Thursday, September 24, 2009

The Forgotten Child

Scarier than anything else is the feeling that I can’t cry, can’t feel, can’t talk. Tears don’t come out of my eyes, never, ever. I hear others talk about feelings. They say, “I love you, I hate you, I hurt.” I don’t feel. Where are my feelings? God must have forgotten about me. “Dear God, why did you forget about me?” I am a lost child. I feel like God forgot to make me into a person. I say to myself, “I must have done something wrong. I was left out.” Forgotten – a forgotten child who must fend for himself.

Let’s make sense out of this autistic child’s experience. We can only speculate about what is going on within him. This child appears to be very aware of his predicament. He can see that others function differently than him, but he cannot seem to do anything about it. He knows he cannot express feelings and thus tries to make sense of his own experience. He believes he was not made into a person like other people and that God must have forgotten about him. It makes sense that he would make up a story or what I call a “narrative” to explain his state of existence. In his story to himself he blames himself for his predicament. He goes on to tell us that he feels forgotten. In that last sentence he seems to have made up his mind that he will remain forgotten and must handle “life” in his own way.

The story he tells us may leave us feeling sad and hopeless for him. I believe that each person with an Autism Spectrum Disorder (ASD) comes up with his or her own story about himself or herself. This is not unique to people with ASD. All human beings have their own narratives based on their experiences. As a therapist, I am always helping clients to understand and refine their own narratives. People with ASD would also benefit from this refinement and understanding of their own “stories.”

How might we help our child with ASD understand and refine his story? The answer depends on the age of the child and his functioning level. It also depends on your perceptions of Autism Spectrum Disorders. From my perspective, I believe the child lacks an attachment, has varying degrees of self-agency (depending on his functioning level) and goes in and out of states of dissociation. From that perspective, I feel there is hope for the child even though he may not feel that hope. In fact, I believe I need to hold onto the hope he may not be able to feel.

Thus in this case, I would work with the child to 1) help him understand that he did not cause the ASD, 2) that there is hope for him even though he may not be able to feel that hope, 3) that he does have feelings, but that they are not available to him now, but that does not mean they will not be available to him at a later date, 3) the work we do together will help him to access those feelings that seem to be missing, 4) he is not alone with this predicament and 5) together we will work to make his life easier.

The point to remember is that our own perspective of the child and autism will influence the child’s story about himself and his ultimate ability to grow and develop. Even if we say nothing, the child will pick up through our nonverbal communication and tone of voice how we feel about him and his predicament. Thus it becomes critical to become aware of our own perceptions about our children and about Autism Spectrum Disorders.

Thursday, September 17, 2009

Living Without Boundaries-the Autistic Experience

God, I reach out and I cannot feel myself in time and space. It is as if I am floating in air without any boundaries. It feels like I am in a state of never-ending hell like living in a black hole with no exit. I want to scream, but I cannot talk, I cannot move my mouth, I cannot tell anyone of my dilemma. This hell has become my secret and my secret alone. God, you share my secret. Will I ever find a way out of this hell? God, I am screaming. I am screaming without words. God, these are loud screams, but silent screams. Do you hear me God? Do you hear me?

This is one autistic boy’s communication of a boundary-less existence. This child is talking about what it is like to not be able to place himself into “time and space.” He seems to also feel like he is floating in space with nothing solid below or around him to hold onto. He seems suspended in an existence without any means to communicate his predicament. What does he mean by these comments? I believe he is saying, “I do not feel like I exist. Time and space have no meaning for me. I live in a ‘psychological’ world with no anchors and continuity of being (internal stability). I am terrified by this state of existence.”

It is important to take this autistic boy seriously. He is telling us how he exists. The first step to helping him feel that he has boundaries and to feel ‘alive’ is to believe in his state of existence. An autistic individual’s development is based on how well we can understand his predicament. The better we can understand him, the more he has a chance to exist like any “typical” person. Many people work with autistic individuals by trying to change the child’s behavior. I believe the work needs to be exactly the opposite. We need to change how we understand and treat the autistic person. When we emphasize their need to change than they may never feel validated and are left in a boundary-less existence. In essence when we want him to change we are in fact saying “there is something wrong with you which we do not like.” I do not think this is the message that we want to be sending. I believe that autistic people have a hard time ‘existing’ because people are always reflecting back to them a message that does not reflect how they feel. Thus it is not the autistic person that needs to change, but it is how we understand their predicament that needs to change.

Thursday, September 10, 2009

Helping the Autistic Child Develop a Sense of Agency

God, I feel like I have no mind to use with others. I know I have a mind. It thinks. It sees. It reads. But this mind is different than others. This mind disappears in the presence of others. Others’ minds are the boss of my mind. I am at the whim of everyone. I feel like a ball being tossed from one person to another. I am controlled by whomever I am in front of. It is as if the “other” controls me. I lose myself in the “others” presence. Myself, my mind, does not work with an “other.” It stops and goes blank. It is scary to not have a mind that I can use. It is like others stop me from existing. God, they have the control and I must adhere to their existence. They have not been left out. They are people. They have a personality. I do not have a personality. God, why did you leave me out?

This is one autistic person's experience. What is he saying? From my point of view, he is saying, “I do not have control over my body. My body does not work for me like others.” He is also telling us that he can tell the difference between his experience and those of ‘typical’ people. He is explaining to us what it is like to not have a sense of agency. Self-agency is the ability of the self to take initiative, to regulate oneself and to be the source of one’s behavior. The person with autism does not have that ability. He cannot literally control his behavior and his actions. It is not that he wants to be this way, but when one does not have a sense of agency that is his predicament.

He is also telling us that the very presence of another makes him feel that he does not exist. He seems to lose his ability to communicate and thus cannot let us know what is on his mind. And finally he is telling us how scary it is to live this way – no control over his body, no control over going blank and no control over feeling as if he does not exist.

What can we do about his lack of self-agency? 1) We can incorporate within our own belief system that the autistic child does not have control over his body and that he lacks self-agency, 2) we can let him know that we understand that he lacks this control over his body, 3) we can adopt a belief that we need to recognize, validate and understand him, 4) we can adopt a belief that a sense of agency is developed in relationship to another person, 5) we can understand that agency is acquired in the process of interacting with another person, 6) we can understand that the kind of interaction the child with autism needs is our understanding of what he is trying to communicate through his bodily behaviors, 7) Our goal is to not have him compliantly adapt to us. This kind of adaptation to another makes him into a ‘robot’. Instead it is through our understanding, validation and recognition that he can start to see himself and then ‘use’ himself with us, and 8) He needs to see and feel that there is ‘space’ for him in the relationship. This means that he is a partner in the communication with us. Along with giving him space, it is important that he can feel that he has an impact on us. We need to allow him to influence our behavior and thinking. This is accomplished by letting him make some of his own decisions and by letting him sway or change our thinking. By setting his own agenda he can start to feel his power and his agency. In turn, we need to communicate back to him a confirming response

Thursday, September 3, 2009

Relational Therapy and an Incomplete Attachment: A New Look at the Etiology and Treatment of Autism Spectrum Disorders - Glossary of Terms

In introducing a new theory of autism, it is important that everyone have a glossary of terms that can be referred to that explains the terminology I use in my writings. This glossary is a ‘work in progress’ that will be tweaked as I receive feedback about how helpful it is.

1. Incomplete Attachment (also referred to as a lack of attachment) - the belief that children on the spectrum have not had the advantage of a completed attachment. Thus during the attachment period of life (birth – three years old) the child has not attached to the caregivers. There are probably many reasons why this has not occurred. It is not the fault of anyone. It is my belief that what one sees when observing children on the spectrum is a child who is waiting for the attachment process to be completed. The child is doing the best he/she can to cope with this predicament. All the behaviors such as flapping arms, nonverbal communication, echolalia, lack of responsiveness to others or inability to communicate one’s needs are coping mechanisms that can make sense when taken from this perspective.
2. Sense of Self-Agency – is the ability of the self to take initiative, to regulate oneself and to be the source of one’s behavior. A sense of self-agency is developed within a relationship with another person. The autistic person has an incomplete attachment thus does not have the advantage of self-agency. The functioning levels of those with ASD correspond with the degree of self-agency the individual has. The lower functioning individual has very little self-agency and thus is nonverbal or can only use echolalia. As the individual gains more self-agency we start to see the use of words such as “me” and “I” as well as more interactive behaviors. Then we start to call the person high functioning.
3. Dissociation – Parts of the self are not conscious to or available to the person to use in their communications with others. It is the state that the ASD individual lives. Bromberg (1994) believes all individuals begin life made up of multiple self-states. Our wholeness develops through a relationship with another person. * Because the autistic person lacks an attachment, he remains in a non-whole state. Thus the individual has different parts of himself that have not integrated. What does dissociation look like: 1) the person who is talking about one thing and then switches to another topic very dramatically, 2) the person who cannot talk about feelings, but can talk about an obscure topic, 3) the person who has a special ability such as remembering dates, but cannot attend to the topic at hand.

* For more information see: Bromberg, P. M. (1994), “Speak! That I May See You” Some Reflections on Dissociation, Reality, and Psychoanalytic Listening. Psychoanalytic Dialogues, 4 (4): 517-547.