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.
That is because, Marc, no matter how involved the father is, it is still the mother who carries out most of the day-to-day caregiver responsibilities. And also, her responses to the challenges of dealing with the child with the disorder are very different from those of the father (based on objective gender differences). So…get over it. Do the best you can.
wow, i’m a little surprised at all the anger over this article. this is a specific study, not one designed to alienate a. another parent, b. those in the military, c. parents of children with other disabilities. please, get over yourselves and your own problems, grow up and realize that any study can’t possible encapsulate everyone. use that energy positively to push for more change within your own groups if you must, but please respect the work that goes on in this one. its all the ‘what about me’ whining that drove me to write this. again, please respect the study methods that must be used and please use that energy positively to do good, not be divisive. if we use this well, we can make a difference in the studies done and get some more damn funding to get treatments and assistance set up to assist everyone.
As a disabled person whose mother has been his primary caregiver for 19 years, I can attest to the fact that burnout is a reality for any mother who is performing care giving functions. In a lot of ways I feel guilty for needing my mother so much throughout the years because she has deferred a number of her own dreams to make my life better. There is a point when we have to address the real reason for mothers /family being relied on so heavily to perform care giving. In my case I can say the lack of quality pca’s has been a major contributing factor.
Both my son and daughter-in-law are active in the care of their son. Both show signs of stress/depression.
As the years have gone by, they have withdrawn from us and other family members who would be happy to help them. It is almost as if they are angry at us, bitter, whatever. They have done a spectacular job with their child. Early intervention, leading a scout troop to include him, supporting him in a school club, etc. But I wish they would embrace the people who love them the most and who will be around in the future to support this child. Trying to talk to them about it only makes it worse.
I was part of this study, which is a portion of a much larger, longetudinal study conducted by this group. Over eight or so years their greater study of Adolescence/ adults and their families presenting with autism has looked at a number of issues and published on a number of related subjects central to living/coping with autism, including siblings, fathers, individuals w/autism, etc. Those who feel slighted that this study did not include other disabilities should recognize that other groups have done their own studies. This one happen to compare the stress levels of Mom’s navigating older children w/autism and the stress of our military. The grant for this research is specific to older individuals and families living with autism. This is one of the few studies that targets the older population and uses the information to help enlighten others on our lives and advocates for our needs. And for those who say we should not complain about the stress in our lives, I would ask you to walk in my shoes for a few days. I adopted my son; I love him dearly, but life with autism changes every part of a parent’s/families life cycle…it impacts on everyone and continues to do so each and every day and throughout the entire span of our lives.
As a single mother with no outside support and raising a child with autism I can attest to the fact that more respite services would greatly improve both the lives of the child and the parent. While my daughter has greatly improved in behavior recently due to medication (which I fought forever and now wish I had done sooner) there was a period of many years where I honestly didn’t know if I had the strength and energy to do it all over again the next day. There was no relief and it took a major toll. I now have limited respite services provided by the state and value that time away to refresh myself. It’s also good for my daughter to have experiences away from me. I can’t say enough about respite.
I have a 10 year old son with Autism and my husband helps me tremendously, however, he works 12 hours a day 6 to 7 days a week because I had to put my career on hold once my son was diagnosed. I worked for a law firm who decided that since I could not work the 10 hour days and take tons of work home and stay on top of it that my commitment level was not there so they asked me to make a choice. The obvious choice was my child, so now I am a stay at home mom and again my husband helps me and we are a great team but I feel like as a mother I do worry more and stress more. My husband always says it will all be ok and work out whatever way it is supposed to but for me that is never enough. I want to help him more, and I continue to push all realms to help him. I do not think this study was meant to discredit dads or men in general. I think it was done to show the stress that us mom’s endure!! I had my husband read it and he said this, ” Women in general stress more, and worry more about the kids, house and everyday things”. Men in general worry about the financial aspect, then the kids, then their wives. Just a thought !!
Of course Dads fare worse also. Its just “this” particular study was looking at women. This came across my fb the other day: More than 30 percent of fathers of grown children with autism experience symptoms of depression so severe that they warrant clinical attention.In a study presented 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.
“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.
We also need family members to step in now at 43 I have arthritis bad and need all the help I can get great article thank you
What about dads who deal with their autistic children just as much as the mothers. People who write these and parenting articles focus on mothers yet do many seem to forget that these days some fathers are just as active as mothers in caregiving and raising their children. Maybe o e day we will get the recognition we deserve!!
To queen Wendy that is simply
Not true. I have my children from 6a.m. Till 4 in the afternoon then work all night and am up am done most of the wee hours with them so I assure you in our household the scale is balanced at least. And there are many fathers just like me. We cook clean raise the kids work pay the bills and keep the household going. Personally I could care less if I ever get so much as a nod from the parenting community but don’t you dare convince yourself that women are the only ones!!!
Awesome study and article. As the mother of a son ans a step-son, both with Asperger, and my son also having Bipolar Disorder, I now know what’s wrong with me! I have been to war and unfortunatley have remained deployed indefinitely! Thanks for the information!
As a single dad that has cared for (solely) my autistic son for the past 11 years (he’s now 18), and my 16 year old daughter with Asperger syndrome for the 4 years more or less on my own, I’m talking about day-to-day caregiving and everything on top of that. Positive reinforcement, daily training activities with social situations, home work, social behaviour, understanding of social context. Talking to them about relationships, hardships of growing up. How to handle financial matters. Providing them with a calm and harmonious enviroenment at home, lots of love and caring. Laughter! The list goes and on and on…
I can testify that the study is a valid one as far as I can see. These facts about stress should be spread widely. Needless to say it’s hard for me to keep my family afloat as I have difficulties working fulltime while caring for my kids that attends college, as both of them do. Lucky for me I have an understanding employer. I can do some work from home from time to time.
Queenwendy: not all mothers are there for their children. Sometimes the kids have only their father to rely on. So, sometimes it’s not a good thing to generalize your own personal view of gender role models as the “truth”. You have to give us single fathers some cred. We may be few, but we do exist.
What about moms with autism raising children? Moms with autism raising children with autism? Just curious..
I can believe this because my Grandson has Autism and my brother was in Vietnam and my husband was in Iraq. My Daughter is always tired, she never misses work but shes worn out. She’s a nurse so that doesn’t help and she is a single mom.
Just wondering if these moms were stay-at-home moms. I have 2 children on the spectrum, I have provided all of their therapy and homeschooling. I’ve saved us a ton of money and stress from not using ‘therapists’ or the ‘system’. My children are happy, getting a first class education, and using autism to their benefit. I don’t thing anyone needs to ‘support’ our families, we need to help parents stay married, learn to budget and live on one income. This helps to increase the number of alternatives parents have should special needs arise -such as autism. I personally don’t know how parents handle the school system, all that red tape, IEP’s, abuse, being left out of teacher’s plans, etc. etc. – I’d be stressed out too. Staying at home does have it’s challenges, and I haven’t had a break in 8 years. But, my marriage is strong, my family is close, and while we have our ups and downs, overall, we’re definitely up!!
I think this article is a bit of a “duh” moment. Parents of children with any disability would be more stressed than parents of children with no disability. That’s a given. But, it cuts to the heart of the matter, we need support, even if it’s just being there to talk when we call. We have children with Autism and the stress is so very high. I am a stay-at-home Mom. We homeschool. We have therapists that are awesome, but the brunt of the work falls on me. I wouldn’t trade it for the world. I don’t want anyone else teaching or raising my children, but it’s not easy. I try not to complain as I chose to do this. I could put them in daycare and school and go back to work. I choose to stay home with them instead because my husband and I feel it’s the best for them and for us. But the stress is unimaginable. It’s all day, 7 days a week, 365 days a year. And, unlike kids with no problems, we don’t know that our caregiving will end at 18 when we cry tears of joy and sadness as they drive off into the sunset for their first day at college. It could very well be one we live with for life.
I’m grateful for this research, that someone is recognizing what we go through. My husband and I are always on survival mode. It can get dark, when you realize there is no end to our battle. We don’t really get ‘leave’, (who can afford that, with autism medical/therapy draining all your expenses?) – quitting is not a viable option – we don’t get to retire – and we have to worry about setting up our children’s future for when we die – actually, we become as healthy as possible and try to live forever – because no one will love and care for our intense-special-needs kids like we do.
We love our battle, we claim our battle, and thanks for the recognition.
We get very little, outside of the media that we are gullible, emotional, and mislead by alternative medicine, etc. Thanks for this! I wish this were in headline news. I’m so used to the negative press about parents of children w/ autism, this is refreshing.
Mom of 2 children w/ severe autism, one w/ PDD, and one with developmental delays
Having worked with “Aspie moms and dads” for 37 years, I have nothing but compassion for them. I call it the “Steel Umbilical Cord” that connects them with their children, and it needs to be cut from both sides by a diamond bladed saw. Moms have had to be case-managers, social workers, psychologists, activity directors, etc for their sons and daughters. The stress is huge on each parent and between them. Parents need to take care of themselves as much as their children in order to maintain balance.
Very true but all family members, mostly mothers, experience profound stress in caring for those with ALL disabilities, not just those with autism. More supports for the caregivers and doctors are needed to acknowledge, support and implement these options, including respite care and not just roll their eyes at us if we dare to speak up for help and support.
Invite a child with disabilities to your child’s next birthday party, even if you’re afraid of doing or saying the wrong thing…. Feeling like our kids belong relieves a lot of stress!
Just a thought.
Wow, as a single mother of a 19 year old son with pdd, cerebral palsey, autistic tendencies, adhd…. i am a soldier at war myself it is very difficult to get a job and keep one due to calls and hours of my operation (active duty). Hence the fact there is another child on an i.e.p. in the household. However it is my duty as a parent to provide for my son the best of my abilities, no blame for the absent parent that couldnt cope. I have been rewarded and will continue to serve for he is my reward to watch him grow and change and be the best he can is huge a reflection of my duties.It isnt a gender it is a fact well stated we are blessed even if we are exhausted and stressed. Bottom line we need to be educated, We need help!!