From Autism and Mutism to an Enlivened Self

A Case Narrative with Reflections on Early Development

Joseph D. Lichtenberg, Diana Thielst

• Publisher: Routledge
• Year: 2018
• Print ISBN: 9781138362000
• eBook ISBN: 9780429778735
• Topic: Psicologia
• Subtopic: Disturbi dello spettro autistico

From Autism and Mutism to an Enlivened Self explores the importance of intimacy, interaction with the environment and the mind-body connection in early childhood development, with specific reference to autism. Built around a detailed case study of a severely autistic child, the book offers an illuminating account of the development and successful treatment of autism both from the perspective of the clinician and from the family.

In Part I, Diana Thielst (writing under a pseudonym) gives a description of her experience with her daughter who was autistic at birth, minimally verbal at age five, and did not respond to her name. She details the severe family stress and her ineffectual attempts to get professional help. Finally, she hears of consultants who may be able to help in St. Petersburg, Russia. Guided by the consultants, Thielst and her daughter then embark on a uniquely innovative method for Anna to both build a vocabulary and for the first time learn the value of coordinated and cooperative effort. Armed with a vocabulary and a long history of solo pursuits of organizing inanimate objects, Anna suddenly begins to explore "human" interaction as revealed in comics– a turning on to an emotional life of relatedness and intimacy.

In Part II, Joseph D. Lichtenberg uses his knowledge of neonate and early infancy to offer the reader an understanding of autism – its history – and a unique comparison of the normal well adapted neonate and infant at one year with the disrupted development of the child with autism. Lichtenberg's theoretical construct of three major pathways to a healthy adapted development breaks new theoretical ground and gives enrichment to a contemporary portrayal of the autistic experience.

With unusually rich clinical material grounded in accessible theory, the authors jointly offer a new perspective on understanding, treating and living with autism. From Autism and Mutism to an Enlivened Self will appeal to psychoanalysts, psychoanalytic psychotherapists and clinicians working with autistic children.

Part I

Anna

Chapter 1

From missing relationship at birth to missing name and language at age five

Birth

It is the third day after birth. Highly complicated birth. Finally, we meet. A nurse hands her to me. Mentions something about the redness from forceps all across left cheek. Says not to worry – that it will disappear soon. Everything will be fine in just no time. She has very good weight, has recovered during these days apart from me and is now ready to meet with me. I am really not worried about her cheek. But I am worried. Worried about the trauma at birth. About the lack of oxygen. About the Apgar score of 4. Forceps. I somehow know deep inside that serious difficulties lie ahead. I feel it. I can think of cerebral palsy, epilepsy, all the developmental conditions I have learned in medical school – in a month I am going to be awarded a medical degree. For the majority of the medical students, both female and male, getting married and having their first child during the last couple of years of studies has been a norm for decades. It has been of particular significance for female medical students since it has been found much easier to give birth during the last couple of years of the six-year medical program than during any other time after the graduation. As a practicing doctor, the responsibilities and decision making for patient care on a daily basis could seriously interfere with the demands of pregnancy, birth, and the postpartum period. Being a medical student or a young doctor in a country with a high rate of female doctors, in a society where female doctors have been dominating the medical field for decades, means that getting married and having the first child at the same age as others outside the medical field – before the age of 25 – has been seen not just as being a normal part of the human experience, but encouraged by the medical faculty itself. So, here I am, meeting my first child while getting ready to take the Hippocratic oath in less than two months where I will swear “I will use treatment to help the sick according to my ability and judgment” and “May I long experience the joy of healing those who seek my help.”

I take her to my chest. She starts crying. Does not stop. Screaming. With such a force. The nurse tries to help to soothe her, to adjust her on my breast. She just cries and cries. Finally, the nurse brings a bottle to her and starts to feed her while holding her. The whole situation changes in a fraction of a second. She immediately grasps the nipple of the bottle and starts to suck. Very actively. Suddenly, everything seems to normalize for her when the bottle is in the picture. She wants a bottle, not me. It feels that she seems not to recognize me. Not to know me at all. I feel guilty. This is our first meeting. And it feels like we are strangers. I believe that the trauma experience at birth has damaged not just both of us physically, but also the bond between us. The very same bond we were supposed to have been granted from nature.

First year

During the next months, and I don’t know it yet but actually it’s for years, nothing really changes regarding the relationship between us. It truly remains similar as it was during our first meeting. She refuses breastfeeding forever. Screams so loud. Wants a bottle instead. Bottle feeding has an immediate soothing effect on her. Nothing or nobody seems to be able to change this.

Then it becomes apparent that she doesn’t want to be held either. Always prefers to be put down. Screams, arches her back. Calms down immediately when put down into her crib. Then I realize that she avoids looking at my face (or anybody else’s face) – she looks always at something else – bottle, or toys. I realize I am more like an object for her, an object that gives her something so she can enjoy herself together with that object. She is a very beautiful baby. For many people she seems so brave, always knowing what she wants. And what she wants is always something, not someone. She doesn’t seem to miss me when I leave, and is always busy with something when I return. Other people tend not to notice what I know from the beginning – she actually doesn’t relate to me or anyone else.

However, the primary worry during the first months is that her motor development is seriously lagging. When at two months I take her to be evaluated by a child neurologist, she is unable to hold her head when lifted up. The lack of social smile is not even considered a primary issue when her motor development is not happening. Her general muscle tone is so weak. She doesn’t respond with her body in any way when her position is changed. However, this “lagging motor development” seems not to affect all her motor actions like the sucking of a bottle or crying – these are strong, loud, and purposeful. She knows when she wants to eat and demands it very actively. Also, she is very vocal about her diaper change and demands it immediately and very loudly wherever we are. Her demands about her physical wellbeing are strong and seem not to correlate with her “weak muscle tone” in other situations like holding her head up when she should. When her needs for food, drink, diaper change are met, she seems happy in her crib or in her stroller. She sleeps generally well, gains weight as expected. Likes baths. Just trying to hold her is a problem – she typically cries with a very loud voice for a long time and doesn’t stop before she is put down. Holding her has no soothing effect, it is not a way to stop her crying.

We begin with an intensive physical therapy program that includes movements, massages, swimming. As a result, she improves physically and catches up with other children her age. By six months, she is sitting up by herself. Standing at seven months and walking before her first birthday. Surprisingly rocking left to right in her crib when able to stand already. Rocking rhythmically and vocalizing with matched rhythm and beat: “aa – aah aa-aah.” Looks like singing and dancing. But no social smile or eye contact, no reacting to her name, no first meaningful word yet. Reciprocity has not developed in parallel with her motor development. Despite having been surrounded by many family members in addition to me: her father, grandparents, uncles and an older very warm and attentive nanny, her behavior has been the same with everyone.

12 months

Around her first birthday, she seems a generally well-developed child. Her motor development is good. Walking, running. Active. I want to believe that the developmental issues are behind us. But deep inside I know that something is still very wrong. When she fails to react to her name at a time when other children do, I am not surprised. Others tend to think that she just doesn’t want to respond since she is busy. This is how it looks. But I sense something more – that she doesn’t know that she has a name. It seems to me that she doesn’t know that she can be called by her name, or that she is expected to respond to it. Her name seems to have no significance for her. Like looking into people’s eyes seems to mean nothing for her.

It is more than just not knowing her name or not making eye contact. She seems not to know that people relate to each other, that they share their feelings, and that they communicate with each other. She is so active all by herself and seems not to need anyone. Clearly, just calling her more often or more loudly doesn’t do anything to catch her attention or make her want to join me or anyone else doing anything together. She is always too busy with something. Something so much more important to her. The most puzzling is that despite her lack of reciprocity in emotional interaction with me, when she is playing with her toys she seems to be an active well-developed typical child. She is vocalizing a lot using various pitches. It sounds like music. My mother keeps telling me that she is going to talk very soon. This is her feeling when she is observing her running around with toys in her hand and entertaining herself. Most people who know her see only the latter side of her. I am trying to express my concern, but I am told by many that mothers tend to see all kinds of problems in their children that in reality don’t exist. That this is just mother’s exaggerated worry that I am showing. I don’t know what is wrong, but I do know that something is definitely wrong. And I don’t know what to do about it. But I am on alert.

At 18 months she enters preschool. Generally, she looks like most other children in their development, except that when she is dropped off, she doesn’t cry or miss me. I am told during the first days that she is doing very well – she is not crying and she is active by herself. That she is walking around trying to get food from the table before the actual mealtime begins when other children are still playing with toys. The preschool has the best early childhood educators. All with master’s degrees. The best environment – an extraordinary building designed and built specifically for preschool. A lot of room, natural light, educational toys, speech stimulation, potty training, story times, singing, dancing, playing inside and outside. The best food from their own kitchen cooked freshly three times each day and served at a communal table using porcelain china. Eating being a part of education where children so early learn how to behave at the table. Sleeping in specially built wooden beds. Educators talk with each parent when they come to pick their children up around 4:30 p.m. each day. They talk about how each child has been that day. They talk about how to continue developing speech, empathy, potty training – all they did during the day – at home.

24 months

Her second birthday. Six months in preschool and no meaningful vocabulary yet. She is actively babbling by herself when running around and being constantly busy. I am trying to speak to her. The other family members do too. The preschool teachers do – where she is from 8:30 a.m. to 4:30 p.m. each weekday. The teachers start telling me that she has not said any words yet, in contrast to other children whose speech is already clearly developing. It feels that they seem even guilty that they have been not able to get her to start speaking. Also, they keep telling me that she doesn’t sleep during the day like other children do. That they have to keep her from waking up other children who all do sleep.

Remarkably, despite her active babbling with high pitched voice and various rhythmic variations, her vocalizations have not turned to any meaningful communications. These seem to be directed just for herself. Like rocking from one leg to another looks like she is entertaining herself. There seems to be no difference who takes care of her – she is the same under everybody’s care. Her behavior begins to clearly differ from other children. The normalization of her physical development – muscle tone, walking, running – has not led to improvements in her ways interacting with others. In some ways she is so advanced compared to others – fully potty-trained without any problem, eating and dressing by herself. Even doesn’t need to sleep during the day like other children do. But when others are interacting with each other when they play, she has her own play without a need to look into anyone’s eyes or interact in any way. When other children like their parents to help them get dressed when they are picked up, then she seems so advanced that she does it mostly by herself. At home, she goes to the refrigerator to eat by herself without making any attempt to ask for food when she is hungry. She is clearly very aware of her physical needs. But she seems to avoid being touched so much that she prefers to learn complicated motor actions so she doesn’t have to depend on me or anyone else. She begins to look more and more alone compared with others who relate to each other. She is always busy with herself. Never coming to me or anybody else for any reason, always running away instead. When picking her up, and trying to hold her, she quickly finds a way to slide herself out of it. We are still trying to stimulate more, and wait for speech to suddenly appear.

30 months

The first visit to a speech therapist

I cannot wait any longer. I am making a decision, despite everyone else’s waiting for her to suddenly speak. I want her to be evaluated and treated. I want to learn how to teach spoken language to her – to a child whose language clearly is not developing in a natural way. I want theory and guidelines. I expect to get all the knowledge of how it is done in a case like hers. I expect to get information about the books, workbooks, developmental toys, exercises. I need a full program. So that I can start immediately. I know somehow that I am the one who is supposed to teach language to her, not a speech therapist or educator. I even cannot imagine that someone else can teach language to her at this point. It certainly cannot happen during the speech therapy sessions a couple of hours per week. She is not interested in interacting with a speech therapist. Or an educator. Or me. I somehow realize that language can develop only through a relationship. Through that which is missing. So, I want to learn how to create this relationship, so that the beginning of language learning can take place. I am somehow convinced that it can be guided by a speech therapist, but actual work has to be done by me, the closest person to her. We have had a relationship before birth at least. How to get back to what I believe had been lost during the traumatic birth.

I make an appointment with a speech therapist specializing in children. Recommended by a child neurologist. I have high expectations. I need help from a language specialist, who knows everything about language development. I just need to have an appointment to get started. Ready to listen to what, where and how. Ready to work with her as long as necessary. So that we can overcome whatever we are facing here.

We enter the office. She is very friendly. Makes a great connection. With me. Talks – to me. Tries to get the attention of my daughter, who is running around. Tries again. Many times. It does not happen. She interprets it as just being in an unfamiliar situation. She seems to feel somewhat uneasy that she is not able to catch her attention. I say that it is always like that – with me, too. This information seems to mean nothing. She instructs me just to talk to her, show picture books to her, talk about what is happening in the picture. She is going to listen and start learning language and then talk. This is how it’s done. This is how language develops. Through talking to a child. And verbalizing what is happening in the picture.

Some children start to talk later she says. I seem to know better already. I know that her language has not been developing. That is why I am here with her. I came to see her not for hope, but for guidance in the area that is not my specialty. My expectation for this consultation was to learn how language can be developed when it does not happen in a natural way. I came to learn about speech therapy “technique” that I thought existed, and apply it to everyday life for her. What I had not realized was that there was no speech therapy “technique” without preexisting speech and preexisting relationship.

We leave. Without a program, books, workbooks. Just with a recommendation to talk, talk, talk. But nothing really changes. For the next three years. Despite numerous visits to all kinds of specialists. And attempts to talk.

For the next six months everything stays very much the same. She shows no interest in looking at pictures in a picture book whether by herself or together with me as the speech therapist suggested, and no interest in paying attention to the description of pictures. She has been avoiding anyone’s physical proximity, how is it even possible to make her sit with someone and look peacefully at the pictures in a picture book that she has no interest in? How can her language start developing in a setting where all components to make it happen – enjoyment of close physical proximity, sharing of emotions, content that is interesting to her – are missing?

She still doesn’t respond to her name. Her expressive speech is limited to a few single word approximations, no attempts to combine these into phrases or sentences. No interest in doing anything together. What she keeps doing is being active by herself, running around and babbling. Like before. She does not stop her activities in order to talk or share in any other way what she has been doing or plans to do. However, she may pause her left-to-right rocking in order to vocalize rhythmically organized simple sound patterns for her own amusement. She seems to avoid any attempts to communicate with me – eye contact, physical contact, emotional contact. I don’t know whether she is happy or not. I can only guess – she doesn’t look sad for sure. She seems pleased with herself, focused on her own undertakings.

“Look into my eyes” – I keep telling her. Some people feel offended that she doesn’t look into their eyes when they talk to her. Like she is disrespecting them. Why doesn’t she look into anybody’s eyes? I am holding her and making her look into my eyes. “Repeat the word” I say. She may even say that word after intense attempts. She may even know that this word means that particular object. And then she seems to do everything in her power not to say it again. Or say any other previously “learned” word again. These words that in other children develop into phrases and sentences keep disappearing as if they never existed. For her, words seem to be meaningless. The only clear communication seems to be running away from communicative attempts. Does she store any words in her memory at all? I am worried, but many of my close family feel just offended by her and begin to look at her as a “spoiled child” who is allowed to do everything, and who has therefore failed to learn to behave appropriately.

Getting no help from a speech therapist, and feeling guilty about her behavior, I realize how lonely I am. There is something I cannot communicate to anyone. That I am primarily worried about something that nobody else is worried about – the missing relationship. The bond that is supposed to always exist between a mother and a child. A continuous feeling between a parent and a child that they belong together. Always. That they light each other up with joy over and over again every single day. A feeling that I as a parent am the one she would reach out to when sad or insecure. That back and forth and simultaneous mimicking each other’s actions that are so natural in a parent–child relationship. The reciprocity in our relationship is missing. We may have only minimal back and forth communication if at all. Emotionally, it would be much easier for me to go along with everybody else and pretend otherwise. So, it is really painful for me to be honest with myself and acknowledge it, but it is impossible for me not to notice it – it’s like the continuous awareness, feeling, nonverbal communication that exists between musicians when they play together – a feeling I know so well since early childhood performing in various music ensembles. This is what is lacking. Her lack of language and unusual behavior seem to be a result of a lack of emotional connection. She regulates her emotions with her rocking and running around, not through me helping her. Without acknowledging the lacking relationship with others – the most basic issue in any child’s development – I cannot see how anything can be done about it, how any intervention can be truly successful. I know already that just talking to her is not going to lead to speech development. That just talking to her is not going to create that bond. The bond is not about language but about feelings. How can I force her to look at my face, miss me when I am not there, react with pleasure when I come? How can I make her understand that she has a name? To make her want to say a meaningful word instead of vocalizing utterances mostly for herself? I don’t recall anything like this from my medical studies. I don’t recognize the syndrome. I cannot explain it from the viewpoint of the functional anatomy of brain, including Broca and Wernicke areas that are responsible for both understanding speech and motor aspects of speaking. I cannot explain it just from what is known about the role of hearing in speech development. What she has is larger than that. What is...

Table of contents

• Cover Page
• Half Title
• Series Page
• Title Page
• Copyright Page
• Table of Contents
• Introduction
• Part I Anna
• Part II Commentary on two remarkable journeys: one therapeutic for Dr. Diana Thielst and Anna; and one of discovery for psychiatry and psychoanalysis
• References
• Index