I had coffee the other day with an autism mom who I had never met before. She was finishing my sentences like we had grown up together. She had an autistic son about the same age as mine, and her level of understanding was almost freaky.
I told her that Billy used to hit people, and although he doesn’t do it much any more, my stress level spikes horribly when he does, and it lasts the whole day.
“PTSD,” she replied.
So there it is. My husband doesn’t understand why I get so upset. “This is part of who he is. He has always done this. Why are you so freaked out?”
PTSD is why. I literally can feel it run through my body. UGH.
I am not unusual, it seems. Disability Scoops did an article on this, here, called “Autism Moms Have Stress Similar to Combat Soldiers.” The article reports that mothers of adolescents and adults with autism experience chronic stress comparable to combat soldiers. That autism moms experience chronic stress is not news to anyone, but it really puts it into context to consider that it is similar to being in combat.
“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.”
“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.
Of course they do. And I would add that they need to find time to exercise. Exercise, in any form, is by far the best way to counteract the bad things that stress does to our bodies, and our minds.
The best way to support moms (and dads or grandparents raising a child with autism) is to ensure our government is aware of the impediments to respite care. For instance, many children with autism also have medical issues that require nurses. Yet, amazingly, we’ve seen lawsuits, specifically in California, over the low reimbursement rates for home health agencies associated with lack of sufficient nursing services. As a result, thousands of parents can’t get the respite they need. Legislators need to understand what is going on, but they often rely on false information from states who don’t tell them what is needed to effect immediate and actual change. Raising reimbursement rates for nursing services provided by home health agencies is a major step in the right direction. For instance, California has 21 Regional Centers scattered across the state. Apparently, a regional center can only reimburse their “vendored” home health agencies the scheduled maximum allowance (SMA) rate approved, unless a parent files an administrative hearing and takes the Regional Center to court, provides evidence that no nursing has been secured under current rates and has an Administrative Judge force them to pay a higher rate. Nursing service reimbursement rates are so low and outdated that it’s created massive gaps in care, which is not the legislative intent of California’s Lanterman Act.