Leo in Bloom Magazine

I am autistic, through and through.  I am not thrilled about it but I cope pretty damn well. I see many kinds of interventions to help kids who are identified on the spectrum and I am old enough that many interventions of today didn’t exist when I was young.  I did not have targeted interventions until my family moved to Pennsylvania.    My parents did their best managing to save me from Lovaas-like experts who had the better promotion programs than other true humanist therapists and educators.  I enrolled in a new program for autistic children at Devereux in1975 when I was seven.  Dr. Deslauriers tried a playful approach to engage me, but I don’t think in retrospect he expected much of me.  Gradually I became aware that my body and mind didn’t collaborate.  Taking a long time I finally was able to decode what people were saying but even when I understood something of what others said, I couldn’t respond in a way the others in my life could receive.  Sometimes I misunderstood others’ speech or emotion and I raged.  Mostly I grieved. 

I heard the word autism only when my parents and their friends were talking about me but I didn’t have a clue what that meant.   I could tell my parents were worried about me.  I couldn’t grasp what the matter was but guessed it had something to do with autism.  My experience in school and therapies didn’t help me understand my predicament.  Nobody tried to tell me what was going on in my being.  Therapists and teachers seemed to think I had little capacity to think about my life and the challenges I faced.  The assumption was that I had limited ability to think and learn.

I was glad when I moved back home.  My mom tried to explain things to me like my dad’s work that took him on trips away; before long I got that my parents couldn’t tell what I understood but they still talked to me and had lots of meetings with other parents whose kids had similar challenges to mine. I listened in when I had a chance and got the idea that autism was something involving the nervous system and made it hard to make my body do what I wanted it to do.  It made it hard to comply with directions from others.  But it still was a mystery to me why this was my fate.

I had a good adolescent experience, both in school and in family. I was encouraged when the Intermediate Unit teacher tried to show what I could do. I was enrolled in a program for autistic middle school students. I had teachers who thought I could learn and mine the world for understanding. I began to be aware that others having similar challenges belonged in a category called autism and the adults teaching us had ideas about how to help us learn.  That was new.  Having someone in authority believe you were intelligent was huge. I especially feel appreciation for the teacher who invited those of us who hated the cafeteria to come to his room for lunch in peace and quiet.  He played classical music that I just loved and taught us the composers and the names of pieces and what they were about.  I learned so much! I still enjoy listening and going occasionally to orchestra concerts. 

Getting into the world after school, working, finding I could do things and getting started with especially facilitated communication happened all at once and my consciousness expanded dramatically.  My dad’s friends, who were helping people leave institutions in Pennsylvania by introducing them to facilitated communication, offered to teach me FC. 

The threesome came for dinner in spring of 2000 when Bill Clinton was running the first time and after dinner introduced me to FC starting with a big chart and asking me to point to words. Then they moved to a keyboard, seeing I could point intelligently with support.  At the beginning the guy facilitating my pointing had to isolate my pointer finger until I could control it myself.  I suddenly had a way to communicate with words! 

I got to talk with my parents.  I got to talk with others– the doctor, my pastor, my friend Marla who lived with us.  I got to try out jobs.  Facilitated communication kept me engaged with people and various topics like politics and religion and the human service system. 

Today I am learning to point to letters independently without physical support.  This is very hard work, retraining my brain so I can spell to communicate in a way that means it is undeniably my voice that is spoken by the computer program.  I have figured out that autism is my burden but I am coping and thriving.  Being human is a matter of playing the hand you’ve been dealt, grabbing all the supports you can, expressing your intelligence and feelings with all the eloquence you can find in your heart.  I am hopeful because I am still learning and growing.  One day I will be able to express myself with all the power and authority of one who speaks.

Editor’s note:

It is an honor to share this piece by Matthew T. Leonard, one of my seniors in life, autism, and communication. The generations before me had to exist in a landscape with far less information on autism. It is truly a contrast to today. Many who used Facilitated Communication faced the disastrous loss of support in the nineties, and still fear losing it today. For clarification on my own stance: FC is a valid form of communication. It is indeed more vulnerable to improper implementation, but many of my friends use it with reliable communication partners. I am aware of the limited research on it. It is not representative nor particularly well analyzed.

Anyway, Matthew’s journey in life as an autistic man shows how we must travel in our existence as disabled humans. In our own understanding and acceptance, in the various interventions brought to us, in our communication, in how the world sees us. It is not an easy trip! But we make it, thousands and thousands of us. Pilgrims. Thank you, Matthew, for sharing your story! – Danny