There’s a new organization that supports people with autism spectrum disorder (ASD) on Staten Island. CrimsonRise, founded by four young adults with ASD, is helping nonspeaking children and adults with autism understand that they have a voice—and their voice matters.
Based on the North Shore, CrimsonRise was founded in 2021 by Cristofer Puleo, Nick D’Amora, Tejas Rao Sankar and William Jusino. The idea for the organization was born after the four young men were introduced to something called “Spelling to Communicate” (S2C). This method of communication allows a nonverbal person to acquire the ability to point to letters on a letter board or keyboard and spell words to communicate thoughts, ideas and feelings.
According to the International Association for Spelling as Communication (I-ASC), S2C teaches individuals with motor challenges the purposeful motor skills necessary to point to letters to spell as an alternative means of communication. I-ASC also trains people to become registered S2C practitioners who teach the method to their students.
A Spelling to Communicate Lesson
Spelling to Communicate is used in various organizations throughout the country to help individuals with ASD express their thoughts through spelling. New spellers learn to access communication by pointing to letters on a board. But that’s only the beginning of the learning process.
There’s a whole progression to the S2C method, executive director Lakshmi Rao Sankar explained. Lessons start off with practitioners asking questions that are easy for new spellers to answer, but then get more complex as time goes on and lessons continue. Each practitioner works one-on-one with a student.
“One of the practitioners would be assigned to a child, and it’s usually assigned by an intake team,” Lakshmi explained. “We match the practitioner with the profile of the student coming in.”
A spelling session at CrimsonRise is typically one hour, once a week. But, just like most things in life, practice makes perfect. So the more spellers work on their skills, the better they’ll get at communicating.
CrimsonRise: Supporting People with Autism on Staten Island
The four founders of CrimsonRise were overjoyed after discovering S2C. After many years of being nonverbal, they were finally able to express what they were feeling to friends and family. But they weren’t content with limiting their communication to a small, though loving, group of people. Together with allies of family, friends and S2C practitioners, they formed CrimsonRise to help others who can benefit from the program.
When cofounder Nick D’Amora broke through his silence, he advocated in public in front of many audiences about his capacity to spell to communicate.
“I need parents to hear us, to listen to our words, to believe this is possible,” Nick said. “Your child can have a new beginning too.”
The other cofounders followed his path, and soon the group became fast friends.
Co-founder Tejas, who is also Lakshmi’s son, spent 17 years as a non-speaking person.
“Before I became a speller, I gave up on providence to come to my rescue,” Tejas said. “I thought I would live my entire life unknown by anybody but myself.”
Tejas’ silence, along with other behaviors he displayed, led Lakshmi and others in the field to assume he was cognitively impaired.
“I didn’t know that he was fully capable and cognitively following and comprehending everything that was going on around him,” Lakshmi said. “
S2C changed these assumptions and Tejas is now communicating and thriving.
Meanwhile, Lakshmi started the journey to become an official Spelling to Communicate practitioner herself, so she can help others who want to achieve what her son did.
“These four young men began to communicate. When a person who has not had access to communication begins to communicate, there is literally nothing that compares with it,” Lakshmi explained.
Cofounder William wants other nonspeaking people with autism to know that CrimsonRise is available to help.
“My story at CrimsonRise will inspire others,” William said. “Teenagers who struggle with their confidence and spellers older than me who wish to change their perceptions of themselves, I want you to know all is not lost. You too will communicate.”
While the founders aren’t practitioners themselves, they mentor others in the program who might need a little help and encouragement along the way.
“I’ve been spelling to communicate for over six years,” cofounder Cristofer said. “Im a mentor, a writer, an artist and founding leader for CrimsonRise. I want others to have the same opportunities I’ve been afforded.”
The Mission
The organization’s mission, according to its website, is to serve those who have autism with “sensory, movement and communication differences by presuming competence and providing communication access and regulation support.” Ages 3 and older can enroll in the program.
Led by an executive team including Lakshmi, Susanne Cannella and Lindsay Morgan, CrimsonRise has a full team of registered and trained S2C practitioners. Both the founding and executive teams work in tandem on the everyday operations of the organizations. But it was the founding team who came up with the name “CrimsonRise.”
“They noticed that Harvard has a magazine called Crimson, and so they decided to go with that name. And because they believe they are rising, they chose the word rise,” Lakshmi explained.
Other Services at CrimsonRise
In addition to S2C, CrimsonRise offers other programs to support the ASD community. Fellowship groups, for example, are open to all. They’re a forum for group interaction, teamwork, relationship-building and learning.
The Studio is a day program for spellers that runs all year. A semester-based system offers a rotating curriculum that provides knowledge and skills applicable across all disciplines, including topics of general interest, as well as socialization, communication and independence skills. Participants can learn about pop culture, be part of a book club, enjoy fitness and wellness and so much more.
To learn more about CrimsonRise, including fees, programs offered, enrollment information and more, visit the organization’s website at crimsonrise.org. Parents can also call 929-643-9101 or email [email protected] for information.
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