, so for me to "go on record" regarding their diagnoses, even though as a parent I have the "right," it feels like I am violating their future privacy if they should so choose to have it. It has been hard enough for me to disclose with the school districts, though necessary because they both need support, but to do so in a more "social" way, especially in a way that can be "pulled up" in the future, perhaps after they have decided to "stay private" just seems...wrong. For example, I once had the opportunity to get my daughter's artwork displayed with the work of other autists. But I couldn't do it. Even if I asked her if it was ok. Because she is too young to make that kind of decision, I think.

Anyway, I appreciate that you listened to feedback and changed what you could. I hope you have a lot of success in your study!

Absolutely - great point. I believe this is a forum largely populated by people on the higher functioning end of the spectrum, so I imagine there are a lot of parents in your shoes here. The stigma that goes with the diagnosis can really follow someone...even when they've done the work to overcome/manage their difficulties; just having that label can get in the way of jobs and relationships. It certainly is an unfair world that we live in, but it's great that these kids have such careful advocates for parents.

well we are neighbors! My kiddos were all born at SB hospital! My oldest had all his surgeries there too!

I will go look at your survey...

Thanks, neighbor!