Someone I know who recently had a baby posted on social media about how overwhelmed she is. She warned everyone that she would not be returning messages or honoring commitments because being a new mom was her biggest priority. She said that she and her husband were in “Survival Mode.” She’s totally right, but I had to laugh a little. Because we autism parents are constantly in Survival Mode. But Autism Survival Mode is forever.
Survival Mode
The term Survival Mode originated from video games. But, currently in our culture it commonly refers to being in a constant state of stress when only one’s most basic needs of survival are important.
Every new parent goes into Survival Mode. You are thrown into a new situation with a whole new person and you are exhausted. Your priorities are feeding the baby, soothing the baby, sleeping when you can, etc. And things like laundry and dishes and other household chores get put on the backburner. So does personal care, texts, emails, bill paying. Everyone knows this, so loved ones try to help out. They cook for you. They come over to watch the baby so that you can take a shower. Maybe they’ll even clean up your house a little.
But this is usually temporary. The baby starts to eat and sleep on a schedule. You get into a routine. You are soon able to get some things done and enjoy life with the baby. And gradually things go back to normal.
Autism Survival Mode
And then there is Autism Survival Mode. Is it similar to having a new baby? Let’s see…
- Not sleeping through the night (or worrying about not sleeping through the night)? Check!
- Trying to figure out what is wrong to soothe your crying child, who can’t tell you what’s wrong? Check!
- Putting out too many fires to worry about yourself, your house, or the rest of your family? Check!
- Feeling brain-dead, hearing voices, losing the coffee pot (and finding it in the refrigerator)? Check!
- A lot of poop? Check! Check! And Check!
We have all of that stress and more! Add in seizures and other medical issues, having more expenses than income, navigating services, fighting with insurance companies, food allergies, hours of therapies, negotiating with the school district … the list seems endless. A 2009 study published in the Journal of Developmental and Physical Disabilities revealed that parents of children with autism experience chronic stress levels comparable to those of combat soldiers. The study found that autism moms spent more hours caregiving daily (than moms of neurotypical children), were twice as likely to be tired (shocking!) and three times as likely to have experienced a stressful event on any given day.
The study doesn’t discuss it, but I think a big part of the stress is being in that constant state of high-alert, consistently existing in Autism Survival Mode. We are always waiting for the other shoe to drop. Will she have a seizure today? Will he sleep through the night? Am I going to get a phone call at work? We can’t shut our phones off in a meeting. We have to be ready to drop everything and spring into action at the first signs of trouble. And we have to always be prepared for anything. We already had the rug ripped out from under our feet once, when our children were diagnosed with autism.
Autism Moms Need Help
The study concluded that autism moms need more help. I don’t find this shocking either. But is there any way to get the help we really need? People are happy to bring groceries and help out for a few weeks, but who in the world can (or wants to) do it forever?
But we parents are of course in it for the long haul. So we keep going, usually in some form of Autism Survival Mode.
We don’t expect anyone to drop everything to help us. But try to show a little compassion and understanding. I used to be a smart, funny, creative, well-dressed, alert, high-functioning member of society who had her act together. If all you see is a disheveled woman with dark circles under her eyes, stains on her shirt, and a messy house who has trouble forming a complete thought … well, just try to understand. Autism Survival Mode.
My autism journey has changed the way I live and care for my family. I am passionate about nontoxic products, natural remedies, grain-free nutrition, essential oils, and healing the symptoms known as autism. This is a space for anyone aspiring toward cleaner, healthier living.
XO Joanna
