Longtime Wilton resident Laurie Collins is sharing a deeply personal story about her 20-year-old autistic son’s newfound success in communicating.

Collins says people like her son, with limited, unreliable or unintelligible speech, are commonly described as “non-verbal” but are often extremely capable of communicating through other assisted or augmentative methods.

Spelling to Communicate, or S2C, is one such method that Collins has found to be a game-changer for her son. GOOD Morning Wilton spoke to Collins at length about their experience.

“It has been nothing short of amazing,” Collins said.

In simple terms, the S2C method teaches the skills needed for a non-speaking individual to point to letters on a board to spell what they wish to communicate. That requires rigorous gross motor skill control by the individual, aided by prompts by a trained practitioner. The eventual goal is for the individual’s motor skills to progress to typing on a keyboard.

Non-verbal vs. Non-speaking

Collins says the term non-verbal is not the best descriptor for individuals like her son. She uses the term non-speaking.

“Non-speaking is not the same as non-verbal,” Collins said. “Non-verbal implies there’s no thought.”

“One of the important tenets of S2C is presuming competence,” she continued.

Unfortunately, Collins says, people often assume non-speaking individuals like her son do not have intellectual ability.

Collins explained that her son’s receptive language skills are intact, meaning that he understands what is said to him, along with his cognitive ability to formulate thoughts and ideas. He also has reading skills. However, he lacks the motor skills needed to form speech.

Recalling meetings with staff at her son’s school, Collins said, “I always remember saying at PPT meetings, ‘He’s in there.’ There’s so much going on in his brain that he just can’t get out.”

“He doesn’t have the ability to take [his thoughts and ideas] and speak them,” Collins said.

Basic Communication vs. Open Conversation

In large part thanks to technology, a number of tools have enabled non-speaking people to communicate on a basic level, such as iPad applications or other augmentative tools.

However, Collins says those often fall short of communicating anything beyond simple needs and wants.

“The thing is, he’s never really been able to explain things, like if he doesn’t feel well or if something is bothering him. It just doesn’t translate on the iPad.”

As a parent, Collins always worried, “What if something is really wrong and he just can’t tell us?”

Caution for a Vulnerable Community

Collins told GMW about several specific examples where S2C has helped her son to communicate his thoughts to her, though she recognizes the method may not be suitable for every individual.

Indeed, the S2C method has its critics. Many experts, professionals and caregivers in the autism community are deeply skeptical about the validity of S2C, due to a lack of scientific research supporting broad-based conclusions about the effectiveness of the method. Collins acknowledged there is only a single peer-reviewed study that firmly supports positive findings about S2C.

A number of groups, including the American Speech-Language-Hearing Association (ASHA), have issued position statements strongly opposing “facilitated communication” techniques, including S2C. The opposition stems from a number of studies that discredit facilitated methods as inherently flawed and influenced by the conscious or subconscious bias of the facilitator i.e., the practitioner or caregiver.

There is also concern that the method could detract attention or resources away from conventional speech therapies, or in the worst case, that some unscrupulous practitioners could take advantage of families desperate for a way to communicate with their non-verbal children.

Collins understands the skeptics, but is focused on her own son. Keenly aware of the potential harm from false hope, she initially approached S2C with low expectations, but felt she didn’t have anything to lose except the time invested in taking her son to an experienced practitioner and learning the method herself.

What she observed in her son after starting the S2C program greatly surprised her. Still cautious, she waited nearly a year to be convinced what she was seeing was real, before speaking about the method outside her household.

“I’m watching him slowly start to communicate. It just seemed pretty unbelievable… I can’t un-see what I’ve seen,” she said.

Collins was so moved by what she observed she is now currently in a training program to become an S2C practitioner, through the advocacy group, I-ASC (pronounced “I ask”), the International Association for Spelling as Communication.

According to the I-ASC website, the mission of I-ASC is to “advance communication access for nonspeaking individuals globally through training, education, advocacy, and research.”

Collins says more research is underway and believes the results will validate the method. In the meantime, she welcomes local families to contact her to discuss more about the method and her experience with her son.

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