DON'T MOURN FOR US
by Jim Sinclair
This article was published in the Our Voice,
the newsletter of Autism Network International, Volume 1, Number
3, 1993. It is an outline of the presentation I 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
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
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
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
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
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
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
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.
Reprint permission: All articles published in
"Our Voice" may be freely copied and shared for personal
use, and reprinted in other publications, provided the original
author and publication credits are included in all copies or reprints.
If you reprint any of my articles, I would appreciate being sent
a copy of the publication containing my article. My mailing address
P.O. Box 35448
Syracuse, NY 13235
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