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.

"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.

Feeling Alive

“I am eight years old. When I get scared I go into the bathroom. I take off all my clothes and lay on the bathroom floor. Does anyone see me? Can you feel me? I fantasize that I am alive, and being touched all over. I close my eyes and touch myself all over as if someone else is doing it. I feel alive when I do this. I wish someone else would do this. Consume me and make me feel alive. I want to be examined from head to foot. Examined as if I am important.”

What is this autistic boy telling us? It seems that he does not feel alive. It is hard to know exactly what he means by being alive. By speculating, it seems he feels he can make himself feel alive if he actually does what he wants someone else to do – touch him. He seems to be acting out his need to be touched and seen. He seems to be telling us that he wants to be known and that he wants every orifice to be touched and seen.

Every human being needs to be seen, recognized and ultimately touched by another human being. This child has missed out on this opportunity and is thus acting out his need for this psychological touching. It may seem strange that a young child would go to great lengths by acting out his needs through his behaviors. For autistic children this is the norm and must be understood for what it is and what he means through his behavior.

Most typical children can use words to express their needs. Autistic children cannot use words and thus must rely on their bodies to express their needs. We can also say that typical children have had an attachment. It is through an attachment that the child learns how to regulate himself through the mutual regulation process between caregiver/s and infant. During the attachment process we also come to understand ourselves by how our caregivers’ understand, accept, validate and recognize us. The caregivers help the child to symbolize his experiences. Unfortunately, the autistic child has not had the benefit of an attachment to a caregiver and thus is waiting for the attachment process to be completed. It can be said that he has an Incomplete Attachment.

It is also important to note, that all typically developing as well as autistic children have varying degrees of what I call self-agency. Self-agency is the ability to use oneself in relationship to others. In the lowest functioning autistic child he has no self-agency and thus has no words or is echolalic. The higher functioning the child (typical or autistic) the more self-agency he has. The autistic child will always use his body as a substitute for his lack of self-agency. Thus what he tells us through his body is very important for us to understand.

One more key idea is important to cite here. Autistic children when communicating with their bodies are talking about their psychological needs and not necessarily their daily needs. The typically developing child will express the desire to have a cookie, drink some milk, etc. Of course the autistic child has those needs as well, but he uses his body to express much deeper psychological needs such as our autistic boy in this blog. Through his body (unconsciously) and what may seem strange to some, he is telling us he has a deep need to be touched and seen. We can assume that these needs have not yet been met.

Eye ‘I’ Contact and Autism

“Sometimes I practice looking at someone directly to see what it feels like. If I practice long enough maybe it will feel okay to do. I notice that this is important, but it goes against my rules. If somebody made me look at him in the eye, I would probably do it, but you better believe that I would hate him. I will look someone in the eye when I am ready and do it in my own time and space. If someone is trying to fix himself that part is just not ready yet. Have you figured out that I am very stubborn? It's not that I like being stubborn, but I need to protect myself.”

Let’s make sense out of this autistic child’s experience. We can only infer what is going on within him. He seems to be telling us that eye contact does not come naturally to him. He also might be saying, “leave me alone and do not force me to use eye contact.” If he is forced, he is saying he will resent that person’s interference. Finally he is telling us he is trying to fix his situation and does not want to be intruded upon by others.

What do we do about this child’s lack of eye contact? This is a quandary for us because as ‘typical’ people we know that when good communication is taking place eye contact is direct and focused on the other person. With the person with Autism Spectrum Disorder (ASD), this is not the case. In fact it appears to be just the opposite. The urgency is to want the person with ASD to be in the world and be like us. This may cause us to force or demand the child to use eye contact. I believe this is putting the ‘cart before the horse.’

As we know people with ASD struggle with communication and relationships with others. Eye contact stands out as a nonverbal gesture that feels troublesome for those who work with or have children with autism. I believe that the child will start to use eye contact when he is ready. Thus we need to be patient and let it happen in the normal course of the child’s development.

Some thoughts to think about regarding eye contact: 1) the child is not deliberately being difficult by not using eye contact, 2) his body will not let him use eye contact or let him use his bodily gestures as we might be familiar with, 3) this does not mean that the lack of eye contact cannot change over time, 4) as the child develops his ability to communicate verbally, his use of direct eye contact will develop as well, 5) in fact it might be the last nonverbal gesture he will be able to conquer. This will vary from child to child, 6) eye contact is a nonverbal (gesture) communication from the unconscious of a person, 7) when communication is good we say that the person is congruent. Their verbal communication is complimented by their nonverbal gestures (eye contact being only one of many nonverbal gestures). This means that the person will use direct eye contact when he feels more comfortable with his verbal communication and his relationships with others. Eye contact demonstrates the individual’s confidence and self-esteem, and finally 8) a way to think about eye contact is that the child will use ‘eye’ contact when he can use ‘I’ contact.

Autism and Communication

Getting one’s needs met and to exist happily in one’s family, community and beyond is dependent on the ability to communicate. As non-autistic individuals we can use ourselves to communicate our needs and express our feelings. The autistic individual depending on their functioning level, has anywhere from extremely limited (nonexistent in some) to some ability to ask for their needs to be met. Some people with autism seem to communicate by perseverating on a topic that seems to not relate at all to whatever the topic might be. For example, one child may become fixated on televisions and only be able to talk about this subject, no matter what else is being discussed. It is not unusual for autistic individuals to seem to come out of "left field" with what they might say. For example, the topic may be "going to the grocery store and what will be bought at the store." The child may say, “you are pretty.”

There are also individuals who are nonverbal, those who use echolalia and still others that can only express their needs by reversing their pronouns. When they want a cookie to eat, instead of saying “I want a cookie,” the child may say, “you want a cookie.”

Let’s make sense of what is going on. If as I am suggesting the child has not had the benefit of an attachment, lacks the ability to use him/herself in relationship to others and is also in a state of dissociation with varying degrees of consciousness then I would continue to propose that the child’s ability to communicate is going to be compromised. Let me explain how these different elements contribute to not only problems in communicating, but also relating to others.

It is important to remember that the autistic individual wants to communicate and in fact is always communicating about himself even though he may be nonverbal, echolalic or reversing pronouns. He is like any human being in that he has a need to communicate. Unfortunately, because he has had an incomplete attachment, he cannot identify his feelings, which are dissociated, and therefore cannot use those feelings to express his needs. In other words, he has not developed to a level where he has self-agency. This means he literally cannot ask for anything for his own benefit. This is not a physical problem, but instead a “developmental problem” that can change over time.

It is my opinion, that what one sees with the nonverbal autistic child is the reverse of what one sees with a “typical” child. I call this phenomenon “Inside out, upside down.” In other words, the unconscious part of the child is on the outside and the conscious part is in the inside. That is why some nonverbal autistic children seem out of control and low functioning, but with the use of a computer can communicate beautifully in writing. This is a very good example of the split or dissociation of the self. Most people are unfamiliar with seeing the ‘unconscious.’ Because most people are unfamiliar with the workings of the unconscious, autistic individuals are constantly misunderstood.

The phenomenon of echolalia is also something that can be understood. One first needs to remember that the autistic child has minimal and varying (depending on their functioning level) ability to use oneself in relationship to others. Also it is important to remember that a lack of attachment precludes one from being able to use one’s self. Thus echolalia is the result of not being able to use one’s self. The child only has access to what they hear. They may hear “do you want a cookie?” Developmentally all the child can do is mimic the other person. There is no awareness and ability to use the self in response to the other. Thus the end result is a repetition of what the child heard.

The child who reverses his pronouns and uses ‘you’ to mean ‘I’ is beginning to use his self with others. The child uses ‘you’ because it is safer than ‘me or I.’ The autistic child does not feel safe in the world. Everything is confusing, awkward and anxiety producing. The use of ‘you’ as it refers to the self is another example of dissociation. As I mentioned before the child is split. As the child develops and he becomes less split and gains more agency, he will then move to using the pronoun ‘me’ and finally as he has more and more access to himself, he will be able to use ‘I.’ There seems to be a direct correlation to the use of ‘I’ and ability to know and access feelings and use them in relationship to others.

Now lets look at why the communication of autistic individuals appears inappropriate. First of all, I believe that an autistic individual is always communicating his state of existence. Unfortunately, most perceive these communications from their own experience, which includes having completed the attachment process. In working with autistic individuals, many try to extinguish the “odd” behaviors of the child. In doing so, we are not understanding the message the child is trying to communicate through his strange behaviors. We in a sense are helping them feel misunderstood versus understood and not seen versus seen. Instead these communications need to be understood within the context of a child who has never attached and cannot use the self to communicate. Every behavior that the child uses can be understood and must be understood so that the child can gain understanding and recognition, which are precursors to being able to attach. Our work with the autistic person is to understand, validate, accept and recognize the autistic person. If the caregiver or professional can recognize and see the child, then the child can start to see him or herself.

Examples may help you to understand what I am communicating. I visited a three-year-old nonverbal boy, who had never seemed to play appropriately with his toys. In observing him, I noticed he was picking his lips. Instead of telling him not to pick his lips, I said, “you are telling me that something is going on around your lips and your inability to talk.” He looked at me and then played appropriately with a toy. Another example will help to highlight this point. I worked with another boy who liked to watch videos. He had certain ones he wanted to make sure I saw. One day, he showed me a video, which explained a complicated family dynamic. I interpreted the dynamic as it related to his family. As I was able to do that, he could begin to talk about his own personal experience. These are examples of how one interprets and uses projection with autistic individuals to gain access to their feelings (I will discuss how this is done in another blog).

In concluding this blog, I want to restate that the perseverations, the out of context communications, the use of pronoun reversal, echolalia, nonverbal communication, to name only a few, can be understood through the lens of an “Incomplete Attachment” which leaves the individual in a state waiting for the completed attachment and without access to self or what I call self-agency.