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Opinion / Viewpoint

A call to scientists to develop communication tools for autism

by  /  20 December 2016
The Expert:
Expert

Shannon Des Roches Rosa

Senior editor, Thinking Person’s Guide to Autism

My son, Leo, turned 16 in November. He’s mostly thriving: He attends a school where he is surrounded by excellent teachers, speech-language pathologists and other special education experts, and he’s the middle child in a family that adores him (the occasional sibling fireworks aside). Despite all our best efforts, though, Leo has difficulty communicating his most basic wants and needs. This is intensely frustrating for him — and for us, too.

Leo is what researchers call a minimally verbal autistic person. He has always used some words, such as Disneyland, pizza and ‘Totoro’ (a character from a Japanese animated film). Experts assumed this list would grow over time. And Leo has gained a few more spoken words with age, but his communication disability remains significant. His ability to understand far exceeds his ability to express himself.

We have tried various evidence-backed methods to encourage Leo to develop more oral speech, to no avail. So we are floundering, wondering how best to help him share what he’s thinking.

It is monstrously unfair that so many people like Leo have things to say but no reliable means to say it. I simply do not understand why there isn’t more research to help him and guide us.

I have some theories on why this may be, and I’ve asked other parents and professionals to weigh in, too. Autistic people and their supporters who try alternative strategies for communication are sometimes labeled as being anti-research or pro-pseudoscience. In fact, most of us just want more and better research. And we want scientists to understand that they have the opportunity to change the lives of autistic people and their families.

Lost in translation:

It’s not as though there are no evidence-based options to help people like Leo communicate. Most existing approaches are behavioral: They are designed to encourage communication by offering rewards for doing so. But not all autistic people can respond to these strategies. As Ruti Regan of Real Social Skills, a website that analyzes attitudes about autism, puts it, “Walking lessons do not replace wheelchairs.”

Leo’s speech therapists helped us understand that he needs communication options besides oral speech. They were also instrumental in helping Leo learn to use his symbol-to-speech device. The tablet-like machine has a rectangular touch-based grid of icons that he can tap to ‘speak.’ But he only uses it to reiterate what he already says orally.

Unfortunately, there are few other options out there that are backed by research. It’s no wonder autistic people and their families feel compelled to try alternative approaches such as facilitated communication — a method that has been widely debunked by researchers (even though autistic users insist researchers are asking the wrong questions) — when available ones fail.

Please do not misunderstand me: I get why researchers dismiss alternative approaches that haven’t been scrutinized in a carefully conducted study. I also understand why they’re leery of investigating these approaches themselves. But where does this leave non-speaking autistic people?

I head a nonprofit group called Thinking Person’s Guide to Autism that advocates for approaches that are firmly rooted in evidence. So it takes a lot for me to ask scientists to look beyond their skepticism.

At the same time, I see mounting evidence that approaches such as the Rapid Prompting Method are helping people once considered incapable of communicating to open up. I wonder why some researchers scoff at the approach instead of investigating how it might help some individuals communicate.

Missed opportunities:

Jamie Pacton, whose young autistic son has been using the Rapid Prompting Method for years, says researchers are too quick to give up on some autistic people as being incapable of communication. “At the heart of this dismissal lies a deep strain of ableism,” she says. I agree. Like Jamie’s son, Leo appears to have fewer abilities than he actually does.

I don’t mean to imply that there is no research into communication support for minimally verbal autistic people. But autism is so heterogeneous that the limited number of studies can’t possibly address the needs of every individual. For instance, some autistic people have motor issues. There is no point in trying to motivate someone to speak if his body cannot comply.

We also need research addressing the best time to implement communication support strategies. Children with spoken language delays need evaluations and options as early as possible, in tandem with standard speech therapy. But we also need to know how best to support people like Leo when we realize, after early childhood, that they need alternative support strategies.

For people like me who are trying to make educated decisions based on scanty and often conflicting resources, it’s frustrating — sometimes infuriating — that professionals don’t have a framework for timing communication support.

Finally, we need research that addresses the real-world needs of minimally verbal autistic people. A method that works in a quiet clinic under the guidance of a therapist might not translate in the chaos of a home.

Communication challenge:

Our own family’s experience with communication support devices has been maddening. The user interface for Leo’s device is intuitive enough, and Leo learned it quickly. But setting up and troubleshooting the tool is a nightmare.

I once watched two experts debate for 10 minutes how to change a single icon on the screen. How are parents supposed to help our children get the most from their devices when even experts find the process challenging?

It also took more than a year of insurance and logistical battles to get Leo his current device, which costs upward of $8,000. For far too many autistic people and families, these cost hurdles are unsurmountable and, in my opinion, unconscionable. We need better options.

So, researchers, I know most of you want to make a difference. This is how you can help: Get past the misconceptions about options for helping autistic people communicate. Talk to autistic people who need communication devices, and to their families. Break new ground. Be revolutionary.

Shannon Des Roches Rosa is senior editor at Thinking Person’s Guide to Autism.


TAGS:   language
  • I agree with this in so many ways – that autistic people need to be involved with researchers. At the same time, I think there is something missing from that combo. Too often, people with autism are lacking a motivation to “speak” or express themselves. Communication brings about a certain level of social anxiety. It’s not just a lack of tools – it’s a lack of understanding what communication means to those with autism. I urge scientists to also bring Psychologists into this mix, to get at a real understanding of autism and communication.

    • Lucy

      Either that, or autistics are speaking and neurotypical researchers are not listening – for instance, they will ply the “you’re too high functioning to understand what real autism is like” line and many other such silencing techniques – and yes, they often are silencing, and sometimes they start out with lines like “shut up” or other requests to be quiet. I even saw a case on Tumblr in which someone used that line when the discussion was about how worried autistics are that they, or other autistics, including nonverbal ones, may be shot by police for suspicious behavior (this even happens to autistic white people, but is especially likely to happen to black autistics); how is “you’re too high functioning to understand” relevant to that particular line of discussion? It isn’t, unless you are trying to silence the one who is speaking – certainly saying that the speaker is too high-functioning to understand when the speaker is talking about how autistics, including themselves and implicitly including nonverbal autistics (strongly implied, as the article they shared talked about a deaf man using sign language), are under threat of being shot by police, is not serving the ostensible purpose of drawing attention to the needs of nonverbal autistics, because what the speaker referred to WAS including the needs of all autistics, both verbal and nonverbal. Oh, and the person whose blog I found it on is nonverbal – she can only type.

      This is the example: http://lysikan.tumblr.com/post/149378397685/autisticeducator-fuckyoursensibilities#notes

      This, along with many other examples, happens to autistics, as surely as it happens to other marginalized groups. I might add that there are autistics within the scientific community or aspiring to be in it who do not feel safe offering more than lukewarm or oblique support of neurodiversity in front of certain professors and colleagues lest they be pegged as “inappropriately biased due to their autism”.

      Thus, the thing is, many autistics are speaking, and neurotypicals are not listening, or are dismissing their words.

  • John Ordover

    I can describe what I would like to see developed, and it’s so much within current technology’s capability that is it kind of surprising it is not out there already.

    Note: I am not a speech therapist, so please take this as a general concept:

    Level one: The voice recognition recognizes the word “ball.” When the word “ball” is said, a ball of one kind or another appears on the screen. This is modeled by an animated mouth saying “ball” and then the user is left to say it themselves. So as they say ball, the screen fill sup with balls. When the screen is full, the balls vanish, and you can set the tablet to start again or to move to level two.

    Level two: Same thing again, now the VR recognizes “Ball” and “Basket” or some other noun. Once we have gotten through level 10, the user will have the option of “summoning” ten carefully selected objects/nouns.

    Level Eleven introduces verbs. It starts over with the solitary figure, but the animated mouth models Throw.

    The next level, or perhaps several levels later models “throw ball” Then a higher level Put Ball.

    I’m sure you get the idea. As the levels go up, the complexity of the language increases and moves more toward natural sounding speech.

    The important thing is that this is something that the kid can enjoy and play with themselves. As they master each new level, they get to play a game. For example, once they master “up” “down” “right” and “left” they can move the man through a simple maze. From there the possible complexity is endless, but it can only be done using speech.

    I’m sure this is a very clunky and non-professional description, but I’m also sure it conveys the idea and is not beyond technological capacity.

    Now we just have to find someone to make it.

  • Alexa Ferreira

    My son is highly autistic and I have found that speech therapy is really of limited use to him. What works for other students just doesn’t seem to have much relevance to his needs. There is also a shortage of therapists who are knowledgeable about Assisted Communication. We had to just go ahead on our own. We experimented with a few of the leading AAC for ipad programs and chose one that he actually seemed a bit interested in. From there, it is about modeling (using the device to communicate with the child). Consider that the average 18 month old has been exposed to 4,380 hours of oral language and that it takes an average learner 35 exposures to a new word to learn it, and you will see how necessary (and rare) immersion in AAC is. Unfortunately, even when the school is on board, immersion does not really happen there. I do agree that much more research needs to be done, Melissa’s comment below is also interesting, particularly the association between communication and social anxiety. This may partially account for the fact that many users get stuck in the requesting level of communication. I would love to see how developing technologies could be applied to communication in Autism. I think the author is right to call attention to this, so that research dollars can be directed there.

    • Ethyl

      It took a long time for me to realize this. We are asking so much of the kids. I think humor goes a long way to relieve anxiety, and Kate Ahern, special educator, highly rewards independent and “sassy” answers that make it fun to do other than request.

    • everest

      I made revolutionary discovery – first practical device for reading human thoughts or Brain Computer interface. In particular, I have created a perfect Speech Generating Device for people with Amyotrophic Lateral Sclerosis / ALS. Assistive technology or Augmentative and alternative communication. About the problem look : Jack Gallant, Tom Mitchell and Marcel Just; John – Dylan Haynes, human mind reading machine. The discovery has not been published. Russia.
      I live in Russia and I can’t to publish my discovery!

  • Ethyl

    I have enjoyed immensely the video’s Altteaching.org puts out. Particularly, Ethan’s video (https://www.youtube.com/watch?v=evjbx9_RiMY) Ethan has verbal apraxia and autism. I taught a classroom for severely and profoundly handicapped children. There was a little gal there, whom I finally figured out while giving her a alternative test with major accommodations…if one had her “slap” the correct answer…she only missed 2 of 100 items. I was profoundly humbled…and felt guilty that maybe I was giving her the answers, somehow, ala facilitated communication. I TRIED to come up with a communication device, but with severely involved cerebral palsy and cortical blindness….well, the only thing that really worked was her ears! I know she takes in lots of communication, I just never found a way to get it out in an independent way. She communicated A LOT, just not predictably independently, and…well, it’s really hard work getting there, for teacher, parent, and child. The Altteaching videos, promise me you will watch Ethans video..I watch all the videos, and am amazed at the adaption of regular curriculum and all the work they put into it. It would be a hard act to follow. I might choose to think the kids really don’t learn it, but memorize the answers, if I hadn’t had Paige, my favorite student, evah…..

    Paige has been on my mind forever. Another thing is, few people realize the time and intensity involved. You don’t just get an appropriate communication device and ba-da-bing, they have a voice. Kate Ahern is probably the singular most involved and wise person I have ever known in regards to teaching (and MOTIVATING) children how to effectively use their devices. I came across her while looking for ANY answers to teaching multiply handicapped kids, and as I am prone, I continue to follow her, with a vague notion that I know brilliance when I see it. Look at her Dec 13 post. http://teachinglearnerswithmultipleneeds.blogspot.com/2016/12/720-hours.html Seven hundred and twenty hours of immersion….how many special needs kids have had that with their communication device? Easier to just speak for them. There is a giant chasm between getting, hopefully, the correct AAC device, and then motivating a child to use it. It is a profoundly difficult endeavor, and it is just easier to let mom/teacher speak for you. So few have the time or patience to give to a kid to even try….let alone encourage them. It is easier just to speak for them, and they know it, too. I think Liz Ditz is another admirer of Kate Ahern. She may be a friend, I don’t know. But Kate is good at what she does.

    So…correct AAC, adaptive curriculum, and success are key. All are hard fought.

    I hope I’ve made some sense, I’m so distracted with Christmas coming. But these two people, Kate, and Ethan’s mom…I don’t recall her name. Here is a playlist https://www.youtube.com/channel/UCBRjXfiSVr1XzU5ZhAZkLMA

    I am thinking there should be a third person, but that person is you, maybe. It is tremendously difficult, and I think we have to realize our children communicate no matter what…OH, wait. Did you ever see Kreed’s Diary? Kreed has passed away, but his mom took a lot of videos of him getting used to his device. It is a very realistic look at a very communicatively handicapped individual, but they made the most of it. https://www.youtube.com/user/Kreedsvideos

    • Ethyl

      I don’t think scientists are prepared for the commitment these two mothers and a teacher are more than willing to give. It asks for a sacrificial dedication. It asks for us to believe our children/students can, and will, and will surpass our expectations. These are not typical attributes of science, but if scientists become the least bit humble, they can learn, and they can help to open up very narrow passages. I don’t have the energy, but these 3 women do. I think they are the most progressive and ~kind~ AAC “experts”, other than the kids, in the world. They see outside themselves, and that is a magnificent attribute.

  • Katie Wright

    Agree. It is so frustrating all around. My son’s speech therapist is terrific and works so hard but it’s been minimally effective. My son is the most frustrated of all. Despite decades and millions upon millions in ASD communication research – breakthroughs have been SO few. Its is time for researchers to listen to and work with these families. We want results, we understand the problem best and we don’t want to waste research money. Right now I see to many studies geared toward minimally verbal (Tager) people which basically just study how minimally verbal they are. That’s not helpful. We need meaningful and realistic interventions.

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