Saturday, June 23, 2007

Don’t Mourn For Us 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.

This poem or letter was made by Jim Sinclair an adult with Autism. This adult with autism helps parents to sort out these very important issues. As he puts it, “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.”

People with Autism are wired differently but just like you and me they are human beings.They have the need to be accepted and loved unconditionally just like them giving so much love to the people around them.Love emanates from these children.You can feel it all around them.

It can be felt by the way they lean,they put their head close,the way they talk to you,one of my students would put his nose to my nose when he says something,this way nobody can hear but me what he says.Then when somebody asks what he said,he does it again to warn me not to tell them what he just told me.

They are all very sweet.

My first year of teaching children with Autism I spent in a public school and as expected most of them lack the therapies they needed.We as teachers were expected to do everything for them.I have noticed that those with self – inflicted injuries and aggression have somewhat been feeling rejection by somebody close to them.

I had a first hand experience regarding this working with a 4 year old Autistic boy in Saudi.The mom is rejecting him.She even lets the 5 year old daughter beat the 4 year old boy.And she gets away with it because the dad who is working doesn’t know whats going on.The mom would buy things for her daughter everyday but will only buy a few things for him ..very seldom.

This boy would hit,scratch,head butt and bite the Ethiopian nanny.Slowly I was able to remove all these aggression.I made him realize…and believe me they are very bright kids,that hurting is bad.When he does it I put him in one corner,hold his face,make an eye contact and tell him “no hitting” then I say “its bad”.If he answers he wont do the bad behavior again.But if he doesn’t say ok,he will do it again.

Then I talked to parents and told them why he is doing the aggressive behaviors that they should not allow the daughter or anybody for that matter to hurt him.These children doesn’t know the idea of fighting back but they can imitate.

This boy would sometimes raise his hands,wanting to hit back but being so loving and sweet boy that he is,he will resort to hugging the sister instead.This is how they are..very loving people.

We just need to see them as they are and as they say…enter their world…because as the boy wrote here they feel like they are aliens…because they have their own world…and if we will not love and accept them and understand them,then they will never come out.

The way they progress will depend not only on the therapies they had,it will depend more on the love they feel around them,the acceptance that they feel.

Monday, June 4, 2007

Sensory Overload Explained

This is a true account of a person with Autism.

On the AutAdvo list, one of the NT members asked about sensory overload. This is certainly a topic of importance, given how strongly it affects the life of the autistic person, so I posted a rather detailed reply. I was surprised by the feedback I received for that post... it was overwhelmingly positive, and several people asked that I post it on my site so that others can read it. I was happy to do that, certainly, as helping NTs to understand autistics is one of the purposes of this site.

I will include the original citations from the post to which I replied, since the responses I typed were geared toward the questions as posted. Those original questions will have the greater than '>' symbol in front of them.

What type of sensory overload? Is it auditory, visual, other, all?

It is different with each of us, but the short answer is 'all.' It can be any of the senses... I know that loud noises, or even persistent quiet ones, add significantly to the sensory load, and certain types of noises are worse than others. In time, my nervous system will return to normal if no other loads are placed on it, but if there are more noises or other loads present, the stress level will build faster than I can burn it off, and I will get overloaded.

I have described it like this. It is as if there is a reservoir of sorts that each of us has. This reservoir starts off empty, but the things we experience throughout the day fill it up. Any sensory load (which I define as stimulus that the nervous system is describing to the brain-- in other words, anything that can be felt) or other nervous system load will cause the reservoir to take on more fluid. It does not have to be unpleasant-- even pleasant kinds of sensory load (like enjoying a movie at a theater-- I like it, but it does present a notable sensory load) fill up the reservoir. Things like the smell of people's perfume, bright lights, constant motion (I cannot tolerate seeing too much motion, especially if there is more than one velocity of motion), noise (the more painful or annoying, the worse), etc., all tend to fill up the reservoir.

Other things also cause the level in the reservoir to rise. Social contact does this. It is not just the noise of people talking and seeing them move that causes the sensory load. For one thing, I have auditory processing problems, so I really have to work to understand spoken words. That causes the reservoir level to rise. Being ready to interact, or what I call being in interactive mode, is also difficult, and causes the level to rise.

Finally, thinking about what the other person said and devising a response real-time (as opposed to email, where I can respond at my leisure) also causes the reservoir level to rise rather quickly. The more difficult the interaction, the more quickly the level rises. In other words, if I am talking to other autistics, it rises slower, because I can talk more freely than I can with NTs, where I always have to try to guess what needs to be said. That is exhausting, and that exhaustion shows as rapidly rising levels in that reservoir.

I am stressed most of the time. Just for the fun of it, I took an online stress test (using the classical definition of stress as a bad thing, which is not exactly true, as I will get to in a moment) this morning, and it said that I had a stress level of 7%... "Your stress level barely registers." Oh, if only that were true. I don't have any way to measure this, but I think I am probably more stressed than most people that do all of the stressful things that would give them a high score on that test.

Things that are low-stress or that reduce stress in NTs are horrible for me. Stress, of course, adds to sensory load. Fear, anger, and any other powerful emotion makes the level in the reservoir rise rapidly. Happy contentedness makes the level go down, but positive anticipation, suspense, or excitement, at least for me, cause the level to rise, not fall. Having things not go according to expectation, or having the routine broken, causes the level to go up. Indulging my perseverations (like researching a topic with which I am obsessed) reduces the level in the reservoir, even if it involves things that are usually stressful, like interacting with people.

Just about everything I do outside the home makes the fluid level go up. As you can see, living in this world is in itself a highly stressful, sensory-loading kind of thing for my kind. Things that you do not notice can cause huge problems for us.

When I get time alone in a dark, quiet place, I can burn off some of the sensory load and cause the reservoir to become less full. Rocking, flapping, and stimming also help me to lower the level in the reservoir. Our tendencies to isolate ourselves, to flap or rock, to routinize our lives, to put things in a specific order, et cetera, are, in part, ways of reducing the level in the reservoir, or keeping it from filling up in the first place. In my case, I do many of these things as the reservoir begins to fill... so it fills much more slowly. My stims are vital to me being able to cope with the world, and I do them wherever I am if I need to. Others have been taught not to do these in public, so they let the reservoir fill up until they get to a place where they can recover from the strain and decompress.

This is less efficient than doing so as the reservoir first begins to fill, because the higher the level in the reservoir, the more quickly the reservoir fills in response to the next sensory load event. It's not a linear thing. When I am calm (reservoir empty), I can handle a lot more without adding to the reservoir level than I can when that reservoir is half full.

Keep in mind that I use "stress" more broadly than a lot of people. Stress can have many forms, and not all of them are bad. Hearing a funny joke that makes me laugh is a kind of stress. Riding a roller coaster, which I enjoy, is pretty stressful (it adds sensory load, which fills the reservoir). The difference is that many of the eustresses (good stress) also cause a release of endorphins, which helps to keep the stress in check.

When the reservoir fills, obviously, the ability to tolerate further sensory or nervous system load is nil. Any more sensory load will cause the reservoir to overflow or burst (it's just an analogy, so you pick the image that works for you). Overload is a failure to manage nervous system load levels (a slightly more accurate way to put it than sensory load, since some of the load is from within, as with emotion).

  Sensory overload can lead to what type of meltdown?

Any type. Actually, the term I would use would be overload-- a meltdown, I think, is usually a severe tantrum with a total collapse of coping ability and frontal lobe function, which is one of several possible responses to overload. In my case, I tend to shut down, not have a tantrum. I can feel my ability to think disappear. My voice becomes more monotonic than normal, and I start talking in gibberish. People ask me things when I am in that state, and all I can say is "I
don't know." I really don't know when I am like that... I barely know my name. In that state, my brain is ignoring most of the senses, so I have a pronounced tunnel-vision effect, and I am all but unaware of sounds around me. I can't smell anything in that state.

With the frontal lobe shut down, there is not much nervous system load, so I do not usually get worse than that. I have, though, especially when I was younger. Many times in school, the teacher would notice that I was not moving, just staring straight ahead with glazed eyes. She would talk to me, and I would not even notice. She got closer and addressed me from right next to me, and I would not notice. I was offline, for the most part.

Some of my kind have a tantrum, yell, hit, or do other things when they overload. I don't tend to do that. I just zombify.

It is distinctly unpleasant to be overloaded, and it takes a lot longer to recover from an overload than it would to recover from having the reservoir 90% full. Once the reservoir gets more than, say, 75% full, you'll see some signs that overload is coming. I can feel it when I have reached that point, or when the sensory load is so great that the reservoir is filling very rapidly. To others around me, it can be seen as sharp, fast rocking and a lot of wiping of my palms down my face.