New Research Study About Parents of Children with Autism!

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I think it has to do with like attracting like and with social groups of choice. I know almost no parents of the "curbie" type anymore. Mostly because I do not "go where they go" online or IRL. My early exposure to other autism parents originated online in a forum frequented mostly by women, so my starting point was pointed in a skewed direction. I was pointed to other women, introduced to other women, etc.

Cyberdad, I must be honest and say that I chuckled that you chalked your level of involvement at least partially up to working part-time. For women who's partners "leave it all up to them" it doesn't seem to matter if the woman already works full-time or not. It is just her responsibility. I work full-time. I still handle all things autism and most things child. Though I get the impression that it is often the case for working moms with NT kids, too. That, I think is an American cultural thing.

Interestingly, my kids' dad is an immigrant (in childhood) from a paternalistic culture. Although I would not be able to call him low socio-economic. We are middle class, professionals. I am not familiar with the term "low socio-demographic," though if it refers to ethnicity, it seems to be a bit...mean? How is one "higher" or "lower" than another?

Is it possible these days for both parents to work fulltime and raise kids? maybe the cost of living downunder precludes that....on the other hand if you have family helping out (grandparents etc) then that gives you the luxury of freeing up time...



I did not mean ethnicity, I mean't that LSE (i.e. unskilled or manual labourers) there is a culture of "machismo" where gender roles are more defined.

I've worked with several families where both parents work full-time. It helps if one parent has a job with flexible or odd hours, like being a nurse. I don't envy those parents though.

Now I am just spouting my own personal opinion, but no it is not possible for both parents to work full time and raise kids they way they would be raised if one parent could stay home. However, for many families, mine included, both parents work full-time out of necessity. We don't live downunder. Right here in the good ol' USA (very expensive part, I will admit). It has gotten "easier" now that kids are both in school and my older is old enough to babysit a couple of hours before I get home from work, but when the kids were younger it was ridiculously stressful. And to say it is "easier" is not to say it is of better quality for the kids. Even today, by the time I get home from work, I have time to make the kids dinner, clean the kitchen up, check their homework (though sometimes I don't do that), and then they get ready for bed. In the morning I get them up and make them breakfast. Get them to the bus. Commute to work. Work. Commute home. Get dinner ready, etc. I am sure you can see how that routine does not leave a lot of time for a parent to be doing things they would be doing if they were home. My son, for example, needs a lot more guidance and help with organization. If I were home, things would be much different for him. I would have time to do things to help. But if I were home, we would not be able to afford to live in the school district we live in, and then he wouldn't be getting the help at school that he gets. What would help in a situation like this is some kind of subsidy to allow parents of high-needs kids to work part-time and be home more without squashing their income. I am generally not fond of government-sponsored programs such as this, but for me personally, it would allow my kids to get further ahead because I would use that time to work with them therapeutically, though I do recognize there are parents out there who would just pocket the cash and relax.



I see. Machismo exists well outside of unskilled and manual laborers. But yes, I am sure that those who ascribe to a "machismo" type philosophy are probably less inclined to tend to childrearing tasks. And leave the mother to do the bulk of it.

interesting idea. It's odd that we have relatively large amounts of money going towards having professionals and semi-professionals to work one-on-one and full-time with some of these kids, but those funds aren't easily redirected to the home for parents to use in such a fashion. You are right about the possibility of corruption, but that's what oversight is for...

Last edited by EmileMulder on 12 Jan 2014, 6:27 pm, edited 1 time in total.

I don't know that all parents are capable, and how would you ensure that? I have a master's degree in psychology and worked in psych professionally for many years so I have a skill set that some parents may not have. Not that you need a master's degree to do it, but it certainly helped me to grasp a lot of the therapeutic interventions quickly.

I would say that the vast number of parents of kids on the spectrum that I know would definitely be able to take appropriate advantage of a program like that to the benefit of their kids. Very motivated, dedicated people who would take the time to learn. But then we get back to the whole "birds of a feather" thing because I am sure that there are many parents of kids with autism who would use it to benefit themselves, not their kids. I probably don't know these people because I do not travel in circles where that would be acceptable.

But, my goodness, if I could work part-time while the kids were in school and then be home when they are home...there are so many things I would do differently. But between my job and my commute, I am gone 10-12 hours a day during the week. It doesn't leave time for those things.

At my nonprofit, the consensus was that parents working with their children at home is key. A few motivated parents would pick up educational materials from us and work with their children using them, while also bringing their children in regularly for lessons with teachers.

Another interesting issue in general is effect of autistic traits of parents (bap) on autistic children. I am sure that I had an advantage growing up with bap parents instead of nt parents. A lot of things that fit me and worked for me came to my parents as the natural obvious way to do things, and I am seeing that with some of my autistic research participants who have autistic children.

I have often felt that being BAP or a shadow has helped in raising my kids. Concepts like the true purpose of stimming are not very hard for me to understand. When a lot of my parent-peers (of newly diagnosed children) were talking about their kids "engaging in non-purposeful behavior," I was like "What do you mean non-purposeful? Of course it serves a purpose! What are you talking about, non-purposeful?" I also feel like I can "bridge" a lot of things. I totally see where my son's social perceptions are off, and I understand enough about the NT world to be able to explain it to him. And the fact that I categorize and break things down naturally has made it easier for me to figure out how to teach social skills. I think it also helps that I am comfortable in my own "weirdness" because I have been able to be a positive role model for my kids in that regard.

You are very fortunate then. For us we have no choice at the moment.



I t exists everywhere but is more "clearly defined" in lower socioeconomic background folk...

You are very fortunate then. For us we have no choice at the moment.

Yes, I am. This is the first year he has been able to help with babysitting (he's 12 and she's . Though, truly, it isn't much like "babysitting." They are both very rule bound and so they know the rules and they follow them whether or not I am there. And it's for just a couple of hours. Before that, it was a variety of after school programs, babysitters, nannies, being called away from work, missing work for appointments, etc. I think many employers would have fired me due to the disruption to my work schedule. At one point in a 6 week period I had missed 10 days of work due to various issues with the kids. The only thing that saved me is that my boss "gets it." She has no disabled kids of her own, but I have known her for a long time and she trusts my dedication and knows that if I say I need to leave, it is because there is no other way around it.

Just curious, since both of your kids can be babysat by their siblings ....do you think your experiences were more difficult than parents of NT kids? Or about the same? Not to say that it's easy for anyone, I'm just wondering.

Again you are very fortunate. Most of the employers I've had have been heartless bastards...I've just started a new job and my new employer (a mum with kids) sounds more understanding.

I'm not sure I understand the question? My 12 year old son (ADHD/NVLD) babysits my 8 year old daughter (mild ASD). This was the first year that he has been able to do that. It has made it easier financially for sure.

I cannot really compare my experience to parents of NT kids, since I have never had any. Parents of NT kids tell me that it seems my experience is more difficult than theirs, and in some regards I agree. But in other regards, I think people just adapt to their circumstances. I have no frame of reference for raising NT kids. Atypical kids are all I know. It's kind of like my friend who only has twins. She does not view it as particularly hard because she has never had to care for less than 2 kids at a time. I can't imagine caring for 2 newborns at once.

The one thing I can say without hesitation, though, is that the time spent at appointments, conferencing with teachers, getting called away from work, etc, is significantly higher than for NT parents. And simple things like birthday parties take days' worth of preparation, whereas my impression is that parents of NT kids simply bring their kid to the party...without concocting various scenarios and walkign through how to handle them, walking through step-by-step what to expect, and having the acid in your stomach burn a whole in the pit of it because you know that your child will want you to leave the party like all of the other kids' parents, which then means your vulnerable kid will be left in an unfamiliar environment with people they don't know, and in which any number of unexpected things could occur. Unexpected, for my daughter, equals disaster. And most people don't even catch on that she is autistic until something unexpected happens, and then they become entirely confused, and sometimes even scared or disgusted, because what they see does not match with the impression they have. I don't think NT parents of kids understand this piece at all, and I think this piece is something that is universally harder, no matter how "easy" the autistic child is, nor how "difficult" the NT child is.

Yes. I am fortunate.

And it's the reason I am staying at a job that I really don't like. I can't run the risk of going somewhere else and having a normal boss who expects normal things, like that I can always be at work when I am supposed to be and that I won't have to unexpectedly leave during the middle of the day because something happened, or that I won't need to leave early all the time to meet with teachers. Or come in exhausted because I was up all night.