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Autism Moms Have Stress Similar To Combat Soldiers

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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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Comments (317 Responses)

  1. Danae says:

    I am one of the mom’s who was in this study. To be fair, this whole study was over 12 years long. This was just a small part of the results. When my 29 year old son was diagnosed with autism there was very little information or help out there. This study was started back in 1998, I believe? This article highlights just a very small part of what was discovered during the whole study. Also, none of us received individual test results, everything was and remains confidential. There was no personal gain for any of us to be made, it was all done to improve the lives of adolescents/adults with autism and their caregivers. Some of these comments are a bit offensive to me, of course it could apply to other special needs, etc. but this study (funded by grants) chose to focus on ASD…

  2. Teresa Vittorioso says:

    Yes, Yes, the article applies to all parents of children with special needs- well at least to those parents with non-verbal kids with lots of special needs who have aggressive and otherwise damaging chronic repetitive behaviors. So if your kid with cerebral palsy screams or flails or hurts himself or others, than you know how I feel, and the article applies more to you than it does a parent to a kid with high functioning autism who is socially awkward but talks and solves complex math problems in his head. Let’s not get caught up in semantics. This article is about how parents with kids like mine, parents like me, NEVER NEVER get a break- 24 hours a day- 365 days a year- people ask what are you doing for christmas, your birthday, your daughter’s birthday, etc, etc, the same thing we do everyday- try to survive and continue loving each other through the constant struggle. I’m not saying the struggle isn’t real for all parents of kids with special needs, but i wouldn’t say all parents of kids with some special needs have the same level of stress as a combat soldier. I have though, been saying that I do indeed have a traumatic stress disorder for years before this article came out. And I’m tired of trying to be PC about it. Some of you all have it as hard as I do, some a lot freaking harder than I do, and some not as hard at all. I appreciate the things in my life that aren’t as hard, but i also get pissed when ppl with kids who have Asperger’s or some rare genetic condition that might make their delightfully brilliant and well behaved child lose their vision some day try to compare their lives to mine. No. that’s not as hard. You don’t get it. It sucks and I’m sorry- but its not as hard. not combat soldier level. I’m not trying to pit us against each other- but I think empathy starts with understanding this.

  3. connie says:

    The past few months I’ve been worrying I may have the beginning of diabetes, I could not understand why my body was functioning different after I ate sweets. This article makes it clear, due to the stress levels and constant care for my autistic son after he fractured his ankle at an indoor trampoline facility. I am sure the added stress also was a contributor to my hair loss also. Add to that our school district refusing to provide home instruction unless I carried him down stairs to a “common” area, he’s not a feather, my back will never be the same.

  4. Jaz says:

    It was nice to be validated. I have felt for years tremendous stress and panic over things i have no control over with regard to raising my son with attention, rage, emotional/ behavioral and learning needs..and the guilty i felt for my perceived neglect of my younger gifted son. So many things rang so true. I thought i was going to die. I lost my job, and almost lost my mind. It was the most challenging thing I have ever been thru. I am lucky..I am working it all out…I have slip backs but with validation and ongoing therapy..I am stronger. I identified with the article and found it supportive. Thank you for posting! :)

  5. TracieCarlos says:

    I never thought of it this way. I still experience some stress, fatigue, lots of fatigue but so happy to have shifted from despair and depression to occasional jammie days where I lower my expectations for everyone, including myself.
    I searched and searched for someone to show me how to get through, in a new and different way that did not include feeling depressed, outright despair more often accompanied with the feeling of wanting to end my life. Nor did I want to be pessimistic, hateful of and about Autism. (I had heard plenty of what I would experience in venomous language from other fellow parents in so-called parent groups) It turns out, I am the one I was looking for all along. Isn’t it this way for all of us, no matter what we are going through in life that may be challenging?
    It isn’t about what you are given but how you focus and shift. Our son is now 16 years old, such a blessing, his mother’s greatest teacher, my little master. Yes, we still have occasional challenges but they are nothing like what they once were, not only because he has changed and grown but because his mother has changed and grown in incredible ways. It is my humble perspective, this population as well as many others, are here to change the views of our world, if we are willing. I AM very willing. If one child can change his mothers perspective in the way this child has, imagine what this population WILL DO for the world. With great appreciation, Tracie

  6. Candy says:

    As a single parent mum of a 21 year old son with ASD – ADHD and a family that just never got it, despite a sister in the care industry, the most difficult part is the living on eggshells due to the highly unpredictable nature of his thoughts and opinions on life in general. Social aspects and interactions with people in general are a constant source of immense stress due to his likelyhood of exploding temper and contra opinions. His amazing lack of patience or empathy with the simple fact that everyone is entitled to think differently and hold different opinions is what makes us all individuals makes it difficult for him to maintain meaningful relationships and friendships. When his opinions are challenged, or he only hears part of a conversation and reacts to his perception of a conversation – watch out for t he explosion! Don’t get me wrong, he has friends, just not close buddies due to his lack of ability to recognise cues in conversation.
    His crippling low self esteem means he finds any belief in his amazing abilities for fact retention and information storing difficult to use to his benefit. Tie this in with his lack of patience and literal take on life in general makes it very difficult for normal expectations of everyday living.
    Life is very stressful, tearful, frustratingly limiting and lonely and in my experience the only people that “get it” are people in similar situations. The rest of the world label you as overprotective, neurotic, a push over etc who should show my son the door! How helpful is that???

  7. Catherine says:

    In response to the message left at 11.50am on August 1.
    I have a child with Aspergers and I can categorically say that it is exhausting both emotionally and physically. Yes, he is verbal, yes he is intelligent. But he is also violent, verbally abusive, has no sympathy or empathy and is in a constant state of high agitation. He does not have the ability to consider the impact of his behaviour, he is vulnerable to the suggestions of others and is unable to really distinguish between a good or bad decision. Yet he thinks he is ‘fine’.
    I understand that you think your situation is ‘harder’ but this is because my son’s disabilities are hidden. It is not helpful to pit the parents of children such as mine against those parents whose children may have obvious physical disabilities where care giving can be physically exhausting.
    I can most definitely say that I feel like my stress levels can be likened to that of soldiers in combat. My family has been through years of emotional distress with physical assaults regularly (and I mean almost daily) taking place and abusive language that would make a soldier blush!
    How about we appreciate that both of our lives are not how we thought they would be and accept that, perhaps, the levels of stress we experience are unquantifiable to an outsider.

  8. Janet Madison says:

    You said it.
    My sister has 3 on the spectrum, 12, 10 and 6. God gives her and her husband
    grace and peace. I see what an incredibly difficult lifestyle they have. Of course, most of
    the task of care taking and managing of the family, is on their mom. She is a great mom.
    I admire mom and dad.

  9. Janet Madison says:

    After reading the other comments below, I just want to cry.
    Take one day at a time, and pray to God for strength.
    The big picture is so very scary, but all that we have is today.
    Get through today.

  10. Dorene C. says:

    I have 3 children on the ASD spectrum. The oldest is non-verbal. Every day is a challenge. I love my kids dearly, but I wish I’d had them earlier in life. I’m 46 and old enough to have grandkids… In other words, I should be enjoying my middle years…not raising children, especially ones with special needs. I’m physically and emotionally exhausted, stressed to the max, have very little support, and to top it off, a selfish, verbally abusive husband. I feel very much alone. I see no light at the end of the tunnel. This will probably be my cross to bear until I die. I’m a very resilient person, which is one of my best qualities, but even Superwoman has her limits.

  11. Lj says:

    ASD as we all know here encompasses a wide range of problems and severity so I would agree that not everyone who parents an autistic child would experience the same levels of stress. On the other hand studies such as this one are representetive of the sample population that they test – so if the findings indicate lots of chronically stressed out parents then the sample group probably was made up of some of the more severe cases anyway. The fact is that autism is tough, it’s tough for every one involved and that takes its toll – this study recognises this and provides some good evidence to back it up. My 3 yr old son is autistic and has daily rages (including hurting himself himself and me) which is very stressful for us both. He has no speech and too many other problems for me to list here. Life is tough for all parents of autistic kids but its not a competition – every one has different tolerence levels to emotional pain. I for one would not say no to some sage advice on how to stop my heart from trying to escape from my body during extremely stressful times and that’s what studies like this one can start to look at (its only when issues are academically assessed and recognised that things start to get done).

  12. Lynnda says:

    i am writing in response to Catherine’s post of August 11. After many years in and out of hospital my daughter was finially diagnosed with Aspergers. This post described my life. I was recently compelled to resign my job after 13 years when I started being abused and harassed by a new manager. Needless to say, the company stood behind this managers atrocious conduct. To me this feels like nothing more than discrimination. My daughters condition never effected my work performance, and I did not ask for special treatment just a little understanding. Our lives are already so limited, that this just felt like one more loss. I don’t know if the stress is similar to combat having never been in combat, but I do recognize and have experienced some of the symptoms of PTSD.

  13. Stacey says:

    I would like to see one done with those who have children not only with autism spectrum but with other medical issues as well my son has Cystic fibrosis ADHD seziures autism hypothyroidism and VWD my stress is very high he is currently on home iv antibiotics again for a lung infection which hd has a med port for he gets tube feeds and has a stoma as well

  14. Sue says:

    Tracie, I am the grandmother of a non verbal autistic boy he’s 6 now ,I got him as new born you seem to have gone through what I’m going through, and I’m losing my mind, I have absolutely no one to help me through daily living. Please how did you do it ? anyone tell me how to get through this!

  15. Robert G says:

    The study results hinge on the quality of the parenting and support available. It would depend on how well the mother understands their Autistic child and make provisions for sensory overload, provides adequate attention but not too much, doesn’t bombard the child with too much structure, therapy, brain damage via quack treatments such as electroshock or mms… And accepts the fact that their child are not “afflicted with” autism like a disease to be eradicated but see the child as a whole and different being; Autism isn’t a processing error– it’s a different operating system; there is nothing “wrong” with them and to have the child think they are lacking would be a stressor for child… Some parents have an easier time than others because they know how to not aggravate the child in ways like this which are counterintuitive. I felt this article is heartfelt and informational, but only tells one side of the story, so as an Autistic adult myself I thought I’d toss my 2 cents in. Have a nice day thanks :)

  16. Carole says:

    After reading through these various posts, I finally realize, after about fifty years of going through various phases of my daughter’s disability, that parents and caregivers now at least have professionals who can help them. The parent has to be a strong advocate for their son or daughter. When my daughter was born, all I heard from medical professionals that I must not have really wanted my daughter (my fifth child), and that was the reason she was handicapped, etc. This was because doctors and social workers all studied Bruno Bettelheim’s theory that autism was caused by mothers who were stressed and did not want the child. This theory was based on his experience with autistic children from German concentration camps. He claimed to be a psychologist, but later it was discovered that he had invented his academic credentials from Austria. So many parents in my age group suffered emotionally because of him. When we were referred to a new professional, the doctor always cocked his/her head and asked me, “did you really want this child?”‘ blaming the parent for the child’s problems. and so the interview began.

  17. Julie Rockwell says:

    Why not tap into senior citizen resources to offer more respite care options for families who are raising a child with Autism? I am a retired Special Education teacher with 34 years of teaching experience in Autism and other developmental disabiliteis. I’ve always had a desire to assist families in the home setting; however, I have spent most of my time in the classroom. I am well aware of the stress that families face on a daily basis when raising a child with autism. I also know how difficult it is for the siblings too. The divorce rate has always been high for the parents of my students, and, I believe that the results of your studies are much more conservative than what I have seen. At the beginning of my career, it was the fathers who left. Now it is the mothers leaving first. Often I never meet the natural parents, leaving me to work with grandparents and foster parents of my students. Some of my students had already been in fourteen different foster care settings by age seven. This trend has to be reversed. I want to assist in strengthening families who are faced with daily challenges and need more support.

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