A lot of people talk about becoming alienated from friends – even family – when they have a child with autism. Part of it is the total preoccupation that comes with addressing a newly diagnosed child’s needs – you don’t have the energy or the interest in keeping up your end of the conversation on things that used to matter. Many marriages do not survive this phase, let alone friendships. Granted, for some people it isn’t a phase, because depending on the intensity of the child’s needs, that preoccupation doesn’t ever subside and there is a full-scale retreat into a necessarily specialized world. But there is usually a point at which you look up from your computer or IEP or daily schedule or home log and think, “I miss my old friends and the way I used to be with them.” Despite the fabulous relationships and real camaraderie I have with the friends I have made with kids on the spectrum, I get the feeling that I have somehow lost something so valuable to me in my younger years. It’s real work to remember the person I was and to figure out whether any of the old me is left. It helps to have a partner who shares the emotional care of our child, especially because my parents have already passed and taken with them the objective (kind of) view of my younger self. I know we change as we get older and that midlife naturally brings on a certain kind of navel gazing and regret, but there’s nothing like parenting a person with an alternate reality to really turn your self-image on its head, so to speak. But if you have typical children you are also raising you need to have one food planted firmly in their world, and that, too, can be alarming as you remember your clueless adolescent years and find yourself alternately missing those times and being embarrassed by them. At this point I am haunted by my self-absorbed teenage self and the graying face in the mirror – all the versions of me in-between are currently out to lunch.
But now, suddenly, I am encountering friends who are coping with challenges that I grappled with earlier in my life. Aging parents and chemically dependent relatives, like an autism diagnosis, are now sending others into crisis mode and now I am the one on the outside looking in, and I see that it is hard to know how to be a friend to someone immersed in crisis. I have to remind myself to be a good listener, and to understand when to ask questions and when to change the subject. The hardest thing, surprisingly, is to not get frustrated with them when I think they are focusing on the wrong thing. When talking with parents of children with special needs you develop a brutal battlefield type of honesty that allows you to tell someone to find a new doctor, hire a lawyer, or call the Department of Education. That kind of candor does not serve well in these situations, any more than it did for me in that first year after the autism diagnosis when I could not bear to take my son in for some kinds of testing because I knew it would be torture for him. People who tried to push me into action only sent me deeper into the cocoon I created for my family as we plotted our next move, which I hoped would result in the emergence of a fully recovered child. With the miraculous help of the internet, I plotted the steps that I could take – I think of that scene in Indiana Jones and the Last Crusade, in which Harrison Ford has to close his eyes and take the one big step to cross the chasm that stands between him and the Holy Grail. It is a hold your breath moment, followed by many moments in which people trip lightly over the same threshold that took such courage for Indy to breach because he has led the way. You can’t push anyone into acceptance or advocacy in a difficult situation; they have to take the first step themselves and in their own time.
As I think through this process of learning to properly reciprocate friendship again I recall a moment from last summer, when I visited a lifelong friend (some friendships did survive the crucible) in Iowa at her mother’s house, where I spent as much time as I did my own house. I was so delighted to be back in Cedar Falls after so many years, showing my youngest son the old neighborhood. I sat for a spell with my friend and her Mom, and we caught up on events old and new, and at the end of the conversation her mother observed, “You know, I thought that living on the east coast for all this time would have changed you, but you are just the same as you always were.” Even though I have actively worked to preserve my inner Iowan, it wasn’t until that moment that I knew a kind of success at being myself. All of the angst, all of the work, all of the proving myself in various venues, had not eroded who I was after all. But there is still work to do getting back in touch and on track with friendships that have allowed autism to get in the way and to learn how to support people who are facing issues very different from ours. That process remains work in progress. I suppose that is what is known as life.
Washington Street, Cedar falls, Iowa, June 2011