Autism For Parents

8 May 06

Don’t mourn for us: Thoughts for parents from an autistic man

Filed under: Autism,Confusion,Diagnosis,Understanding — Brett @ 2058

[This article was published in the Autism Network International newsletter, Our Voice, Volume 1, Number 3, 1993. You can find it online at http://ani.autistics.org/dont_mourn.html.

It is an outline of the presentation Jim Sinclair gave at the 1993 International Conference on Autism in Toronto, and is addressed primarily to parents.]

Don’t Mourn for Us
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.

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12 Comments »

  1. Thank You. You have opened my eyes in a way noone else possibly could.

    Comment by Brandi Clyburn — 3 Feb 08 @ 1726 | Reply

  2. I would go further and say that the child that a parent is waiting for,that they expect to be any particular way, before their child is born, NEVER arrives… and yet a miraculous person, complete with infinite depth and worth always does.

    Comment by Clay Reiling — 18 Aug 08 @ 2136 | Reply

  3. Temple Grandin, a real autistic who is NOT against treatment, says:

    “The problem is, you talk to parents with a low-functioning kid, who’ve got a teenager who still goes to the bathroom in his pants and who’s biting himself all the time. This guy destroys the house, and he’s not typing, no matter what keyboards you make available. His life is miserable.”

    Why do all the other self-proclaimed self-diagnosed autistics never talk about this?

    Comment by Jemma Lee — 31 Oct 08 @ 0337 | Reply

  4. I have 2 boys with ASD, one of whom is now high functioning, one of whom is at the Kanner’s end of the spectrum. My children have carried my love and pride with them from the moment i knew i was carrying them. The fact that they are autistic hasn’t changed that, i have never felt grief that they are not neurotypical, but what i have felt is worry that they will face bullying and discrimination in their lives, we protect them very well at the moment but what about when we’re gone? Who looks after them then? It is hard enough getting the provision they need in school, never mind when they leave school. This is what i and many other parents worry about, not regret that they haven’t got some imaginary child instead of the wonderful, challenging, rewarding, fantastic kids they have.

    Comment by Juliet Bell — 22 Feb 10 @ 1759 | Reply

    • amen, sister, my little angel colton is the light of my life. i love the little songs he makes up and the pictures he draws on his computer. but i worry terribly that he will suffer in some way when i am not around to protect him.

      Comment by Angela Stroh — 18 May 11 @ 1401 | Reply

  5. Great post enlightening

    Comment by Suzy — 30 Oct 11 @ 0021 | Reply

  6. That’s all well and good…for children who were born with autism or autistic symptoms. But many were not. My child WAS the child I has waited for, planned for. I had expectations of playing games with him, talking with him, having an easy, bonded, ‘typical’ relationship with him. And I DID. For almost 2 years. And then came Autism. But my child, that one I planned and dreamed for, wasn’t ‘gone’. I did not ‘LOSE’ a child, as you claim. He came. And he was. And he IS still that child. But now, he is also Autistic. We fought to regain the speech he’d lost. We struggled to regain the social skills that had disappeared. We re-learned how to communicate. We are still bonded to THAT ‘dream’ child. He’s sitting next to me now. I dreamed for him, and he’s here. It’s just that things are different now, as if he’s been away for a long, long time, and has adopted the language, mannerisms and customs of another family, in another country. And so yes, I mourn for the things that could have been-the sleepovers, the senior prom, the future grandchildren. And yes, I miss the easy relationship we had when he was small. But he is still himself-the same self that I wished for before he was born. The same self that he was before Autism stole the easy-ness from life. I might grieve for those things till the day I die. But that doesn’t mean I love my son any less. It doesn’t keep me from supporting him, from advocating for him, or from encouraging him to excel in every way he can. And it doesn’t negate the importance of trying to restore as much ‘normal’ to our lives as I can. And it certainly doesn’t make me love him any less. Please, don’t make people feel guilty for wanting something better, and striving toward that goal. My son is Autistic. He will be, forever. He may gain more function, be able to handle social situations more easily, and learn to communicate more effectively. He may eventually be capable of having a ‘typical’ relationship with a peer. Those are things we strive for. And I think if you start telling people, “Your kid is Autistic, and that’s all there is to it. Deal with it, and like it.”, you’re doing those families quite a disservice. A parent who’s child has a learning disability doesn’t just accept it and move on. They accept and love their child, to be sure. But part of being a parent is wanting more for our children that the cards they’ve been dealt, and striving, pushing, always hoping for more. For Better. For something extraordinary for our kids. They are not aliens for us to raise, like a terrible version of Superman’s drop to Earth. They ARE the children we planned for and loved before they were born. They just need their parents to do more, to be more, to work more for the things that come so easy for other families.

    Comment by Megan Harp — 30 Nov 11 @ 2019 | Reply

    • Well put Megan in a parents perspective. I myself did not mourn but did notice reactions to shots that I called in. I am fearful that the increase is “man made” and not an natural 600% increase. My son also was very social and giving great eye contact before his “sensory or seizure freak out”…then things started to change. This was right after his 6 and 9 month shots. He lost control of his tongue and NO, it doesn’t get old telling it, because it’s the truth and people need to hear it. The Medical Community “downplayed” what I had questioned about vaccines and other parents concerns. Well, we all know what this leads to in an IEP, when people Downplay Parents Concerns…a big mess! Our kids are not healthy anymore and 1 out of 6 has a disability and my child had to see more therapists and Dr.’s than all my kids combined. To act like there is nothing wrong or there’s no “big picture” here is wrong. In the one neighborhood I grew up with, it’s about 5-6 of us that have kids on the Spectrum. This is big. We were much healthier before the double and tripled up these vaccines. Facts are facts and the infant mortality rate is up, Autism is up, Diabetes up, Seizures up…Hello! There was hardly anything called “regressive Autism” back then…thanks for the tripling up on triple shots.

      Comment by noreen — 30 Nov 11 @ 2054 | Reply

  7. I think this may be the best thing I have ever read about understanding autism. Absolutely true. I liked the parents’ comments as well. They were heartfelt and powerful. While they conveyed important parts of the family dynamic, some missed the point of the article. This is from the autistic’s person’s perspective, about his own self in relation to the world. I am sure he would be gracious enough to listen to the rest of the family’s part in the family as well. That is just not what he personally wrote about. It is not one or the other. Autistic people should not have to fight with their own family and families of other autistic kids and professionals to be who they are and feel what they feel. I loved that he said parents’ feelings were valid and should be worked through–just not on autism support groups. Grief and loss support is much more appropriate, and the autistic people themselves do not need the further burden and hurt of repeatedly having to deal with something they have no control over. Indeed, those of us focusing on understanding their language and communicating in ways they can understand are looking for exactly that in these support groups. We all had unfulfilled expectations to deal with; we have to deal with them–our kids should not have to. They are real and important and need to be acknowledged, validated and felt. They need to be worked through. He is so right, though, about that not being about autism. It is about grief. He was not accusing parents of not loving their children or not accepting them. Take his thoughts and feelings as his thoughts and feelings. Both sides are valid. You don’t have to snuff out someone else’s candle to make yours brighter.

    Comment by Marcia Clodfelter Cross — 3 Dec 11 @ 1113 | Reply

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