By Sophie Walker
One of the hardest things about being a good mother to Grace is knowing when the level of homework distress is related to her having Asperger’s syndrome and when she’s just being a moody preteen.
Grace was formally diagnosed with Asperger’s syndrome only last year, after ﬁve years of waiting lists, inconclusive assessments, repeated questioning, and a lot of shoulder shrugging. By then, Grace’s dad and I had years of rationalizing that we suddenly needed to re-examine and recalibrate: from how we reacted to the little idiosyncrasies to how we dealt with odder behavior, to coping with the bigger things we really worried about. Even now, we’re only at the start of ﬁguring out what’s AS and what’s not (and we don’t always agree).
For a long time, we thought Grace’s distance and “otherness” might be a reaction to us divorcing. We put down to eccentricity her fear of dogs and balloons and hand-dryers. (We’ve since learned that “Aspies” are extraordinarily sensitive to their surroundings — what we heard as loud noise was really painful to her.) Her inability to read people, or to show curiosity about them, or participate in conversations was, of course, classically autistic and seems so obvious now that I berate myself daily for not realizing it sooner and tell myself to be more sensitive in the future to her behavior.
So when Grace greets me at the school gates with a glare and the words, “I’ll kill myself if you make me do piano practice,” do I accept that she just has no ﬁlter for her sentiments and is anxious that she may not be able to play something new? Or do I tell her off for being rude to me and put it down to a nine-year-old’s melodrama?
When she refuses to eat her dinner because I have forgotten about her dislike of hummus (bad middle-class mom!) and put it in the center of her plate, where it has touched other foods, do I scold her for overreacting and tell her to eat the rest? Or do I calm her down and get her a new plate?
One day, on our way home from school, Grace was railing about the unfairness of being told off by her teacher for lashing out at a classmate (and familiar foe) who was taunting her (again). In fury, Grace had pulled this girl’s hair — and received a whack from her by way of compensation. They were both reprimanded and warned not to do it again. Grace was bafﬂed by this and felt a huge injustice had been done to her.
As she sat in the car shouting that her life wasn’t fair I tried to reason with Grace that she shouldn’t have touched the girl who was teasing her — no matter how hurtful or annoying she was. Grace just shouted louder, ﬁsts clenched on her lap and the color rising in her face, “This was the WORST day of my LIFE.”
At that, I saw red and shouted back, “For God’s sake, Grace, how could you possibly think it’s okay to go around pulling people’s hair? What planet are you on?”
For a moment, she paused. Then her face crumpled — and she looked like a confused four-year-old again — and she bent her head and sobbed. Loudly. Then more loudly. Then wailed and yelled louder still. In the conﬁned space of the car the ampliﬁcation of Grace’s rage and hurt was overwhelming and unbearable, like an audio bomb had gone off.
Navigating rush-hour trafﬁc I barely saw, I felt panicked and sad. Grace really is on a different planet from the rest of us — it’s how Aspies see themselves. A widely used and popular online forum for the autistic and Asperger’s community is www.wrongplanet.net. For a child, being on the wrong planet must be even more frightening and confusing. Had I made a terrible, insensitive blunder and compounded her feelings of separateness and worry? How then should I teach her to rein in the kind of behavior that looked to others to be self-centered and willful? Was it one or the other or both?
At home I fretted and frowned while Grace played piano (ﬂaw-lessly) and I cooked.
Over the dinner table we faced each other in tentative silence. Then Grace said, “Hey, Mummy — ” and pulled the silliest face she could imagine. I laughed, and she laughed, and baby Betty cheered and threw food in excitement.
It was a mistake to try to separate bits of my daughter into comprehensible compartments. She is the sum of her parts. She is Grace and she needs patience and understanding and love. Lots of love.
But how could I provide all of that given the state I was in? I was frightened for her, sleepless and worrying and frazzled. I was dizzy with tiredness and knotted with stress. I shouted — all the time. I was entirely incapable of resolving her fears and tantrums with patience and love.
Clearly I had to take myself in hand.
Sophie Walker is the author of Grace, Under Pressure. She has been a reporter for Reuters News Agency for sixteen years and has worked as a foreign correspondent traveling to Iraq and Afghanistan with Prime Ministers Tony Blair and Gordon Brown. She lives in London. Visit her online at http://www.courage-is.blogspot.com or on Twitter @sophierunning.
Excerpted from the book Grace, Under Pressure: A Girl with Asperger’s and Her Marathon Mom © 2013 by Sophie Walker. Printed with permission of New World Library www.newworldlibrary.com.
Also take a look at my book review about Grace, Under Pressure.