Oisin - Advocating for Non-Speaking Autistic People

In this episode we share time with Oisin, a young autistic advocate who is working to improve the education system for all autistic people. Oisin is non-speaking, so Noel, Oisin’s carer, read the answers that Oisin wrote to our questions.

Oisin shares his thoughts on advocacy for non-speaking people and how we should all challenge our assumptions about people who communicate in different ways. 

Transcript

Welcome And How You Will Hear

SPEAKER_01 0:10

Welcome to the Middletown Podcast. I'm Kat Hughes, I'm researcher at Middletown, and I'm also autistic. In this episode, I shared time with Oshin, an autistic advocate who's working to improve the education system for all autistic people. Oshin is non-speaking, so I shared questions with him in advance and he used OrPM, that's a rapid prompting method, to type out his very beautiful, thoughtful answers. Noel, Oshin's carer, then read out Oshin's words. That's who you'll hear on this episode. Thanks to Noel, to Venny, Oshin's mum, and to Deirdre from Middletown for helping to organize this. Above all, of course, thank you to Oshin for giving time and energy to share his perspective. I hope you enjoy his words.

Oshin On Regulation And Strengths

SPEAKER_01 0:49

So I'm so delighted and thankful to have Oshin's words on the podcast. And so I want to start by asking, can you tell us a bit about you and your interests?

SPEAKER_00 0:59

So Oshin's response to that question, Kat, is the way I will describe my character is a young adult trying to make his way in a world that is very challenging for me to navigate. The most difficult task is for me to regulate my body, to enable me to achieve the goals that will enrich the life I so desire. Sometimes I'm frustrated, having no control of my negative thoughts. They interrupt my daily life, making it hard for me to focus on important situations and tasks. I try to implement strategies to help. This is something I need to persist at. The interests I have are connected to my intelligence. Hearing and listening are my super strengths, enabling me to retain and understand information. The discovery of RPN supported me to prove my intelligence and my retention capacity. Other interests I have are limited because my body has a desire to spontaneously dance to its own tune, not in sync with the thoughts furling in my intelligent mind. The truth is inevitable. Structure of my life is dictated by the autism diagnosis restricting my life. The other most important interest I have is related to helping other young adults in my situation by educating and informing professionals about the challenges of having an autism diagnosis. The vision of young adults displaying invasive body mannerisms portrays an illusion of lack of intelligence, understanding, and the ability to contribute to society in a valuable, meaningful way. Proving my intelligence has changed my life. Now my mission is to prove that RPM is capable of changing many lives if professionals embrace it and believe in its power.

SPEAKER_01 2:48

That's wonderful. Thank you so much.

Advocacy And Misread Intelligence

SPEAKER_01 2:50

I'm aware that you're passionate about advocating for autistic people, particularly in accessing education and opportunities that are meaningful to them. Can you tell me more about that?

SPEAKER_00 3:00

My life ambition is to advocate for young adults with a diagnosis of autism that are having difficulty advocating for themselves because of their circumstances, that may not have they may not have access to a functional method of communication that really supports their important internal thoughts that are masked by their spontaneous intrusive body movements. Society has the wrong opinion about autism. Most people falsely interpret the motor function that we display to mean that we are intellectually challenged. For success, this mindset needs to change. People in a position of professionalism working in the area of providing opportunities to neurodivergent individuals need more awareness about the severe talent that live alongside a diagnosis of autism. We also possess amazing strengths that, when supported and channelled, reveal very intelligent, insightful, capable individuals. Having a group of professionals that fully realize an individual's potential, their sensory and motor challenges, crippling anxiety that is often prevalent in people with autism, can lead to a true and altered understanding of neurodivergent people that the world previously misinterpreted.

SPEAKER_01 4:17

Absolutely. Nodding away vigorously to all of that, most definitely.

Fixing Education Beyond Segregated Units

SPEAKER_01 4:22

What would you like to change about the education system?

SPEAKER_00 4:26

The education system in Ireland is not tailored to suit young adults with a diagnosis of autism. The altered environment of segregated units designed for teenagers does not meet their complex individual needs. The function of successful units requires strategies that integrate age-appropriate education with functional support for teenagers that have challenging, personal, undesirable, uncontrollable movements. Professionals, teachers, and support staff need to congregate to discuss and design individual maps tailored for each student who is compromised so they can complete a meaningful education. Having a diverse character is not something that professionals need to repair. Diversity is something that requires deep understanding. An inclusive environment to facilitate educational opportunities for students with the most complex challenges has to be a priority. The biggest misconception is the underestimation of these individuals, especially individuals with limited verbal ability. The assumption that the lack of ability to speak is correlated with the lack of ability to think on an intellectual level is an injustice. The system that is in place requires some changes.

SPEAKER_01 5:43

Most definitely.

Anxiety Memory And Being Understood

SPEAKER_01 5:44

And what do you think people need to understand better about autistic people?

SPEAKER_00 5:49

General mainstream population need to realize our complex makeup. Combination of mannerisms that don't align the chaos of the autistic brain, the disconnect between the brilliant brain and a body that has its own agenda, ignoring commands. We possess unique strengths, but our complex mannerisms resemble very challenged bodies that falsely portray the inability to think on an intellectual level. We see life through a different lens. The environment sometimes dictates our mood and actions. Each individual has varied strengths and challenges. Personally, I have exceptional abilities. My hearing is way above the average level considered normal, making it possible for me to hear far beyond what is considered possible for neurotypical people. I have a brilliant memory that supports my intelligent brain, but sometimes betrays me, making me overthink and obsess about my complex catastrophic existence, serving to overwhelm me. Nothing designed by humans has helped to resolve this heartache in that moment. Severe anxiety is common among neurodivergent people, making life excruciatingly difficult to navigate, contributing to the downfall of some. Individuals with a diagnosis of autism need to be acknowledged as the capable beings that they are valued equally in the eyes of all humans, like our savior intended. Altering the minds of people is a mission that my savior has bestowed on me, a difficult vocation that I am determined to attend to.

SPEAKER_01 7:22

Wonderful.

Hope And Persistence For Autistic Youth

SPEAKER_01 7:23

And then what advice would you give to other autistic young people?

SPEAKER_00 7:28

The most important advice is to never give hope. Believe in the power of hope. Salvation of individuals with autism lies in the hands of professionals that have come to the realization that some people with autism have special talent and ability if nurtured properly. My younger life and torturous hopeless thoughts of captivity in a body that couldn't reveal its intelligence was a penance I became accustomed to. The revelation of RPM gave professionals a view of the devastation of a life crippled with autism and also the ability hidden within. My unexpected, present, altered situation, is testament that hard work and self-belief has revealed intelligence that has awakened some professionals to the possibility that the reality is that neurodivergence does not mean lack of ability and intellect. It means intellect is a treasure deep within bodies that's sometimes present in a state of dysregulation, lack of control, tested and that appear disconnected. The crucial moral of this tale is persist despite the barricades. Almost believe that happiness lies in having the strength to keep fighting for equal rights, in the belief that in time, your adult verge of people are knowledge parallel to neurotypical individuals.

SPEAKER_01 8:50

That's a wonderful answer. Thank you.

What Educators Can Do In Storms

SPEAKER_01 8:52

And then my very last question for you, because I know we'll have a lot of educators who are listening. So, what would you like educators to know about supporting autistic children with their emotion regulation?

SPEAKER_00 9:03

The crucial ingredient is that first a botany needs to be formed between the two parties, the child and educator. This important connection in the relationship requires the educator to completely understand the challenges of the student. Sensory, motor challenges, communication, most importantly, something that has a massive impact on many students, severity of anxiety that is prevalent in some children. When this anxiety invades a vulnerable child, it impacts every sense they possess, causing undesirable, uncontrollable outcomes that only serve to upset students and educators, and also impact the child's ability to progress in that moment. There is nothing an educator can do when an impulsive, upsetting episode occurs, only have compassion. When a student gets dysregulated, the educators are give time alone to regulate and not form negative judgment or opinions about the situation. When the storm passes, don't show any animosity towards the child. What I found most helpful in my life, when overwhelmed by my emotions, was an acceptance of my diverse character by a select group of people. For me, what has also helped alter my thinking about previous situations that overwhelm my senses was using my intelligence and educational information to understand life's challenges that presents for me. The insight and empathy that is required to support, work with, and design individual plans for children with autism so that they can reach their potential. It's only possible if professionals and educators fully understand and accept their students' neurodiverse traits. And I believe this can only be achieved if the bonding process takes place first.

Closing Notes And Where To Find Us

SPEAKER_01 10:47

Thanks so much for listening to the podcast. This is a conversation-based interview designed to stimulate thinking and hopefully support the development of practice. It's not intended to be medical or psychological advice. Views expressed in these chats may not always be the view of Middletown Center. If you'd like to know more about Middletown, you can find us on Facebook and Instagram at Middletown Center for Autism. Go easy until next time.