I just read a recent article by a psychiatrist proclaiming that a family with an autistic member needs to “reassess its priorities” and consider professional help in organizing their lives.
She went on to emphasize the importance of parents and caregivers taking time out for themselves and spending time alone with their partners and other children in the family.
Free associating, I came across a 2009 article in Disability Scoop report showing mothers of adolescents and adults with autism experience chronic stress comparable to that of combat soldiers. Levels of a specific hormone connected to stress were found to be very low — as low as those of active duty military. Over time, this hormonal condition may manifest in immune disorders and other serious illnesses.
In a companion study, the researchers followed up with the same group of mothers to assess their daily lives. These mothers spent at least two hours more each day as a caregiver than mothers of children without disabilities and were twice as likely to be tired and three times as likely to have experienced a stressful event. Additionally, autism moms with outside jobs were interrupted at work one out of every four days compared to less than one out of ten days for other moms.
Yet in a true testament to the dedication of autism mothers, these individuals were just as likely to have positive experiences each day and volunteer in their communities as those whose children were neurotypical.
As for myself, my life is in a constant stage of triage as I prioritize all the important things that need to be done. If I brought in a professional to help me get organized, I know exactly what he or she would say, only I’d have to pay to hear it said. And while the idea of taking time out for myself is a great thought, the reality is that I steal my time alone by staying up too late after my sons are asleep or getting up before they do in the morning.
In evaluating the best cities for autism in Autism Speaks’ recent list, lack of respite care was the single biggest complaint from parents across the nation. I would love to see a chunk of money from all the walks, runs, banquets and spaghetti dinners during Autism Awareness Month applied to this pressing need. Then all of this great advice about taking time out to replenish ourselves and our other important relationships would feel doable instead of like grapes hung just out of Tantalus’ reach.
As we all know, Sunday is Mother’s Day. Hats off to all of us as we soldier on.