The Missing Ingredient in Intervention
In recent years, there’s been a welcome turnaround in the reporting on autism. In contrast to the bleak picture that has so often been center stage, the media has been reporting on the many individuals on the spectrum who display high level, often brilliant, skills in areas such as math, science, engineering, and music. This development is phenomenal. It shows both families and the society at large how much people with autism can achieve.
At the same time, we cannot dismiss the bleak picture. For many, if not most, families, daily life is marked by incredible challenges. The children, trapped in their own worlds, display major behavior problems while failing to develop many of the abilities needed for effective living.
Parents put forth extraordinary efforts to turn this situation around. All too often the efforts do not pay off. The failure is often interpreted as an unavoidable consequence of the continuum nature of the syndrome. Those at the upper levels of the continuum are deemed to mildly affected and hence do well, while those at the lower levels have extreme symptoms that are not amenable to change.
Fortunately, that is not the case! Significant gains are possible for the great majority of children. The type of effort required, however, is different from what is offered in mainstream treatment models.
At the heart of positive change is the relationship that is central to human existence — the parent-child bond. This relationship is the foundation for all other relationships that follow. If it is solid and effective, the future holds enormous potential; if it is not, then even intensive therapies will not yield benefits.
As families know well, the difficulties in this relationship are among the most troubled aspects of their lives. Yet, in the many intervention programs that are available, this aspect of development receives little, if any, attention. This neglect stems, in large measure, from events surrounding the work of the psychiatrist Dr. Bruno Bettelheim. In 1967, he wrote the book The Empty Fortress: Infantile Autism and the Birth of the Self where he used his knowledge of war survivors to “explain” autism. His experience showed him that extreme environments could produce autistic-like behaviors. He thought a similar process had to be at work in children with autism, and he placed the responsibility on the mother. The grievous damage done by this cannot be overstated.
Another tragic, but unrecognized, outcome has been to close off consideration of the parent-child relationship and the role it plays in the children’s lives. The topic has been taken off the radar screen. Yet, it is precisely this area that needs careful analysis if all children are to be helped to achieve their potential.
Autism and its Effects on Social Contact
A central feature of ASD is the fact that the relationship does not emerge in the automatic way that marks typical development. That’s why parents so often express comments such as:
“He won’t look at me. It’s as if I don’t exist.”
“I thought she was deaf. She never responded when I called her name.”
“Every time I try to hug him, he pulls away. Why won’t he let me mother him?”
With neuro-typical (NT) children, parents do not have to think about getting their children to look at them, or to respond to their names, or to seek cuddling. The children are born craving these behaviors and the thousands of small interactions that take place around these activities steadily builds the parent-child relationship.
However, the very behaviors that NT children find super-desirable are precisely the behaviors that children with ASD avoid. Their problems in social reciprocity and communication lead them to experience interpersonal contact as confusing and overwhelming—something to avoid.
Nevertheless, the children can be reached, and they can blossom, but only through conscious care and attention to reshaping patterns of parent-child interaction that normally function outside of awareness. The parent is not the cause of the syndrome, but the parent-child bond holds the key to any successful outcome.
Not only is the transformed bond an essential ingredient in empowering the children, it is also critical to the effectiveness of other therapies. It serves as the foundation on which successful intervention in language, communication, and social interaction are built. When it is in place, the achievements can be astonishing; when it is not, other efforts flounder.
Transforming the Interaction
When we think of creating a positive relationship with someone, the concepts that spring to mind are “showing warmth,” “being loving,” “displaying affection,” etc. Paradoxical as it may sound, these are the path to follow in trying to transform relationships with children on the spectrum. Warmth and love and affection is just what the parents have been offering—and they have not worked. If they are maintained in their present form, they will continue to “not work.”
There are clear reasons why they fail. The problems rest with the ways in which social interaction is normally conveyed. Like all behavior, social interaction is expressed via the perceptual, motor and language realms.
Because of the difficulties that the children experience in these realms, they often cannot process some or all of the information being conveyed. For example, interaction comes with lots of language—and this can be overwhelming on many fronts. It may be that sensitivity in hearing makes listening painful; it may be that the flow of words sounds like a muddle; it may be that the speed of the language is too rapid for them to process. Similar problems hold for the perceptual and motor aspects of the interaction (e.g., the children may be unable to process the many movements an adult makes in expressing emotions). Regardless of the source, the end result is interaction that is painful and confusing. It is only reasonable that the child attempts to cope by avoidance.
In considering this problem, some say that we should follow whatever it is that the children appear to want and we should not intrude and attempt to change them to what we feel is desirable. This approach is faulty on two major counts.
- First, all children need adult guidance. Despite the best of intentions, parents are abandoning their responsibilities when they hand them over to a young child. Ironically, no matter how much control is ceded to the children, the adult continues to be a major presence in their lives. That means the adult steadily presents them with noxious input, while not alleviating the pain that they are experiencing.
- Second, the children’s avoidance does not stem from their being incapable of relationships nor from their not wanting relationships. Instead it stems from their experiencing relationships as painful and confusing. They deserve solid relationships and they need such relationships if they are to prosper.
Starting on a New Path
From this perspective, it is clear that a first step in creating a positive relationship requires the child’s world be simplified so that everyday stimulation (that we take for granted) becomes less complex. This suggestion runs counter to the major assumption that has undergirded intervention—namely, that the children possess deficits that must be “filled in.” This view has meant that the focus of intervention is on providing, as soon as possible, enriching stimulation that will fill the gaps in the children’s functioning.
Accordingly, parents have been led to believe that the best course of action is to get the children into a range of therapies as soon as possible (speech and language, perception, physical therapy, etc.). As a result, within a few weeks of diagnosis, many families–at considerable expense, time and effort–have their children enrolled in a multiplicity of therapies that occupy a huge part of the child’s day. In other words, children who are having difficulty coping with the world, are now plunged into massive, intense, unavoidable encounters with that world.
Those therapies will, with careful selection, play an important part in improving the children’s lives. But they are not the way to start out. Instead, the focus should be on simplifying the child’s world so that the world becomes more tolerable and ultimately more appealing.
When phrased as an abstract principle, this idea seems reasonable. When it is transformed into an actual program, the response is quite different. For example, one of the key recommendations is to “stop asking questions.” Typically, when parents hear this, they are shocked. They have been led to believe that questions are the key to language and thinking and if they are stopped, the children’s growth will be stymied.
But think about what questions demand. At a minimum, they
- involve complex language where, simply to understand what is being asked, the children have to engage in lots of verbal processing that can exceed their capabilities
- are predicated on the assumption that the children will answer the questions—even when we know that they are reluctant to engage in interaction (often to the point of not even responding to their names).
So questions, when children are not ready for them, are highly counter-productive. These comments do not dismiss the value of questions. But they are not appropriate at the initial stages of trying to create a more productive relationship with the child. Later, when the children are ready, questions –along with other forms of “stimulation”—will re-enter the scene.
Questions, of course, are not the only change. Many components of the child’s life will be altered. These include:
- reducing the stimulation in the home—such as limiting the time on TV or other devices to about an hour a day. This includes not having the TV playing in the background throughout the day
- not having TV or other high tech devices in the child’s room
- providing respite times where the child is in his/her room for 15 to 30 minutes a few times a day. Instead of using the room as a “punishment time out” center, it becomes a place of relief where the child is confident that no one will be making any demands
- setting up “quiet sitting” times where the adult guides the child into a world of calm that is some akin to the experience of meditation
- speaking to the child in a voice that is slow and calm and offers comments, rather than questions
- limiting the demands placed on the child to the essentials of daily living (such as eating, dressing, bathing, etc.)
- remaining with the child during temper tantrums, while making no attempt to stop the tantrum and offering no distractions aimed at cajoling the child into some other activity. While not recognized as such, appealing distractions reinforce tantrums. They teach the child that tantrums pay-off –since they result in getting better and better things to do.
These are only some of the components that set up the desired changes. Even this brief list conveys the extent to which the habits of daily life will be altered. Implementation of the program requires change in many aspects of the way you live—from how you speak to your child, to the way you go about daily routines, and even the way you show your child affection.
What makes this worthwhile is the power that the changes have. Typically within two to three months, there is dramatic improvement as chaos and confusion relent, to be replaced by a calmer, more manageable world. As one parent put it, “The program went against almost everything I believed I should be doing, but I took it on. Once I saw the changes that were possible, I had to offer that opportunity to my child.”
The complete program is available at Amazon.com in a book titled Spectacular Bond: Reaching the Child with Autism by Dr. Marion Blank, a psychologist, Dr. Suzanne Goh, a neurologist and Susan Deland, a parent who implemented the program.