Waiting: One Person's Autistic State of Existence

“I do not feel real. I feel closeted inside. It is like I am looking outside of myself, but without access to the normal world. Am I destined to live inside with depression and hopelessness? Will I be able to come out into the light and feel like I exist? Will I ever be like others who I fanatisize were given the rules on how to exist? Will I be able to not cry myself to sleep and calm the child inside who has never been calmed? Will I ever be able to use myself in the presence of another? Please, please make me into a real person. I am literally dying inside.”

"Have I told you that I feel like I am waiting to be ‘bought-out?’ It is a funny position to be in. I feel that I cannot initiate anything because I am stuck inside and that I need to come out first before I can talk. Picture me as a lost child that is stuck inside and cannot come out of myself. I feel trapped and alone. Will someone come soon and help me out of myself out of my trapped life? I need someone to understand. I am waiting and waiting and waiting! I can no longer stand being like a wooden soldier who cannot move. Life is very unbearable and I am just barely holding on."

"I do not have a self I can use with others. I do not know this literally, but I do know I am waiting to use myself. I look out my window, the window of my soul and I yearn to be like other children. They can talk and play. I can only live within the shell of this person, waiting to be seen, rescued and understood. I am waiting to be a person. I am waiting to be like others. The waiting is interminable. It never ends. I cannot think of anything else. This dilemma is on my mind when I wake up in the morning and go to sleep at night. This nightmare consumes my ever-waking moment."

What is this autistic boy telling us? Let’s focus on what he is telling us regarding the interminable wait he is confronted with. He is talking about his state of existence and explaining it very well. His state is one of depression, hopelessness, being stuck, inability to move and waiting. He is waiting to be rescued from an unbearable existence.

From the perspective of an ‘Incomplete Attachment’ we can make sense of his state of existence. I have previously discussed the depressive and hopeless mood that comes along with not having had a completed attachment. The child cannot access parts of himself and so is left in what appears to be a static state of depression. Within that state because he does not have access to his feelings (lacks self-agency) he cannot move his body (physically and psychologically). He is stuck within this state of existence until someone on the outside realizes what is going on and helps him complete the attachment process. Thus we can say that he needs another person to help him out of this state of existence. Therefore he is destined to be in this waiting state of existence as unbearable as it is.

Using My Side Glance Instead of Direct Eye Contact

“I feel at times that I sneak at being a person. I take a 'side-glance' here and a 'side-glance' there. By using my 'side-glance,' I can sneak at what others are doing. Since I feel inside out and upside down, everything I do is indirect. I know this to be true, but I don't understand why. I have to be indirect and that is one of the rules I must live by. Looking directly at someone is wrong and I cannot do it. Every time I look into someone’s eyes (and I only do this with a 'side-glance') their eyes hurt me and stop me from moving forward. Eye contact is forbidden. This is one of the rules I have to live by. My survival depends on it.”

What is this autistic boy telling us? He feels he needs to sneak outside of himself and does this by using what he calls a side-glance and not by using direct eye contact. Looking directly at another person feels like it breaks an internal code and will stop his forward movement. The side-glance does not seem to break the rules he lives by. The side-glance probably is a safer means of existing and does not forfeit his forward movement, which seems to be compromised by the use of direct eye contact.

This autistic boy has opened up an important point regarding communication and specifically about eye contact, which has been discussed previously. He is talking here about how he has compensated for his lack of eye contact. He does not want to stop his forward movement so he has learned to still be in the world by using his side-glance. This allows him access to the world, but does not put him into a situation of feeling his forward movement will be stopped.

As mentioned previously, I discussed how the autistic person comes to use eye contact. This occurs once he has mastered claiming and talking about his feelings. He can claim his feelings and use them as part of his communication when a caregiver/therapist understands and recognizes his feelings. In a sense he will be able to give up his side-glance and use direct eye contact when he feels seen and recognized. Until he can do that he has no way to represent his feelings in relationship to others. In this case this autistic child found a way to be in the world, but not one that is familiar to most people who have had an attachment. He knows he cannot use direct eye contact so he uses what he knows which is what he calls his side-glance. The use of a side-glance probably is less anxiety producing. He can control his environment by sneaking out a side-glance and not be afraid that he will be expected to communicate in a way that he cannot literally do.

My Stomach Hurts: Autism and Gastrointestinal Problems

“It is scary to be alone inside myself. I am saving up all I know so that I will be able to tell someone who will understand. I know my constipation is due to storing up all this information. I have so much of myself inside that needs to come out. My parents as well as my doctor think of my constipation literally. He is constipated so we have to find a cause. I know better than that. They are wrong and I am right, but because I am inside I do not have the words to tell them what is really going on. Ironically, if I had the words, I would no longer be psychologically and literally constipated. When will this horror of a life be over? When will I be outside? I need you to understand my dilemma. I continue to be desperate.”

What is this autistic boy telling us? He is explaining his gastrointestinal problem as a psychological problem. He knows he is right, but unfortunately does not have the words to communicate that in such a way that people will understand him. He considers this a serious, grave and dire predicament.

Let’s understand this autistic child from the perspective of an ‘Incomplete Attachment.’ As I have mentioned previously, children with autism do not have access to the use of the word ‘I’ to explain their predicaments and communicate their feelings. This is especially true when they are in relationship to another person. In the presence of others they may lose their ability to communicate precisely what their needs are. Instead it is common for the individual with autism to act out through their nonverbal communication what is going on inside.

In the case of gastrointestinal problems I believe this is exactly what is occurring. The children are telling us for example what is going on inside of them through their bodily functioning (constipation, diarrhea, etc.). In the case of constipation the child is telling us that there is a lot of him psychologically inside. It is a very creative way to explain his predicament, but only if it can be understood. Once understood as an expression of communication, it can be treated accordingly.

Making Sense of Reversal of Pronouns in Autism

“Since I am inside out and upside down everything is reversed. Words come out backwards and incorrectly. Many times I use the word you to refer to me. It is safer to use you because I don't have to take responsibility and it is safer this way. It is not that I don't want to take responsibility, but if I don't have a personality, and I am not a person and I am without self-esteem, how can I use I. The ability to use I comes out of knowing oneself and having confidence, which is something I do not have yet. Please bear with me. I still have a long ways to go. I guess you will just have to remember that when I use you I really mean I. Also remember that I am reversed. In fact everything about me is reversed.”

What is this autistic boy telling us? He is aware that he reverses his pronouns, but cannot do anything about it. He tells us that it is safer to refer to himself by using the word you instead of me or I. He seems to not have any control over his usage of words. He also tells us that he is physically reversed and that is the reason why he reverses his pronouns.

Let’s understand this autistic boy by reviewing his experience through the lens of an Incomplete Attachment. From an Incomplete Attachment it makes sense that he believes that he lives inside of himself and that what individuals on the outside see is the reversal of what he potentially will be. From this perspective, his conscious state of existence is sequestered inside. Conversely, he is in an unconscious state when observed by others. That is why some individuals with autism can be very verbal on paper and when they type, but can also have so-called autistic behaviors that make them seem uncontrollable and bizarre to some. Another example is the individual with autism who seems oblivious to people and seems to not know that others exist. At times like that, he may literally walk over the other person or ignore him.

Furthermore, this reversal of consciousness contributes to what seems to be a reversal of pronouns. When this autistic boy reverses his pronouns he does so because in his present state of existence he does not have access to his feelings. These feelings are sequestered or dissociated, waiting to be recognized and validated through the attachment process. As he becomes more conscious and can use his self in relationship with others he will be able to claim the use of me and finally I.

"Others Actions Stop Me": Nonverbal Communication and Autism

“Have I ever told you how the actions of others stop me from talking? It is as if their hand movements, their eyes or their tone of voice stops me from talking. I find myself focusing on their behaviors and forgetting what I should say in response. It is as if their behaviors become more important than their words. For example, when my mother raises her eyebrows at the same time she raises her voice, I find I cannot move or talk. It feels like her behaviors are a sign for me to stop and I can't go beyond that. I see my sister yell back at my mother at times like that, but I can't. I see that my sister gets into trouble for responding back. Maybe my way isn't so bad, but I wonder what makes me stop and not have the ability to respond? I feel like my body just won't let me respond. At other times, when my mother is in a good mood, I see happy behaviors - her eyes twinkle, her tone of voice is mellow and soft. At times like this, I say to myself I need to capture this moment and try to fit in all my words. Don't they say ---it's all in the timing?"

What is this autistic boy telling us? He seems to be entrapped by others’ nonverbal gestures. He can see that this does not stop his sister from talking back to their mother. He wonders why it stops him. He also realizes that if his mother is in a good mood he has more of a chance in using words (if he has them).

Let’s take a moment to focus on this area of nonverbal communication. It seems that our autistic boy has no choice but to focus on the nonverbal gestures of others and in turn feels manipulated by their nonverbal gestures. The behaviors of others stop or propel him to talk. From the perspective of an Incomplete Attachment, we can possibly make sense of what is going on here.

Let’s take a step back and think about nonverbal communication and nonverbal gestures. From my point of view, the definition of nonverbal communication is the body’s way of unconsciously communicating feelings and emotions. Sometimes a typical person may not have access to his emotions so that person may not be consciously in touch with a specific feeling and thus cannot verbally express a particular feeling. Fortunately, our bodies always are in touch with our emotions and those feelings come out through our nonverbal gestures/communications. The person with autism does not have access to words, but his body retains the memory of his emotions. Thus the unconscious child with autism is tuned into nonverbal communication much more than he is tuned into verbal communication. That is why our autistic boy focuses on the nonverbal gestures of others. Typical individuals are simultaneously unconsciously and consciously aware of what others (this will depend on the individual and their level of consciousness of nonverbal gestures) are saying nonverbally. If we think of the individual with autism as unconscious, he would by definition be more attuned to nonverbal communication versus verbal communication.

Another point to remember here is that not only is our autistic boy more attuned to nonverbal communication as compared to the typical person, but he also has no way to access his feelings and subsequently communicate those feelings (lacks self-agency). Thus he is left to only focus on the nonverbal communication and feel manipulated by others’ gestures.

Finally, as this autistic boy develops, gains an attachment, has access to his feelings, develops self-agency and is less dissociated he will not only be able to read others nonverbal gestures, but also will be able to verbally express his feelings like all typical people do. Thus as the person with autism develops, we see a change in his ability to function in the world. Autism is seen on a continuum from low functioning to high functioning to Asperger’s. I think there is a good reason to look at autism in this way. The child does develop. The child can actually move off of this continuum and become as typical as others.

Checking and Keeping Things in Order

“I have to check everything before I leave the house. If I deviate from my specific process, I have to start all over again. If anyone interrupts me in the process of checking, I have to start all over again. I am afraid if I do not follow the checking rules something bad will happen. When I do not do things in order it feels like I am doing something wrong. I cannot deviate from what I think of as my order. Order makes me feel comfortable. It relaxes me. Also I am not equipped to explain myself if I am going out of order. I do not have a way to defend myself. Order is my way of knowing what to expect and to know what comes first, second, etc. I cannot use myself so how can I explain if things get out of order?”

What is this autistic boy telling us? He checks and keeps everything in order and cannot deviate from his process. This reminds me of another autistic boy who would line up letters of the alphabet. If I took a letter and put it in the wrong place he would immediately change it back to its proper place. Both these boys are telling us that keeping things in order and checking helps to keep them calm and relaxed. They are self-regulating. They are both very fearful if things are out of order and not in their proper place. This autistic boy is very aware that he does not know how to express his concerns about order. He is obsessed with this need for sameness and order.

Checking and order seem to provide, as this autistic boy told us, a way to calm himself down and to regulate himself. Infants learn to self-regulate through the mutual regulation that takes place between mother and child during the attachment process. The child with autism has an incomplete attachment so can only rely on himself for methods to self-regulate. Each child with autism will find his own methods to self-regulate. As the child completes the attachment process, he will learn other methods to self-regulate through the interaction with a caregiver or a therapist. As this occurs, he will start to feel less anxious and will be able to give up coping strategies that were developed to manage his anxiety and stress.

I also think that other things are going on that we might speculate about. From the perspective of an Incomplete Attachment this child is trying to keep things in order because 1) he feels no order from within. In other words, he lives with a chaotic internal world, which is dissociated and does not allow him to have access to his words (lacks self-agency), 2) if he had access to his words then he could live without fear and 3) be able to respond to spontaneous situations and allow things to be out of order. Spontaneity from this perspective comes out of being sure of oneself which comes out of the ability to have access to ones feelings and to express those feelings freely.

This autistic boy may be checking for multiple reasons: 1) it provides as mentioned previously a way to feel calm relaxed and self-regulated and 2) from the perspective of an Incomplete Attachment, the autistic child is dissociated and can never be sure of ‘what has just happened’. He is never sure that what he has just experienced has really happened. He has no way of ‘testing reality’ by asking questions especially if he is low functioning. Thus he is left to his own devices to try to figure out what is going on. In a dissociated state, nothing feels stable and the child cannot be sure of what is happening at any point in time. Thus the checking is his way of making sure that everything is stable and that what he really saw did actually happen.