I have read in several places (and heard one NPR piece) about how parents of children on the spectrum report higher stress levels than parents of children with other disabilities, such as Down syndrome. The most likely causes of this are related to the nature of autism itself. First and foremost to my way of thinking, many children with autism are unable to show affection in ways that are satisfying to parents (hugs, kisses, saying "I love you," expressing appreciation for what the parents do, etc.). Lacking the ameliorating effects of this positive social feedback for their job as parents, they are much more likely to feel stress.
Frankly, I'm surprised actual research money needed to be spent figuring this one out.
In the past, I posted on Questioning my Intelligence that I don't feel excessively stressed by Jack's diagnosis, and part of the reason for that may be lessons learned during my struggle with depression. For me, Jack's diagnosis meant a lot of driving around and sitting in waiting rooms, and coordinating care with therapists and doctors and teachers. But at no point in this journey have I asked God, "Why Jack? Why me? Why our family?" When I read about people's stress on getting the diagnosis and as they continue to care for their child, I absolutely understand the rage, the fear, the self-pity, and the self-loathing.
I understand because I felt all those things twenty-five years ago when struggling with depression. Other than the fear, however, none of those feelings have touched me in relation to Jack's diagnosis. The fear is there every day: fear that we're not doing enough, not doing the right things, missing something that might help. There's also the fear of what challenges Jack will face and how cruel the world might be to him as he grows up.
But more fundamental to my ability to cope with the stress of having a child with autism is the level of feedback I get from Jack. He's high-functioning, affectionate, loving, deeply appreciative. He's verbal and says he loves me. That makes the hours of waiting in rehab, driving all over creation for appointments, worrying and fretting and thinking and stressing absolutely worth it and much easier to bear.
If he didn't have his demonstrative nature, if he couldn't talk or wouldn't hug, I wouldn't find any of this journey as easy as I have. A friend with an adult child on the spectrum was astonished when she witnessed Jack telling me he loved me and giving me a hug. Her son doesn't do that. It breaks my heart for her, but she seems to have made peace with it and appreciates her son for who he is. She glows when she talks about him, and that alone says a lot about her character. How I admire her strength and faith!
So here's my question for today. What do you do to cope with the stress? What is your perception of your stress level and to what do you attribute it?
This is a huge topic, with far too many variations for a single blog post...or perhaps a whole book. I'm just scratching the surface here, but feel free in your comments to bring up whatever strikes you most about the topic of parental stress and autism. I'll be posting in the future about those sub-topics that I've noticed myself (such as the stress caused by parents who act like you don't love your child if you don't put him/her on the GFCF diet or in ABA), but it would be great to have more suggestions!