People with Autism are not Dogs: Fostering Personal Agency
“She (and I) are fine with the idea that she simply stays living with us, dependent on us forever.”
I was walking my black lab, Maggie, this morning along a routine route in a beautiful wooded area. She was off leash, as it is an area where that is okay. She roamed about, always staying within 10-20 feet of me. She would notice if I stopped, come when I called her, and sit upon command when needed due to a car going by. And when we got to a point where we usually continue on, I decided to turn back. She looked at me as if to say “What? We always go this way! Where are you going?” But all I had to say was “this way,” and point. And she not only joined me but with all the enthusiasm that a lab has to be with their person.
My partner and I worked very hard training Maggie when she was little and still continue to do so even though she is now 3 years old. I am trained as a behavior professional in the use of Applied Behavior Analysis. (For those of you who are ABA folks, I’m old enough to have seen some of the original forms of ABA used in the autism world in addition to the developments over the years. I chose not to go forward with my BCBA certification but I know and use many aspects as appropriate for child and family.) The similarities of training Maggie and the use of ABA techniques is of course, strikingly similar. We taught her all of the usuals plus a few “parlor tricks,” as a colleague used to call them. Maggie is very food focused, so it was easy to gain her compliance and she learned fairly easily – just as there are some children who are very motivated by particular reinforcers and will learn what to do for access to those reinforcers (e.g. ipad time, spinning toys, or small candies).
Now, what is fundamentally different between a wonderfully compliant dog and a person? Well, I’d liketo introduce you to the beautiful human drive called “personal agency.” People want control over their lives. We want to make our own choices and understand how those choices impact ourselves and the world around us. We want to feel control and agency that is personalized to us. When Maggie turned on a dime to be with me instead of continuing on our routine walk, she demonstrated the difference between a human with autism and a dog. We all know or have heard stories of the person with autism who knows maps and directions better than we ever could. They strive to control where and which direction to go, sometimes resulting in embarrassing, painful, and/or scary behaviors. Maggie does not have the drive for her own agenda to be first and foremost. Sure, we trained some of that out of her early on but her drive to follow me, her source for food and love, is much more important to her than her drive to explore and leave that safety. She (and I) are fine with the idea that she simply stays living with us, dependent on us forever. We have no aspirations of her growing up and leaving home to live on her own, finding her own way in the world, making decisions for herself. But guess what!? This is not the case for autistic people! We need to be guiding our children with autism to not only comply when it is important to do so but also to follow their own inner voice, trust themselves and their decisions, and to explore new horizons safely. We need to guide them to discover and embrace their own personal agency in ways that work not only for themselves but for those around them. The seed of this growth toward independence is called personal agency.
A human baby relies completely on his or her caregiver for food, warmth, and safety. Then as the toddler develops, he learns to stretch his wings and try things out, referencing adults for safety and certainly still relying on them for food and warmth. Entering childhood, there are more moments of exploration without adults present and/or knowing every move while expectations for self-care become natural and a source of pride. A child begins dressing himself, making her own choices for clothes, and demonstrating more and more of her personality with others. Once a person enters teen years, they have an increased level of independence and responsibility that are sources of both pride and frustration. Humans need that sense of personal agency to grow from complete dependency into fully functioning independent adults. A sense of agency guides a person to consider, plan for and achieve personal goals.
In many current autism interventions, we highlight compliance over personal agency. I might go as far to say that we are afraid of supporting an autistic person’s sense of personal agency. We are fearful that if left to their own devices, that they will continue with the narrow interests and lack of social engagement that are the core symptoms of autism. But this is not what I am talking about. I am talking about the absolutely essential element of a child, teen, or adult with autism learning that their voice and actions matter. This feeling of competency that she can successfully control what happens to her, will carry her into each new phase of taking on more and more responsibility and being willing to experience failure and recovery for learning who she is in this world.
Planting seeds of personal agency
It is in the little moments that the seeds of personal agency can be planted. The moment that you offer a choice in a way that is truly understood and heard by the person with autism (offered slowly, deliberately, and with visual support). The moment that you recognize, encourage and celebrate a person’s idea that contributes to the greater good, no matter how small or different it may seem. The sometimes unpleasant push you provide for a teen to have a new chore responsibility or to cook for the household once per week. The moment that you only do ½ of the work of something and wait patiently as the individual picks up the other ½ without being specifically cued to do so. These are all wonderful moments that nurture the personal agency in a person with autism. You may have to research more about what types of things that a child, teen, or adult should be doing at what ages, or consult with a developmental specialist. This will help you with targets.
Stay in the zone
Now, the two biggest mistakes I see are either (1) pushing too hard; or (2) not pushing hard enough and giving up. In child development, we must think about what is called a person’s “zone of proximal development” (which was a term coined by Vgotsky, if you wish to learn more). If we push too hard and the person feels failure, we have only spotlighted that practicing personal agency can result in failure that feels awful. The person is not likely to try again due to feelings of incompetence. Conversely, if we give up and stop pushing at the early signs of struggle, allowing someone to stay in their “comfort zone” we give the clear message that the person can’t work through minor struggles toward personal agency and secondarily, we don’t believe they can. The trial and error cease and again, feelings of incompetence come to the forefront. Instead, we need to find that sweet spot in the middle, where a person is challenged just enough while also being supported to be resilient and open to more and more practice.
Celebrate their interests
Another manner in which to support and guide a person’s personal agency or confidence that they can make decisions for themselves in their own lives, is to take an interest in their interests. Again, I can feel your (the reader’s) trepidation when I say that! You are afraid to open Pandora’s box of special interests. But imagine for a moment that you were meeting someone for the first time or even meeting with a long time friend and they told you to stop talking about something that is near and dear to your heart – something you have studied and enjoyed to your core. Would you be offended? Would your confidence take a blow? I would think it would. Mine certainly would and it happens from time to time. (Come to find out, not everyone wants to hear about every detail of my work and the interpersonal neurobiology of autism interventions). However, I have other outlets for discussing my special interests. I have learned where and how to dive deep into those. I have and am fulfilled with people in my life who do listen and share some of my enthusiasm for the subject… and I write blogs for anyone who will listen/read! So why wouldn’t we do the same for a person with an intense interest in something super specific? Instead of shutting it down, we can guide them to find an appropriate channel for it. Listen deeply enough to discover with that person what really feeds their curiosity about that subject – then you can guide them to discover new avenues. This guides their personal agency. It tells that person that their ideas, their thinking, their processing matters and that you are there to guide that personal drive to work for them in this world. Shutting the topic down is very different than guiding a person to understand when and where a topic can be explored.
If we are surprised that adults with autism are lacking motivation, drive, and success after choosing, again and again, to focus on compliance and solely adult led interventions, we are missing the boat. If we think that the anecdote is to allow full control and we follow the child’s lead, we will not be doing due diligence in guiding them in the realities of the world – including safety and our family values. We must be balanced in our approach to parenting or guiding a person with autism with a specific emphasis as early as possible (but starting at any age), on fostering a sense of control and agency. We can plant the seeds in small everyday moments if we stay in the person’s zone of learning and engagement.