Dr. Karen Chenausky is lead author on paper discussing best practices for collecting and analyzing speech data from minimally verbal autistic speakers.
It may seem like a contradiction in terms to talk about helping minimally verbal children with autism speak more, but that’s exactly the research Karen Chenausky is pursuing.
“There is a lot of really rich data that even kids who don't produce very much speech can provide,” said Dr. Chenausky, Director of the MGH Institute’s Speech in Autism and Neurodevelopmental Disorders (SPAN) Lab. “If you look really carefully, you can get information about their potential ability to produce speech. We found even minimally verbal kids with autism can give you a lot of really good information about how they talk.”
Chenausky is lead author of “Review of methods for conducting speech research with minimally verbal individuals with autism spectrum disorder,” published in Augmentative and Alternative Communication. Co-authored by 2016 Master of Science in Speech-Language Pathology graduate and current PhD in Rehabilitation Sciences candidate Marc Maffei, Boston University faculty Helen Tager-Flusberg, and Dr. Jordan R. Green, Director of the Speech & Feeding Disorders Lab at the IHP, the paper is a compilation of best practices and guidelines the autism community can follow.
Chenausky and her co-authors say it’s important to study speech production in children whose development is severely limited - because:
- The children provide a unique and valuable perspective. According to the study, “Both their challenges and their preserved abilities provide important information that can illuminate the neurology and genetics of speech production.”
- Speech development is interlinked with language development; understanding the connection of the two in children with autism can lead to important insights.
- Researchers may want to assess speech in minimally verbal children to measure baseline skills and monitor progress during therapies designed to improve language skills.
The paper points out that approximately one third of children with Autism Spectrum Disorder speak fewer than 30 or so words, and that a significant portion also undergo significant behavioral challenges that make speech and data collection difficult.
“They're kids, so you can't just sit them down in a lab and say, ‘OK, now do this’ and expect them to just do it because kids are much more chaotic than that, but also because these kids are different from typical kids in that it's much harder for them to talk,” said Chenausky, who holds an appointment at Harvard Medical School. “So, they don't necessarily understand what I'm asking them. I have to figure out a way of communicating what the task is in a way that they’re going to understand, and I have to understand that their way of processing is much different from mine and takes longer.
“To remind myself of their challenges, I sometimes imagine myself in a foreign country and some medical issue has happened to me, and I’m in the hospital,” she explained. “You know how people are in hospitals - they talk really fast, they give you a lot of commands, and I'm not understanding any of it, because I don't understand this language.”
Understanding an autistic child’s language limitations - and possibilities - are key factors for researchers, as is knowing how to determine each.
“It’s critical to know how we can figure out which children are going to stay minimally verbal and which children are going to go on to be talkers, and hopefully we would do that before they turn a year old,” said Chenausky. “In a perfect world, we’d love to be able to do that, because then you just intervene with them when they're infants and toddlers and maybe avoid the ‘I never learned to talk’ process.
“Right now, the best we can do is say a child isn’t talking and we’ll give them some therapy, but we really only classify them as minimally verbal when they're five years old and are still not really talking much, which is at least four years too late,” she continued. “If you're going to try to see which kids are going to be minimally verbal and which kids aren't, or if you're going to be working with kids and find out what their speech abilities are, how do you do that If they don't talk very much?”
Chenausky offers a Top 5 list for those working with autistic children with speech difficulties:
- Be patient and just enjoying being with the child
- Realize what you’re asking is harder for them than probably anything in your life is for you
- Proceed at their speed; make the environment as welcoming and as calm as possible
- Give plenty of praise for trying
- Understand that they are doing their best
“Even though they might not be able to comply,” cautioned Chenausky, “it's not because they're bad kids. It’s because it's really hard for them. Their brains are different.”
Perhaps the most important take-away, according to the paper, is to identify the level of detail for one’s clinical or research purposes and then select the tasks, stimuli, training methods, and analyses that yield the most reliable data to answer the questions. “Even children who produce very little speech,” the authors write, “are capable of showing us a wide range of communicative behaviors that are important not only for tracking progress in therapy but also selecting a communication modality (e.g., speech, sign, picture) that allows them to make their needs and wants known and at the same time maximizes their ability to acquire as much receptive and expressive language as possible.”
For Chenausky, this paper is just the latest entry of expertise that began during her post-doctoral year when she was testing two different speech therapies for minimally verbal kids with autism.
“In the course of that, I was working to get the kids to just repeat simple words,” remembers Chenausky. “I really began to see not only how hard it was for them to just talk or to move their mouths, or to make sounds on purpose, but also all the kinds of trouble that they encountered when they were trying to say words. Once you start to see that, you understand: ‘No wonder it's so hard for you to talk - you literally have no control over this process whatsoever.’ That got me interested in understanding what is potentially going wrong in that process, and how we can understand what you might be able to do later. What's going wrong? And can we fix that?”
Chenausky hopes this paper will be a go-to tool for researchers who can leverage what she has learned through the years. “This will help them in analyzing vocalizations of children who aren't necessarily at the word level,” said Chenausky. “It helps give these researchers an understanding of the decision process that they need to go through when they are doing research, how to set up a situation where the kids can be successful, and then once their data is collected, how to make good decisions about how to analyze it, and also what tools are available to do that with.”
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