Follow this link to the pdf of my presentation from the AATA 2018 conference. I have made slight modifications to this since presenting. This information is shared with client and parent permission and informed consent. This presentation reflects early formulations of the theories and materials found on this website.
Jamie is small, not smaller than one would expect for his age, but he looks little crouched next to his mother, where he hides his face turned away from me. He is nine years old and recently diagnosed with Autism Spectrum Disorder. He qualifies for a diagnosis that the doctors and clinicians in his life call Level 1, meaning that to many he appears typical most of the time, academically proficient, friendly (most of the time) but quiet. Although capable of doing his school work, he would rather watch YouTube, so in that respect not very different from most of his peers in the United States in the 2010s. Where he is noticeably different is when he throws what outsiders see as “tantrums”, sort of like those of a two or three-year-old. When Jamie gets mad he throws things, charges people, hits, kicks, knocks his younger siblings over. It is as though he is unable to control himself, as though he is unable to evaluate his actions or ask for help. He first got on the radar of the local mental health center when he lunged at a peer at Sunday School, giving the child a small bruise on her arm. When people do not know Jamie, many see him as a child who lacks discipline, a child whose parents disengage and are unwilling to punish or set boundaries. This is not what I see and certainly not what Jamie’s parents are like. I have worked with others like Jamie.
Just after the September 11, 2001 attacks, when I was 21 years old, I started working as a lay behavioral therapist, following the strict rules of Applied Behavior Analysis, to teach a young child skills she needed to be ready for school when she turned five. We repeated pattern games and word identification, role played age-appropriate play, and I imitated animal noises in the way many preschoolers do naturally, repeatedly. She received rewards for completing the tasks I asked of her, for imitating me imitating animals, for matching the right pictures, and so on. She sometimes seemed anxious, concerned about whether the monster in the attic playroom (where we had our ABA sessions) would get her, but this was beside the point, it was not what I was there to address, even though she sometimes did not appear able to concentrate because of this fear or sometimes had “tantrums” crying and throwing herself on the floor seemingly related to it. Anyway, I was just an undergraduate studying art and psychology, who did not know how to address this anxiety, so I did what I was supposed to, redirecting her to the task at hand and offering goldfish crackers as a reward. Still I wondered, would it help to be more warm and fuzzy, to offer comfort for this worry? I noticed that re-enacting scenes from Dora the Explorer calmed her, so I encouraged this during our breaks. We concluded our ABA sessions after 16 months, and I do not know how things turned out for her.
I noticed this underlying anxiety over the years when working with individuals of all ages diagnosed with ASD. The anxiety might be about the intruder drill coming up at school (the anticipation of the alarm almost too much to bear), not being able to make friends in the same way as peers, a break in routine like an unanticipated snow day, a subject that was just too hard at school, not being able to hold a job because they cannot quite figure out what their boss wants, and really anything that many of us neurotypicals often also experience as anxiety provoking. The difference came in how my clients would react. Whereas many neurotypicals would talk to someone about how they felt, assess how they might change the situation, seek comfort in a hug from a person close to them, or go to their doctor and ask if medication might help; my clients would often experience meltdowns, becoming inconsolable, with heaving sobs and/or screams; or violent tantrums, hitting and kicking and throwing themselves or objects on the floor (rarely hurting or attempting to hurt others). Another difference I noticed was how most teachers and clinicians addressed this anxiety. They saw it as behavioral defiance and often ignored the affective health of the neurodiverse person.
So, what does this all have to do with Jamie? I quickly observed this apparent anxiety in Jamie. His anxiety had many roots: the adoption of his youngest sibling, the illness that sometimes put his father in the hospital, his peers refusing to always do what he wanted to do at recess, having to share his beloved iPad with his older sister, his concern that a tornado might take us away, my computer failing to load a program, and so on. How do I know this was anxiety and not just signs of what others might see as a spoiled and defiant child? The anxiety was betrayed by his inability to be distracted by anything else, his insistence that in this moment the world is ending (though not expressed in so many words), the refusal to talk about what is happening, the inability to self-soothe that some read as refusal to do so, this is different. Sure, these patterns appear in other kids, but in my experience neurotypical kids self-soothe or seek soothing from others nine times out of ten, especially once they attain school age. Kids and adults with ASD, or other neurodiverse ways of interacting with the world, struggle to do so, which is then often made worse by being punished for what is perceived as defiant behavior but may in reality be an anxiety attack or generalized anxiety.
Level 1 ASD means Jamie needs some social support because of minimal difficulty in social communication, such as not following conversational rules, like interrupting people one too many times, and having marginal difficulty with reading and displaying body language and other social ques, having behavioral excesses such as experiencing some distress (as compared to typical peers) when needing to transition between activities or when a schedule change occurs, this may be verbal protest or outright refusal to accept the change. Difficulty getting organized, such as remembering to take home homework assignments might occur, which can lead to not completing tasks (APA, 2013). This organizational difficulty can lead to individuals with Level I ASD to be diagnosed with ADHD mistakenly, which I have witnessed on several occasions. The conversational issues may include specific focus on preferred topics, with difficulty changing topics when others in the conversation do so, clearly more socially comfortable when the topic is one within their particular expertise. These difficulties may often go unnoticed by social acquaintances. Individuals with Level 2 ASD are less likely to socially initiate, may only interact based on special interests and have more pronounced difficulty with reading body language and other social cues. They experience greater difficulty with transitions and are often content to focus for hours on a preferred interest, becoming visibly upset when transitioning is necessary. Individuals with Level 2 ASD generally possess verbal communication, with traditional speech or the use of American Sign Language or other assistive communication devices, such as iPads with communication apps. Finally, individuals with Level 3 ASD often have limited or no verbal communication, may be oblivious to social communication attempts by others, and may experience extreme difficulty coping with change. The deficits and behaviors of individuals with Level 2 and 3 ASD are more apparent to even casual acquaintances than those typical of individuals with Level 1 ASD (APA, 2013).
Some of Jamie’s responses to change are stronger, more like those of someone with Level 2 ASD but his communication skills fall firmly within that of Level 1. Jamie is generally friendly, once he knows you. However, when I first met him he clung to his mom, more like a toddler than a typical 9-year-old, and he often mumbled “I don’t like you” or even “Fuck you” under his breath when I would try to talk to him. It took a couple of months for him to warm up to me and allow me to see him without his mother present. We bonded over YouTube. He shared fan made videos with me based on popular cartoons and video games. He had a particular penchant for internet-based games like Minecraft, and for catchy little videos like Nyan Cat which some people compiled versions of that repeat for more than ten hours. Jamie would be content to watch “YouTubers” recordings of themselves playing Minecraft for hours, if I would let him. He feels much the same way about watching Nyan Cat. I was hesitant at first to include these things in our sessions, especially because having to transition away from these preferred activities was often what caused bigger behavioral incidents, such as Jamie leaving the room and walking around the building refusing to return or knocking over my lamps and throwing my pillows or on rare occasions attempting to hit me. Was I really doing art therapy if we were just watching people play video games online? Was I causing more harm than good by allowing these things that lead to such behavioral outbursts in session?
Jamie responded to offers of paper and marker. He liked to draw these preferred videos too. This made me feel a little better about use of the actual videos in session, we could bargain, draw first, video later or make a drawing of the video he liked, which I could usually parlay into continued focus on making art, focused on his interests, rather than playing of the games. He, like nearly every person I have ever met with ASD, also liked Thomas the Tank Engine. We drew trains together. He initially refused to address any of the concerns his parents would mention like his anger outbursts, his aggression at his adopted sister, his difficulty socializing with peers. However, as he became more comfortable with me, I could ask him to draw pictures of the video came characters or “YouTubers” he liked experiencing scenarios like those that were happening in his life or with the help of my intern role play these things with Thomas toys. [He confided in me that his occasional under the breath cursing was from reading YouTube comments and watching YouTubers that his parents had forbidden while unsupervised.]
We could frequently address what the characters worries were, how they felt, what led them to throw things? Sometimes we role-played, wrote, and drew stories seemingly unrelated to what was happening with Jamie. A big tornado would hit Sodor where Thomas lived, and we would have to rescue the trains and other characters. Usually when these disasters occurred there was something that made Jamie anxious happening in his life: a transition to a new school, the death of a family member, experiencing bullying, a new diagnosis of diabetes for Jamie. This role play in many ways was not any different than role playing and art-making that I witnessed with neurotypical clients. What was different was that Jamie, unlike other kids of the same age, did not make up his own characters, did not name them after himself (only occasionally after his sister) even though I could always tell which character was him. He also did not allow me to create or introduce new characters like the neurotypical children of his age I have worked with, we had to stick to his script, play these scenarios out for months at a time. After about a year of focusing on the same video game, he suddenly introduced his own characters modeled after the game, named after his youngest sister, and he allowed my intern who did magnificent voices to introduce additional characters. I worked with Jamie for several years. His play and art-making’s content and actions were more like what I saw with typically development preschool children or individuals with significant developmental delays. However, Jamie lacked the intellectual challenges one might expect to come along with this type of play in someone of his age. He nearly always focused on his popular culture perseveration of the moment, sometimes lasting for weeks, sometimes for months or years.
It is hard to articulate treatment plans in ways that managed care agencies like when your notes reflect repeated drawings of tornadoes sweeping away video game characters and YouTubers, and there is little in measureable behavior change for extended periods. It is concerning when goals do not change across several 90-day treatment updates, and the fear of Medicaid auditing your records looms yet continuing to work in these ways felt right, felt like something to which Jamie responded, however slowly.
Jamie and I continued our art and role plays based on his favorite characters. He became more open to me interjecting questions like “what is Thomas afraid of” or “are the other people in the Minecraft universe afraid of the Creepers?” Occasionally answering questions like “what are you afraid of?” and “what makes you feel better?” but mostly only answering them about his preferred characters. Then suddenly Jamie would show a big leap toward or surpass his goals. For instance, Jamie had social anxiety which got worse when he entered middle school, not wanting to go anywhere without his parents, not wanting to speak to others, which seems a reasonable anxiety for someone with the social communication problems of ASD. His characters in play started focusing on tornadoes and he liked listening to tornado sirens for a reward in session. Then his mom reported he entered a speech contest electing to do an educational speech on tornadoes and early warning systems, as his interests shifted from video games and trains to the weather and weather channel. Jamie excitedly shared about his participation in speech. He made friends on the speech team and shared that he felt less anxious about interacting with his peers, began talking about having friends, although he still prefers to stick to his popular culture perseverations in his artwork. These appeared to be genuine supportive friendships and not the ones he had previously dominated with insistence that peers do only what he wanted to, sure some of this progress was aging, but some of was a leap ahead in his coping skills and self soothing with his social anxiety. Countless house of popular culture-based art and role play provided space for addressing Jamie’s affective needs, and although rarely directly, addressing underlying causes of his anxiety, rather than just shaping “bad” or “unwanted” behavior and rewarding the right response with goldfish crackers.
I am passionate about advocating for art therapy accessibility!
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