Treating the Child Under the Behavior: Affect & Relationship in Children with Autism
Most treatment models for mental health problems in children with Developmental Disabilities (DDs) including Autism or Intellectual Disability (e.g. Down syndrome) are based on manipulation of behaviors, with much less, or no emphasis on the child’s affective experiences or on use of interactions/relationships. Challenging behaviors in this population are so often regarded as just that, Behaviors, rather than as reflective of underlying emotions, as the outward manifestation of underlying dynamic emotional processes of a personality, as the struggles of a person with their own unique experiences, feelings, and relationships.
I suspect there are many complicated reasons for this; It has only been since the 1980s that mental health diagnoses have been recognized in individuals with DDs. Even today, professionals trained in working with individuals with Autism or other DDs often receive minimal training in mental health and vice versa.
Perhaps, relatedly, a belief or undercurrent of feeling permeates still in our culture that people with a DD are fundamentally “different” from us. As George Estreich writes in The Shape of the Eye: A Memoir, about raising his daughter with Down Syndrome, “We are still torn between perceptions of humanity and difference. We still assume people with Down Syndrome are fundamentally like each other and unlike us”. Complex affects and relationships are particularly human and “like us”, as compared with behavior. And, as we know, conceptualization drives treatment models.
Another contributing factor is surely that it isn’t straightforward to figure out affective and relational ways to approach treatment with children who have substantial cognitive, communication, interaction and play limitations and differences. Play therapy generally relies on the child engaging spontaneously in play and in some measure of interaction. Talking based therapies rely on fairly advanced social use of language and metacognition. Most therapies are developed based on an assumption of adequate basic use of these tools by the patient. Operating at the behavioral level may seem like the only path in to change behaviors in children with limited use of these tools.
I will use treatment of phobias in children with Autism as an example of this divide. The typical treatment paradigm – with variations – of phobias in children with Autism/DD involves gradual exposure combined with and/or rewarded by some kind of tangible desirable item (e.g. Jennett and Hagopian, 2008). Unlike in CBT, the exposure hierarchy is constructed by the adult. Preferred items are based on observation or experimentation, and then are paired with increasing exposure. The child afraid of needle injection is then given favorite snacks/toys while tolerating closer proximity/longer physical contact with a needle. Some paradigms incorporate “escape prevention” where the child is prevented from stopping earlier than the hierarchy dictates regardless of distress, while others stop exposure when the child exits and restart it again later. This paradigm is generally successful over time, in the child tolerating the trigger.
I would argue however that there are many problematic features of this paradigm. These are also components of many treatment paradigms for a range of emotional/behavioral challenges in children with DD:
- It is likely experienced as coercive rather than the very collaborative nature of for example CBT with typically developing children
- It often induces unnecessary distress with exposure increase, especially when there is escape prevention
- It doesn’t expand the child’s understanding of their own affective experience, and
- It doesn’t have an affectively rich relational component, hence providing no opportunity for growth in the child’s ability to “co-regulate” with peers or adults.
In my next blog, Playing with Fear, I’ll describe a very different model for treating phobias in this population, still using gradual exposure paired with pleasurable activity, but with affect and relationship at the forefront.
Estreich, George (2013) The Shape of the Eye: A Memoir, Tarcher
Jennett, H.K., & Louis P. Hagopian, L.P. (2008) Identifying Empirically Supported Treatments for Phobic Avoidance in Individuals With Intellectual Disabilities, Behavior Therapy 39, 151–161