The First Time My Autistic Daughter Played with Me
This is the story of how my daughter played with me for the first time ever at five and a half years old. Emmy* is autistic. At five and half years old, she was bright, even-tempered, and very attuned to the emotions and attitudes of people around her. I cannot, for the life of me, understand where the stereotype of autistic people being oblivious to the emotions of others comes from, at least not in Emmy’s case. Even as a baby she became upset when others were, instantly sensed her family members’ frustration when she rejected their affection, smiled and laughed when I was in a good mood and watched me warily when I was not. She just wasn’t sure how to act on those emotions, and as a result was apprehensive in the presence of anyone but the most familiar of people. Reading social cues just wasn’t intuitive for her.
Emmy liked my mom (her grandmother) and myself; tolerated her sister, father, and other grandparents with mild annoyance; and seemed indifferent at best or fearful at worst of most other humans. I wanted a way to help her make connections beyond myself, beyond the waiting arms of her family, and hopefully onward to her own, authentic friendships someday.
At five years old, Emmy and the rest of the world faced the beginning of Covid. She was set to start kindergarten in the Fall of 2020. It went alright for a few weeks, and then the quality of Emmy’s virtual kindergarten took a nosedive in November. Our county decided to offer in-person instruction again, and expected the teachers to manage not only the kids who were in the classroom, but also the kids on the other side of the computer screen. On top of that, Emmy’s teacher had elected not to return to in-person instruction because she had high-risk family members. She was not allowed to teach virtually, and after several weeks no replacement, not even a temporary substitute, could be found. The classroom aides did the best they could in a bad situation, but that is what it was: a bad situation.
We got a brief uptick in instruction quality after winter break when the school returned to full virtual, bringing her teacher back into employment. But in March 2021, when the school announced they would go back to the blended learning environment, I decided not to repeat that fiasco. Emmy was reading above grade level and had reasonably good math skills for her age. But she wasn’t able to participate in many of the “softer” learning skills around history, group chats, or virtual art class. I thought now would be a perfect time to focus upon those soft skills so she could be better prepared for re-entry into first grade. I officially pulled Emmy out to homeschool her the rest of her Kindergarten year.
The standard recommended course of therapy, Applied Behavioral Analysis, was not an option for us: I was hesitant to enroll her in such a program due to the vocal opposition to ABA from autistic adults. When I found out our insurance wouldn’t cover a single hour of the prescribed forty hours per week it fell far outside of our price range, too. I was forced to look for alternatives.
What I found, and what I want to share with you today, is Relationship Development Intervention. In a nutshell, RDI focuses on nurturing the social relationships that Autistic kids sometimes struggle to build. RDI promised to teach emotional referencing, social coordination, flexible thinking, contextual thinking and creative problem solving, and strengthen the use of hindsight and foresight. These were all skills with which Emmy needed help. So I bought the textbook and started reading. It said you would see dramatic changes within the first thirty hours of therapy — an intriguing promise. That very day I saw an opportunity to start our first RDI session. I tell you the truth when I say I saw a dramatic change in the very first hour. It was like Emmy had been waiting under the surface for me to pull her up whenever I had the necessary tools.
Our first session used one of Emmy’s favorite toys: Marble Run: a series of tubes and chutes you can build into different configurations, and then you drop a marble in the top and watch it race down. We had, that morning, built a large run on the coffee table that had several different starting and ending points. Using the activity called “I Lost my Voice” in the RDI textbook, I wanted to see if we could play together, in a social way, without me saying anything. “I Lost My Voice” is a very adaptable activity from the “Novice” level of the RDI curriculum. RDI has six levels, reflecting the various skills achieved and still needing work. The Novice level is first, and it focuses upon the most basic building block of relationships: social referencing. At this level, the focus is just getting the child to reference their coach (the preferred term in RDI for the parent/teacher/therapist teaching the social skills) for social information. One way to do that is to decrease your verbal prompts, or lose your voice. By not giving rote commands, the child has to be engaged in the search for information. This is why play is so important: the search for information also has to be fun, or else there is no point in searching it out.
I sat down with Emmy and surreptitiously took all the marbles in my hand. She looked around for them on the table, and then looked to me inquisitively. I smiled a big smile at her, and held a marble in front of my nose. It is important to note I was not trying to force eye contact, but I did want her to take in my whole face, see that I was the source of the marble (and the fun), and that I was smiling because I enjoyed our activity together. She smiled back and took the marble, and put it through the run. I gasped excitedly and laughed when the marble hit the drain (which had always been Emmy’s favorite part). She glanced at me and smiled again. I clapped excitedly when the marble hit the receptacle at the end. Emmy let out an ecstatic vocalization and looked right at me, clearly excited that I was sharing in the moment. I took the opportunity to sneak the loose marble back into my hand. Emmy did, indeed, look to the table first for another marble, but quickly looked to me again, expectantly. We repeated the sequence and within minutes she was looking to me to supply the marble, even if I had left a few in the receptacle. By no longer talking, I was making space for Emmy to connect with me in our Marble Run game.
After a few rounds of just handing her the marbles after referencing me I bumped it up a notch. Once Emmy had the marble I pointed to the starting funnel I wanted her to put it in. She had a favorite, so I started with that one because I knew she would want to put it into that one regardless of direction. I pointed excitedly to the funnel, and when she dropped it in I clapped and cheered. The next time I handed her a marble, I pointed to a different funnel. She looked at my hand, hesitated briefly, and then chose her favorite funnel. I slumped, made an exaggerated frowny face, and sighed.
“MOM-my…..no be sad! It dis one!” Emmy exclaimed. While not non-speaking, Emmy usually did not have much to say beyond making her wants and needs known, so I was surprised! She hadn’t complied with my request, but that wasn’t really the point of the exercise. She had acknowledged my feelings, and attempted to make it better with the best explanation her limited vocabulary could offer. Two more rounds of me pointing to different funnels ensued, with her still picking her favorite. Finally, my sad faces got to her. On the third try, she reciprocated pointing at the funnel I had picked, and dropped the marble into it. I clapped and laughed, and she clapped and laughed, too, sharing the joy of the moment.
And joy is exactly what made me so excited to start RDI on the same day I started reading the book. The introduction was filled with phrases like “joyful collaboration” and that, after implementing RDI, your child would “smile and laugh more…appear more ‘alive’ and natural and show more enthusiasm.” Who wouldn’t want that for their child?
I also appreciated that the author spoke of Autistic individuals in a way that assumed capability and worthiness, instead of pathologizing their behavior. “We believed that many people in the Autism Spectrum were capable of participating as true partners in authentic emotional relationships,” the introduction ends, “if only we provide a means for them to learn about and experience it in a gradual, systematic way.” I knew Emmy was capable of all that, too, I just needed help getting there.
We built referencing skills quickly with the marble game. Soon I was showing her, using my fingers, how many marbles I was going to give her. An unexpected and delightful bonus was Emmy’s increased verbalization. She started requesting how many marbles she wanted. I would confirm by holding up that number of fingers. Sometimes I would be silly and get the number wrong, which delighted her.
“Next four marbles,” Emmy would say. I would frown in concentration and hold up two fingers with a questioning face.
“No, silly mommy. It four!” Emmy would giggle. I’d hold up three fingers, “No…four!” she’d insist and giggle more. I’d hold up four fingers. “YES!” she’d say, and hold out her hand. We’d smile at each other as she took the marbles. I may not have been speaking, but we were having a true conversation, with back and forth turns and an exchange of information.
Emmy started requesting different colors, different building pieces, different marble sequences, using more and more language as I used less. We would giggle and be silly. We were playing. Together. A truly shared, reciprocal game (not just one in which I entertained her) for the first time in her life. It was magical.
Changes Over Time
Not everything worked. She hated the “What’s in my Hat” game, where I would take an item out of a bag (or your hat) and use it for its not-proper use. For example, making a pretend phone call on a shoe or turning a belt into a pet snake. She also hated the “Sneaky Pete” game, where the coach attempts to make some minor disruption to a game and the only way to stop their disruptive progress is to look directly at them, causing them to freeze. So we left those by the wayside and tried others. The customization of RDI is one of the aspects that makes it so appealing.
At the time of this writing, we are thirteen months out from our first Marble Run session. After a few months, Emmy progressed to the next level, Apprentice, and even dipped her toe in some Challenger activities. To be honest, defined RDI sessions haven’t been a part of our routine for several months now: not because we outgrew it or we stopped seeing results — quite the opposite. The base relationship skills at the core of the program: emotional referencing, communication repair, improvisation, social memories, have become infused into our daily lives. They are constantly being taught and reinforced. And it shows: Emmy and her little sister play pretend games together now, something that was not happening a year ago. Her play has become more creative. That “What’s in my Hat” game? Emmy doesn’t call it that, but she is using the flexible thinking that was at its core. She uses objects like paper clips, pencils, scarves, and pillows outside of their prescribed uses all the time now. She actively seeks not only me but other people out to share a joyful experience, whether it is finding a cool bug or playing a favorite game. I am excited for her to return to school in the fall, because I think she is now capable of the reciprocity needed to make and sustain friendships.
In short, RDI kept the promise made in that introduction: Emmy does seem more alive, more joyful and enthusiastic. She laughs more, smiles more, and includes us in that happiness. Like any family, we have our hard days and rough patches. And we still have quite a ways to go: Emmy has physical challenges around hypotonia (the medical term for low muscle tone, a common co-occurrence with autism) that have impacted her self-confidence and willingness to take risks. Her language still lags behind that of her peers, but she is making gains every single day. RDI has given us the basis to tackle whatever challenges we may face in the future: a household of joyful collaboration.
*names have been changed.
Annie Newman is a stay-at-home mom educating two children: one neurotypical and one autistic. You can join her Patreon to access many of her custom-made learning tools and follow her day-to-day learning on Instagram.