Tag Archives: isolation and autism

Emma’s State of Bliss

It was this state, this blissfulness in Emma that caused us tremendous existential concern.  When Emma was first diagnosed she was two, just three months shy of her third birthday.  She was an exceedingly happy, though quiet and increasingly isolated child.  If left alone, she was content to putter around, seemingly unaware of dangers, which led her to cross the street without looking, wander into a raging surf at the beach, go off by herself never looking back to see if anyone knew or was following, etc.  When one of us tried to interact with her, she immediately made us aware of her displeasure – we were rejected, pushed away.  Emma was happiest in the company of herself.  It was this state of apparent blissfulness, we realized, we would have to break through in order to have any hope of connecting with our daughter.

Parents often describe their child diagnosed with autism as “slipping away” from them, the bizarre sense that their child “was disappearing” or “fading.”  These are the words we use to describe the inexplicable distance and disconnect we feel from a child who appears not to need nor want anything from us or the world.   These words cannot adequately describe the inexpressible grief, the feelings of impotence that inevitably arise from parenting such a child.  The bizarreness of Emma’s “autism” is beyond description.  Our decision to break into Emma’s state of bliss was not without land mines.  We were aware that the world we wished her to enter (ours) was both a selfish desire on our part, but also selfless, in that if we didn’t, it seemed likely she would only sink deeper into a world of her own making, isolated, alone and silent, making it impossible for her to survive.

I am reminded of the poem by John Donne – “No man is an island entire of itself; every man is a piece of the continent, a part of the main…”  That she was unaware of this, seemingly incapable of grasping what this meant was something we knew we would have to teach her.  It is something we continue to work on.

Emma’s sixth birthday

For more on Emma’s journey through a childhood of autism, go to:  www.EmmasHopeBook.com

The Isolation of Autism

Much has been said about the isolation accompanying autism.  Because of the problems autistic children have in communicating, isolation is often an issue.   Even those who are verbal, often have problems with repetitive language, are unable to engage in “small talk” or cannot move fluidly from one topic to another, thus separating them from their peers.  We are not able to discuss with Emma how she feels about not having a group of friends she hangs out with.  She isn’t able to tell us what it’s like for her to live in our world.  These are conversations we hope to engage in with her one day, but at present, they are not something we can have.  The best I can do is imagine and speculate what it must be like for her.

However there is another isolation I can speak of and that is the isolation felt by the parents of an autistic child.  It is a feeling Richard and I have grown accustomed to.  It comes with the territory.  Most of the time it doesn’t bother me, but every now and again, when something happens which makes me feel particularly sad, I have no one other than my husband whom I feel I can turn to.  (I am fortunate to have that, as many people do not.)  Soon after we received Emma’s diagnosis, Richard formed a support group.  There were anywhere from 12 to 5 of us who met once a month.  Richard was hit harder with the sense of isolation than I was, because as a man, it was much more difficult for him to find other men who were willing to sit through the discomfort of seeing their friend upset, knowing there was nothing they could do to fix it.  Women have an easier time with that, it seems.  In any case, Richard formed a support group, where he was almost always the only man.  We met for a few years and then people fell away over time because of work demands or they moved out of the city and eventually the whole thing dissolved.

Emma’s school has a monthly parent group.  I attended it a few times years ago, but it was moderated by a well meaning and no doubt, extremely capable young women, who did not have an autistic child or any children for that matter, and I felt very much an outsider, not a great feeling to have in a support group and so I stopped attending.  Over the years I have come to rely on a group of women with whom I meet once a month.  We’ve been meeting for going on six years now, incredibly, and they have been there for me since the beginning.  I am incredibly grateful to this group of women, but even so, there are days, like today when I do not feel I can call even one of them.

Sometimes, not often, but every now and again, I am overwhelmed with what I can only describe as grief.  Grief that Emma has not progressed more, that anything resembling a main stream school is out of the question for her, grief that she is not able to carry on a conversation that a two year old is capable of having.   Suck it up, I tell myself.  There is always someone out there who has it worse.  Do something for someone else.  Pick up the phone and call someone who is struggling.  Ask them if you can help.  So I do.  These small, tried and true actions are all I know to pull myself up and out. It’s not that any of these things will change anything, it’s that by doing these things, by reaching out to help someone else, I am changing my own despair, even for a few minutes.  There’s a whole world out there of suffering.  Sometimes helping someone else, is the best I can do.