I met my first friend diagnosed with autism in 2000. His name was Jacob. He was about 4 years old at the time. I’d never heard of autism. I’d never heard of Early Intensive Behavioral Intervention. I was just a college kid who was told about a job that sounded like “a mix between education and psychology” (my two fields) and showed up.
I walked into his basement, a large space with a full kitchen, huge swing hanging from the ceiling, and more flashcards than I’d ever seen, not knowing what to expect. I was suckered, conned, manipulated into loving little Jacob from the beginning. I’d have loved him with my whole heart without any of the fanfare.
One of his current therapists introduced us. Jacob couldn’t speak, but he crawled into my lap and touched my face and made a series of adorable squeaks and looked into my eyes.
The therapist assured me he “never did this with anyone.” I was sold. (Two weeks later, when our next therapist joined the ranks, I learned Jacob did, indeed, do this with everyone. The cutest lie I’ve ever been told.)
We worked our ever-loving tails off with this kid. Truth be told, looking back, there is so much more we could have done. We were a team of undergraduate females, reading study after study and doing all we could. We didn’t know what we didn’t know.
All throughout undergraduate, Jacob was part of my life. I took him trick-or-treating on campus, carefully guiding him and instructing girls in the hall to speak quietly and move slowly. I took him to parks and to my off-campus apartment a few times. I adored his face and his personality. He was a truly terrific kid.
When word gets out that there are a few girls working with kids with autism in a rural community, others find you. I started picking up other cases. Harder, more varied cases. Teaching language, but also teaching reduction of problem behavior, self-care and daily living skills, you name it. He wants to ride a bike? Okay, we can do that. He can’t tolerate a toothbrush in his mouth? All right, we’ll make a plan.
When I found myself, at age 22, pulled from my student teaching practicum (in kindergarten music) to help the small school district devise testing strategies for their students with special needs, I realized how great a need existed for quality services and education for these kids. And I, or no one I knew, really knew how to provide it.
I graduated and moved across the country to enter a Master of Science in Applied Behavior Analysis program. Within the first weeks of school, I started to see all I didn’t know. I started to learn about the field’s research, the field’s holes, the field’s (young) history.
I’d scored the job I wanted as practicum. I was working in an early intervention clinic. The kids I spent time with were mostly age 5 and under and I was lucky enough to spend my days teaching them to talk, go “pee pee on the potty,” and play tea party with same age peers. I collected data day-by-day, hour-by-hour, on their improvement. I tweaked and changed programming if it wasn’t working for them. I loved it.
I got to know their moms and dads. I got to learn about “parent training,” and how to help the families have an easier time with routines at home. I wasn’t perfect at it. I wasn’t a parent. I didn’t understand yet that life was not a lab.
I didn’t understand that certain skills develop at certain times, and that teaching a 3-year-old to tie his shoes is a poor goal and needs to wait another couple years. Those lessons came later, with my own children and further study in child development.
By the time I was 24, I’d amassed experience working with over a hundred children. For some, I’d been a team member. For others, I’d been a program creator. For still more, I’d been a family support.
And then I did a wild thing. I started a company. I always had this feeling – “if I teach others how to do this, we can help more kids.”
So, we did. We opened clinic after clinic. We started to look toward new states. We advocated for insurance coverage for our little friends’ care. We studied “typically developing” kids so we could figure out what our patients needed to know. We held hands and we cried and we celebrated with amazing families.
And I learned a few things.
1. Create things that work in actual life.
When we write up a beautiful teaching strategy for a kiddo, we want everyone to implement it to perfection. What a lovely idea that is not always practical. In our beautiful, controlled environment, we can often achieve it. In actual life, we may not be able to. Our job is to help the family find strategies that work in their real lives.
2. Parents are power.
Our kids who have made the most strident outcomes have generally had the most involved parents. When we are a team, when everyone shows up every day to do their best for this kiddo, that’s where the magic happens. These parents are in it 24 hours a day. We get the privilege of spending significant time with their babies, but all the therapy in the world doesn’t touch the perseverance and love of these parents.
3. Each child is different.
There is no magic playbook for autism. There is no magic playbook for parenting. The child before you, regardless of their diagnosis, strengths, or weaknesses, needs you to see your child. They need you to plan for him. And it might not look at all like their neighbor’s plan.
4. Focus on the CAN.
It is heartbreaking when we focus on what a child is lacking. Each of our children has cool capabilities. Sometimes it’s work to uncover how they think, but it’s worth it. They can do more, feel more, than we sometimes know. We need to teach them to be able to express it.
5. Both skill and compassion are musts.
I’ve known people who are wonderful scientists, but just don’t get the human piece of this work. I’ve known people who are caring and kind, but lack the technical skill to be a good resource. I’ve been blessed to hire hundreds and hundreds of people who can do both.
There is no better feeling than being a contributor to a child’s success. The personal nature of our work allows us to see the joys and challenges of these families’ lives up close and personal. I’m so glad I responded to the call all those years ago, and have now been afforded to be part of tens of thousands of stories. To the families with a member on the autism spectrum, you are amazing. And I’m grateful to and inspired by you.