This week, Speech and Language Pathologist and DIR Expert Trainer Joleen Fernald answers Affect Autism member questions. If you missed Part 1 last week, please go back and listen to her discuss her specialty, Selective Mutism and Alternative and Augmentative Communication (AAC) devices, her DIR/Floortime school, Reconnections Education Center, and her upcoming book and companion website about Selective Mutism. It’s a pleasure and privilege to have her answer parent questions from our members!
Alternative and Augmentative Communication (AAC) Devices
“People have the right to communicate in the method that is best for them, period.” An Interview with Derek Burrow
Also check out this fabulous interview with an autistic AAC device user on Noncompliant-The Podcast HERE
Questions from Affect Autism Members
Many parents in ICDL’s virtual parent support meetings that I facilitate each week have either pre-verbal or non-speaking children and I always tell them about Joleen when they have questions. A few members of Affect Autism had some questions for Joleen for this week’s podcast that she was generous to respond to.
Joleen says these are two very different systems. S2C is an offshoot from the Rapid Prompt Method (RPM), which is an offshoot from Facilitated Communication (FC). The idea is that you have a communication partner who has a physical hand on your hand to guide you to spell out what it is you’re trying to communicate. She says she is not an expert in the spelling boards like these. The rationale behind it is that it’s slowing you down for your motor planning by having to spell out due to the brain-body disconnect so that you can express yourself more definitively.
Proloquo is a picture-based system and a speech generating device that does not require hand-over-hand. It’s more autonomous and yes, you may utilize some support physically. Joleen recommends hand-under-hand if you are going to do that so the communicator has the ability to remove their own hand on their own so they can feel safe and confident doing that, as opposed to a hand-over-hand approach, Joleen explains. There are many speech generating devices such as Proloquo2go, an Accent Device, LAMP (Language Acquisition through Motor Planning), or TouchChat.
Joleen prefers the speech-generating devices because they promote more autonomy and don’t require a trained communication partner. If you go to a restaurant, for example, you would need a trained partner with you to order by spelling out, “I would like a hamburger” whereas with a picture device–once you are at the point of being confident with the device–you could type what you want and the server would hear what you want from the device, which makes it more universal. Her bias is towards this device because it allows for much more novel communication which is more developmental in the way we typically learn communication and language. You can also take it anywhere and don’t require the same communication partner to be with you.
In Joleen’s experience, she says S2C is a more behaviourally-based model in that the systematic model of teaching it is more behavioural in nature. It’s hierarchical in nature in that you are required to sit in a seat and move through the board in a systematic way. She is not an expert in the spelling boards though, but she is an expert in the speech generating devices and is biased towards them.
Question 2: A takeaway I had from Joleen’s presentation at 2020’s ICDL DIR/Floortime conference was that parents sometimes come in wanting their kids to speak with an AAC device when they’re non-speaking and expect them to start speaking with it right away, when it takes months and months to learn how to speak in general. Similarly it takes time to learn the devices and sometimes parents give up and say it’s not working before giving their children a chance. I asked Joleen to elaborate.
Joleen uses the example of a neurotypical baby’s acquisition of language. They are bombarded with language in the first 6 to 9 months of life, she explains, but it’s not until about 12 months that you start to hear that expression. When starting with a new AAC device, we expect uptake to be quick because the child is already comprehending so much. It could take 3 to 5 months or more before a child can spontaneously communicate food-meat-hamburger. For neurotypical children to combine two words it can be up to another 12 months. Then for three and four words it can be yet another year.
She encourages parents to hang in there and be patient and says it’s important to get those devices in the hands of kids early on. It’s not uncommon, she says, for parents to request an AAC device when the child is 8 or 9 years old and by then the child is already frustrated and exhibiting behaviours from being frustrated with not being able to share their wants and needs, hopes and wishes, and dreams and ideas.
The other thing people mention to her are prerequisites for AAC. There are no prerequisites for them, despite some people saying you need to be symbolic or have object awareness and cause-effect in things. Typically developing infants don’t have those skills until they are exposed to language. The speech-generating devices give you access to so much more.
Question 3: I’ve heard parents say that their child didn’t speak until they were six years old, for instance. In that case, would you still intervene early even though the child’s speech and language might just be delayed?
Joleen says that the research supports that starting an AAC device early can support verbal language output later. As a Speech and Language Pathologist, her goal is on communication first. If talking comes, that’s great, but she wants the child to have the ability to communicate. Joleen doesn’t have a crystal ball and even if there are indicators suggesting that the child may remain non speaking, those are the kids that end up showing her up anyway. She’s given up predictions and instead works with whatever model seems to work best for that individual child’s profile.
For some kids, it may be that speech generating device while for others it might be a text-to-speech app on their iPad or mobile phone. She has an amazing 16-year-old gal as a client now who came to her specifically for Situational Mutism because she wanted to be a much more confident communicator. She is fantastic at using her text-to-speech app on her phone. Joleen asked her about it and she said that the app is not as efficient as her verbal speech, so Joleen asked if it’s that she is not as comfortable using it or if it’s that she is aware that others are not as comfortable or patient with her using the app over verbally communicating. It gave the client more confidence. They’re still working on her regulation in situation where she wants to be verbal, but for now, she is a fabulous communicator over text and Joleen wishes that all of her clients could access their technology that way.
Starting early alleviates so much stress and frustration on the children and then you’ll really get to know what your child needs and what their preferences are, and give them the ability to advocate earlier on so that if and when the speech comes, it will naturally flow into that next step.
Question 4: What is the most remarkable case you can recall such as a client you didn’t expect to speak who started speaking in their teens, for instance?
The clients with Selective Mutism are usually already quite verbal and so the treatment time is usually from nine to twelve months. Usually in two to three sessions they’re verbal with Joleen, then it’s about figuring out their regulation and supporting their individual differences so they can be confident communicators outside of their comfort zone. She’ll sometimes get calls from parents that their child with Selective Mutism got in trouble for speaking too loudly in class and Joleen says they celebrate those moments.
A story that comes to mind otherwise is a child she had as a client when she worked in schools from age 3 to 7 or so before she switched school districts. She questioned his cognition and doubted he would ever communicate verbally. She was a lot younger then and didn’t presume competence like she does now using the DIR Model. She just felt that this child was really going to struggle. His mother called Joleen last year and that boy is now working for NASA as an engineer and is a genius, clearly very verbal and able to get his needs met, she adds.
It’s a sad reminder for her, though, as a professional that she shortchanged someone with such potential early in her career. That’s why she loves the DIR model because you see the child’s strengths and capacities and support them, over pointing out their deficits. Instead of “I will get you to talk” her focus is now “What do I need to do to support you to achieve what you’re capable of“. That flip which seems simple is everything and completely changed the way that Joleen practices, she says. It’s the cornerstone of everything that she does.
Question 5: We’re just starting out with Proloquo2go and I’m wondering about tips for respectfully introducing the program in a way that doesn’t feel compliance-based. My daughter is 3 1/2 and non speaking and right now we’re just exploring a few buttons together and I press them to casually narrate a few things as we go about our day. I’m wondering the best way to start branching out from here?
Joleen says what you’re doing is great. Proloquo is set up a bit differently from other devices so there are a few things she tells families about when they start. She suggests setting it up in a way that is not category-based, but for instance, ‘yellow’ is always going to be in a yellow spot, ‘food’ is always going to be in the same spot, and ‘go’ is always going to be in the same spot. Sometimes it’s set up where there’s a page for movies, for music, etc. and Joleen says not to do it that way. That aided language stimulation is what this family is doing where you model throughout the day and show is great. Make sure you don’t withhold food until she presses that she wants a snack. Instead, if she brings you to the fridge, model, “Oh, you want a snack” and show her on the device, or when it’s time for bed put ‘sleep’ in there.
The other key point is to highlight more verbs than nouns, even though it’s easier for us to think about language as nouns, but the power of words are the verbs, so show her those power words like ‘go’, ‘stop’, ‘want’ and then you can figure out from there.
Question 6: If you’re starting from scratch what is your first choice for an AAC device?
Joleen says that systems and devices should be very individualized and based on the strengths of the child. That said, for her the most universal and flexible device would be that Prentke Romich accent device which uses the Language Acquisition through Motor Planning (LAMP) model because those symbols are always in the same location. It uses the same process as how we learned how to type when we learned where the home keys are on a keyboard. Those keys never move, so you can have a full conversation and type something at the same time without having to look down at the keyboard. (Oh, I’m grateful for grade 9 typing class, yes!)
The idea is that our kids are learning the same motor plan on their communication device, and those symbols don’t move or shift so you can generate all kinds of sentences and language expressions. So while it should be individualized and Joleen has recommended a lot of different options, she says that her go-to is typically LAMP and they have an app now, too, for the iPad which gives more flexibility for families who may not have $8,000 through insurance or whatever to purchase the regular, stand alone device. You can spend $500 for an app for your iPad and still have the same level of access. You can then modify your iPad with a key guard and other different options as well. Joleen likes the flexibility of having an app and the stand alone device.
Question 7: Knowing that scripting is my child’s current way of communicating, I interact as much as I can. Sometimes they will enunciate the script perfectly and other times they will say the first few words and then mumble the middle part then pronounce the last few words clearly. It makes it harder to engage at these times. Do you have any tips?
Joleen loves scripting because it’s an initial introduction into communication for many kids. They don’t have the motor planning yet. They have an idea and the connection to an association, and that’s where the script comes in. To us it might seem really random and we can’t figure out what the connection is, but with motor planning they have the idea and struggle with the execution of the idea. The association is pretty cool if you can start to figure out where it’s coming from, Joleen says, so just continue trying to make the link and support the motor planning at FEDC 3 with the back-and-forth communication and at FEDC 4 with the social problem-solving and hopefully some of it will start to connect.
Joleen says that the reason the jargon or mumbling happens in the middle is also related to motor planning. Sometimes it’s about the brain getting the mouth to produce the correct sounds. Other times it’s a fluid process. Also it could have to do with working memory where they remember the beginning and end but are fuzzy about the middle. The child may also be using scripting as a placeholder to process what you’re saying, such as with echolalia, or they might be using it to initiate an interaction.
The scripting might also be related to an emotional experience. They might suddenly be scripting about princesses but it’s the emotion in the movie with the princesses that they relate to rather than the actual princesses. The point is, Joleen says, that it is purposeful and should be treated as such.
Question 8: My daughter is starting to talk at home, limited and with scripting, and will script with her sibling, but when outside with other kids, she will go silent, but seek to be near them and just stand by them silently until she wants something like a bathroom or ice cream. Is this Selective Mutism? If so, she doesn’t seem to display other signs of anxiety.
Joleen says first, let’s not assume we know what anxiety looks like. It isn’t always a scared looking child biting their nails. For Joleen, for instance, anxiety drives her to be a perfectionist. For some people it causes them to withdraw a little bit. Joleen loves that the child is approaching other kids. Some kids will practice communication in the home where it’s safe. When they get more confident in their home environment, then they’ll generalize out to other environments.
The child probably knows that Mom and the sibling will be more patient with her and tolerate her being more directive. In the playground, there’s so much unpredictability. It could also be the physical challenges of the playground where the cognitive load is just too much. It could be the visual spatial input or the motor planning about how to get up the slide that is overwhelming while trying to figure out speech and language. It could also be the motor planning piece of coming up with an idea of what do I say to open up and engage with other kids? It’s about figuring out the child’s Individual differences. It probably doesn’t fit the diagnosis for SM as she isn’t very verbal yet in one environment.
Question 9: Do you offer virtual services for people who aren’t in the Tampa, FL area, for example for a consultation and then follow-up with a local SLP?
If it’s a consultation she can do that anywhere but if it’s work with a child, she’s only licensed in New Hampshire and Florida, but she’s happy to consult and give feedback to families.
This week's PRACTICE TIP:
This week let’s focus on understanding our child and helping them communicate. When they see that you are interested in what they are doing without judgment, they will feel safer communicating with you.
For example: If you can see your child trying to do something, comment on what you see. If you get a puzzled look or no response, you can guess what else you might be seeing them try to do.
Thank you to Joleen Fernald for sharing her expertise with us and answering questions from our members. You can also follow Joleen on her Facebook page or her Instagram. If you enjoyed and found this blog post and podcast useful and helpful, please share it on Facebook or Twitter and feel free to share relevant experiences, questions, or comments in the Comments section below. Also stay tuned for next week’s podcast where I’ll interview a mother-daughter Occupational Therapist team about their Floortime lifestyle across generations.
Until next week, here’s to affecting autism through playful interactions!