So, what do I do when they won’t participate? – Part 2
Published 12/21/2021, by Caroline Braun, M.S., CCC-SLP
Dear Reader: ” So What do I do when they won’t participate?” This is the second in a series of articles that will address neurodivergent-affirming therapy strategies for therapists who need some practical ideas for how to begin the paradigm shift in their practices. If you missed the first article you can read it here.
In this series, I’ll be sharing what neurodiversity-affirming therapy can look like within the context of individual cases. Since every child is different, there is no one therapy strategy or technique that is going to be effective or appropriate for every child or every situation. However, when a child is in distress or refusing to do something during therapy, all ethical therapists should be asking the same central questions:
Why is my client struggling? And, what can I do to respect and support my client’s autonomy?
A Tumultuous Start in Speech Therapy
This case is an example of how our clients benefit when we design our interactions and interventions around these questions.
When Adam arrived at his initial private speech therapy evaluation, his mom reported concerns that his expressive language was significantly delayed. At 2.5 years old, Adam had less than 20 words and hadn’t produced any new words in weeks.
At the beginning of the evaluation, Adam appeared to enjoy playing with zoo animals with mom and the therapist. He laughed and smiled readily and paired gleeful, albeit, infrequent, babbling with gestures like pointing and guiding his mom’s hands to the toys he wanted her to play with. However, after a few misunderstandings in which neither mom nor the therapist could figure out what Adam was gesturing for them to do, Adam became highly frustrated and emotionally dysregulated. He threw himself to the floor and, in between sobs, began to bang his forehead on the floor repeatedly. His mother was worried that this self-injurious behavior had started happening more and more frequently in recent weeks.
Adam’s mom and the treating therapist immediately agreed to target Adam’s ability to communicate his wants and needs to, hopefully, decrease his self-injurious behaviors and improve his overall quality of life.
After several months of traditional early language interventions (e.g. modeling expanded utterances, parallel talk, etc.), Adam had made little progress and both he and his mom were frustrated. He attempted a few signs that the therapist taught him, but, like many children with speech and language delays, he also demonstrated fine motor delays as well. Mom and the therapist often misunderstood his attempts at approximated signs and, more often than not, he didn’t have a sign for what he wanted to communicate anyway. While Adam was self-injuring a lot less now that he had some signs to express basic wants and needs, his mom noticed that he continued to occasionally self-harm and become distressed when he seemed to be communicating about people or items outside of the room that he didn’t have signs for yet.
To encourage verbal production, the therapist taught Adam’s mom a “gentle withholding” strategy in which the adult withholds a child’s preferred toy or activity until they produce or approximate the target. Adam often became so frustrated when items and activities were withheld that his self-injury became worse than it ever was at home: he flew into despair or rage, banging his head on the walls and floor and even hitting himself on his forehead and chest. Eventually, Adam refused to participate in trials involving withholding at all and just sat and stared blankly and silently at his mom and the therapist when they requested that he produce a target.
Although Adam was refusing to participate, he wasn’t being manipulative to “get out” of doing something he didn’t feel like doing. In fact, he wasn’t participating in therapy because the therapist hadn’t yet determined why he was refusing to participate.
It turns out that Adam had a very valid reason for the challenging behaviors he demonstrated during speech sessions and during home practice.
After several observations with the treating therapist’s supervisor, the team discovered that Adam presented with childhood apraxia of speech, a motor speech disorder that causes difficulty coordinating oral movements for speech. This means that Adam wasn’t avoiding talking during withholding trials because he was being defiant; instead, Adam wasn’t participating during therapy in the way the therapist wanted him to because he actually couldn’t.
In the following section, things are about to get a lot better for Adam. But, before we get there, let’s explore what went right and what went wrong in his first few months of therapy by applying a critical, neurodiversity-affirming lens.
Including caregiver and client perspectives in the development of the treatment plan
In the evaluation and development of the original treatment plan, the therapist ethically implemented ASHA’s evidenced-based triad (i.e. clinical experience – caregiver/client perspectives – current scientific research), which is consistent with the neurodiversity-affirming framework. The therapist also recognized Adam’s distress and, at least initially, incorporated his perspective into the development of the goal to address his ability to convey his wants and needs.
However, some aspects of Adam’s initial treatment sessions are highly problematic. While language stimulation strategies like parallel talk and language expansion are well researched, effective, and can be implemented in a way that respects the child, withholding strategies cannot be considered respectful.
Using disrespectful practices (i.e. withholding)
Withholding strategies, whether they bear the more parent-pleasing label of “gentle withholding” or more sinister names like “sabotage” or “communication temptations,” are deeply problematic and are not in any way aligned with a neurodiversity-affirming paradigm.
Why? Because they are inherently disrespectful to the child and their current method of communication.
When we present a child with something they enjoy, they often communicate that they want it in a variety of ways. For many of the children we work with, communication may come in the form of eye gaze, gestures, smiles, babbling, and other methods besides spoken language. When we dangle something we know a child wants in front of them and then withhold it until they produce the target, it’s quite confusing for the child and, frankly, it’s cruel.
KEY NOTE: Notice that I’m not criticizing the therapist for initially missing the child’s diagnosis of childhood apraxia of speech. Every therapist, both new and experienced, misses something important about a client at one time or another, which is why a team-based approach to care is critical when implementing neurodiversity affirming interventions. We don’t know what we don’t know, and a key part of being a team player is having honest conversations with both clients and caregivers about what is and isn’t working and reaching out to more knowledgeable colleagues when we need help. Neurodiversity-affirming providers embrace the reality that their practice is constantly evolving to incorporate new research and the voices of the people we serve.
Now, here’s where things start to turn around for Adam.
Following Adam’s diagnosis of apraxia, the therapist rewrites Adam’s treatment plan to better reflect his needs and reflect principles of motor learning, all under the guidance of a colleague who specializes in working with apraxia. The therapist also begins a course of self-study regarding apraxia intervention including journal articles and CEUs.
Neurodiversity-affirming practice: The therapist continued to seek out the support of a more experienced colleague to ensure that Adam’s new treatment plan reflected his needs.
Neurodiversity-affirming practice: The therapist sought out additional training in evidence-based techniques to better address Adam’s needs secondary to apraxia of speech
Before their next session, the therapist sent Adam’s mom some additional information about apraxia as well as information about AAC. In their next session, mom was hesitant to try AAC because, like many parents whose children may benefit from AAC, she worried it would keep Adam from talking, but, after sharing her concerns with the therapist, discussing the current research regarding AAC, and exploring a few AAC apps on the therapists’ iPad, she agreed to try it.
With mom’s support, the therapist modeled the use of several different AAC apps during play with Adam and his mom. Mom joined in and used the device too. After watching mom and the therapist produce a few words and phrases on the iPad, Adam tried to select an icon as well. The therapist had previously opened the device to a folder including animals, and Adam selected several different animals, giggling each time he heard the speech output. The therapist noticed Adam occasionally appeared to mishit icons while exploring the device, so she placed a keyguard to improve his accuracy.
As Adam became familiar with the device, the therapist allowed him free access to explore it. No more withholding until he produced the correct target.
He eventually discovered the keyboard-equipped on the device and enjoyed selecting each letter and listening to the speech output. With Adam’s consent, the therapist occasionally provided tactile support at his elbow to steady his hand as he selected icons, but she did not physically direct him to any icons. When his mom asked him to find an icon to label a familiar animal she was holding, an elephant, he smiled mischievously, selected the icon for “giraffe,” and laughed heartily at his joke. Later on in the session, he independently used his device to produce the phrase “elephant down” while gesturing for mom to push the elephant down the slide.
Neurodiversity-affirming practice: Presuming client competency and providing unrestricted access to robust AAC
The therapist provided access to robust AAC and advocated for unrestricted access to a Speech Generating Device (SGD). Adam was not punished when he explored the device or produced words or phrases that were not targeted. The therapist and his mom allowed consistent opportunities for Adam to communicate authentically and say what he wanted to say.
Over the next few months, Adam turned 3, then 3.5, and made significant progress. He began to routinely produce 3-4 word utterances on his device, first with some verbal and visual prompting, but, within a few weeks, he was almost fully independent. He also demonstrated a strong sense of agency over his device, often pushing the therapist’s hands away from it when she forgot to ask for permission before touching it.
Adam also experienced what his mom called “an explosion of speech.” Since implementing the device, Adam started to enjoy speech therapy sessions more as well as practicing at home. Rather than focusing solely on verbal productions, speech sessions now always included access to AAC and no expectations that Adam would produce verbal responses. Adam was now frequently producing verbal approximations of words and phrases even when he had easy access to his device and, when he approximated a target sound or word independently in play or conversation, the therapist provided a verbal model of his production and asked if he would like to try again to make it sound like the therapist’s. About 70% of the time, Adam agreed and attempted at least 1-2 speech trials. As his confidence grew, his mom noticed him attempting to self-correct, and he soon agreed to participate in 10, 20, sometimes 50 speech trials pers session.
Occasionally, Adam gave the therapist explicit consent to use her hands to gently move his jaw to the ideal height for target vowels. He also enjoyed using his hands to “help” mom and the therapist move their jaws to the ideal height, and mom and the therapist used this opportunity to model a variety of multimodal ways to communicate consent and refusal.
Neurodiversity-affirming practice: Having the client’s consent to participate in therapy tasks is crucial.
The therapist gained the client’s consent to do therapy tasks and accepted refusals to participate. Note that the therapist can still implement a variety of indirect therapeutic techniques even though Adam did not always consent to direct instruction. Strategies may include providing verbal models of language targets for direct language stimulation, language models on the device, and providing parent education on strategies to use at home.
Neurodiversity-Affirming practice: Always honor client body autonomy!
The therapist always gains Adam’s consent before touching him and always honors his refusals without punishment. The therapist also teaches Adam to respect the bodily autonomy of others by modeling what consent and refusal can look like when interacting with his mom and the clinician. His mom and the therapist are mindful to model multimodal means of consenting and refusing including oral speech, gesture, facial expressions, body positioning, and his speech-generating device.
Occasionally, Adam had a hard day or even a hard week and didn’t want to participate in therapy at all. He didn’t want to play with any toys and only wanted to quietly sit under the table and look through his favorite books. On these days, mom and the therapist continued to use his device to help figure out why he didn’t want to participate. Sometimes, he said he wasn’t feeling well, which made sense as the doctor had recently diagnosed him with GERD. Other times, he said he’s tired, and mom reported that his new baby brother was up crying all night.
Every once in a while, Adam didn’t want to talk or use his device to discuss his feelings and just wanted to read alone. And that was okay! There were still plenty of things that the therapist could do to provide skilled services. Adam’s mom and the therapist often used these sessions to troubleshoot questions regarding his device, discuss home activities, update his plan of care, and review his IFSP from the county.
Neurodiversity-affirming practice: Client’s can say whatever they want – including that they don’t feel up to therapy today.
The therapist allowed Adam to say whatever he wanted to while using the device and did not dictate what she wanted him to say. For instance, the therapist would not punish Adam if he refused to participate in language trials using the device. Instead, the clinician would use the device to model how she is feeling (i.e. “I feel worried about you”) and may ask Adam how he’s feeling using the device. Adam could then choose to respond using the device, speech, body language, or not at all.
Neurodiversity-affirming practice: Honor client refusals and validate them.
The therapist honored Adam’s protests when he refused to participate in any therapy activities. She didn’t punish him for refusing to participate, attempt to coerce him, or try to bribe him. She accepted his “no” as “no” and took these sessions as an opportunity to provide direct parent training.
KEY NOTE: Notice here that, when Adam outright refused all therapy tasks, two things happened.
- The therapist used multimodal communication to find out why Adam didn’t want to participate, and, when Adam’s reason was something the therapist couldn’t solve (for instance, when he was feeling sick or tired), he wasn’t required to participate.
- The therapist was still able to provide skilled services in the form of parent training, AAC programming, and intervention planning.
- Of course, this was possible because the therapist was providing services in a private setting. In future articles, we’ll discuss different settings and how to navigate challenges specific to those environments. Therapists can be neurodiversity affirming regardless of setting!
As Adam’s treatment progressed, he continued to experience new successes and new challenges. Starting pre-school was exciting but also dysregulating at times. Dad started a new job and his hours changed, but he and Adam learned to make time for nightly storytime together. Adam developed additional GI concerns and spent a few days in the hospital, but his ability to communicate where he experienced pain was vital in getting him the medical care he needed quickly.
As Adam grew and his needs changed, his therapist and family didn’t always immediately know what to do to help him best address his challenges; however, that was okay, even expected, because it’s impossible to anticipate everything our kids may need and want. No matter what new challenges emerged, Adam’s family and therapist were able to consistently meet his needs by always asking:
Why is my child struggling? And, how can we maintain his autonomy?
At the end of the day, our kids’ needs are often not all that different from the needs of adults. Just like adults, kids like to do things they are good at and become frustrated and may even begin to avoid things that they don’t feel they are successful doing. This was the case for our client, Adam, in this case study. He knew oral communication was difficult for him, and he’d had plenty of negative experiences that confirmed his fears. Once the team knew why Adam refused to participate in speech therapy activities (i.e. because his apraxia made the tasks overwhelmingly challenging), they were able to alter his plan of care to include interventions, activities, and tools to directly address this challenge.
However, despite accurately identifying why speech production was challenging for Adam, he still occasionally refused to participate in therapy tasks because, just like adults, our kids have difficult days too. They have stomach aches, a bad night of sleep, a fight with a friend or loved one, or just simply aren’t interested in that craft we printed and laminated off of Teachers Pay Teachers. And that’s okay. Sometimes, our kids just need to know they can trust us to respect their need for a break. Part of respecting our client’s autonomy and helping them to develop their self-determination is helping them develop the confidence to tell authority figures “no”.
In Adam’s case, his care team was able to address the barriers to his success early and quickly set him on the path to increased autonomy and independent communication.
But what happens when we encounter a child later in their life after they’ve experienced years of unsuccessful academic and social experiences? What do we do when the strategies we used for a child-like Adam don’t work?
Stay tuned for our next article in which we’ll follow a school-based therapy team as they work to meet the needs of a child who refuses to even look at the therapists when they enter the classroom, much less agree to participate in therapeutic activities.
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- Case Study in Neurodiversity-Affirming Care: A Toddler with Childhood Apraxia of Speech - December 21, 2021