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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.