I am often asked how I communicated prior to learning to spell out what I want to say on a letterboard or keyboard. This seems like a trick question to me. While I didn’t use speech reliably to communicate in my first 25 years of life, I had a vigorous internal conversation with myself. I often asked and answered questions in my head. I observed a lot and commented silently. I was unhappy at times, but mostly when I was judged to be intellectually disabled, or when things were decided for me.
As I look back on my early period of communicating fully, I had to learn which thoughts to say “out loud“ and what to continue to keep to myself. This was confusing at first and caused me anxiety. I felt too revealed if I shared my inner thoughts. I had become comfortable being invisible. It took me quite a while to trust my family enough to share my thoughts “aloud”. I also used my newfound communication skills to play harmful and manipulative mind games, such as the times I had one of my staff convinced that I could read his mind. It showed me the power of words indeed, and also tainted our relationship. I had not learned the social conventions around speech, because I hadn’t needed to. Figuring it out required practice and trust.
I feel fortunate sometimes that I don’t have the pressure to respond in conversations because I can’t use my mouth to speak. It can be difficult to participate in mealtime conversations. It’s a matter of logistics, not desire. I use a fork with my right hand, and my pointing finger is on the right as well. My communication partner also sits on my right and generally is more interested in eating delicious food than in holding the letterboard or keyboard for me. Also walking with friends and family and spelling at the same time is challenging. I can just be an observer. Other times, I do want to jump into the fray. The fact that communicating by spelling or typing or using AAC takes longer is an advantage in my opinion – time and patience that everyone needs to exercise. Slowing down is a good thing. My communication is limited only by YOUR patience.
Looking backwards, I am so grateful to have parents who chose hope over despair, listened to their eyes and ears instead of autism experts, and had the patience, courage, determination, and financial resources to assist me in becoming able to say whatever I want. I know that I am privileged to be one of the approximately 1% of nonspeakers who has this gift of full communication.
Looking forward, I want to be able to use a letterboard or keyboard on a stand. I know that I will still need a Communication Regulation Partner to support me emotionally, prompt me to maintain focus, help me to modulate my level of activation, and by voicing what I type. It’s important to me to accomplish this.
In addition, I feel that I have a responsibility – to continue raising my voice to ensure that my generation of nonspeakers is the last to be deprived of access to full communication and therefore has limited agency, autonomy, and inclusive participation in society. Communication is the key that opens nonspeakers’ lives to possibilities of our choosing. It is our fundamental right.
P.S. I still have robust conversations in my head – like everyone else!
Editor’s note: How wonderful that Ben talks about what his thinking was like
before he began spelling! (I invite the spelling community to explore this topic
further, since each of us has experienced differently how words and thought have
operated pre- and post-spelling.) Ben also zeroes in on important communication
dynamics, not only how new spellers must learn the social rules of conversation,
but also how our listeners must learn to slow down to receive our words patiently.
I love how he, like so many spellers, uses his past to reshape the futures of other
nonspeakers with his advocacy—let the inspiring words of his final paragraph
(before his P.S.) reverberate forward!! – Nick
ABOUT BEN CRIMM
I am autistic and apraxic and have anxiety. In 2017 when I was 25 years old, I started using a letterboard to communicate. I celebrate the first day on the road to full communication as my milestone bonus birthday, because my life was born anew then. It took me more than a year to become proficient enough to carry on conversations with my immediate family and another year to feel comfortable talking with friends and people I did not know. I have a full and rich life with good friends, fulfilling work and a loving family.
I live in the Philadelphia, Pennsylvania suburbs with my mom and dad. I have a part-time job working as a Non-speaking Coordinator for the Spellers and Allies Advocacy Network, the advocacy branch of the International Association for Spelling as Communication. I also work with my nonspeaking colleagues in SEEN (Spellers Empowering Education for Nonspeakers) to raise awareness in the Philly area about the abilities of nonspeakers.
I love to take walks, hike in the woods, take canoe rides, eat good food (thanks, Mom!), listen to mysteries on audiobooks, Zoom with family, hang out with friends, and play Scrabble with my
Grandma (who I beat only rarely).
Leo in Bloom Magazine 
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