Engage My Brain

When I was growing up, speaking was so frustrating. I could see the words in my brain but when I realized that making my mouth move would get those letters to come alive, they died as soon as they were born. What made me feel angry was to know that I knew exactly what I was to say and my brain was retreating in defeat. … Jamie Burke, 2005

Jamie Burke is a college student who now is able to speak the words he types with two fingers on his Augmentative and Alternative Communication (AAC) device. He requires no physical support for his typing yet continues to need the presence of a trusted support person as an "emotional platform" (Maurer, 1993) to execute his typing. It may be that the relationship allows him to be in a more optimal "space" to regulate the sensory and movement aspects of typing. We have proposed that many other individuals with the autism label may be challenged by sensory and movement differences in starting, stopping, executing, combining and/or switching actions, thoughts, emotions and speech. These symptoms have been described in the literature for many years but generally not integrated into our descriptions or understanding of autistic behaviors.

Sensory and movement differences often escape the notice of those of us who do not typically experience them but have been well described by autistic self-advocates and persons interested in individuals with autism and other disability labels. Ignoring these differences (or redefining them as autistic behaviors to be controlled) has made life unnecessarily more difficult for individuals with autism and those who care about and for them. Many of the assumptive errors we have made are based on our own social history. In the absence of clarity about the nature of these movement differences, we will continue to be forced into the default position of seeing all unfamiliar behaviors as intentional, deliberate evidence of intellectual impairments and even pleasurable. We have not proposed another list of deficits but a greater understanding of the complexity of what we call autistic behaviors and the necessity to rethink our assumptions about them. The task is not going to be easy. Such sensory and movement differences are manifest in autism and many other disorders in strikingly unique, personalized and dynamic ways that test present research (and teaching) strategies that rely heavily on a positivist-reductionist philosophy. Yet, some of the brightest scientific lights of the 20th century reminded us that the best way to approach objectivity in science is to view the phenomenon from as many perspectives as possible (Luria, 1939; Edelman, 1992; Shawlow, 1996, Personal Communication). As Einstein shared, "Not everything that counts can be counted and not everything that's counted, counts" (Cunningham & Scott, 2004).

There is a long, continual path of misunderstanding to autism. People have been thought of, and referred to, as "non-persons," "behavior problems" and sub-normal in every imaginable way. If they cannot speak, we assume they have little to say and offer only the most limited of communication options. Irrespective of the precision and intensity of our interventions, more often than not they experience isolation, segregation, homogeneous grouping, loneliness, pain and boredom as part of their customary care across the life span. Often their sensory and movement differences contribute to such outcomes, as these leave the rest of us unaware of the true nature of their challenges.

Any view of autism at this time needs to reflect the experience of self-advocates with autism and others who describe sensory and movement differences, as well as the latest in the neuroscience and child development literature. We need a research agenda that focuses on understanding and supporting autistic people and others in more respectful, personalized and successful ways. It is the least dangerous assumption (Donnellan, 1984) to see all as full human beings who may have formidable and unfamiliar challenges to overcome and who, of course, desire social interaction, communication and participation.

Too often autistic children are raised to believe they are broken and need to be fixed. Adults with autism too often live lives of isolation and poverty. Understanding people's experiences may lead to acceptance, accommodation and appropriate support. To continue down the same paths, well worn for 65 years, when all these data impel us to rethink our assumptions and broaden our path is unthinkable.

 

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