New Research Study About Parents of Children with Autism!

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What roles do mothers and fathers play in child social development?

Do You:
Live with a son or daughter (age 3-12) with an autism spectrum disorder
Live with a co-parent (your child’s mother or father, or a partner who acts as a parent to your child)

If So:
We would like you and your partner to each fill out a brief set of questions regarding your parenting and your child’s social development.

After completing the questionnaire, you will be entered into a drawing with 300 families to win a free iPad.

If You Would Like To Participate, Please Visit:
http://www.stonybrookautism.net

IRB Approved: 11/04/2013
Expiration Date: 11/03/2014
CORIHS, Stony Brook University

As I mentioned last week, here's the study announcement. Thanks to all the parents who gave me feedback. As a result, it is now possible to take the study anonymously.

This research is one of few studies that seeks responses from mothers and fathers. Most research on parenting deals exclusively with mothers (or mothers' reports of fathers). Unfortunately, getting two parents to take 30 minutes to fill out a questionnaire is asking a lot, which is why I decided to give an iPad to one family that participates. So super-dads, please take some time to make your voices heard! Thanks!

Instead of asking people whose children aren't done growing up yet, whose answers might be incomplete - here's a thought - maybe you'd get more useful data by polling people who WERE autistic children, who grew up experiencing the disorder and the social problems from the inside and who are now mature enough to relate their experiences in an articulate and coherent manner?

I'll bet some of them have parents who are still alive who can relate what kinds of methods they used to insure that an autistic child grew up to be a self-sustaining individual, capable of functioning socially in society.

If that's not too pragmatic for Scientific Research.

I certainly agree that's a useful line of research. Of course it's too late in this project to switch gears that drastically. And just because one research question is important, it doesn't mean that others are not. I think you are right in pointing out that there should be more studies considering the perspectives of individuals with ASDs. I also think that the voices of people with ASDs are often overlooked in other spheres, such as political and advocacy work, even when such work is intended to help people with ASDs. I imagine that may be very frustrating for you.

That being said, there are a few reasons I chose to go with parents as my respondents here. Mainly, I'm interested in parental involvement, and what sort of role it may play in promoting child social development. This interest is based on my own experience working with diverse families of children with ASDs, and observations I've made along the way. For that specific question, I wanted parents to report on their recent involvement, so I wouldn't have to worry about the way that time can distort memory, and I could get a (reasonably) accurate view of the parents' involvement. I suppose I could retrospectively ask people with ASDs how involved their parents were with them when they were children, but there are issues with accuracy when asked to describe the distant past. With regards to social development, I am interested in parent responses, since they can be keenly aware of the skills that their children exhibit in the moment, and which skills are still missing. It is much more difficult to ask a person for an accurate assessment of which skills they themselves possess; especially because some of those limited skills may interfere with their ability to understand and respond to the question.

So then why care about social skills? Well, I see this as a particularly important outcome for people with ASDs. Social and communicative skills can make the difference between a person being confined to an institution for the rest of their lives, and leading an independent and fulfilling life. I imagine research that helps to identify factors that encourage social growth is beneficial to parents of children with ASDs, as well as anyone with an ASD, because the end result is a better understanding of social growth.

One of the challenges from a research perspective with getting self-report data like what you're suggesting is restricted range. That is, many adults with ASDs, like yourself can articulate clearly what they have gone through, and can contribute useful insights. On the other hand, many people with ASDs remain non-verbal, or limited in their verbal ability through adulthood. These people would have to be left out of such a study. And that is fine, but such a study would then only describe people with high functioning autism and Asperger's disorder. This is certainly useful for questions pertaining to that specific group, which is a worthy pursuit, but I'm interested in both groups.

So then, let's imagine that one of our major goals as researchers is to figure out what factors make people with ASDs turn out like you, Willard; articulate, highly functioning members of society. For that sort of research, we would have to look at the broader range. We would need both positive and negative examples. People who developed strong verbal skills despite their initial deficits, and those who didn't. And we would need a standard source of information across those groups, which would be the parents (as the people who didn't develop strong verbal skills may not be able to complete a questionnaire).

So you see, for very well meaning and logical reasons, I've wound up researching parenting from the parents' perspective. That does not mean that it is the only valid perspective. And you are right to point out that other perspectives deserve to be heard as well. I hope you understand that I don't focus on parents out of a sense of arrogant paternalism, or dismissiveness, but rather well-reasoned and well-meaning reasons.

You might want to fix the typo in question 28 part 43: "siple directions"

Some of the questions seemed to be about capability but were worded as reporting:
"Does your child do behavior x" when these are behaviors long ago grown out of. You might want to improve the meaningfulness of responses by rewording those questions "Does (or did if this behavior is no longer age appropriate) you child do X?"

Please do let us know if you get meaningful results!

I would like to help you complete this for your MA...but I found a serious confound in your project
In your goals you've stated in your assumptions that ***certain parenting choices may be related to child social skills outcomes. ***

Autistic children develop in different trajectories and empirical evidence suggest the outcomes are not necessarily linked to parenting choices but rather the individual child's capacity to learn/socialise. I would be more interested in participating in this study if you focussed on specific set of traits/situational factors i.e. did you child receive a diagnosis of autism and was i) non-verbal as a child and ii) received ABA iii) attended mainstream school? The outcomes here would be more focussed. Currently you will get kids with strong communications skills, some with weak communication but with other strengths, some with cognitive/motor problems etc - your data is going to have a lot of background noise despite having some interesting potential.

thanks for the feedback adamantium...I'll fix the typo. The wording thing is a bit trickier, since I'm using a standardized questionnaire for that, so changing the wording invalidates it. If I were administering the questionnaire in person, I'd skip those questions and go right to the age appropriate ones, but that approach was a bit too complicated to program in, or ask parents to figure out. I can put a disclaimer at the top to point that out though.

cyberdad:
Thanks for the feeback. Indeed, it is a large limitation to the study, which will be discussed in the paper. If I wanted to answer my question perfectly, then I would have to do a full clinical assessment of the children with asds at a young age and then follow up with them later, while measuring various factors including parental involvement. The study would still be correlational, but it would go farther toward suggesting causation. You are also right that many factors contribute toward developmental trajectories, many of them more powerful than the skill / involvement of the parents. I'll go one step further and suggest that even if I find correlations, it could be interpreted many ways...for example, parental involvement could cause improvements in social development, alternatively, kids who are more socially developed could cause their parents to become more involved (because they encourage it). So why bother with an imperfect study? Well it's a preliminary step toward suggesting that these may be important variables, so that somewhere down the road, someone doing that amazing longitudinal study might include these variables as well. I'm laying some groundwork towards studies that can argue that both mothers and fathers play important roles in promoting child development. This may not seem like a big deal, but right now the predominant message that I see is that mothers matter...and fathers are sort of excluded from that.

You are talking about a longitudinal study which would at least be quasi-experimental. Actually I would go for a smaller sample size and base your survey on specific retrospective actions of parents. For instance a significant proportion of parents who choose to provide ABA therapy versus no therapy would be a very useful study in itself for a Masters thesis to look at the social outcomes for these children based on parents decisions retrospectively.


That's only a perception, all of the families of autistic kids (i.e. kids diagnosed with autism) I know of have fathers who are heavily involved in decisions for their children's therapy/education.

If you're looking for ideas for a research topic, I think someone should come up with a test similar to the M-CHAT, but for kids age 3-6. There are so many kids out there struggling at this age whose symptoms aren't picked up by the usual lists about lining up toys, etc. When I was looking for answers at that age, no one was asking me if my son could sustain a conversation, could draw a dog, made up pretend stories, or could join in with other kids at the park, Because he didn't line up toys, flap his hands, or have an obvious special interest, there was no info out there to point me toward ASD. An M-CHAT type test for preschoolers would've been a big help.

I've seen both heavily involved dads and workaholic/never home dads, and plenty in-between. The problem that I was pointing out is that in my reviews of the research literature on parenting kids with autism, I found very few studies that actually featured responses from fathers. There are a fair amount of studies that look at mothers, and sometimes they ask mothers to report about the fathers, but it's actually rare to find a study where fathers get to speak for themselves. As a result, the research findings wind up being intrinsically mother-biased. And so, many studies seem to suggest that fathers don't really matter, when the real issue (as I see it) is that fathers aren't really being included in the research.

I agree with you that knowledge of ABA is probably a more powerful predictor of child social growth, and I considered variables like that at first. There already is plenty of research supporting the efficacy of ABA, though, and parent training with ABA is already a well-accepted form of treatment. For the purposes of this study, I'm more interested in family structure and organization, so the level of involvement was the variable I chose.

Yes, that's certainly a useful line of research, and thanks for the suggestion. I believe there are screeners for kids in that age-range already (http://www.firstsigns.org/screening/tools/rec.htm). The main goal of screeners should be to cast a wide net, so that they err on the side of over-diagnosing rather than under-diagnosing. Then those caught with the screeners can take a more involved test like the ADOS, which does assess for the things you listed. It's certainly an important line of research, but not the direction I'm going...Personally, I'm more interested in treatment / consultation with families than with assessment, although both are important.

Fair enough, I think you will get some interesting results regardless. I'll also fill in your survey.

One more confound you'll find is family structure where socialisation maybe increased depending on a) number of siblings b) connectedness and closeness of extended family and c) number of friends....

Well...you sort of know me, and my kids' dad has been basically absent from decisions related to therapy and education (especially as related to ASDs), although still involved in their lives. My experience differs from yours...in most of the families I know, the mother bears the significant burden for "all things autism." Please nobody think I am saying that having an autistic kid is a burden. I do not feel that way at all. But some of the stuff that goes along with it (arranging therapy, extra meetings at schools, doctors appointments, etc) is burdensome. It is extra stuff that you have to fit into your life that many parents never even have to think about.

Over the years I have had people "praise" me for how well my daughter is doing. Adults on the spectrum...family...friends. But the truth of the matter is that I think I probably have had a minimal (likely) to moderate role (at the very best) in her "success." It would be really gratifying to say that the therapy that I carefully chose for her did it. Or my involvement with her. Or my parenting style. But I think it is mostly her. Her effort partly, but her neurology mostly. Yes, she has inborn deficits. And those inborn deficits are outwardly labeled as "ASD." But for whatever reason, her wiring left her particularly able to adapt. Do I think she would be doing as well as she is if she would have never received early intervention or if I never invested my time in her? No. But I still think she'd be doing better than your "average" autie. That isn't meant in a boastful way. We can take no more pride in this than we can in her beautiful curly hair. It's part of her makeup.

But as far as parents' roles are concerned...I'll tell you one thing I would be really interested in finding out about: how parents' views of autism and their autistic child influence the overall well-being of their child in the long run. If Curbie vs. Neurodiversity are two ends of a spectrum, I would say that I fall on the neurodiverse end. My own personal belief is that my philosophical stand regarding autism has left my children rather strong in terms of ego and rather comfortable in their own skin. Both of them recognize that society's view of their pattern of strengths and weaknesses do not necessarily reflect their value and worth. They have grown up their whole lives being told that there is nothing "wrong" with them, that it is OK to be "weird" and that the very parts of their neurology that make some things very hard for them are also the very parts that give them incredible gifts. Their gifts make them who they are. Their gifts are what I see and what I prize. The deficits are just those things that we have to find workarounds for. Not big deals. Truth is, everyone has deficits. My kids' are just more visible to others. My son is only now reaching puberty and I am hoping the ground work that I have laid will help keep him afloat over the next few years in terms of his sense of self and self-esteem. I don't really know how a die-hard curbie could possibly be innoculating their children with the same message. When you view your child's neurology as an aberration that needs to be remedied, I don't know how you can be saying that there is nothing wrong, that it is OK to be weird, and what other people think doesn't matter, because you are fine the way you are. How do these kids fare...the ones who have been told that the are sick, ill, diseased, "stolen in the night," etc...do they have a harder time living in their own skin? Or is that just something I believe? Perhaps the "other" kids are strengthened by their parents' "dedication" to the "fight"? Maybe they feel worthy or honored? I think lots of people have opinions about this, but I don't know if I have ever come across data that actually looks at what happens. Forums like this would suggest that I am right, but forums like this are also probably more likely to draw people who are having difficulty. Perhaps the people who were strengthened by their parents' "dedication" to the "fight" are doing so well that they have no need to seek support on internet forums. I do not know the answer to that.

...not that you can take this on at this moment, of course. Or perhaps even find it interesting.

At any rate...good luck!

I should clarify that nearly all of the father's I've spoken to are in my boat working part-time and looking after their children. This largely lends itself toward us dads taking on a more proactive role in our kids therapies etc...

I agree with you fathers may have less of a role where
i) they work fulltime and are the breadwinner or
ii) they come from low socio-demographic backgrounds where gender roles are more prescribed
iii) they have specific personality types that are self-absorbed

I'm liking this discussion, though if I gave all of my opinions, I'd be coming a bit too close to giving away my hypothesis (which could create another confound in the study, if you guys haven't taken it already). Please make sure to take the study, and tell your friends, and once I'm done with data collection, I'd be happy to share my own hypotheses and results on here.

It's interesting that Inthistogether, the "expert-mom" knows mostly families with "expert-mom's" and distant dads, and cyberdad the "expert-dad" knows plenty of "expert-dads". I'm wondering if that has something to do with geography, or just social groups of choice. As I said before, I've worked with families on both extremes, so I know there's a full range out there.

There are all sorts of potential reasons that some dads (or parents) may withdraw from an active role and cyber-dad listed a few. Another one that cyber-dad didn't mention that is mentioned in some of the fathering literature is this complicated grief reaction to the autism that some dads can have. They wanted a boy to play baseball with, and the diagnosis hits them really hard, and so they retreat from the family (maybe becoming workaholics). Another potential reason I've read about is the over-controlling mom, where mom wants things just-so, and so she basically pushes dad out of the picture (because he can't do anything right). Of course, all these dynamics are very complicated, and the factors that go into something like that are probably numerous and layered, but those are some cartoon sketches of what can happen. Also, there are certainly cases where the roles are reversed, and mothers take on a support role in parenting.

Make sure that you also poll the parents of nonautistic children so that you have a control.