Special Interests as a conduit

Five years ago, I had never heard the term “special interest” with respect to autism. A year and a half later, when my son Cooper went into nervous system burnout and I started researching all things related to “Pathological Demand Avoidance,” I started hearing new terms: Autistic Special Interests Monotropic Focus But when I looked at my son and tried to discern an interest or engagement – ANY interest or engagement outside of me entertaining him or a screen devouring his attention – I simply couldn’t find it. The only thing he seemed to be consistently interested in were dogs and animals, from infancy. For years, my husband would wake early every Saturday to grab a free parking spot at the National Zoo in Washington D.C. and spend hours carrying Cooper as he looked at every animal ranging from pelicans to monkeys to owls. Back then, our weekends were a hurricane of dysregulation and Cooper seemed like he was in constant motion, dysregulation and mania unless we were swinging and moving his body. (Think: going to a pool, but spending the ENTIRE time moving his body quickly through the water, with him completely refusing to engage with the water on his own).   Much of the time, it felt like a heroic feat just to keep his attention for more than a minute so that he wouldn’t meltdown. Needless to say, Special Interest as a concept didn’t make sense to me in the context of my son and I’ll be frank, it took two years post burnout to really start to grasp the importance of what this concept means. Glimmers of interest and engagement in things other than screens, another safe nervous system, intense sensory experiences and novelty/dopamine (constantly demanding Amazon purchases, ice cream cones covered in bright sprinkles and gummy worms, and YouTube scrolling) began to appear as his CUMULATIVE nervous system activation came down. First, he began combining superheroes verbally with me on the trampoline for hours. For the first time, I didn’t have to bounce his body for him, but he could actually be with me, without my body physically moving him, and he would combine heroes like Batman and Cat Woman. Then it was my turn. Robin and Ant Man. Aquaman and Green Lantern. Hulk and Wonderwoman. Over and over and over. He would dress in superhero costumes, watch shows about them, ask us to draw them, play with the figurines in occupational therapy. Then suddenly - out of nowhere - superheroes were dropped. Then there was a limbo, and they were eventually replaced with Pokemon. Then he dropped that entirely. Then it was Beyblades and he made his first friend (another autistic child) in those fraught days when we were still attempting to cobble together public school attendance. Then it was Bakugans, and so on. I began to see the unique pattern of PDA special interests – that they are not necessarily kept longer than a few weeks or months, because they become perceived as an *internal* demand or loss of autonomy and then rejected summarily (which can be befuddling and expensive for parents). As Cooper’s nervous system activation continued to come down, his self-awareness improved, and our trust solidified, I also saw the special interests extend. Fishing lasted all of last summer and has resurfaced this spring and summer with a beautiful intensity. And now, out of the blue, appears American football. Cooper lives for it. He researchers the players and learns research skills. He watches shorts of plays on YouTube to learn exercise drills. He collects football cards and memorizes the teams and stats, practicing his reading. He downloaded an old-school football video game (1980s design) and has started asking me about geography – “Mommy, where is Dallas? What state is Jacksonville in?” – as he organizes his team roster. He practices football drills he designs in our Occupational Therapy sessions, which help us move through his plan of care in a very non-linear way. He has started eating fried salmon bites, steak and chicken so he can build muscle and grow to be an NFL player. He now walks with his father to the nearby dog park, every single day after camp, to let our dog run AND practice catching the football with his father. (For the first year of the service dog, he wouldn’t walk him.) He wears his pads and helmet to practice the sensory experience around the neighborhood. He is interested in getting enough sleep. There are four things I want to point out to you that I think will be helpful for you as a parent (or a therapist!) about this topic and that can be illustrated through the football anecdote. Non-attachment to outcomes as a parent: This is not about whether he becomes great at football or excels as a football player. He could drop it tomorrow and yes, I would be disappointed because he seems so happy right now, however, I will deliberately practice non-attachment (and therefore energetically signal true autonomy). I know at some point it will be dropped. I try to take each day with gratitude that he has an activity that regulates him, that propels him into the sunshine and off the couch, and gives him something to engage with his father about, when for many years I could not fathom this happening. Special interest as the conduit to learning and resilience: When he drops football, what will remain is important and really has nothing to do with the game or sport. What remains is his hard work in occupational therapy, his interest in trying new foods, his awareness that sleep affects him, him feeling like he can do the thing (with nervous system support from dad) even after he has panic attacks at practice. The special interest – no matter how fleeting – has been a conduit for his growth. Special interests as they relate to homeschooling/unschooling: A key place I see parents get stuck when they need to pull their PDA child or teen out of school, is that they rush to homeschooling and replicate the structure and paradigm of traditional education. Maybe you add in a sprinkle of the special interest – e.g. let’s do a math problem about a football game! – rather than centering the special interest, for as long as they want, as an end in and of itself. And then you patiently wait for the learning to emerge as a by-product of engaging in a special interest over the long term (read: years). You will feel a limbo, because it feels like you aren’t “teaching” or “doing anything,” for a while, but you are. You are allowing the conduit to emerge for organic learning. This is self-directed education. Framework for Decision-Making and Organizing your Days/Sessions: Finally, whether you are a parent trying to structure a weekend with a PDAer, move into unschooling for the first time, or a therapist stuck in a session, I suggest switching your framework to examine the “Four S’s™” – meaning the “four states or scenarios that can regulate a PDAer’s nervous system.” Screens Safe nervous system Special interests Sensory seeking/novelty/dopamine Please don’t read this as “you should use screens,” but rather as an objective observation of the following pattern: if a PDA child or teen is not on a screen, then we have to prioritize the other 3 S’s – another safe nervous system, sensory/dopamine/novelty or special interests. This will help you make decisions to find more peace in the moment and find clarity in your next right step.