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.