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November 28, 2011

Autism Moms and Stress Like Soldiers?

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What is it about raising an autistic child that causes unusual stress?

Researchers followed a group of moms of adolescents and adults with autism.

"Mothers of autistic children with high levels of behavior problems have pronounced physiological profiles of chronic stress…” said Marsha Mailick Seltzer, a researcher at the University of Wisconsin. Got that right sister. Should’ve come to dinner last year. After I heard a bump that I thought was my son having a seizure, my nerves exploded and I ended up tossing my plate of Shepard’s Pie (not just the food) in the garbage and then fleeing upstairs, where I sat on my bathroom floor and tore out my hair. You’d think upon learning it wasn’t a seizure, I would’ve been relieved. Yet, I was shocked. And angry my body went into crisis mode when it wasn’t a crisis. Had it been a true emergency I wouldn’t have been so upset. I would’ve remained calm, responded, protected and treated, like I have so many times. Why did I respond like this? What the heck was wrong with me?

Studies show a greater level of stress in mothers of autistic children than compared to mothers of children with other developmental disabilities (White and Hastings, 2004; Weiss, 2002). Another study shows higher rates of anxiety among mothers of autistic boys (Korean Academy of Medical Science, 2002).

Stress, based on severity of autism, is not a subject we hear much about in the autism community, as if all autistics were equally stressful (of course it’s not the autistic individual’s fault). But it’s a reality. A reality the mainstream media--obsessed with showing autistics "cured" and autistics happily "playing IPADs" and chatting to reporters-- doesn't help to promote.

 “A hormone associated with stress is extremely low in moms of [severely]-autistic children …consistent with people experiencing chronic stress such as soldiers in combat,” said Seltzer. Stress like combat soldiers?

Maybe that explains once, when triggered by hearing bumps and crashing that I thought was my son hitting his head—but turned out to be a dog’s tail tapping the outside wall— I started shaking and felt the room spin.
Maybe it explains one nurse, who worked with my autistic son 50 hours a week, jumped when he heard thumping, even when he wasn’t working. “I’ve woke up in a sweat, thinking I had to protect him,” said the nurse.
And maybe it explains the day I tore apart the kitchen and suddenly punched myself repeatedly in the face. It was around 8pm. I had been trying to make dinner, but was interrupted at least 8 times by people in and out of the kitchen. My son had just gotten home from a week long hospital stay. It had been a nightmare stay. A doctor, who knew nothing about severe autism, had released my son under-treated. I could hear our home health nurse telling my autistic son “stop hitting your face,” which further rattled me, since the reason my son had gone to the hospital was to find out why he was on a two week self-hitting bender. A bender obviously rooted in undetected pain. I remember chopping salad. I could hear slapping sounds. Banging. Screams. A table fell over. Though two family members had gone to help the nurse, I began shaking, dropping plates. When one of my other kids darted in the kitchen and grazed the coffee pot, and it shattered on the floor, I remember running upstairs. Shutting my bedroom door and beating the tar out of myself. And it felt soothing. Stress like combat soldiers.

Maybe that also explains why I once scolded a child for bouncing a ball around Wal Mart. The sound reminded me of my autistic son’s head punching. It threw me into a panic. I thought I had to respond. It took me a few seconds to re-orientate and realize that my son was even around.

And maybe it explains why I once took off running at midnight, during a thunderstorm; half dressed, screaming at God. I had been alone handling my son’s seizures and self-injury for 24 hours. I remember the stress had progressed into the walls seeming like compactors and the ceiling like cement. I felt helpless. All I wanted was my son to smile, to be happy, safe. There hadn’t been much of a pass down to the incoming respite worker. “There’s been a lot of SIB,” I said, practically sprinting out the door. I ran for hours. I ran until even my dogs stopped running and looked at me like I was crazy. I didn’t feel crazy. Despite the wet, wind-whipped darkness, I had returned home calm, clear and refreshed. Stress like combat soldiers.

University of Washington Autism Center studied stress among autism moms. Parents in the autism group had “higher levels of parenting stress and psychological distress compared to moms of children with disabilities without autism”. Researchers would’ve studied dads, but apparently fathers weren’t as likely to fill out questionnaires. I’m guessing dads were busy working outside the home. Or it was a task better assigned to mother. Autism dads shouldn’t be looked at negatively. Many fathers of autistic children, such as Harold Doherty, author of the BLOG titled, “Facing Autism in New Brunswick,” are strong advocates and remain active in their autistic child’s life.

Stress like combat soldiers. How is it that even a nurse who worked with my son developed PTSD type behaviors? I’ll tell you why: Because of the severity and intensity of the situation. Parents of mildly autistic children or autistics with mild behavioral issues won’t experience ‘stress like combat soldiers’. And should be thankful. So let’s not pretend all autistic children are equally challenging and demand equal levels of supports and services. The greater degree of autism, the greater level of stress, is a reality supported by research. It is not a reality supported by mainstream media.

Are there any positive sides of all the stress caused by raising an autistic child? Yes. Not all stress is bad. My autistic son is an amazing, resilient, intelligent person, stressful inducing or not. Alas, stress, you can’t avoid it. The good news is stress builds character. Stress makes us tougher. Stress teaches us to be patient. Stress pushes us to find treatment. Seek answers. And cling to faith. Stress makes us fight for justice. Demand change. Dare to hope.

Stress reminds us that we still live in a society far from understanding and treating severe autism. Stress reminds us of unmet needs to provide support for autism moms and dads experiencing “stress like combat soldiers.” 

What’s helped our family cope? RESPITE: Without Disability Right’s of California Attorneys helping us win more in-home respite, we would’ve surely ended up in straight jackets. So getting appropriate respite for our autistic son’s unique needs was and continues to be a major help, for all.

Secondly, maintaining a sense of humor. Without humor, you drown in anger and grief (We love Robin Williams, Will Ferrell and Chris Farley movies); Third, watch your diet. Consume more Wild Salmon, organic meats, eggs, yogurt, green drinks, Green Tea, cottage cheese, string cheese, water, coconut milk, walnuts, almonds, apples, carrots and bananas. Fourth, get more exercise.

Fifth, strive for more family meals, where siblings, typically cast aside in the chaos of living with an autistic sibling, are the center of attention. Lastly, faith, hope and love. Faith has been the most challenging. It’s not easy to stay close to God when you feel fractured. But somehow, God has always managed to keep us together. God, for reasons beyond my understanding, has never left or forsaken us, even during times of hopelessness…Somehow, He always brings us through the storms: stronger, safer and saner…

Hope deferred makes the heart sick, but when dreams come true, there is life and joy Proverbs 13:12

Kim Oakley


Marie said...

Kim, this is true plus twenty! I have a son with severe autism and the behaviors aren't every hour or even every day,but I am on constant alert. This wears you down and I have difficulty getting to doctors because my husband has to work so that I can homeschool my son as the resources outside are abysmal AND scary. I watched "The Miracle Worker" again recently and I was struck by how much that situation did not apply to us. The story is amazing and deserves its place in history, but the key point is that Helen's handicaps proved to be ONLY physical though they were certainly profound. She did not have seizures or cognitive deficits and this factored into the "miracle.' But, standard intelligence does NOT equal worth. My son is very valuable, but he won't be Helen Keller. I think that is why the stress is so great on us; we don't conform to the public perception of feel good. BTW, your blog reallyhelps those of us who live what you write. Blessings to you..

marie said...

Oh, I wanted to add that my son is very intelligent. He can manuver You Tube like a pro ; he can establish complex rituals like nobody's business. But, it isn't crowd friendly intelligence; it is often narrowly focused and rigid. He couldn't represent on a telethon or write a blog,for instance. And -you are right- he is invisible to the world unless he "bothers" them whereas he is in my thoughts and heart all the time. Therein lies stress..

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