The Pseudoscientific Phenom—Facilitated Communication—Makes a Comeback

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Correction: A previous version of this blog inaccurately suggested faculty in the Communication Sciences and Disorders Department at Syracuse University promoted facilitated communication. The Institute of Communication and Inclusion is housed in the School of Education at Syracuse and is not associated with the Communication Sciences and Disorders Department.

In the early 1990s, professionals who served children with autism and other developmental disabilities were swept up by a breakthrough method known as facilitated communication (FC). The method included a “facilitator” who provided physical support at the finger, hand, wrist and/or arm of a child who was believed to be typing his or her thoughts. The method allegedly “unlocked” these children from the prison of an unresponsive body to reveal average and sometimes superior intelligence, advanced literacy skills and profound insight about their experiences.

Although no validating evidence was available, popular media latched onto the story and FC fervently spread throughout the country. When researchers investigated claims made about FC, they discovered facilitators subconsciously authoring the messages and concluded FC was fake. For the most part, FC was widely dismissed by the professional communities and became a history lesson on the dangers of credulity, pseudoscience and the importance of evidence-based treatment.

However, beliefs about FC’s demise are premature.

Facilitated communication remains at the fringes of special education and related professions. The primary advocacy has come from faculty affiliated with the Institute of Communication and Inclusion at Syracuse University. A confluence of recent events reinvigorated the method, which is increasingly touted as “a form of augmentative and alternative communication.” Despite overwhelming scientific consensus that the client isn’t totally controlling the message, the method recently underwent a strategic rebranding and is now called “supported typing” or “rapid prompting method.”

Several indicators suggest FC is not just poised for a comeback, but that it’s already begun. A number of credible organizations lend FC unwarranted legitimacy, including the University of New Hampshire Institute on Disability/Center Excellence in DisabilityUniversity of Northern Iowa, Massachusetts Department of Elementary and Secondary Education, and Vermont Department of Disabilities.

Supporters in academia publish articles in peer-reviewed journals that portray FC in positive light, albeit without demonstrations of its efficacy. Indeed, the method is regaining popularity and school districts are beginning to adopt it for their students with autism.

Facilitated communication—known for being the quintessential pseudoscientific fad in developmental disabilities—is infamous for the number of unsubstantiated charges of sexual abuse made by users. In late 2014, the Wendrow family, whose story was featured on 20/20, was awarded nearly $7 million for wrongful prosecution after sexual abuse allegations were made via FC. Former Rutgers University Philosophy Department Chair and leading FC proponent Anna Stubblefield, who claimed any criticism about FC constituted hate speech, was recently charged with multiple accounts of aggravated  sexual assault after she allegedly acted as a facilitator to obtain consent for sex from a man with a severe disability and communication impairment. Stubblefield pleaded not guilty and her trial is set for August 2015.

The method also appears to have played a role in the murder of a child with autism. In November 2014, wealthy businesswoman Gigi Jordan was convicted of murdering her 8-year-old son. Jordan’s defense centered on her claim that she committed a mercy killing after her son allegedly requested via FC they both commit suicide.

Professionals responsible for teaching communication skills to children, youth and adults with autism and other developmental disabilities should take stock when examining claims of hidden communication skills, sudden breakthroughs and inspiring anecdotes that are incongruous with generally accepted research. Evidence-based interventions and treatments do exist to support acquisition of communication and other skills for these learners, though progress often is painstakingly slow. FC and its variants remain illegitimate and ultimately usurp the voices of individuals with communication impairments.

If those teaching individuals with autism and other developmental disabilities to communicate adhere to evidence-based approaches, they better serve their clients, prevent harm, and halt the proliferation of pseudoscience in autism.

Editor’s Note: Jason Travers will be speaking at the upcoming Schools Conference in Phoenix, July 10-12.  His presentation, Get the Message? The Communicative Nature of Inappropriate Behavior in Learners With ASD, will also be featured at Convention in October. See the full schedule for Schools, which is co-located with the Health Care & Business Institute.

Jason C. Travers, PhD, is an assistant professor of special education at the University of or Kansas. He earned his PhD at the University of Nevada, Las Vegas, while working as a special educator of students with autism in the nation’s fifth-largest school district. He investigates the racial disparity in the administrative prevalence of autism as well as the efficacy of technology for preventing inappropriate behavior while supporting academic, social and communication skills of students with autism. A board-certified behavior analyst, he teaches graduate courses in applied behavior analysis, evidence-based instructional strategies for learners with autism, and issues in special education. jason.travers@ku.edu

 

Apraxia Awareness Day: 10 Tips on Giving Kids With CAS a Voice

May 14 marks the third annual Apraxia Awareness Day, a movement headed by the Childhood Apraxia of Speech Association of North America (CASANA). The association’s motto—”Every Child Deserves a Voice”—entreats industry pros to correctly identify and treat kids with apraxia who may not develop intelligible speech. This is why apraxia awareness day is so important.

When I wrote the 10 Early Signs and Symptoms of Childhood Apraxia of Speech, many SLPs voiced their concern about how CAS is supposed to be a rare disorder and they are seeing over-diagnosis. Their concerns are valid. Current data, according to the ASHA portal, state that CAS occurs in every one to two children per 1,000. Over-diagnosis is a problem precipitated by factors that include:

  • Lack of clear and consistent diagnostic guidelines.
  • Lack of adequately validated diagnostic tools.
  • Professionals other than SLPs (pediatricians, neurologists) diagnosing CAS.
  • SLPs inadequately trained in diagnosis and treatment.

Over-diagnosis can cause families undue emotional stress and financial hardship. It also might divert important resources from those children who most need them.

According to research, children with CAS also often go undiagnosed if they truly DO have it! Differential diagnosis is critical with this disorder. Children not identified with CAS may struggle their entire lives and quite possibly not achieve intelligible speech without early and appropriate intervention. Consider that last line again: Without proper diagnosis and treatment, children with CAS may NOT achieve intelligible speech. This is what’s at stake!

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Apraxia awareness is crucial for professionals and families, so every child who has CAS gets the services he or she needs and deserves, regardless of how “rare” the disorder.

These children and parents rely on SLPs to be their heroes. So please, take time today—or soon—to learn more about childhood apraxia of speech. And if you suspect CAS in a client or student:

  • Seek out resources.
  • Attend a conference.
  • Listen in to a webinar.
  • Talk to and consult with your colleagues.
  • Wear blue and speak up for those who don’t yet have a voice.
  • Above all, be part of the solution.

These children and families are counting on you.

Having trouble getting reimbursed for CAS treatment? Read advice on making successful appeals.

And more resources to learn more about childhood apraxia of speech:

 

Laura Smith, MA, CCC-SLP, is a school-based and private clinician in the Denver metro area specializing in childhood apraxia of speech. She’s CASANA-certified for advanced training and clinical expertise in Childhood Apraxia of Speech and often speaks at conferences and consults for school districts or other professionals. Like her on Facebook, follow her on Pinterest, or visit her website at SLPMommyofApraxia.comlauraslpmommy@gmail.com

Helping Middle Schoolers With Organization and Time Management

Students often find the transition from primary to secondary school a challenge. Especially those who experience issues with executive-function skills. Many of my students (and even their typically developing peers) particularly struggle with organization and time management. For example, kids spend most of their time in one classroom in elementary school, while from 6th to 12th grade, they move through classes with different teachers and subjects.

I spend a lot of time working with my kids to develop these skills for many reasons. I stress that if they think it’s hard now, it will only get trickier as academic demands increase. Below are just a few ways I work on organization and time management with my students:

1. Folders
Students should use separate folders for each class. Many students already do this, but my kids must work harder to keep them organized. They pile everything into one folder and can never find what they need. Spend a session going through your students’ folders and putting papers where they belong. We also discuss what’s important to keep versus what they should throw out.

2. Planners
I don’t think I could get through life without some kind of planner or organizer. Introduce students to how and why to use a planner. It’s a visual reminder of what they need to do each day and for planning steps for future tasks or assignments. Check if your school has free planners. Also, you can print out weekly planning pages for your kids and make them a planner. If your students are tech savvy, show them how to use a calendar app. Or check out the many downloadable planning apps to see which ones they might like to use.

3. Check-lists/Schedules
Similar to a planner, checklists and schedules provide students with a visual reference of tasks they need to accomplish.

  • Checklists are great to organize all the things needed to get done for the day or week. We feel accomplished when we cross things off. Help students generate a checklist of what they need to get done. It can include homework, projects, reading, chores, etc…. You can also show them how to break down projects into smaller chunks, so they’re not as overwhelmed with assignments. For example, if they have a five-paragraph essay due, they spend each weekday working on just one paragraph, versus facing the WHOLE thing in one day.
  • A student struggling with time management may find a daily schedule helpful. Drafting a schedule together will help you see what the student does or can do with his or her time each day. It’s also a good opportunity to help that particular student come up with a plan.

4. Backpacks
I don’t know if it’s just my kids, but their backpacks are a MESS! Sometimes I take a look inside and wonder how they find anything. I’ve spent entire sessions just organizing and cleaning out bags. The kids are amazed at the things they find—lost homework or projects due months ago, for example. As with folders, this is a good time to discuss what they need to carry with them and what they should leave at home.

I hope these ideas will help your students with executive-function challenges. I like to try different strategies and see what’s successful. If one thing doesn’t work, try something else!

Gabriella Schecter, MS, CCC-SLP, is a full-time SLP working in a grade 6-12 school. She posts regularly on Instagram (@middleschoolSLP), sharing ideas and activities for this age group. Check out her blog or email her at MiddleschoolSLP@gmail.com.

 

When Patients Won’t Practice

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You give 100 percent in each session, but end up repeating last week’s activities because your patient didn’t practice. Who’s at fault?

We all tend to get complacent with the materials and techniques we use. Thankfully, we also take CEU courses to keep ideas and implementations fresh. But what if you try everything in your bag of tricks and your patient still doesn’t improve?

I discussed this exact issue with two of my patients recently. Each one had a different situation, but both were making limited progress. “John,” for example, sought treatment with the hope that others would stop complaining about his voice quality. He says he stopped doing the diaphragmatic breathing exercises I assigned, because his voice wasn’t any better. I replied that it takes more than a week of doing only breathing exercises to make improvement. Breathing is just the first component of coordinating a new voice.

He and I talked about the real reason he was here. I discovered that although he felt his voice sounded disordered, it was really only affecting those around him. It really didn’t bother him that others thought his voice was annoying, so he decided not to continue sessions. Fair enough.

“Sara’s” case was different. She and I worked together for several weeks and ended up going through almost the same session each time. She reported practicing, but I didn’t see evidence of that in her productions. Frustrations arose and she felt like she was getting nowhere.

In our most recent session, we talked at length about life and the projected outcomes of her condition. Her voice issues affect her life, which upsets her. This emotional roadblock gets in the way of her dedicating time to practice outside the treatment room. She also feels guilt and blames herself for the issue, even though it’s not at all her fault. She realizes that these feelings are holding her back, so she’s taking time off from sessions and coming back when she’s ready to commit.

We should try to build up patients when they come to us feeling down on themselves. That might be tricky, however, because we also point out their mistakes in order to correct them. Sometimes sharing personal experiences as encouragement helps. It’s never a bad idea to refer clients to a therapist or counselor as supplemental treatment—it’s even in our code of ethics and scope of practice.

I do this occasionally when sessions frequently turn into “therapy.” If I think a patient would benefit from talking through issues with a trained professional, I always refer out. That way when the patient comes to our sessions, we focus on the voice disorder and I know the other issues are being addressed.

If your patient isn’t practicing, it’s time to find out why. Is it motivation? Is it you? Do your best to figure out what else the patient needs from you to be successful, and offer many options. Sometimes all you have to do is ask.

 

 

Kristie Knickerbocker, MS, CCC-SLP, is a speech-language pathologist and singing voice specialist in Fort Worth, Texas. She provides voice, swallowing and speech-language treatment in her private practice, a tempo Voice Center, LLC, and lectures on the singing voice to area choirs and students. She is an affiliate of ASHA Special Interest Group 3, Voice and Voice Disorders. Knickerbocker blogs on her website at www.atempovoicecenter.com. Follow her on Twitter @atempovoice or like her on Facebook at www.facebook.com/atempovoicecenter.

 

Collaboration Corner: Knowing the Big Picture and Little Details of Autism

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As Autism Awareness month wraps up, I thought I‘d share my learning moments from working 15-plus years with my students on the spectrum, their families and my dedicated co-workers who support them:

  • Autism is a spectrum. There’s not a cure or a fix, but there are evidence-based interventions and nuances for each child that will help him or her succeed. My job (and yours) is to recognize those little details and shine a light on them.
  • I’ve developed a super appreciation for things that spin, shake, light up and squish. I also appreciate when these features suddenly become appalling and over-stimulating.
  • Sometimes the best way to get a child’s attention is to speak just above a whisper or not talk at all. Less is more and often things don’t just sound loud, they feel loud to a person with autism.
  • Sand and water play are seriously awesome.
  • Regardless of where a child is on the spectrum, you can find an activity that feels like fun and learning at the same time.
  • Candy doesn’t always taste or feel good, but hot sauce tastes delicious on French fries.
  • Take the short and long view on augmentative and alternative communication. Work on the here and now to make your clients efficient communicators, then model your expectations to bring them to the next level. Make them life-long communicators.
  • Students and families will show you when they are ready—ready to try something new, ready to accept who they are. You just have to listen, be patient and push. But not too hard.
  • Finally, having co-workers who are cued in and can step in and help at a moment’s notice is invaluable and—when in action—nothing less than a work of art.

What lessons have you learned from working with clients on the spectrum?

 

Kerry Davis EdD, CCC-SLP, is a speech-language pathologist in the Boston area, working with children who have significant communication challenges. She conducts trainings and workshops, and serves as a volunteer clinician and consultant for Step by Step Guyana, a school for children with autism in South America. The opinions expressed in this blog are her own, and not those of her employer. kerrydav@gmail.com