City Speaks: My Journey to Presuming Competence
On April 10, I was honored to be invited to share a story with New City Players (NCP), for their story telling event, City Speaks Livestream- Shining a Light on Autism. The panel for this event included individuals on the autism spectrum, parents, and professionals in the field; and it was a wonderful evening aimed at spreading autism acceptance across our community.
When I was thinking about which story to share, I pondered, “what topic is deeply meaningful to me, that would also help advocate for those on the spectrum, and help open the minds and hearts from the community to better understand autism?” Within a moment it was clear, the story I want to tell, is my journey to presuming competence.
The concept of presuming competence is one that has changed and shaped not only every interaction I have with those on the spectrum, but also my career in working with individuals with autism and their families.
According to A. Stout, “presuming competence means to assume an autistic person has the capacity to think, learn, and understand—even if you don’t see any tangible evidence that such is the case. It’s assuming they are not inherently incapable; they just need the right supports and systems to help them succeed.”
The entire live streamed event was recorded and can be found below.
A transcript of my talk can be found below:
My Journey to Presuming Competence
Thank you for having me. Today I’m going to share 5 brief experiences that shaped my journey to presuming competence, my journey to knowing that individuals with autism are understanding so much more than often given credit for. I hope it will be as impactful for you as it has been for me.
Experience 1
My first-year teaching, I had a favorite student. … actually, I truly loved all of my students, but there was something special about… let’s call him Miguel. Miguel was 5 years old, had a label of ‘autism’, had very limited verbal skills and was in an inclusive kindergarten classroom, that was not necessarily the most effective learning environment for him.
He would sit when he should be standing, he liked to dance in the rain, he was kind and sweet. He struggled with the skills his peers did effortlessly (drawing lines and circles, cutting, and coloring). He would occasionally use utterances to communicate, but few resembled words. He somehow always knew when a friend needed a hug, and in the brief moments when we were actually able to engage and connect, it was magic.
I was his only classroom support and I was only in his class for only 2 hours a day… and that was only on the days that I wasn’t called out to a meeting or to sub for another classroom. Miguel s primary teacher was new as well and really, really needed the support. So did Miguel. So, I tried to be there as much as I could… even though I had 90 other students on my ‘caseload.’
One day, in early spring, I was having a particularly rough day. The kind of day only 1styear ESE teachers really understand. It was one of those, Horrible, terrible, no good, very bad days. I kept it all together… until…. At the end of the day I was in Miguel’s classroom and a plastic doll was flung threw the air, with my face ‘breaking the fall.’ That was it. I needed a minute. I looked to the other teacher in the room as tears started to swell and she nodded- knowing what I was going say. I never liked to leave a room without closure, so I announced, “I need to get some air. I’ll be right back”.
Before I could finish my sentence, Miguel leapt up from his chair and ran out the classroom door. I sprinted behind him thinking, ‘He never wants to leave the room. Of course, he chooses today for this… but how odd?!? …’
He ran down the hallway, out of the building, past the gate, and finally stopped directly in the middle of the PE field, where he stood smiling. After a beat I joined him in the center of the field, panting. I knelt down to his level so we were eye to eye, still trying to catch my breath. I placed my hands on his shoulders and asked in a desperate, panting sort of way asked, ‘why on earth did you run out of the classroom?’ not assuming he would verbally respond.
He looked directly at me and smiled. Took a deep breath and then he said, ‘air Toko, air.’ He then blew in my face, ever so gently and gave me a hug. Talk about chills.
Experience 2
I’m now in my 5th year of teaching and running a developmentally based school for kids with autism.
My fabulous students, at this point in time, were all working on goals like regulating their bodies, remaining engaged for up to 10 minutes, motor planning, and purposeful communication skills. Few initiated verbal language, but we had devices so that our student could share their basic wants and needs- thinks like ‘bathroom,’ yes, no, hungry, thirsty, etc.
I have to say that just because our students were ‘non-verbal’ however did not mean that our classroom was quiet. All staff, myself included, were constantly narrating what we were doing (to pair words with meaningful actions), ‘thinking out loud’ (to help the students to understand our thinking/ rationale), and since everyone learns best through meaningful experiences, we were constantly putting on ‘shows’ and creating experiences for the kids.
We were familiar with the term ‘presuming competence,’ and at the time interpreted it to mean that everything said in the room HAD to be ‘kid friendly’ and we would never say anything in front of one of our students that we wouldn’t say in a ‘neurotypical classroom.’
One day, we were in the middle of an ‘over/under obstacle course’ (OVER the chairs, now go UNDER the table) and a staff member ‘leaked’ a highly inappropriate, yet fairly hysterical joke. I wish I could remember what it was… but what I do remember is that all of our students started laughing hysterically in response to it. They laughed until they fell over- all of them. It was remarkable.
While usually I would remind the staff members to ‘keep it appropriate,’ I just looked at them- they looked at me, and we knew in that instant, that our students were comprehending far beyond what we had imagined.
So, then I started exploring. For example, I would ‘think out loud’ hmmm… I wonder if Pete’s mom remembered to pack his lunch. Pete immediately ran to his bookbag to make sure his lunch box was there.
The closer we watched our students’ actions and followed their cues, the more we understood that our students were understanding EVERTYING!
Experience 3
The following summer I hit the books, read the research, did a deep dive into unconventional communication methods and attended conferences.
On the first day of one of the conferences, I ran into one of my most trusted mentors - who knew my students - and was running a ‘model’ school for kids with autism in NJ. I asked if I could run something by her for her input…I told her, “this may sound nuts, but I think my students are really, really smart. I just can’t figure out how to really access what they’re thinking.”
I told her about the research I was doing and some of the controversial approaches that were coming up. She stopped in her tracks, looked around, then linked her eyes with mine and whispered: “yes. You are correct, your students are incredibly smart – so much smarter than anyone gives them credit for. The approaches you are mentioning are highly, highly controversial, however we have found they can be extremely effective when applied as part of a comprehensive program. We have been using one in particular for the past couple of years and it has transformed our school. We have someone on staff who focuses on this area, and she has the majority of our non-verbal students now typing- with support. After the conference I can put you in touch for a consult.”
I wanted to jump and down and shout ‘WAHOOO! I KNEW IT!’ … but we were whispering, and I was a little confused, but got the hint, and knew that I was on the right track and excited for what was to come.
Experience 4
Fast forward to the following school year. I was in the middle of the ‘dissertation phase’ of my Ph.D. program, and the Director of Education at the school.
After a great deal of negotiating and persuading, begging and pleading, we received board approval to have the supported typing consultant, Lisa, visit our school from NJ for 1 day. I felt certain, this was going to change EVERYTHING!
Finally, the day arrived. We started with a staff ‘Pow-wow’ and an overview of the approach:
“When we provide backwards resistance to a child’s wrist or arm, they are able to overcome impulsivity and motor planning challenges. The physical and emotional support allows the students to slow down and access what they want to say. The goal is independence, and this is a process.” She continued, “I want to make sure everyone knows that I have been doing this work for years and while it may look ‘easy’ when I do it, it is not necessarily an easy process. It’s kinda like playing a guitar- when you see someone great at it, they do it effortlessly. You think, I can do that, and you can… but it will take practice!
Then it was time for the fun to begin…My students were about to have a voice and I couldn’t wait. We called the first student in to type with Lisa.
Within the first 30 minutes, I was holding back ecstatic tears. The student surpassed all of the ‘goals’ I had planned for him- for the year. In 20 minutes with her.
The next student typed with her, “I can’t talk but now I can type to talk. I never met a person like you before.” He continued to let us know that he was more interested in politics than what we had been teaching him.
Another student excitedly typed the words, ‘I no dumb, I smart,’ and threw himself into his father’s arms. The father had just finished explaining to me that he did not think his son would be a candidate for this approach because he just was not smart enough.
The final student to type with Lisa was going through a lot. His mother, a lieutenant colonel in the army was about to be deployed to Afghanistan. We knew this was weighing on him, but without a reliable way to communicate with him, we never knew how much he was understanding about the transition. When it was his turn to type with Lisa, he sat calmly for over an hour and typed:
“it is not fair that she (meaning mom) is going away. Get the President to get her off the ‘going list’ then send his kids away from their mom so she can go to fight his fight in faraway places. Tell other people to go, not my mom. The thing is, I think my mom wants to go, that makes me sad. Typing is really easy with you; how come I can’t type easy with other people in the world? I have never been so happy to be alive.”
I was in awe. Other than ‘yes, no’ and basic one-word responses, I had never known my students’ true abilities, interests, and ‘voices.’ This day shattered everything I thought I knew about autism and everything we did in our classroom.
Experience 5
I felt so passionate about the topic, and so confused as to why this wasn’t widely accepted, I became determined to make this topic the focus of my dissertation, even though I had been actively working on another topic for the past 9 months… all I needed was approval from my dissertation committee to make the switch …
So, I created a presentation for them which I called, “The kids are IN there: Giving non-verbal autistic students a voice.” I laid it all on the table for my dissertation committee. The remarkable possibilities, AND the controversy. They were hesitant, they hated there was controversy associated and encouraged me to stick with my current topic. I pulled out videotaped footage of my students typing with Lisa. They saw I wasn’t giving up.
Hesitantly, they approved a ‘1-year exploration’ of the topic. After a year they said, “bring us the research and a strong proposal. There are no promises. We will see what you have for us and re-evaluate this new topic in a year.” I left, leaping for joy! I can TOTALLLY do this! I thought.
I pursued the topic for 1 full year. I learned, I read, I consulted with experts, I attended conferences. I drafted a 62-page literature review and submitted 7 strong research proposal to my dissertation committee.
One by one, each and every proposal was rejected. At my final rejection, they admitted, your research is impressive- it’s just too controversial for the university to be associated with. I was devastated.
I realized that if I wanted to finish my Ph.D. program and get the degree, I had to switch the topic of my dissertation all together. The only way I could find the strength to start over with a new topic was to vow that I would pursue research and advocacy for this approach and the presumption of competence further, after I had the degree and credentials.
Since then I have certainly spread the message of presuming competence in everything I do but spreading the word about this approach was much more difficult than I had anticipated, especially after I left the school and went out on my own. The controversy and feelings behind it are strong and heated.
That being said, I can’t help but feel that today, in this moment, I am fulfilling the part of that vow by sharing this story, my story and the story of my students, publicly with all of you.
Thank you.