The Power of Presuming Competence
Topic Description:
Many Autistics, especially those who are non-speaking, face presumed incompetence on a daily basis. It’s not uncommon to hear things like “Autistics have a very low IQ” or “you’ll never have a job”, assumptions that say we are incompetent without looking to see what we can really do. How do we navigate and self-advocate to build communities that presume competence for all Autistics and support and empower us to contribute to our fullest potential? Learn from two non-speaking Autistic siblings about how they have challenged presumed incompetence through the use of AAC
Mother’s Introduction:
Hello everyone, I will only take a couple of minutes, as the focus of this conference is Self-Advocacy and we want you all to hear Mark and Max’s authentic voices.
My name is Indu and I’m their mother. Mark is here with me today. Max made it to the parking lot and decided to return home because of his social anxiety. I am very proud of how hard he prepared for this conference.
When Mark and Max were first diagnosed, I was surrounded by professionals and experts who strongly recommended therapies that did not Presume Competence. Quite the opposite! Deep inside I knew my children were already perfect the way they were. Yet, I could not figure out how to fully hear their voices and needs.
One of the top Autism doctors in the country told me that they had the most complex combination of Autism in her entire client list. Over time, other experts also closed their doors on us. Not coincidentally, my children’s responses to “therapies” was minimal to none.
I really craved giving them a voice and also constantly looked for ways to keep them happy. Looking back now, I know that I have been knocking on the wrong doors for 15+ years. It was a constant battle between my instincts and what I was hearing from established experts and I wish back then that I had the confidence to say no to them and the right formulas to unlock their voices.
My learnings over the last few years about Autistic abilities, their depth of empathy, their hopes, and fears for their future awakened me to recognize that their dreams, struggles and pains were bigger than my own parental fears. In this way, my children have taught me enormous patience and humility and a way to look beyond my own stress, and I have dedicated my life to supporting these beautiful souls in every way I can.
From Mark and Max:
Hello everyone, this is Mark and Max. Our mother Indu and our friend Atticus will serve as our voices today, but what they say mirrors our own feelings, insights and thoughts.
Preparing for this presentation brought back many joys and memories from the last couple years after we started to communicate. We are so grateful we found our voices, since then we made countless gains.
Presuming Competence is easy for some but impossible for others. Some people automatically know and trust our intelligence. Others will continue to question our competence until we stand up and challenge them back. With some, it has been exhausting to keep proving that we are not dead inside.
Presuming Incompetence is detrimental for everyone. But as you all know, this happens to Autistics on a daily basis. The impacts were worse for us because as we are non-verbal we had no means to push back against this presumption for many years. When we were little, we were diagnosed with severe low-functioning and non-verbal Autism. Until we reached ages 20 and 16, our limited expression created huge communication barriers between ourselves and those in the world around us.
As a result of our limitations, we failed on almost all traditional tests and teaching methodologies and were thought to be less intellectually curious than our neurotypical counterparts. Even our mother, who always believed in us, only saw rare glimpses of our abilities and did not fully understand how much we knew or how to connect with us.
My mother was told we were mentally retarded as we always tested below 1 percentile in standard testing. This is all so false. We are very creative in terms of how our brains work. All we needed was for those around us to consistently Presume Competence in us and join hands with us to explore how we can communicate and operate best.
In 2017, we were finally introduced to RPM, FC, Poetry and AAC – even more importantly almost everyone teaching us presumed competence in us, else our mother would do her best to remove us from that situation. We started communicating via a keyboard, we began to grant others a view into our true thought processes. Our goal was to prove that although our bodies could not operate at the level of our neurotypical peers, our cognitive abilities transcended these physical limitations. In fact, the mysteries, challenges, and abilities that we currently demonstrate cannot yet be well explained by Science or Technology or any particular source of truth.
Our brains are like super computers, endlessly firing neurons, but never boasting of our abilities to learn via non-standard approaches. In just a short time since being given the opportunity, we have gone from non-verbal and unheard to penning a prominent blog (www.growourjoy.org). We also started presenting at conferences and events.
We navigate our lives every single day by believing in ourselves and demonstrating who we truly are with courage. When we first started to type, we spent every waking moment thinking of what to say so we can explain to our mother what is happening with us. It was very hard for us to communicate everything at once — knowing how painful it would be both for us and our family. So this had to be a drawn-out process. While some hours and days were spent sharing happy and joyous feelings, others times we had melt-downs as we purged our bottled-up anger, frustration and grief. A full spectrum of emotions erupted inside us.
Our mother spent countless days and nights listening, learning and reengineering everything she was doing to adapt to what we truly needed. She has been very inspired to learn from us and other speaking and non-speaking Autistics about how we think and function. Her trust and understanding remains critical for us. The larger the community of people supporting us, the more our pain will ease as our confidence and self-esteem grows.
We are still healing, but miraculously, we have come a long way. As we heal our emotions, we feel better as our self-confidence also increases. In addition to our own writing skills, we also formed our own small writing group where we type with friends. And we have been learning how to help our parents and grandparents with household work.
We are both proud to be Autistic. The incompetence that people presumed in us created a well of hurt, sadness and pain.
Our physical discomforts and pain, our emotional imbalances and sensory dysregulation coupled with stress, anxiety and Autistic inertia are very high. In parallel, we think very differently. A combination of these and many other factors leaves us feeling very different and confused on how to fit into an imbalanced world. “Making us” fit does not work a majority of the time.
The more we were taught in ways that we could not benefit from, the more frustrated, angry, agitated, traumatized, self-abusive and aggressive we became. To people and experts looking at us from the outside, we looked like we were trapped in helpless and flailing bodies struggling to cope with life. While being non-speaking only exacerbated our challenges, on the inside we were always doing our best to listen, think and learn.
Imagine living a life where people around you, including a majority of your Autism teachers and those who were labeled experts or “professionals,” assume you do not understand what they are saying, keep repeating the same basic lessons countless times, and talk about your incompetence to your face? Although they most often did this from misunderstanding who we were on the inside, this only made our pain and agony worse than it already was.
For approximately 5 years during our teens, we also lived in a group home. During that time, the number of people who Presumed Incompetence in us greatly increased, leading to our behaviors getting worse. The impact was higher for Chetan and he was eventually dismissed from his group home. Though challenging, it was the best thing that happened to us. We not only returned to our parents’ home, but also got introduced to all the support that has brought us this far.
Our experience and expression of sensory inputs and emotions can be very deep and intense. At times, we translate our bottled-up emotions and expressions as agitation or aggression towards others. These behaviors have been hard on others, but even harder on us.
Please listen to our hearts and not the disharmony between our brains and bodies. We understand our limitations are at times significant and our uneven intelligence confuses people and leaves them in a place where they don’t know how to react and support us. Even if our needs are high, please don’t let us down.
We would like to share a related poem that Chetan wrote, literally the same week when he first started typing. Some of you may have already read this online.
Earnestly Apologizing for my Autism Aggression
Poem by Max Eati
Limelight in my life growing in my heart. Myriad of ideas trapped in my brain.
Fried by my soul crimed with anger. Operating in shame minced in grief.
Nipped my heart drained my spirit. No one knew how deep it hurt.
Braved my heart to awaken my soul. Pinned myself to feel other’s pain.
Loaded with empathy mopped with love. Trained myself to cleanse my anger.
Visualized a peace-loving life. With no one hurt in the end.
Tiled myself to listen to others. Sailed so long without enough rudders.
Limped this far. Forgot my life was hard. Ripped my soul To find my heart.
Kindly see my view. Eloquent is my love. Never judge my life as molested by anger.
Weary and tired I know no fault. I kindly wait for forgiveness by all.
Listen to my heart know what I mean. I love one and all in sadness and joy.
Kindly smear my heart with your love To allow my soul To rest in joy.
We already waited too long in our lives to communicate, please do not continue taking our voices away from us. People are underestimating our struggles to even communicate with support. It could take each of us months or even years to become fully independent in communication.
There are many people who will believe in us only if our communication method is “scientifically” proven. This again goes back to standard ways of testing and trying to prove things which we are not good at. Would you rather have us communicate and have a life or wait until science and experts validate, understand and accept this methodology?
Some important pointers:
Consistently PRESUME COMPETENCE. Trust and understand Autistics. The deeper the trust and respect, the easier it is for us to open up.
Follow our lead. Find ways to encourage us to add value and contribute. This helps with our self-confidence and self-esteem.
Remember that behaviors are a form of communication.
Creating a new Community
As our journey is not over, we are dreaming of the day that we can be employed and also live in a community where Autistics and Neurotypicals can complement each other – a community of interdependent relationships where all parties not only rely on each other for support, but also maintain their own autonomous identity.
With the support of others in the autism community, we launched ‘Autism SIBS Universe (ASU)’, a nonprofit organization. The vision for this non-profit combines a co-housing model with private independent homes connected to or in close proximity to common spaces where neighbors and community members become part of our extended family for the long term. Our hope is to develop a sustainable solution for Autistics and their families — who may live in constant fear of safety, isolation and financial sustainability after parents are unable to care for them anymore.
This will be a community that:
Neurotypicals learn how Autistics think and function and vice versa
Is accepting of all levels of Autism
Accepts and respects all forms of communication, skills and contributions
Autistic Voices are heard
Believes in the power of presuming competence
Directly listens to Autistics about our needs and wants
Allows us to learn and contribute in non-standard ways
Respects our strengths in spite of our uneven intelligence
Supports us with our challenges
Of course, we cannot do this alone and we are looking for community to help us achieve our dreams.
Discussion with Chris Martin
(Executive Director of Unrestricted Interest, who is also a friend and collaborator).
Chris: “What are the impacts of NOT Presuming Competence?”
Mark: The impacts are impossibly big. If there is a limit to human intelligence, this would’ve stopped the evolution of this world.
So I am creatively using my pain and fears in this life to fuel different ideas, to wake up people and to better understand the depth of human abilities.
Chris: “Do you ever think people who doubt Autistic intelligence are trying to protect themselves psychologically from the truth of their own prejudices?”
Mark: I create a barrier around myself, dreaming of a perfect world for myself and others, but then reality hits in my face, giving me opportunities to learn to navigate real life. In many ways, the pain amplified my drive to start self-advocating for myself and for others like me. I spent many years in silent captivity learning, exploring ideas and praying for a way to bridge the gaps between Autistic and neurotypical communication and misunderstandings.
Chris: “What do you think motivates the doubters?”
Mark: My experience states that they cannot fathom or accept the depth of autistic intelligence. It conflicts with their understanding of how human minds and brains should work. It takes more energy to learn than the doubters can give.
In parallel, it’s true that the intelligence we exhibit is uneven across different areas which makes the doubters further question us. However, there are countless examples of people who exhibit abilities to read and learn without being taught and “science” has yet to fully explain or understand how the brain works.
Chris: “Do you want to be seen as normal?”
Mark: No, I’m Mark. It’s too late for the world to define normal. That ship has sailed. Ignorance can be their bliss, but not my view of the world.
I have a question for the audience. Is there a definition for ‘normal’? If there is, then there is no acceptance of the infinite value that people who do not ‘fit’ the definition of ‘normal’ can bring to the world. We still have a very primitive view of life where a person is considered competent only if he/she fits a certain mold.
Chris: “Instead of presumed competence, which is essentially tied to normality, what would you rather have?”
Mark: Real depth and breadth of thought and diversity of human empathy. Allow us to fully express who we are inside and be open. The audience for that ship is still loading.
Chris: “What does it take to be able to communicate, knowing that your audience isn’t fully there yet?”
Mark: It’s frustrating, there are gaps in understanding, but I’m confident. I’m leading and preparing the stage for my own team. At the same time, there are a growing number of Autistic Self-Advocates in Minnesota and around the world who are working hard to educate people on how Autistics really think and function.
