Creating a Relationship of Trust: Professionals and Adults with ASD

By Carolyn Ogburn, MLA
Autism Asperger’s Digest  May/June 2014

“Our first task in approaching another people, another culture, another religion, is to take off our shoes, for the place we are approaching is holy. Else we may find ourselves stepping on other people’s dreams.” ~ Max Warren

She was quiet a long time. I sat beside her, heart in throat, but accepting any response she might offer. Then she turned to the computer keyboard that we were sharing, and typed, “OK, I will try it.”

She agreed to try because she trusts me. Trying any new thing is hard, and will always be hard. My part of the agreement is to try to make it easy for her. We will work until, together, we find a system that can support a new behavior or pattern of communication. The plan we’d made together—to use a series of pictures to organize her day, including sensory breaks—might help decrease her stress, which is associated with exhaustion and other aspects of her life for which she’s come to me, seeking relief. Or, because it’s new or because it’s not quite what she needs, our new system might increase the very things she’s trying to eliminate. “We’re just gathering data,” I’d typed earlier. “We need more information.” And she has agreed to try it. Because she trusts me.

There are a lot of skills and strategies that, as professionals, we study and share with each other. We’ve learned the diagnostic characteristics of people on the spectrum, their differences in social understanding, intense interests, reliance upon routines, and sensory processing differences resulting in unique environmental stressors. Understanding the characteristics of autism spectrum disorder (ASD) helps the professional better understand the cognitive, sensory, and behavioral needs of the client, but it leaves out one element that I’ve found to be crucial in working with adults on the autism spectrum: the importance of trust.

While ASD itself isn’t traumatic, the result of growing up with undiagnosed ASD can be. If the person on the spectrum is an adolescent or an adult, she’s usually had many years of trying to fit in with her peers, with mixed results. Memories may offer detailed histories of seemingly inexplicably failed social overtures. Over the years, ordinary sights, sounds, or tactile sensations—bright sunlight on a snow-covered bank, the clamor of a school hallway during class changes, or the unexpected throb of another driver’s sound system—may have been experienced with traumatic intensity. Due to differences in social interpretation and communication, she’s had occasions in which she’s too easily trusted someone who has undermined her trust, whether intentionally or not. She’s often experienced some combination of physical or emotional abuse. And, many times, she’s not trusted someone who might have helped her.

Educators are starting to realize the ineffectiveness of trying to use standard behavioral interventions with neurotypical children who have experienced trauma. In “Schools That Separate the Child From the Trauma” (Bornstein 2013), special educator Susan Cole says “It’s about creating a common context that keeps kids feeling safe.” And, Jane Stevens, health and science journalist and editor of ACES Too High, says “Educators understand that the behavior of children who act out is not willful or defiant, but is in fact a normal response to toxic stress. And the way to help children is to create an environment in which they feel safe and can build resilience.” [emphasis, Ogburn]

In dissertation research, Kammie Bohlken Lee (2010) found that college students with ASD identified four main qualities as being valued within their friendships: trust, support, connection, and shared interests. In other words, much like what most neurotypicals value. The difference, I’d suggest, is that trust is a more fragile bond for adults with ASD than for their typically developing peers. As with children who’ve experienced trauma, people on the spectrum must have an environment in which they feel safe in order to develop new skills.

At our next session, my client brings with her the adaptation of the picture schedule she created during the week. It’s something I never would have thought of, and yet looking at it, I see immediately how it works. I remember her words from the week before: “OK, I will try it,” and realize that she knew, even then, that what I’d offered her wouldn’t quite fit, but she hadn’t had the ability to say so. Yet she’d trusted me and brought something that would work better. “Thank you,” I tell her, then I write it down: “You have taught me more information about what makes sense for you. Thank you for communicating this to me. It helps me!”

Michael John Carley wrote that, in considering the issue of trust and ASD, “It is the partner without ASD who not only must first accept the obligation to change, but also make the greatest effort toward developing trust” (Prizant and Carley 2009). In my experience, it’s almost always the person with ASD who is working harder to maintain the relationship than is the neurotypical person; that the neurotypical partner must accept the responsibility to change is the first step in developing a relationship of trust. It is not obligatory that the person on the spectrum accept these efforts.

When I first started working with people on the spectrum, I found that each person was like her own private club: as long as I followed the rules, she was delighted to have me join her club. I still find this a useful metaphor for work I do, and the interactions I have. Every encounter is a reminder that I could, at any time, be barred from the club. I could, at any time, unintentionally act in a way that re-opens wounds of misunderstanding, violence, and abuse. The most dangerous element in any environment for a person with ASD is usually another person. And, sometimes, that person is me. Although this knowledge can be disheartening, I wouldn’t be doing my job if I didn’t keep this foremost in my mind. While both of us participate in cocreating a working relationship, it’s my responsibility to take the first steps to create a relationship of trust.

BIO
Carolyn Ogburn (c.a.ogburn@gmail.com) worked for the TEACCH Autism Program from 1998 to 2013. She can now be found at TAG-Asheville, working to promote self-acceptance and self-advocacy based on the principles of neurodiversity.

References
Bornstein, D. 2013. “Schools That Separate the Child From the Trauma,” The Opinionator (blog), New York Times, Nov. 13. http://opinionator.blogs.nytimes.com/2013/11/13/separating-the-child-from-the-trauma/?src=recg&_r=1

Lee, K. “Understanding the Friendship Processes of Individuals with Asperger’s Syndrome: A Phenomenological Study of Reflective College Experiences.” PhD diss., The College of William and Mary, 2010. ProQuest LLC. http://eric.ed.gov/?id=ED517591

Prizant, B., and M. J. Carley. “The Primacy of Trust.” Autism Spectrum Quarterly, Winter 2009.

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