When the words did not come

Luke Holzem sped from door to door, his orange t-shirt transforming him into a bright blur of 6-year-old energy. His grey-green eyes sparkled and he looked expectantly at his mother, Shannon. The question was clear: which of the numbered doors did he have to vanquish to get to his appointment at the Communication Aids & Systems Clinic (CASC) at the Waisman Center.

Luke’s energy wasn’t always channeled so harmlessly. Not too long ago, Luke and his family were facing severe aggressive and self-injurious behaviors that restricted his ability to participate in school or demonstrate his true potential.

“He used to bash his head, he would hit me, he would hit himself, he would hit anything, he would kick the floor, and scream and cry,” remembers Shannon.

Luke was diagnosed with autism spectrum disorder and referred to the Autism and Developmental Disabilities Clinic at the Waisman Center. The 13 specialty clinics at the Waisman Center often work together, and because of Luke’s communication challenges he went on to have an appointment with CASC.

CASC is made up of speech-language pathologists and occupational therapists, who provide both individualized speech and language therapy and occupational therapy. Since Luke had no issues with his motor skills, he started working Sarah Labaz, a speech-language pathologist.

“When Luke began his CASC intervention in February 2015, he was using challenging behaviors in place of functional communication about 90% of the time,” says Labaz.  “However, Luke immediately responded to speech-generating devices that were trialed, and we quickly learned that he had undiscovered skills in reading, writing, and even basic math.”

Finally able to communicate, Luke’s behavior and vocabulary showed remarkable improvement at a tremendous pace. “As soon as he was able to spell things out, his aggression went way down,” says Shannon. “He started spelling out everything [using his device]. He can spell pretty much any word you throw at him, even words that I can’t spell!”

Shannon thinks that Luke has been able to spell and read for many years without being able to communicate and display his knowledge. The frustration at not being able to talk, of knowing the words but having no way to express himself, probably fueled his outbursts and meltdowns.

Within three therapy sessions, Luke was using the speech device in place of challenging behaviors approximately 80% of the time. “He was a completely different child who transitioned from throwing toys at me to running up and giving me a hug when he arrived for therapy,” says Labaz.

Luke’s newfound ability to communicate has changed not only his life but also that of his entire family.

“We couldn’t go to a lot of places because he would have a meltdown, and we didn’t know what would trigger them,” says Shannon. “I felt bad for my daughters because we couldn’t do many of the things they wanted to do.”

Now, with Luke able to communicate his needs and wants, the Holzem family can plan and enjoy typical outings. “We can go out to eat at restaurants and Luke will sit in a chair, like any 6-year-old, and spell out what he wants,” says Shannon. “Of course, if he gets frustrated when the food takes too long, he can now keep repeating what he wants to eat!”

Beyond restaurants—and an impatience with slow service—Luke’s frustrations are typical of 6-year-olds. “He loves school now,” says Shannon, “but if we put on his shoes too far ahead of time he doesn’t want to wait—he gets frustrated and wants to leave right way.”

Luke doesn’t only communicate his frustrations though. He spells out, ‘I love you, mom’ and says ‘Happy Birthday, Laney!’ to his sister. He has even divulged his own secret transgressions by telling how he nibbled on the candles scattered around the Holzem residence. “I didn’t actually know that he was doing it but he came over with his communication device and wrote, ‘Stop eating the wax!’” says Shannon.

Helping people find their own way to communicate their loves and secrets is what CASC embodies. “I cannot imagine having something to say and not having the words to say it,” says Labaz. “Being able to provide this power of communication, to look at children who people may have dismissed or discredited their skills and really identify a vision for them going forward is what drives us at CASC.”

But working with CASC and Augmentative and Alternative Communication (AAC) is not a ‘magic bullet’, Labaz clarifies. “It takes a lot of hard work and commitment from all individuals involved,” she says.

In Luke’s case, at the start of therapy, he had to trial several different devices to find one that would best support his communication. He had to work hard to show that he could use the device both within therapy and at home and school in order for insurance to purchase the device.

“It is a long and continuous process,” says Labaz. “Luke’s mom and school team work very diligently to teach him how he can use language flexibly to communicate.  I provide ongoing assessment and recommendations about appropriate language goals and device modification as he continues making progress.” It’s a team effort, and definitely not a quick fix.

Labaz also points out that Luke is a great example of the benefits of cross-clinic, interdisciplinary intervention. He has visited three different clinics at the Waisman Center and seen eight different providers. “It’s great to see how communication between multiple clinicians has truly made the difference for him.”

By Adityarup “Rup” Chakravorty