Mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers and struggle with frequent fatigue and work interruptions, new research finds. These moms also spend significantly more time caregiving than moms of those without disabilities.
Researchers followed a group of moms of adolescents and adults with autism for eight days in a row. Moms were interviewed at the end of each day about their experiences and on four of the days researchers measured the moms’ hormone levels to assess their stress.
They found that a hormone associated with stress was extremely low, consistent with people experiencing chronic stress such as soldiers in combat, the researchers report in one of two studies published in the Journal of Autism and Developmental Disorders.
“This is the physiological residue of daily stress,” says Marsha Mailick Seltzer, a researcher at the University of Wisconsin-Madison who authored the studies. “The mothers of children with high levels of behavior problems have the most pronounced physiological profile of chronic stress, but the long-term effect on their physical health is not yet known.”
Such hormone levels have been associated with chronic health problems and can affect glucose regulation, immune functioning and mental activity, researchers say.
In a companion study, the researchers followed up with the same group of mothers daily to interview them about how they used their time, their level of fatigue, what leisure activities they participated in and whether or not stressful events occurred. This information was then compared with data from a national sample of mothers whose children do not have disabilities.
Mothers of those with autism reported spending at least two hours more each day caregiving than mothers of children without disabilities. On any given day these moms were also twice as likely to be tired and three times as likely to have experienced a stressful event.
What’s more, these moms were interrupted at work on one out of every four days compared to less than one in 10 days for other moms.
Despite all of this, mothers of an individual with autism were just as likely to have positive experiences each day, volunteer or support their peers as those whose children have no developmental disability, researchers found.
“On a day-to-day basis, the mothers in our study experience more stressful events and have less time for themselves compared to the average American mother,” says Leann Smith, a developmental psychologist at the University of Wisconsin-Madison who worked on the studies. “We need to find more ways to be supportive of these families.”
In particular, the researchers say that parents need better respite options and flexibility from their employers. Further, they say, programs to help manage behavior problems can go a long way toward improving the situation for mothers and their kids alike.
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What about dads? I guess we aren’t active caregivers so we don’t count. Give me a break. Hey researchers, WAKE UP!
What Marc said; why on earth didn’t the researchers look at dads, too? My husband is the stay-at-home parent, and many, many parents work as a team — especially parents of disabled kids!
That said, the results of this study didn’t surprise me. When are the parents of autistics going to get enough supports so that they aren’t so constantly stressed out?
I agree on both Autistic Mom’s and Dad’s have high level of stresses to deal with. Hsw about parent’s and caregiver’s of MR/Down’s/physically disabled/-syndrome after syndrome. We all have high level of stresses to deal with. We all need suppport not just in autism.
I have been a parent of a child with autism for 11 years and part of the disability community for nearly as long. For 10 of those years, I have been a divorced parent. This study is valid and important. No study has to be all encompassing to be valuable. No one is saying men don’t help parent their children, and don’t suffer stress as caregivers, but OVERWHELMINGLY when you look at the population as a whole, on my observation, it is the moms who are in therapy waiting rooms and doctor’s offices — and I have been in scores of them — at least 10:1 if not more. Overwhelmingly, it is mothers who are the primary caregivers; the ones who are called in to school to deal with illness or behavior issues. I don’t personally know one man who suspended or gave up his career to address their kid’s needs, but I know of PLENTY of moms who did, including me, a single mom, and I had shared custody.
I agree with the above poster that talked about looking at both moms and dads. It takes a good team to deal with what we have in our homes.
Also, why not look at those of us, including myself, who have two young adults living in our homes who have developmental disabilities? Sometimes, my son with Down syndrome is more stressful, especially because of all of his medical problems. Sometimes my son with Classic Autism is more stressful such as when his one to one aide is changed at school.
We deserve combat pay! At least soldiers get to go home once in a while, and they had a choice to join the military. We continue to live it for years upon years with no end in sight and we did not necessarily choose this lifestyle. We need more supports that are reliable. For example, I am tired of having respite scheduled and it gets cancelled at the last minute, a new respite worker shows up with no training, or nobody shows up at all. Then I have to deal with two young adults who don’t understand why nobody is coming. Now, that’s stressful!
This is a very important article. I don’t believe that men are “left out”. I think that the writer meant, “caregiver parent”, but due to the fact that most often it is the mother, the writer just used “mother”. Of course the article pertains to whomever the parent caregiver is.
Mary, Let me be your first husband who has “sacrificed” his career to be a full time team member with my wife in raising our son. Yes, I do go to school meetings, vocational planning meetings, doctor’s appointments and have stayed overnight in the hospital several times. I worry and plan for the future. My wife and I are in this together, I rely on her and she relies on me. There is no primary care giver in our team. We are just two loving parents who will sacrifice everything to provide for our child. Are we unusual? I certainly hope not.
Marc
(Very happyily married for 28 years)
I fully agree with the posters’ comments about dads being considered in a study such as this. However, I am assuming that a key part of this study was ommitted: that they researched *single parents* and thank God they did! Not to belittle the pain that couples go through, being a single parent of a special needs child is a totally different animal. There is no partner on which to rely on or trade out responsibilities. Here in Texas, there is a twelve year waiting list for *any* supported services, and that includes respite. There are relatively few support groups that meet the needs of single parents; for example, our one and only *local* AU support group meets at 7:30 p.m. My son *must* be heading towards bed at 7:30 – 8:00 p.m. Therefore, I cannot *tag team* to attend the support\informational meeting. My son was (wrongly) expelled from his last school multiple times this school year, and I was the sole person available to take time off of work to stay home with him. Whenever my son’s *father* is called to active duty in the reserves, we lose our child support for months thanks to a bureaucratic snafu. *I* absorb that hit, in addition to balancing the daily stresses of negotiating AU.
While I’m very glad that attention is being paid to the tolls placed upon parents of special needs kids (esp. AU), I *really* wish more attention and services would be directed to sole caregivers of AU\special needs kids.
As a father of a child with autism, I think this article is spot on. What I find most stressful (given that I work and my wife stays home as the caregiver) is that I have to learn to live with my wife’s emotional roller coaster ride resulting from her stress. It’s a different kind of stress for me and I often have to bottle it in as my major role is of support. I’ve long given up any social life and have inentionally shyed away from jobs that require travel or long/odd hours. I need to be home as much as possible.
Ok just reading all of the above quotes and I believe we are reading to much into this. I am a parent of a 13 year daughter with down syndrome and autism. All the challenges we face on a daily basis is hard work. I am fortunate to have a loving husband who is the step father of my daughters.He takes pride in learning and understanding the challenges that I faced before he entered our lives and I must say he does a damn good job on understanding and learning the day to day challenges. So this goes out to both mothers and fathers keep doing what you are doing and advocate for our children because if we don’t who will.
My husband of 33 years as stood by my side and I would like to thank him for loving our son who is now 29 as much as I do. We have done a good job and have a happy family. We have had our day to day challenges, but we have also been there for each other.
I am sure in fact that they only picked mothers, and not necessarily single mothers, because they needed enough of a sample size of one type of person. Wouldn’t work from a research standpoint to have six mothers and two fathers.
Fathers often don’t volunteer as much for these kind of studies. That said, they could try to find eight fathers with significant caregiver time of their child to compare it to the mothers.
My ex is a wonderful and totally involved father of our child with Autism, but I know many other divorced (and still married) fathers who are not. There are some mothers who are not involved too, but for the most part, my experience has been meeting women whose ex’s spend much less (or barely any, or none at all) time taking care of their child with Autism.
What is the hormone?? This is a good story, but not a surprise. I’m entering menopause early because of the stress and constant sleep deprivation. I am not complaining – but it has definitely impacted my body in a major way, and my doc is checking hormone levels (among other things). We’re looking into bio-identical hormone replacement (low level) supplements to help me feel better. There’s more information to be had…there may be options for moms, especially those in their 40s and older, to help them care for themselves a little better. AND – yes, autism dads rock! My husband is fiercely dedicated to our son and extremely involved 24/7.
Here’s an idea for follow-up piece:
Pentagon Investigates Autism-Dad Invisibility Phenomenon for Combat-Soldier Protection
The Pentagon reported today that the Disposable Dads Advanced Research Projects Agency (D-DARPA) has awarded a major new research contract to a subsidiary of the J. M cCarthy Innovative Science for the HOmeland Territory, also known by its acronym JMcCarthy IS HOT. JM IS HOT will be investigating potential new applications of the now well-established principle that hot moms with autistic kids are 300x more effective at overshadowing the tireless and thankless work of fathers in favor of the equally demanding work of mothers.
“We think this is an important phenomenon, because this ability to be continuously succeed at being totally dismissive of dad’s has been amazingly resilient even in the face of mountains of evidence that the stresses on dads is equally severe. These Autism Dads continue to be resilient in carrying out their duties as a parent, to a degree that requires an unusual level of tenacity given biological anthropological imperatives of the male to diversify their procreation base,” said the Pentagon spokesperson. “To us, it makes no sense– their contributions are largely ignored and unsupported, and yet they continue to perform, becoming even more invisible the harder they work. We think this could have some applications for protecting our combat soldiers in the field.”
I have read the comments with a bit of amusement… the reality is that when there is a two parent family, most of the caregiving falls to the mother, regardless of whether the children have a disability. It is rare to find a father who is cooking the meals, washing the clothes, packing the school lunches, doing the housework, etc. on a regular basis. I am 45 years old so perhaps the ‘younger generation’ is a bit more evenly distributed for household duties. The way it worked in our house was that my husband had a good paying job so he went off to work each day to make the money to pay for the therapy and other necessities of life. I stayed home and tended to the daily household tasks which included running ABA programs for our multiple children on the spectrum. His stress was different than mine but I am sure it was just as bad. We’ve talked a lot about what it was like in those dark days before recovery and he admits that he often stayed late at work to avoid coming home to the misery — including how I was feeling/acting at the time. I spent a lot of time feeling like I was a prisoner in my home. But, really, the bottom line is this: nobody forces you to become a parent; you volunteer for the job… and nobody promised you an easy time of it either. Yeah, it sucks to have a child that isn’t perfect and requires more work and sacrifice than the neighbour’s kid but you have to play the hand you are dealt… what determines your character is how you play that hand. We chose to be stoic to the outside world, rage at each other about life’s unfairness and show our children the strength and determination they needed to get through the tunnel. Courage is not the absence of fear but rather the ability to perform in spite of it. If more parents spent last time bemoaning their situations and more time figuring out how to have their best life I think we would all be a little happier.
Please do not forget that there are actually some single fathers of children with autism out there. One wonders why there is really no research on this subgroup. There’s some research on mothers and fathers that does separate the results of mothers and fathers. But we are left with only a few unscientific testimonials about being a single father.
As someone who raised a son with autism as a single father for four years (I’m now married but I am still a primary caregiver), I know that it is very difficult. Single mothers have others to go to for support, but single fathers have no one. We are not accepted in any primarily mothers’ groups, and married dads, if they ever get together, really do not experience the same path. I can tell you that I had the physical symptom of a hammer hitting me over the head every morning. Yet, it actually went away when my present wife moved in.
If anyone is interested in what the research is out there about fathers of ASD, in general, I did an exhaustive literature review as part of my comprehensive exams for my doctorate. I’d be happy to pass it along.
Wow my reaction to this article is shocking to me I had no idea of the stress levels these women with autism children and I’m glad that they have services available to help the parent and child manage some problems.
Depending on the timeframe in terms of the age of the child I could say that any of us having children with disabilities fall in the same category as the mothers in this research. It isn’t always about autism!!!!
It may not be that researchers are ignoring fathers. You can’t compare hormones because obviously men and women have different ones at different levels. It’s apples and oranges.