The ASD Nest Egg

strategies to support kids on the autism spectrum

The Most Important Three-Word Phrase

The following is the text from a speech delivered by NYU Professor Kristie Patten Koenig at the Doctoral Convocation Speech for NYU Steinhardt, May 11, 2017

First, on behalf of the faculty I would like to congratulate each of you for your accomplishments that we mark today. We celebrate your achievements, we welcome and thank your families and friends for their support, and recognize the perseverance and passion that brought you to this day. This is a moment, one of many moments over the course of your careers as researchers, educators, performers and professionals that you can look back and claim as part of your journey.

I am sure that each faculty member sitting behind me can remember this very same moment in their career and if asked could share other defining moments in their lives as a scholar as they examined their content area more deeply, engaged in a research project that yielded surprising findings, produced a musical piece or a work of art that took their own breath away, or questioned existing paradigms that foster oppression, sometimes revealing that their own work may have been supporting these paradigms.

If you will indulge me, I want to share one of my defining moments that falls into the last category. The message from this moment can be summed up in a three-word phrase that has served me well since my own graduation with a PhD in Educational Psychology. My hope is that it will be of some benefit to you as you enter the next chapter in your academic and professional lives. It is a three-word phrase that is rarely said these days. It is a three-word phrase that turned me in a different direction as an occupational therapist, as an educator, as a researcher and quite frankly as a human being. It is a three-word phrase that once you say it, if you reflect and then act, your work and focus must change. It has too. It is a three-word phrase that one rarely hears anymore, especially in the echo chamber of our current discourse. It is quite simply, I was wrong, and I hope you get a chance to be wrong too.

[ face palm emoji ]

Now I know this message may not resonate right now, after successful defense of your dissertation, or successful clinical placements, so let me explain.

As a practitioner I worked on the myriad of deficits that individuals with autism display. As a researcher, I began my career studying deficits and examined the efficacy of interventions on outcomes associated with these deficits. I was on my way as a confident newly minted PhD!

Early on I received a small training grant to develop materials to train behavioral health providers. By chance and inspiration we decided to interview adults with autism long before people were talking to adults with autism. We had no idea what information we would be able to gather as we traveled throughout the state, recruiting adults for interviews to help guide our materials that we were developing for children. My colleagues and I had the incredible fortune to interview several individuals who typed independently to communicate but were non-speaking. Each of these individuals demonstrated atypical behaviors associated with the core features of autism, flapping, aggression, self-injurious behavior, lack of eye contact, and often covered their ears when we arrived and rocked back and forth prior to the interview. I knew these weaknesses, I spent most of my professional life either remediating these weaknesses or studying interventions to remediate these weaknesses. I knew these behaviors. These were familiar deficits.

As each interviewee sat down at their keyboard and began to painstakingly type out their answers, their deficits were present but quickly overshadowed by their messages. I listened as the first college graduate in the state that was non-speaking typed out “I would like to write a book about disability and my experience using Foucault’s frame of normal.” I listened as a young woman typed that she wanted to be a “regular girl,” and before I could ask my follow up as to what she meant, watched as she encircled her left ring finger signifying a wedding or at least an engagement. I listened and watched as a young man, one who has deficits in empathy and perspective taking according to us experts, saw his mother grieving after her father, his grandfather had died, type out, “mom don’t bear you sadness on your shoulder, bear it in your heart where remembering can turn the pain into love.” A profoundly empathetic statement. I realized our simple communication systems we used were wrong. I realized that our IQ testing would not only get the cognitive capacity of these individuals wrong, but then our educational systems would program to that arbitrary number. I realized that by every professional focusing on their deficits, these individuals could not identify what their own strengths were. The system, and I as a part of that system had framed a language of deficit, a language of weaknesses, that was reinforced by society over and over again.

[ icon of strong person ]By listening, I realized I was wrong. We do not build our lives on remediated weakness, why are we expecting those we serve to build their lives on remediated weaknesses? We define and study lack of empathy in autistic individuals without even examining our own lack of empathy towards the autistic way of being. We focus primarily on a deficit-based model while giving lip service to a person’s strengths. How was I perpetuating this? Why was I studying all that was wrong versus what was right? How is society complicit in perpetuating a deficit narrative, and what is my role in not only challenging that paradigm, but overturning it. This is my frame now, it is essential to who I am as a human being, what I care about in research, and who I listen to. All because I was wrong.[ maya angelou quote: do the best you can until you know better. when you know better, do better. ]

So listen to those you have the privilege to serve and hear their voice. Challenge systems. Question from within. Partner with versus simply studying people. Disseminate your work to communities where it matters most. Listen and hear and listen some more. Change your mind. Go in a different direction. To paraphrase Maya Angelou when you know different, please, please do different! I look forward to each of you having those moments, moments that matter, moments that define you. Moments that you will look back and say because I was wrong, it made all the difference. Thank you and congratulations!!

 

Kristie Patten Koenig, PhD, OT/L, FAOTA, is Associate Professor at New York University, and Chair of the Department of Occupational Therapy. She is also Principal Investigator of NYU Steinhardt’s ASD Nest Support Project.

14 Comments

  1. Louise Link Saruk

    May 20, 2017 at 10:53 pm

    Just beautiful, Kristie. It made me cry. Thank you for all the good you do in this world.

  2. Thank you! These three simple words, while perhaps difficult to say, are necessary if we are to move forward in understanding autism. Offering augmentative communicate training at a level that leads to full communication of complex thoughts is possible if we change the way we are thinking about people’s potential, rather than relying on observations and making conclusion based on what we already believe. I was wrong about deficits in autism, but now that I know better, I will be different in my approach.

  3. this is what I have felt since I was a little girl. My first freind was a girl who was developmentally differnt. I always thought she was more normal than the kids who were in school with me. Thank you for your insights.

  4. Thank you from the grandmother of an amazing autistic young woman.

  5. Kristie, that was amazing and I thank you for being strong enough to not only say it but mean it! I am a mom of a young man with non-verbal autism as an attribute, he is finishing up his freshman year and on honor roll taking general education classes and will go on to college. I am also a doctoral student and my research is challenging the exact paradigm you speak of and focuses on the core issues of belief, value, attitude and the culture of public education when it comes to learners with autism! Would love to share my results with you when I’m finished (should be at the end of summer)!
    Take care, and thank you for all you do!
    Best,
    Rachel

    • Rachel, I would be very interested in seeing the results of your work as well! Since having a similar “I was wrong” experience, I’ve been working tirelessly day in and day out, against the current, to help bring about a paradigm shift in our understanding of autism. Please visit us at www(dot)optimalrhythms(dot)org to see our therapeutic day school, our summer camp, community trainings, and learn about our annual RethinkingAutidm Conference. Keep up the good work!! #rethinkautism

  6. Your admission to being wrong is the launching pad to future success not only for you but others in your field and other fields of study and services. No one has ever really had compassion nor a true interest for those they serve by statements such as “we have never done it that way nor will we ever.” I am so excited for our autistic friends and the blessings that are forth coming for us all due to their talents and gifts that have long been hidden!

  7. Kristie, thank you!!!!!
    People don’t know what they don’t know, but once they know there is really no excuse not to shift gears and go towards the truth. After nearly 20 years of serving clients on the spectrum from a behavioral/developmental mindset, I was challenged to consider the research related to movement differences in autism. I also was privileged to meet some individuals who type to communicate and who could express their true body struggles (dyspraxia) if only we would listen. Our special education system is in the business of a one size fits all approach, our IQ tests are only evaluating motor abilities, and the behavior/ABA trend has become a multi-billion Dollar business. All 3 are focused on deficits and miss the incredible gifts of non-speaking (or unreliable verbal) individuals on the spectrum- the true experts of autism. Motor and language are processed in very different areas of the brain. It’s possible to have language/cognition, without the motor ability to demonstrate what one knows. We must #rethinkautism!!

  8. as someone with autism, I just wanna say that this is great but it doesn’t get me the last 30 years of my life back. it took doctors this long to realize “hey, maybe we should treat ’em like people!” and honestly, it doesn’t look good seeing as a little over 30 years ago, folks like me were sterilized (without consent) by the medical establishment (here in BC at least; I know the US ended their eugenics programs a decade or so earlier).

  9. Yes! This is me as well! I’ve been a practicing clinician for over 20 years and clinical researcher and I discovered this same truth in the last 10 years! Thank you for your article. It’s great to see the rehab fields slowly recognizing a strengths-based approach to partnering with the disabilty community.

  10. marcia tewell

    May 30, 2017 at 8:43 pm

    I once read the book Normalization by Wolfensberger and came out at the end of the book saying that everything I know is wrong. My experience and education had taught me all about deficits and nothing about the sociology and intentional segregation of folks with disabilities. Education can do great damage that can take a life of forgetting, much like religions can do.

  11. I loved this so much! I am sharing it with my mailing list this weekend!

  12. You are truly a Force For Good in this world.

  13. Incredible words. This can be applied in many settings atypical and typical. Very humbling….so true we tend to focus on deficits versus strengths. Let the building and growth begin based on strengths!!!

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