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Presence with a Purpose: Autism Acceptance

Autism Acceptance Month

Sheila Spraggins, MS, CCC-SLP, senior clinical empowerment manager at Presence, explains how meaningful it is to connect with an Autistic child and to join their world—and reflects upon the person who taught her this and inspires her every day. “I am Marc’s legacy,” she said of her cousin. “He lives on because I can help kids like him.” This story is dedicated to Marc and Autism Acceptance Month.

Who inspires you?

I didn’t know anything about the work of a speech-language pathologist (SLP) until I went off to college. It really connected with me for a reason.

My cousin Marc was in his early teens at the time and wasn’t speaking much at all. It wasn’t until later in his middle school years when we started to hear that he may have autism. He grew up in the 1980s, and autism wasn’t widely recognized back then.

When Marc was a young child we didn’t know what to do. I had been Marc’s regular babysitter. He was a sweet boy who didn’t speak like children his age which concerned our family greatly.  He could only communicate a single word or repeat lines from movies. He engaged with our family by sharing lines from movies but he couldn’t have a spontaneous conversation or answer simple questions. When I learned about what SLPs do, I was excited. It was also around the time when understanding of Autism Spectrum Disorder was increasing.

Although it was my desire to help Marc, I didn’t get a chance to work with him because he passed away while I was in graduate school in Wisconsin. He had a tooth procedure done, and the tooth got infected. No one knew he was suffering because he couldn’t communicate that something felt off. One day he wouldn’t get out of bed and had spiked a high fever. By the time he got to the hospital, sepsis had already set in. He died while I was on my way home to Canada to see him.

Although I was away for school, we were so close; it was devastating. Because of his condition I was inspired to be an SLP. Because of him I am doing what I am meant to do.

Tell me more about him and his experience.

Marc loved movies. He would recite the Karate Kid movies verbatim. We would bring up a movie he loved, and that’s how we connected with him. Finding that connection was so meaningful—not just for him, but for all of us.

Unfortunately at school he was teased and bullied a good deal as many kids didn’t really understand why he was so different. Despite the lack of friends at school, he attended school every day and remained loving and kind.

Some Autistic people are often described as “living in their own world.” As a family, we were able to figure out what it was to connect to Marc’s world. Marc was 17 when he passed away and by then had started communicating in phrases.

How does this shape your work today?

When I am working with students I focus in particular on figuring out their interests and favorite items and using those items in therapy in some way. Establishing that connection with them is so important.

When I work with Autistic children, I work with their parents very closely. Through my interactions, I feel the parents’ desire and pain to connect with their child. We work together to find that connection. It is quite exciting once we have that breakthrough. We use that as our foundation to build language and social skills. Once we have a better understanding of what makes the student “tick,”  we are able to join their world.

What are your sessions like?

I’ve worked with so many kids via teletherapy and believe these services could have helped Marc. Many kids really engage with the technology. When I work with students initially, I show them the many interesting activities we can do together: sing, read, play games, and  engage in many other interactive activities. Many young students enjoy singalongs and fingerplays. I have so many options to engage them having a powerful Presence platform to work with.

I can design personalized content and experiences around their interests  in order to keep their attention and motivation. With non-verbal students, I show them pictures of their choice of activities, and they can pick which ones they want to do by pointing. Over time, the student will start requesting their favorite song or story or activity, verbally. It is very powerful to have them motivated to achieve their speech and language goals.

Some of my assignments were to provide therapy while the students are at home. Parents typically observe the sessions. They have become partners in helping me select materials that resonate with their children and  they reinforce the skills we are targeting. I share with them links to the different videos and activities I utilize in therapy so they can continue the carryover of skills outside of therapy.

Have you seen teletherapy work well for students?

Yes it can be very powerful. Some kids take longer than others to get into therapy, but eventually they warm up. One mother told me at first she wasn’t sure teletherapy was a fit for her Autistic child but she was willing to try it out. Initially this little girl would not look at the screen or sit through a session. With the Presence platform, I was able to adjust my screen size as needed so she could see my full face when working on eye contact or make my screen smaller when we are looking through books. The platform was so versatile, it  allowed me to deliver services that best fit the student’s needs as we made steady progress during the year.

In the first month she had a five-minute attention span, then would need a break. She would go play piano for a few minutes and then come back for five more minutes of therapy. By the end of the school year she could participate in a 30-minute session with me without interruption. Her mom was shocked that her daughter could sit through 30 minutes and complete our activities—read through a book and answer questions from the story she heard. She was also able to develop sentences with picture prompts. Teletherapy worked for her child.

Early intervention is so important for Autistic children. Early intervention not only gives children the best start possible but the best chance of developing their potential. Having the versatility of being able to deliver services at home or school in pre-K and beyond is particularly important. Parent education and training is essential to allow them to utilize strategies and result in positive changes in their child’s social and communication skills outside of their child’s therapy sessions.

Anything else to add?

I am grateful to Marc for the career I found, and the work I get to do. He lives on because I can help kids like him. I am Marc’s legacy.

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