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Parents
often report that learning their child is autistic was the most
traumatic thing that ever happened to them. Non-autistic people see
autism as a great tragedy, and parents experience continuing
disappointment and grief at all stages of the child's and family's
life cycle. But
this grief does not stem from the child's autism in itself. It is
grief over the loss of the normal child the parents had hoped and
expected to have. Parents' attitudes and expectations, and the
discrepancies between what parents expect of children at a
particular age and their own child's actual development, cause more
stress and anguish than the practical complexities of life with an
autistic person. Some
amount of grief is natural as parents adjust to the fact that an
event and a relationship they've been looking forward to isn't going
to materialize. But this grief over a fantasized normal child needs
to be separated from the parents' perceptions of the child they do
have: the autistic child who needs the support of adult caretakers
and who can form very meaningful relationships with those
caretakers if given the opportunity. Continuing focus on the child's
autism as a source of grief is damaging for both the parents and the
child, and precludes the development of an accepting and authentic
relationship between them. For their own sake and for the sake of
their children, I urge parents to make radical changes in their
perceptions of what autism means. I
invite you to look at our autism, and look at your grief, from our
perspective: Autism
is not an appendage Autism
isn't something a person has, or a "shell" that a
person is trapped inside. There's no normal child hidden behind the
autism. Autism is a way of being. It is pervasive; it colors
every experience, every sensation, perception, thought, emotion, and
encounter, every aspect of existence. It is not possible to separate
the autism from the person--and if it were possible, the person
you'd have left would not be the same person you started with.
This
is important, so take a moment to consider it: Autism is a way of
being. It is not possible to separate the person from the autism.
Therefore,
when parents say, "I
wish my child did not have autism," what
they're really saying is,
"I
wish the autistic child I have did not exist, and I had a different
(non-autistic) child instead." Read
that again. This is what we hear when you mourn over our existence.
This is what we hear when you pray for a cure. This is what we know,
when you tell us of your fondest hopes and dreams for us: that your
greatest wish is that one day we will cease to be, and strangers you
can love will move in behind our faces. Autism
is not an impenetrable wall You
try to relate to your autistic child, and the child doesn't respond.
He doesn't see you; you can't reach her; there's no getting through.
That's the hardest thing to deal with, isn't it? The only thing is,
it isn't true. Look
at it again: You try to relate as parent to child, using your own
understanding of normal children, your own feelings about
parenthood, your own experiences and intuitions about relationships.
And the child doesn't respond in any way you can recognize as being
part of that system.
That
does not mean the child is incapable of relating at all. It
only means you're assuming a shared system, a shared understanding
of signals and meanings, that the child in fact does not share. It's
as if you tried to have an intimate conversation with someone who
has no comprehension of your language. Of course the person won't
understand what you're talking about, won't respond in the way you
expect, and may well find the whole interaction confusing and
unpleasant. It
takes more work to communicate with someone whose native language
isn't the same as yours. And autism goes deeper than language and
culture; autistic people are "foreigners" in any society.
You're going to have to give up your assumptions about shared
meanings. You're going to have to learn to back up to levels more
basic than you've probably thought about before, to translate, and
to check to make sure your translations are understood. You're going
to have to give up the certainty that comes of being on your own
familiar territory, of knowing you're in charge, and let your child
teach you a little of her language, guide you a little way into his
world. And
the outcome, if you succeed, still will not be a normal parent-child
relationship. Your autistic child may learn to talk, may attend
regular classes in school, may go to college, drive a car, live
independently, have a career--but will never relate to you as other
children relate to their parents. Or your autistic child may never
speak, may graduate from a self-contained special education
classroom to a sheltered activity program or a residential facility,
may need lifelong full-time care and supervision--but is not
completely beyond your reach. The ways we relate are different.
Push for the things your expectations tell you are normal, and
you'll find frustration, disappointment, resentment, maybe even rage
and hatred. Approach respectfully, without preconceptions, and with
openness to learning new things, and you'll find a world you could
never have imagined.
Yes,
that takes more work than relating to a non-autistic person. But it can
be done--unless non-autistic people are far more limited than we are
in their capacity to relate. We spend our entire lives doing it.
Each of us who does learn to talk to you, each of us who manages to
function at all in your society, each of us who manages to reach out
and make a connection with you, is operating in alien territory,
making contact with alien beings. We spend our entire lives doing
this. And then you tell us that we can't relate. Autism
is not death Granted,
autism isn't what most parents expect or look forward to when they
anticipate the arrival of a child. What they expect is a child who
will be like them, who will share their world and relate to them
without requiring intensive on-the-job training in alien contact.
Even if their child has some disability other than autism, parents
expect to be able to relate to that child on the terms that seem
normal to them; and in most cases, even allowing for the limitations
of various disabilities, it is possible to form the kind of bond the
parents had been looking forward to.
But
not when the child is autistic. Much of the grieving parents do is
over the non-occurrence of the expected relationship with an
expected normal child. This grief is very real, and it needs to be
expected and worked through so people can get on with their lives--
but
it has nothing to do with autism.
What
it comes down to is that you expected something that was
tremendously important to you, and you looked forward to it with
great joy and excitement, and maybe for a while you thought you
actually had it--and then, perhaps gradually, perhaps abruptly, you
had to recognize that the thing you looked forward to hasn't
happened. It isn't going to happen. No matter how many other, normal
children you have, nothing will change the fact that this
time, the child you waited and hoped and planned and dreamed for
didn't arrive. This
is the same thing that parents experience when a child is stillborn,
or when they have their baby to hold for a short time, only to have
it die in infancy. It isn't about autism, it's about shattered
expectations. I suggest that the best place to address these issues
is not in organizations devoted to autism, but in parental
bereavement counseling and support groups. In those settings parents
learn to come to terms with their loss--not to forget about it, but
to let it be in the past, where the grief doesn't hit them in the
face every waking moment of their lives. They learn to accept that
their child is gone, forever, and won't be coming back. Most
importantly, they learn not to take out their grief for the lost
child on their surviving children. This is of critical
importance when one of those surviving children arrived at the same
time the child being mourned for died. You
didn't lose a child to autism. You lost a child because the child
you waited for never came into existence. That isn't the fault of
the autistic child who does exist, and it shouldn't be our burden.
We need and deserve families who can see us and value us for
ourselves, not families whose vision of us is obscured by the ghosts
of children who never lived. Grieve if you must, for your own lost
dreams. But don't mourn for us. We are alive. We are real.
And we're here waiting for you.
This
is what I think autism societies should be about: not mourning for
what never was, but exploration of what is. We need you. We need
your help and your understanding. Your world is not very open to us,
and we won't make it without your strong support. Yes, there is
tragedy that comes with autism: not because of what we are, but
because of the things that happen to us. Be sad about that, if you
want to be sad about something. Better than being sad about it,
though, get mad about it--and then do something about it. The
tragedy is not that we're here, but that your world has no place for
us to be. How can it be otherwise, as long as our own parents are
still grieving over having brought us into the world? Take
a look at your autistic child sometime, and take a moment to tell
yourself who that child is not. Think to yourself: "This is not
my child that I expected and planned for. This is not the child I
waited for through all those months of pregnancy and all those hours
of labor. This is not the child I made all those plans to share all
those experiences with. That child never came. This is not that
child." Then go do whatever grieving you have to do--away
from the autistic child--and start learning to let go. After
you've started that letting go, come back and look at your autistic
child again, and say to yourself: "This is not my child that I
expected and planned for. This is an alien child who landed in my
life by accident. I don't know who this child is or what it will
become. But I know it's a child, stranded in an alien world, without
parents of its own kind to care for it. It needs someone to care for
it, to teach it, to interpret and to advocate for it. And because
this alien child happened to drop into my life, that job is mine if
I want it." If
that prospect excites you, then come join us, in strength and
determination, in hope and in joy. The adventure of a lifetime is
ahead of you.
Jim Sinclair
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