In 2010, The Journal of Autism Developmental Disorders published a study out of the University of Wisconsin-Madison that examined the stress levels of mothers who have children on the autism spectrum. They did this by measuring the hormone cortisol, which is directly related to stress, particularly acute stress. This means cortisol is involved in helping manage crisis situations - such as a child's broken arm, a minor car accident, or being late for an important appointment. This hormone, along with others like adrenaline are part of the "fight or flight" response - which has been handed to us by our ancestors who faced predators such as lions, tigers and bears (oh my). Not many of us have ever been faced with needing to RUN or stay and fight a predator, but our bodies still deal with crisis situations in the exact same way. These hormones can actually give our bodies temporary "super-human" abilities for a brief moment for the mere purpose of survival - you've probably heard stories of a man lifting a car off of a person stuck beneath, etc.
When living next door to a Lion is the only option
These researchers found that mothers of autistic kids have similar results as combat soldiers, holocaust survivors, and parents of children with cancer. People in all of these categories have experienced acute (crisis) levels of stress on a regular basis - so this "fight or flight" response has been active much more than nature intended. Our ancestors, if they survived, would move the heck out of the tiger's territory versus risking being pursued regularly. Unfortunately, many people who experience highly stressful situations daily, and even hourly, as in the case with autism Moms, don't have that choice. So, their bodies stay in a constant crisis state. Researchers in this study of Moms with autistic children looked at how the body changes it's response when the stress is chronic - it just keeps coming and coming - and they found that there is a change in how these hormones are released. The change they found was very similar to what is seen by others who experience long-term stress. Unfortunately, we also know that this type of chronic stress often results in what is know as PTSD or Post Traumatic Stress Disorder.
The problem with being chased by a bear EVERY DAY...
PTSD is not just an emotional disorder, as some my think, but is an actual change in the way our brains and bodies function in relation to stress. Typically, the body is "reactive" to stress, meaning that when a crisis happens our bodies react with the "fight or flight" response. This causes us to be hyper alert and aware of our surroundings - think of the last time you thought you heard a strange sound outside your house at night. People who live or work in settings that are high stress on a regular basis essentially live in a constant state of crisis and the body begins to misinterpret and overreact to experiences that are not threatening as if they are. The body begins to anticipate and EXPECT a crisis at all times. This is PTSD.
Not everyone who experiences chronic stress develops PTSD - those who experience actual life-threatening stress may be more at risk - but studies like the one referenced here suggest that the body does change the way it responds to long-term stress. Medical professionals are unsure of how these changes may affect the long-term overall health of an individual, but it is certainly a concern. Medical research does tell us that stress, in general, can have a negative impact on health, but we don't know if this adaptation to chronic stress will be a benefit long-term or if it will also be a risk-factor.
My Personal Encounter with the Predator
So, what does this mean for us autism Moms? Well, I know this all certainly hits home. In the first decade of Abby's life, the stress was enormous! To name a few:
- - The daily meltdowns
- - The INTENSITY of the meltdowns
- - The sensory issues that almost resulted in needing a feeding tube
- - The sensory issues - period!
- - The specialist appointments
- - The family members who don't get it
- - The abuse by the preschool (that was investigated by the state who said they KNEW it had happened, but couldn't prove it),
- - The constant worry about Abby having ZERO safety awareness
- - The bullying
- - The homeschooling that was NEVER part of my plan
- - The loss of a career I loved because being a full-time Mom was a necessity - not a luxury
- - and the list goes on...
Coupled with all of this, many families have multiple children with autism spectrum disorders or other health problems. Abby's brother, Aidan, is not autistic, but he has epilepsy and sensory processing disorder. I'm getting stressed out just writing about all of this right now! For me, many of these issues have decreased significantly over the last several years as Abby has matured and learned to cope and as Aidan has outgrown epilepsy. Interestingly, my health is significantly improved in the last couple years, as well.
I have an autoimmune disorder, Lupus, that is known to worsen with stress, and boy did it ever worsen! There were days I could barely get out of bed....but I had to. I developed migraines that would last for almost two weeks - no, you didn't read that wrong. My joints throbbed, my hair fell out, my muscles felt like I'd run a marathon with no training, and I gained weight because of my inactivity. My doctor was a jerk who thought I was a neurotic female, and my friends and family couldn't comprehend the pain I was experiencing. All of this was piled on TOP of the list I made above.
What's a Mom to do? Hear this!
My story is not unique. I have met MANY moms of autistic kids with very similar experiences. Health conditions that exist prior to raising an autistic child DO get worse, and often new health conditions appear. So, how do we deal with all of this? How do we manage it all? How do we cope with the stress when we can't just pack up and move away from the Lion that lives next door?
Mom's, read this! Read this again. And then one more time. You MUST find a way to nurture yourself. It might be small, but it HAS to happen.
- Schedule time to read. NOT a book about autism - a book that takes you a different time and place. NOT a crime novel that will have you on the edge of your seat. Our body doesn't know the difference between a real threat and one that's happening in a book or in a movie. You don't want to cause a stress response during your "break time!"
- Watch a movie - NOT a thriller! A romantic comedy. Something that makes you feel "light."
- Get a massage - even if you can't afford it. I couldn't afford it for years, but I did it anyway. I wasn't a luxury. Find a massage therapist that is willing to do 30-minute rates.
- Have lunch with a friend and DON'T talk about your stressors the whole time. It is important to vent to people who understand, but limit the amount of time you talk about it. You re-live it a little when you talk about it and, guess what? Your body reacts all over again!!
- Take a walk or go for a run - anything that gets you moving. Activity naturally releases hormones that counteract the stress hormones.
- Have sex. Yup. I know you're exhausted, but just go through the motions if you have to - although you might want to clue in your significant other. Sex is proven to reduce stress levels.
- Get AWAY from your kids!!!!! I put five exclamation points after that for a reason. You absolutely MUST find a way to get away. Leave them with someone you trust. I KNOW that you don't trust anyone like you do yourself, and I KNOW that you're horrified that others won't be as vigilant as you (and safety really IS a big problem with autistic children). I know that your chronically stressed body has you convinced that there will be another crisis or disaster any minute, but You HAVE to let that go for at least an hour or two and trust that your child will almost certainly be okay long enough for you to have a break. While you are away from them, you MUST do something to distract your brain so you can't think about them and worry about them at all times.
- Do these things REGULARLY. Commit to it. Put it on the calendar as recurring. If you have a supportive significant other, then have HIM put it on the calendar. If your significant other is not supportive, DO IT ANYWAY! Don't waiver from this if at ALL possible!!
What say ye?
So, I want to hear from you. How does this all resonate with you? Can you relate? How do you cope? Comment here or contact me via the web form.