By Catherine Schwartz, MA, OTR/L
As a pediatric occupational therapist (OT) who has worked in both in a private clinic and school settings, I consider myself well-versed in working with Autistic clients. Although I do think I have an expansive amount of knowledge in this area, my eyes were opened to how much I still must learn after having the opportunity to interview Kim Clairy and her husband, William Miller. Kim is an Autistic OT who has a history of Attention Deficit Hyperactive
Disorder (ADHD), Clinical Depression, PTSD and Anorexia Nervosa. She lives in the mountains of Northwest Georgia with her husband where she works as an advocate, educational speaker, and an autism consultant working with individuals, families, providers, and with eating disorder facilities. After a childhood of struggles with being misunderstood by those around her, Kim was officially diagnosed with autism spectrum disorder (ASD) as an adult. Kim has a unique perspective on her ability to interpret and articulate personal sensory and social experiences.
Kim’s journey to becoming an OT is one of challenges and perseverance. Growing up Kim says she was misunderstood, a lot. She was diagnosed with ADHD around the age of 5 or 6, but her mother suspected there was more going on with Kim than just this diagnosis. Kim struggled a lot in social situations and with sensory processing as a child. She had many sensory sensitivities, particularly to sounds. She often engaged in hand-flapping, eventually being told by both family and teachers to stop this behavior. The behavior manifested itself into alternative hand behaviors that peers were quick to pick up on. Kim was constantly teased and struggled socially with classmates. She would attempt to blend in by mimicking peer behavior, such as laughing when everyone else was laughing. Unfortunately, Kim says, she often didn’t realize that she was the reason she everyone was laughing. Throughout her entire youth, Kim experienced “really big meltdowns”. She would throw things, yell, and become physically aggressive. She was often viewed as being defiant, when really, she was just experiencing sensory overload. Eventually Kim was diagnosed with Clinical Depression.
One of the things that I found fascinating about Kim was her ability to describe how she relates being Autistic to her eating disorder. After high school Kim attended college where she played soccer and was passionate about it. She would practice before the team practice, after the team practice, and during most of her free time. At one of the practices, Kim says that her soccer coach suggested that the team try to “eliminate all bad foods” from their diet, as it could negatively affect their performance. Kim says she took this to heart and that her rigidity in thinking caused her to misinterpret the information. Kim eliminated most foods from her diet, as she now perceived them as “bad”. Around this same time, a health professor in one of Kim’s classes gave a lesson on cardio performance. The professor stated that to achieve true cardio performance an individual’s heart rate would need to be at a specific level for a specific amount of time. Again, Kim’s rigidity and fixation with hitting these numbers for a particular amount of time caused her to try to achieve these numbers over and over and over again. In other words, Kim was working out, a lot. Pair this with barely eating and Kim started to lose significant amount of weight, which lead to an eating disorder. Kim says that as she began to lose weight, she started to perseverate on body image. She began to purge to lose even more weight. However, when she started purging, she discovered that it was regulating to her. Kim says that she felt “reset” after purging and that it could help snap her out of a catatonic state. Eventually Kim was able to get help for her eating disorder. She now works with eating disorder programs and can provide a unique
perspective for staff, often being able to help clients in a whole new way.
Kim and her husband have been together for over six years. Prior to meeting Kim, William says he had no familiarity with ASD, but has learned much through Kim over the years. William is a big advocate for Kim, encouraging her to do what she needs to do to function across environments. Kim says that he is the reason she started to be comfortable wearing her noise-cancelling headphones and sunglasses in public. William has helped Kim learn about social cues and interactions through movies and TV shows as well. When they were dating William offered to pause the TV whenever Kim didn’t understand something; it turns out they had to pause the TV quite frequently. William did such a great job helping her understand social scenarios and non-verbal cues that sometimes Kim will refer to certain scenes when she finds parallels between a real-life scenario and one from a show. These scenes help her better understand the world around her.
Kim has a gift for articulating the complexities of functioning in everyday life as an Autistic adult. Kim described her difficulties with completing tasks in detail to me, sometimes reading passages from her journal. She says that errands and chores such as grocery shopping and cooking are challenging from both a sensory and planning perspective. Kim says she is a very detailed oriented person, something her husband mentioned several times as well. This makes certain things harder, especially learning new tasks or strategies. Kim uses visual schedules to help her get through her day, and she and her husband lead a self-proclaimed “very predictable life”. She prefers to use pictures over words to create her schedule, as they are easier for her to process. Kim says she regulates herself before and after most outings such as grocery shopping, therapy appointments, etc. Although she can drive herself, she prefers to not to, as driving can be a very overwhelming task. Kim stated that a misconception about her is that she can complete these everyday tasks with ease, especially since she has received a higher education. Kim was quick to point out that being academically smart and doing well in school does not always translate to functioning in everyday life. She reported that she didn’t know how to do many simple tasks until she was older, including opening her mail and preparing a meal. Kim uses many sensory tools when she becomes dysregulated, including the use of earplugs/headphones when it is loud, sunglasses when it is bright, spending time in nature, and disassociating. She reports that she has even climbed out of two-story windows to escape overwhelming environments and to get out to nature.
Kim is passionate about being a resource and an advocate for adults with ASD. Since there are minimal resources for these individuals, many end up in prisons, psychiatric centers, and with overall poor outcomes. Kim says that not only supporting Autistic adults is important, but also educating others (employers, family members, etc.) on how to support them is important as well. With the right tools, Autistic adults can thrive in their environments, they just need the right tools and support.
Kim’s story really made me think, how well do we truly understand the struggles our clients and students are going through? Kim’s ability to articulate her sensory processing experiences, combined with her knowledge and training in the field of sensory processing make her an invaluable resource to the OT community. On September 15 th , 2021, Kim Clairy will join Dr. Kelly Mahler for a one-hour Lunch and Learn live webinar titled, Beyond the Seen and Behind the Scenes of Behaviors: Understanding the Needs of Neurodivergents, An Interview with an Autistic OT. During this webinar, Kelly will interview Kim about many things including: her lived experience and trauma as a result of the sensory world - the focus will be on the outward behavioral manifestations; importance of seeing past the surface behaviors and understanding the deep why’s; and empowering OTs to step up as a ‘behaviorist’ so to speak. A question-and-answer session with participants will following this interview.
While speaking with Kim’s husband, William, he said that his advice for parents, family members, and spouses of Autistic individuals is to be OK with being different, taking your time and moving at your family member’s pace. As OT practitioners, I think we can all benefit from this advice. In William’s eye’s, “an individual with Autism has their own language and is communicating their needs in that language”. It is our job to start to understand that language so that together you can begin to make progress.