DON'T MOURN FOR US
by Jim Sinclair
[This article was published in the Autism Network International
newsletter, Our Voice, Volume 1, Number 3, 1993. It is an
outline of the presentation Jim gave at the 1993 International
Conference on Autism in Toronto, and is addressed primarily to
parents.]
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
t 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.