For too many years I was taught and believed that children diagnosed with autism were incapable of learning through the normal channels of relationship. Over time, I came to see that there existed an implicit belief that children with autism were not subject to everything we knew about general social and cognitive development but instead were seen almost as a subspecies of children. I accepted that they must be taught differently and could easily dismiss their frequent displays of emotional distress as simply a symptom of their autism. This all changed when I attempted to reconcile what the autism intervention and child development fields had to say about what children need for optimal social and emotional development.
After many years of working in various systems, including public school, community mental health and private practice, I became frustrated and disappointed with what I could offer to these children and their families. Each setting had its own goals and too many limitations. Last year, my dream of creating a new system, one that was flexible, responsive and holistic came to fruition. I opened the Sapphire Center, a therapeutic day program for young children with autism where the mission is improving quality of life for the whole family.
The Sapphire Center program focuses on the whole child understanding that all tracts of development are interwoven and require a strong broad foundation. What it comes down to for all children is relationships. Specifically, the attunement, trust and guidance that secure emotional relationships provide to children that form the foundations for social and cognitive development. All children need these kinds of relationships with their caregivers, teachers and broader community. Why would children with autism or any other diagnosis for that matter be any different?
However, if you look closely at many treatments out there, especially in the autism field, you see that the therapeutic provider is supposed to “do something” to the child or get the child to “perform” with the assumption that if repeated enough times will result in qualitative change in the child’s behavior. All the while, we miss that the quality of authentic and attuned relationship between the adult and child (or lack thereof) is the ultimate vehicle for healthy social development.
So what about those children we view as having a neurobiological deficit that prevents them from making use of and internalizing that guiding relationship? (I would argue that this view applies to a broad range of children, not just those diagnosed with ASD.) Is it possible to go back in developmental time and “do over” critical relationship experiences that for reasons we may never understand were missed or never fully integrated?
I would argue emphatically yes! It is possible and worthwhile to retrace the early lines of development for those children struggling with self-regulation, executive functioning, flexible problem solving and social awareness.
The Sapphire program is built upon this idea and provides therapeutic relationships, above intervention techniques and behavior plans, to young children with autism and related challenges. We are only in our first year of operation, but already the results have been dramatic.
Located in a house on 10 acres in rural Vermont, we are currently serving six children aged 2 through 9 years. The program is open year round and provides 28 hours a week of intensive individualized care. In addition to therapeutic childcare, we provide a variety of supports to the whole family including extensive parent coaching and counseling. The mothers of our students routinely spend several hours a week at the center interacting with their children while staff look on and provide guidance and feedback.
Sapphire’s treatment model, informed by the interdisciplinary field of Interpersonal Neurobiology and the autism remediation program Relationship Development Intervention®㋿, focuses on the core deficits of autism rather than the behavioral symptoms. These core deficits include: dynamic appraisal, episodic memory, self-awareness, relative thinking and intersubjectivity.
At the heart of the work is the deliberate creation and continuation of co-regulated social interactions between staff, parents and children. These co-regulated interactions take many forms depending on the child’s developmental readiness. Initially, they may be very short and simple but over time these interactions become more complex and begin to challenge the child’s growing sense of competency and resiliency. Often, we create infant like play patterns with repeating cycles of physical action, sound and facial expressions. Variations on themes such as peek-a-boo and tickle games create simple safe ways for children to engage emotionally while experiencing synchrony with another. At other times we invite children into guided participation activities such as cooking, art projects, and gardening where we create clear roles and patterns for each person and action sequence. The task is used only as a backdrop for creating the child’s experience of efficacy through attunement with the guide. It is this feeling of togetherness, of acting in harmony with the other and managing uncertainty productively by referencing the guide’s emotional and nonverbal cues that gradually leads to improvement. When children experience emotional distress, it is the safe haven of the relationship, not the behavior or outcome of the task, that is attended to and provides for repair and the establishment of re-regulation. This requires constant and careful observation by the adult to adequately read the child’s internal state, reflect it back and provide emotional containment without creating further dysregulation.
In addition to creating cycles of co-regulated interaction, the promotion of reflective functioning is crucial to the relational process. Reflective functioning is the ability to hold the subjectivity of the other in mind, to make meaning of another’s felt experience. This is especially critical in our work with parents as we help them to make sense of their child’s behaviors and feelings. This is often challenging with children on the autism spectrum as their internal experience may be difficult to interpret. There is a running dialogue amongst our staff that attempts to give voice literally and symbolically to a child’s internal experience without judgment and to use that understanding to react to children in an attuned way. Over time, children learn how others play a critical role in the management of intense feelings and seek out their guidance and support.
Much has been written already about how co-regulated affective experiences become internalized and lead to self or autoregulation. Recent neurological research supports how the emotional environment shapes and reshapes neurophysiological functioning throughout life. The healthy unfolding of this process has been linked to many markers of well being including attachment security, behavioral flexibility, emotional resilience, social competence, school success and more. While children with autism may continue to struggle in a world that thinks differently from them, this essential foundation provides the best chance for long term quality of life in a dynamic social world.
All of the children now enrolled at the Sapphire Center were initially nonverbal. None displayed any attempt to initiate joint attention (showing or bringing objects to adults, pointing to interesting sights, etc.) and were not receptive to adult attempts to share perceptions or emotional reactions. When frustrated or unable to complete an action successfully, the children did not seek adult assistance or soothing. Instead, we saw a great deal of throwing items across the room, dropping to the floor or passively giving up and wandering on to another object of interest. The children rarely seemed interested in what the adults or other children were doing, much less imitating them and spent much of their time engaged in static rituals such as lining up objects on a shelf, opening and closing cabinet doors, and scooping handfuls of dirt to watch it fall. Adult imposed transitions such as going outside to the play yard, sitting at a table for meals and diapering were generally met with extreme distress and resistance. Personal care such as feeding, tooth brushing and dressing were mostly lacking and often very stressful activities. Play skills were absent and when the children chose to handle play materials, they often banged them on the walls, waved them up close to their eyes or threw them out of their way. Social referencing, looking back to an adult for information about what is happening was completely absent. The children did not look to an adult for approval, permission, safety, celebration or to compare reactions to events.
Today, all of these children have made remarkable progress. Their ability to read faces and body language has improved reciprocal relationships and made the social world meaningful and enjoyable. Receptive and expressive language has dramatically improved and made life much less frustrating. They are all using at least a few spoken words to communicate both what they want and to share experience. Their interest and ability to engage in functional and symbolic play is consistent and marked by curiosity, persistence and the desire to share discoveries with others. Imitation, both of adults and peers, is an everyday occurrence and supported by a variety of group games that are child and adult initiated. Their tolerance for frustration and uncertainty has improved. I can regularly take a child’s hand and say, “let me show you something” and lead them to some other activity without triggering stress. The children frequently bring the adults books or other items to share and don’t need to control how the activity unfolds. We are seeing the kids frequently reference us as they consider whether or not an action is safe or allowed. We rejoice when the kids attempt to do something that has been discouraged looking to see how we will react and share a knowing smile with them as they stop themselves. We even see peers correcting each other in gentle humorous ways. As the kids have mastered all sorts of challenges, such as navigating the obstacle course independently, dressing themselves, building intricate block towers and creating works of art, we see their pride and their desire to share such accomplishments with others.
Recently, while playing outside, one little boy pointed up to the visible moon and said, “moon”. He looked to me and smiled, repeating the sequence until he was sure that I also saw what he saw. We shared a delightful moment appreciating the beauty of the moon in the daylight. Since then he has done the same thing with airplanes, tractors and birds at our feeder. He is not requesting that I serve him up the moon or anything else. He is simply sharing his mind with mine. And that is foundation for all things intersubjective.
Our work will expand as the children are ready for more complex activities and concepts. It is our goal to see the children transition into mainstream educational environments as soon as we are sure they will thrive there. For those kids who continue to need intensive therapeutic support, our goal is to grow the Sapphire program as the kids grow so that we can eventually offer a grade school program for older children. Most importantly, we want kids and families to feel they have a place where they belong and where they are understood.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.
This sentence caught my eye, because I think it is not only applicable to childhood autism diagnoses, but to many issues that are given psychiatric labels that surface in early adulthood.
“Is it possible to go back in developmental time and “do over” critical relationship experiences that for reasons we may never understand were missed or never fully integrated?”
Unfortunately, what has often stood in the way of relearning relationships are the parents — who feel that their parenting skills are being called into question. Everybody loses if people are not willing to put aside their own egos. It is certainly possible that parents of autistic children are more willing than parents of the adult children to do whatever is needed to see changes happen. Hopefully, the “alternative” (environmental) view of human distress will become more and more mainstream.