Everyone has had those moments where they look back on their life and think, ‘If only I knew then what I know now, I would have done it differently.’ We all shift throughout our lifespan with changes in our perspectives, values, and beliefs. The Art of Autism has invited the autism community to share about these humanistic shifts in a series of blogs called The Autism Shift.
In order to recognize the power of a transformative shift, first one must acknowledge the previous state of being. My autism shift is a story of grassroots. I was an ordinary direct therapist running behavioral programs in 2001 when I started to notice the inadequacies within my field. Being a naïve 22 year old, I was certain that these inadequacies were temporary and that great change was on the horizon. However 15 years later, the cultural shifts within the autism community were not imminent or seismic by any stretch of the imagination.
Back then, I was a recent college graduate full of moxie and determined to make a positive difference. Regretfully, I might have actually done the opposite. My hope is that this blog serves as a cautionary tale to other young helping professionals that come in to the autism field. I hope that others may avoid some of these early career inadequacies because they affect real people.
If you knew me back in 2002 when I was transforming from child to adult, you might remember how elated I was when I got my first real promotion at my first real job. You probably already knew that I loved kids and I wanted to help yours. After one year in the direct care position I was advanced to supervisor. I took this advancement without question. With the high turn over rates within the field, a year was considered a long time. In hindsight, I really hadn’t mastered basic clinical skills and had no business taking that promotion. But there I was, at the ripe old age of 23, managing your child’s treatment and sitting you down for parent trainings. Sometimes I cringe, other times I giggle about what my training must have sounded like to you. Never would a bunch of behavioral strategies yield the type of experiences you longed for with your children!
I thought my training and one year of experience was enough. I didn’t understanding that no amount of training could replace the experience of being a mother. Back then, when parents asked me the question, “do you have children of your own?” I issued generic responses taught to me by my superiors. I used metaphors such as, the heart surgeon not needing to know what a heart attack felt like to be able to treat it. I tried to convince people I was credible with my Bachelor’s of Art degree in psychology. Looking back, I realized I sidestepped the main issue. Instead, I should’ve listened to the question and recognized what the concern was really about…. “Can I trust you with my child?” “Do you know how important she or he is to me?” I wish I listened to what you were really saying.
I preached to you about consistency, consistency, consistency. With the passage of time and two children of my own, consistency is not my main goal of parenting. Some days I come home from work and have the energy and presence to paint a birdhouse with my children. Other days, Mickey Mouse Clubhouse does the job of babysitter. Back then I didn’t get it. I wish somebody would have politely told me I was full of sh*t. I wish someone would’ve told me the concept of behavioral consistency is a poor substitute for more important human experiences like the parent-child connection, the ability to attune to your child and show him or her the meaningful constant in their life is your love.
In my new role as supervisor, I brought worksheets and Powerpoints to educate you. We sat at your kitchen table as I provided information on topic such as sleep. I set up behavioral programs and rewards chart for children sleeping in their own beds. I wonder if you could tell that I was judging you for having your six-year-old in your bed? With no lived experience, I shared what the textbooks said about sleep hygiene. Now, I look back at these conversations and shudder in embarrassment. Long gone are the days that I will counsel on sleep without being requested to do so. And when I do my message is simple…get as much sleep as you possible can; however you can do it.
But even before that promotion to supervisor, I saw problems with what I was doing. I just wasn’t sure how to change it.
I knew after my week of training at the agency I worked for that I couldn’t do ABA, PRT, DIR Floortime, DTT, handwriting without tears, Touch math, play therapy, and a host of other therapeutic interventions and administrative duties that were covered across a 40 hours. Yet, us newbie direct therapist said we were “trained” and we went to work with your child. I didn’t know what I was doing, but I did it anyway. Little did I know that it would take me a decade to become not only competent, but also proficient in a therapy (RDI) that fits my values.
In my first years as a direct therapist, I thought the goal for your child was to be “normal.” Even worse, I didn’t ask ‘why’ when your child exhibited “behaviors.” I was trained to stop the “behaviors” at all costs. Don’t question, just follow the treatment plan. I gave your child an M&M for “quiet hands.” My deepest regrets for saying this demeaning phrase even once, let alone hundreds of times. It sends shivers up my spine when I hear these words. I hate those words. They are words that other.
When things felt wrong, like keeping a two-year-old at table time, unimportant such as drilling colors, or I just plain weird like asking the same question 10 times, I did it anyway. I followed the status quo. I was told that this was the very best way to help children with autism. It sure didn’t feel like a dignified and humanistic way of treating another human being.
I used thousands of laminating sheets and Velcro strips to make activities for your child. Never did I think to look around and recognize what meaningful activities children could engage in outside of playing with plastic folders. Back then I didn’t allow myself to consider “what kind of childhood is this?”
I spoke in a terribly singsong voice to your child. I truncated my language to two word phrases. I asked question, after question, after question . . . after question. No wonder your kid sometimes cried or ran from me when I came to your door. Looking back, this is one of the things I cringe over most! I knew I sounded weird but this is what all my colleagues sounded like, so I continued. I have long since forgone this inauthentic communication and traded them for words that connect and empower.
I taught emotions through flashcards. Flashcards!! As if there’s not enough emotion being demonstrated in the world, we boiled it down to a 2-D picture. I didn’t know how to explore the nuanced reality of everyday emotional experiences. I didn’t know how to explore both mine and your child’s emotion so that we could both better understand each other and the world.
When I had questions, I went to my clinical director or supervisors. I didn’t ask you. So often in these discussions, the all so common parent-blame game started. How I regret these moments when I was taught to point fingers rather than look within and listen to you.
I wrote program goals copied from other program books that I’d seen before. I wrote them on little sheets and then taught people how to put checks and minuses in those books. I wish I had not only created personalized goals that were actually meaningful to your child’s current life and future, but also questioned the significance of those checks and minuses. I wish I had to courage to share what I was thinking “Do these goals really matter?” “Why is this important?”
Speaking of courage . . . boy did I need more of it! I listened to my colleague’s countless conversations about parents being “crazy”. Back then I didn’t have the courage to say, “Hey, wait, it’s not possible that this many people could be crazy.” Trust me, the statistics on the numbers of mental health cases in America don’t support the number of people I heard being called “crazy.” Furthermore, these so-called “crazy” moms were never given mental health referrals, which would be the appropriate response for any if someone were to have mental health concerns.
When parents like yourself questioned or offered constructive criticism, I’d answer with, “Well, you’re the expert on your child,” stated in the same condescending way my colleagues had previously used. Seriously?! I’m embarrassed to have ever uttered this phrase. Rather I should have allowed for an honest sharing of concerns. I should have leaned in and made you feel heard.
I thought it was odd or silly when we used to tell parents that we didn’t want their child to get attached to one provider. Sure I made excuses to stay on your case when the higher-ups wanted me to move on. I was attached to your child and your family. I regret that I wasn’t brave enough to state the real reason I needed to stay on the case was because of our relationship. I regret the culture of shame around becoming too attached to the families we treated. Now, years later, I cannot imagine having my five-year-old go off to school and not forming an attachment to those caring for her for six hours a day. I now know the comfort of having my child within the care of someone I trust. How could the autism field value generalization over meaningful relationships? I didn’t get it then and I still don’t.
I was afraid of saying “I haven’t,” and “I don’t know.” Instead I covered it up with, “I can.” I didn’t stop to consider how my lack of knowledge or lack of experience might hurt you, your child, or your family.
I allowed you to sit in the room and watch me do drills, thinking that you were learning something from me. I even watched you act like me. Yet, I didn’t ask you if this was helpful, if this was important to you, if this is what you needed to be doing with your time. It was the policy that parents participate in sessions, so I did it. And you complied…but I’m pretty sure you could think of far more valuable uses of two hours every day.
As the days passed, I started to shift. I developed the courage to treat by my values, to question the status quo, to slowly shift into who I am today. Its hard to even recognize that 22-year old that sat with your child at that small table. I’m grateful for all my mentors, continuous education, and meaningful experiences with autistic people that have contributed to my shift. Most importantly, I’m grateful that I stuck with it. I stuck with your kid and your family. I found what therapeutic style works for me as a clinician, and I worked at refining my abilities. I’ve married, had two children, and started a business of my own.
My self-reflection of the past becomes important only in the context of the future. My grassroots shift would not be plausible without the beautiful and varied relationships that I have with actually autistic people. My autism shift is a promise to those that identify on the spectrum and their parents who don’t deserve the inadequacies of our field.
This is my grassroots shift to authenticity in autism treatment:
I understand that trust between us will be built in small moments. I will earn your trust through my actions.
I will treat you and your family with the dignity and respect that you deserve. I’ll only use therapeutic techniques that I would consider doing with my own children, friends, and family. I will be thoughtful and respectful in my interactions. I promise that I will not be a part of othering you.
I will be vulnerable with you and hope you feel safe enough with me to do the same. This will be a risk for both of us, but I know it will make our time together authentic and meaningful.
I will allow you in to my heart and I hope to know your heart too. We will truly connect. Connection is what moves this world forward. Connection is a profound human experience.
I will continue to grow and improve so that I can be the best therapist I can be. I will look beyond autism as a way to expand my therapeutic lens. I will continue to read about self-acceptance, attachment, relationships, love, emotion, mindfulness, decision-making, creativity, and all the essential aspects of being human.
Foremost, my clinical decision making will be informed by people living and loving on the autism spectrum. With neurodiverse role models, I will encourage healthy autistic identity.
I will continue my grassroots shift and invite other to join me.