Learning to listen to those who don’t speak

“My brain knows what it wants to say but my body does not cooperate”

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For decades science has assumed that non-speaking autistic people have major language impairments in both comprehension and production of speech. But in recent years increasing numbers of non-speakers are finding alternative ways to communicate – for example, by pointing to letters or typing. Some of these individuals demonstrate advanced language skills and have written books, blogs, poems and more.

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A major problem that non-speaking autistic people face is that the interventions that enable such communication lack scientific validation. There is a particular lack of research into non-contact letterboard methods. Examples include Rapid Prompting Method, and Spelling to Communicate, which proponents argue lead to self-generated communication. However, they have also been heavily criticised. In these methods, a communication partner holds a letter board up for the non-speaker, and facilitates communication by providing a series of prompts that help them to regulate their bodies and keep themselves on task. Overt directing of the non-speaker's interaction with the letter board is used, initially, until the motor action of pointing and structure of the sessions are learned. This has led to fears about whether language is indeed self-generated and to what extent it is influenced (even unconsciously) by the person facilitating. A recent eye tracking study however, has shown that spellers fixate on each letter long before they point to it, suggesting that outright dismissal of these methods is unwarranted.

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We sought out non-speakers from around the world, to ask what they wished scientists knew about how their mind and body works and what they’d like to see researched in the future. We received 15 responses from young people age 10-23 across 5 countries.

 

The responses we received were punctuated with jokes, feelings and language that individualised each non-speaker and their personality.

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“I am lucky to have lots of people around me that can use the letterboard. Sometimes I am too lazy to communicate but usually I do it. However, I am in great hands and want to learn as many languages as I can. I love Latin and French but I also want to learn German and my Dad is going to make a Latin book for me. To be honest, I not only love languages I also love maths. . . . . . I love history and would really love to go to Cambridge University like my Dad. I very much like studying but it is very difficult to access good teaching.”

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When we asked what non-speakers would like us to know about their brains, the message was clear: My brain is disconnected from my body, I am intelligent, I am in here, you just can’t see it yet. We heard this over and over again:

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“I am fully aware of what people are saying to me. I might look like I don't understand on my face but that is how my disability presents itself to most people. I have a motor disability. My body will not practise what my brain tells it to do. I struggle with this every minute of each day.”

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“Unfortunately I live in a rogue body, it's impulsive and unpredictable which makes even the simplest of tasks hard. Imagine living in a body that doesn't obey your brain.”

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“I would like to tell scientists that the response to language among non-speakers will vary according to who the speaker is, if they are familiar.  . . . . Something typicals don’t get has to do with complexity of language. Shakespeare is really your best example. My mind is alight when listening to plays by the master of the English language, where simple words are easy to tune out. My response to language finds many reasons to fluctuate. It would be very different in an clinical setting with strangers than it is at home with my mom.”

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There was a real sense of frustration in some of the responses as well. Respondents wanted recognition of their abilities and access to support for letterboard therapies. Grievances were also expressed about the low expectations of professionals and the impact that can have on a non-speakers ability to communicate and to keep their body and mind calm.

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[I’m] “Hoping this research inspires the scientific community to finally treasure our thinking minds and give us the opportunity to be happy and truly valued as contributing productive minds. Communication is easy when sharing my ideas with mostly master thinkers, my mom and my friends who value my true potential. I find it difficult to express my thoughts with people who sabotage the truth about our master competence.”

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When we asked about future directions for research, we received a variety of creative and interesting ideas, ranging from studying why they struggle so much with motor control, to how does this “mind and body disconnection affect the way we think?” Respondents also asked us to understand what makes speech so difficult, and how they can help themselves “access intelligent speech.”

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We haven't been doing enough to understand why non-speakers don’t talk. The dominant paradigm has assumed there is an impairment in language, and then focused on how and why language is impaired. Strong feedback asking us to instead “study how we retain our ability to use words to convey our thoughts” sends a clear message: pinpointing the mechanisms of language impairment could be missing the point. These research suggestions from non-speakers propose exciting new directions for science to focus on, which may more fruitful.

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In line with this feedback, our own research focuses on developing non-invasive passive tools to understand how non-speakers process spoken language. We aim to do this by studying language processing from neural responses which bypasses the need for behavioural or spoken responses that are difficult to evaluate. We aim to do this in partnership with non-speakers, taking their research priorities seriously, and enabling them to help us make the research accessible. We would like to thank all the non-speakers, their families and communication partners for sharing their views. Your input has been extremely valued.

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As the 8-year old autistic non-speaker who inspired this research once said: “Speech is not a good indicator of intelligence. Some really stupid people never shut up. Some geniuses never speak.” It’s time for us to speak less, and listen more.