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Autism Takes Heavy Toll On Dads

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More than 30 percent of fathers of grown children with autism experience symptoms of depression so severe that they warrant clinical attention, first-of-its-kind research indicates.

In a study presented Friday at the International Meeting for Autism Research in San Diego, researchers found that fathers of adolescents and young adults with autism experience high levels of depression and are pessimistic about what the future holds for their son or daughter, much more so than dads whose kids have other disabilities like Down syndrome and fragile X.

“Fathers of adolescents and young adults with autism are really faring the worst,” says Sigan Hartley, a University of Wisconsin-Madison researcher who led the study, which was recently accepted for publication in the journal Family Relations.

Hartley said her findings mirror what researchers already know about mothers of those with autism — that they experience higher stress than other moms and that stress remains even as their children age. But this is the first time anyone has looked at how dads cope as their children get older.

For the study, Hartley and her colleagues looked at self-reported data collected between 2000 and 2005 from fathers of 240 individuals with autism, Down syndrome and fragile X syndrome ranging in age from 10 to their early 20s.

After controlling for the child’s age, family income and the marital status of the father, the research team found that dads of those with Down syndrome fared best out of the three disability groups while those with a child who had fragile X syndrome fell in the middle.

Factors such as the child’s behavior, the likelihood of having more than one child with a disability, the father’s age and the mother’s well-being did seem to play a role in fathers’ experiences. But Hartley says more research needs to be done to better understand what’s leading to elevated levels of depression symptoms in dads of those with autism in particular.

“This is the first step to drawing attention to dads,” Hartley says. “We need to get away from just looking at moms.”

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Comments (11 Responses)

  1. musiclady1 says:

    This makes me feel better about requesting that my husband participate equally in doctors’ appointments and IEP meetings. My husband and I always attend appointments with new specialists. Then we split the appointments, since both of us work full- time

  2. john@disabilityscoop says:

    No doubt this is accurate. I’m sure I’m not the only dad with sleepless nights about how my kid will live after I’m gone, how his condition will affect his brother, and how I can afford to provide for him…nevermind how to achieve any dreams my wife and I used to enjoy for ourselves. I’d be interested to learn more about why there are differences between autism dads and dads of kids with other conditions. I wish all of you well.

  3. Moi says:

    I would like to know if the study missed a couple of things….. Over the last 18 years, I have known many dads who were generally in denial about the whole thing until now, when they are faced with the “last minute” – teenage years, adulthood. Unless the dad is the caretaker, the mom has been dealing with the reality all the kids’ lives, and there is no time to be in denial. By the time the kids are teenagers, they are “over it” and two steps ahead of dad.

    Here’s another thought: In my son’s social group, most of the parents who attend are dads. It’s fun time. At school, however, I have seen maybe one or two dads at meetings, concerts, etc. my kid’s whole life (he’s 18). That says something.

  4. deedeeo9 says:

    I’m a mom of a son with down syndrome w/ autism and I am always wondering about his dad. I do everything for our son and he just is there and says he has excepted his disability but, yet there isn’t any action proving he does. He says he doesn’t see him with a disability…I get what he is saying but our son has a disability and looks and does things differently. I want to understand how I can help him with his son..I just want to understand and don’t want our son to resent him for not being there.

  5. AutieMomVal says:

    My kids’ dad says he has depression. As well he should. Any man who just walks out on his family because “He’s not happy all the time.” should be tortured. I’m not happy all the time either, but I wouldn’t even consider walking away from my family. When he left he put every ounce of the stress of raising 2 children with autism on me. I don’t feel an ounce sorry for him.

  6. justanothermom says:

    It is interesting that the divorce rate of parents of disabled (last time I paid attention to it) was 80-90%…so it seems odd that the dads are now considered depressed. Personally I didn’t have time to be depressed, or I’ve adapted — my son’s father left when he was six months old and hasn’t dealt with him in 29 years. I did call him to ask he help get our son Medicare, so he could have better medical coverage (a hospital bed instead of a gurney in the hall). He was taking anti-depression medication then, so I guess he fits this model. The larger question is who is the primary caregiver, and how can we help them. If is the dad, or the mom, or both, help them. My only goal right now is to outlive my son. His father can keep taking anti depressants.

  7. DisabilityHelpSite.com says:

    Generally speaking, most men when presented with a challenging situation try to “fix it”. Understanding, patience, etc can be something that a lot of men fail to excel in (compared to women/mothers who are nurturers). The older the child becomes the challenges change and become more complex, which can/will make it more frustrating for a “fixer”.

  8. pressb10 says:

    My wife Gena and I ran a support group for a few hundred families of children with ASD. I can personally relate to this research based both on my personal experience and the experience with the scores of fathers that came to our support group. I am willing to share some of our experiences if anyone is interested.

    My wife has a PhD. in Autism and we wrote a book that I believe will be helpful to parents. I cannot of course mention the title in this comment.

  9. Sharanny says:

    Well certainly fathers who are involved in their child’s life will feel the angst just as the mother would. My husband is an amazing father and advocate for our son; he can’t stop researching, learning, teaching and hoping to find something to help him. Depression can take on many forms, so be aware if your spouse is showing signs of depression through new behaviors. I think part of my husband’s sadness is manifested through his advocacy. He fights for all children with autism and holds on to some of the pain for each child to his own detriment. It can really bring you down, but having someone to talk to and lean on certainly helps.

  10. operator says:

    My 12 son’s, with Autism, biological father is the wind, and no one is bothering to look. i adopted him 5 years ago. I live in a world where my son has liitle value when they compare him to other children, and my wife and i have to fight for everything. We dont always win. Depressed sometimes, sure. if I didnt aknowledge some anger i would be more. My son works hard and is not respected. Any father who deals with this type of stigma put on a kid they love is going to deal with depression and anger. It’s part of the way it is. As for the dad who left because he felt sad, even thought that is hard, maybe he did your children a favor. A non constuctive parent can do these kids a lot of harm. good look

  11. Monica says:

    Wow, crazy negativity! Where’s the love for our Dads? We all know autism affects the whole family. Men deal with things differently than women, and Dad’s may need help to deal effectively with their depression so they can be more involved with our autism kids. Who doesn’t need help to be a more effective parent? Women just attack it differently, so let’s help our Dads overcome their roadblocks so they can attack it. My ex has the kids 50% of the time, and fights for time with them, altho he is often baffled as the best way to get “through” to them and what to do with them. As parents we fight for people to take our kiddos seriously. I’m saddened that people would dismiss the dad’s real concerns, when we would be angry if someone tried to do the same to our kids!

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