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.
I have a wonderful, sweet, non verbal, low functioning, behavioral son. I love him with all my heart, but it is physically and emotionally exhausting being his caretaker. My son will need lifelong care, and that weighs heavily on me as well. The stress has, like others, taken it’s toll on my body and mind. I would just say to everyone to be kind and patient with each other, particularly if you are part of the special needs community. Human nature will continue to be what it is; most of the folks out there are good people, some even altruistic, a smaller number ignorant and not kind. Stay away from those folks as we need positive energy in our lives. NO ONE can understand your journey unless they walk in your shoes. I try to remember that when I get disapproving glances etc. I just think to myself,”you’ve got no idea what it feels like to clean up fecal smearing day in, day out,and the emotional toll it takes, so go fly a kite.” On a good day, I might try to educate, but I’m not always up to it. I just try to do the best I can with my family. Would be nice if there was a bit more compassion out there though. If only the world was not so judgmental… Stay strong everybody, we’ve got a hard job!
I experienced that, because in addition to ASD, my son had ODD. I really did have all those symptoms and challenges, and I am still trying to improve my health and my energy levels, etc.
Not sure this is new news. I read journal articles all the time as a special educator and advocate and this isn’t new news. Any parents if children with disabilities have more stress.
Appreciate that this study was completed but all of us moms who have a child, youth or adult with behavior challenges or mental health needs, experience more stress, are more tired and have less time to think about much less participate in leisure activities. Not rocket science. We are mostly isolated and lack sufficient support systems to cope with these challenges. We mostly survive for better or worse, but love our kids fiercely and advocate for them every single day. I have three with a variety of needs, developmental delays, ASD, bi-polar, seizure disorder and ADHD. I wish a happy mother’s day to all the moms who get up every day to do what it takes and experience all the more joy when we see our kids succeed.