For most parents finding out your child’s favourite song or hobby only requires a simple question, for parents of Autistic non-speakers it is not so straightforward. However, thanks to a new form of communication many families are getting answers for the first time. One of these families is the Verhoeff family from Kamloops whose son Luke is a non-speaker.
Luke went “19 years without a voice” and found it “through a letter board” that allowed him to finally “show the real me”. He says “for the first time in my life the people I love are getting to know who I am inside. It's a beautiful thing. Many tears have been shed. It's overwhelming to have your voice unlocked. I'm stepping into a new version of myself. I am excited for my next chapter to begin. I need more allies to make change. I need better funding and more supports who are trained in spelling-based communication. I believe this is achievable. You can help voices flourish. Are you ready to be the change?”
Madison Imber of Mentoring Minds out of Calgary AB, is Lukes primary RPM (Rapid Prompting Method) practitioner. RPM is a communication technique that attempts to aid communication for people with autism and other related disabilities. Luke first met Madison in 2023 when she travelled from Calgary to Kamloops to work with him. Luke and his family quickly formed a life changing connection with Madison when Luke was able to openly communicate with his family for the first time.
Lukes' Interview with CFJC [VIDEO]
Lukes Website
Lukes call to action and advocacy work led Brittney Ritchie of Smart Options to pursue her Spelling 2 Communicate practitioner course. She will be bringing this form of communication to Kamloops to help more people find their voice and more families get answers to the questions they have always had.
Autism is a neurodiversity; a biological human difference in cognitive/neurological function. It is “characterized by challenges with social skills, repetitive behaviours, speech and non-verbal communication” (Autism Speaks). Research shows it is influenced by a “combination of genetic and environmental factors” and that each person on the Autism spectrum is unique with their own strengths and challenges (Autism Speaks). The term “spectrum” is used to reflect the heterogeneous nature of Autism. According to Canadian Public Health statistics 1 in 50 (or 2%) of children in Canada will be diagnosed with Autism (Health Canada).
It is estimated that around 1 in 3 people on the Autism Spectrum are non-speaking (S2C). This doesn’t mean they can't make sounds or use limited verbal cues, however, it does mean they cannot use speaking as their primary form of communicating (S2C). They may be non-speakers, minimal speakers or unreliable speakers.
A primary cause of being a non-speaker for those on the Autism Spectrum is Apraxia. Apraxia affects the brain and nervous system and impacts whether a person can speak or move in specific ways despite their understanding and willingness to participate (Medline). “Apraxia is the main reason that many non-speakers can’t speak reliably or at all. It is the most common reason non-speakers in our community have difficulty initiating their intended actions or maintaining momentum to follow through to completion. Non-speakers often appear not to understand words or instructions because apraxia gets in the way. Apraxia and sensory processing, and stimuli reactions often leave non-speakers in our community very misunderstood” (S2C).
Previous misconceptions led people to believe that if someone was non-speaking that it was cognitive and they had an intellectual disability or that it was a behavioural issue or lack of co-operation or motivation (S2C). However, in recent years it has been discovered that for many non-speakers its the disconnect between the brain and the body causing impaired motor function. In fact, many non-speakers are extremely intelligent and have a lot they want to say!
On the matter of presumed competence, Luke says “talk to me like a 19 year old, cut the baby talk” and “don’t talk about me in front of me, my voice should be central to these conversations”.
He says “they were so wrong about me” and he wants “to change that for kids like me”.
Spelling 2 Communicate is a way to facilitate communication by using trained practitioners and letter boards. For many non-speakers and their families, this is a life changing practice that allows for connection and conversations like never before. Imagine having a conversation with your child for the first time in 10, 15 or 20 years?! Learning their favourite things, future aspirations and thoughts, ideas and feelings, things you could previously only guess at.
Researchers from the University of Virginia used eye tracking technology to prove the agency of assisted autistic communication. Participants who had 2 or more years of experience using a letter board spelt “quickly and accurately, pointing to about one letter every second”. Researchers also observed common writing patterns associated with verbal communicators. While the letter board is not the solution for all autistic people, for many it is opening up the world of communication.
While Spelling 2 Communicate is widely practiced in the United States, there are less than 10 practitioners in Canada. This makes it extremely difficult to access for Canadian non-speakers and their families. Luckily, Brittney Ritchie, one of the managers at Smart Options is currently undergoing her training to become a Spelling 2 Communicate practitioner. Brittney will bring this service to Kamloops and the surrounding area, changing lives one connection and conversation at a time.
After working at Smart Options and working her way from employment counsellor to manager Brittney met Luke. Seeing the extraordinary impact it had on his life and his loved ones she knew it was something she wanted to get involved in. Throughout the training process Brittney will be looking for both children (6+) and adults who are non-speakers, minimal speakers or unreliable speakers and interested in going through the learning process with her, free of charge! Through this process, she will be supported by teachers and mentors.
If you would like to learn more about this process or have questions, Smart Options will be hosting an informational evening Wednesday, May 22 at 7 pm. This will feature Luke, his practitioner Madison and Brittney. This event will be held at the Smart Options office, located at 285 Tranquille Rd Kamloops BC. To confirm your spot Brittney can be reached by phone at 250-299-1536 or email brittneys2c@gmail.com.
For more information about Spelling 2 Communicate you can visit their website at https://i-asc.org/s2c-spelling-to-communicate/
Donate to Luke and his family to continue to access support from his communication partner
References
Autism Speaks. (2024) What is Autism? Retrieved from https://www.autismspeaks.ca/what-is-autism/
Health Canada. (2019) Autism Spectrum Disorder: Highlights From The 2019 Canadian Health Survey On Children and Youth. Retrieved from https://www.canada.ca/en/public-health/services/publications/diseases-conditions/autism-spectrum-disorder-canadian-health-survey-children-youth-2019.html#
Medline. (2022) Medical Encyclopedia, Apraxia. Retrieved from https://medlineplus.gov/ency/article/007472.htm
S2C. (2024) Spelling 2 Communicate; Let Me Spell It Out For You. Retrieved from https://i-asc.org/s2c-spelling-to-communicate/
Luke Verhoeff (2024) This is Luke. Retrieved from https://www.thisisluke.ca Madison Imber Mentoring Mind
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