Communication Access: The Right to Try and the Need to Know

Communication shapes whether we can express a need, refuse something, share an idea, build relationships and take part in decisions about our lives. For a nonspeaking person, access to a reliable way to communicate can affect far more than a therapy goal. It affects their entire quality of life.

I am rewriting this website shortly after my son James turned thirteen. I have been overwhelmed by thoughts that I got important things wrong. That is painful to write. I am sharing it because another parent may be trying just as hard while facing similar gaps in understanding, expertise and practical support.

Pat Mirenda writes about the stakes of getting our assumptions wrong. She writes:”When we talk about communication we are talking about
peoples’ lives, no less than that – so there are no degrees of freedom …

I think we need to question what we think we know about people with ASD in
general and how we support and how we support those individuals whose speech does not develop through AAC in particular. I think we need to do this because there is a growing body of science that suggests we may have gotten it wrong, at least some of the time, for some individuals. I think that it is not okay to get it wrong for even one person.”

Mirenda’s words also ask something of professionals and researchers: to leave room for doubt about what they think they know, and to change practice when they learn more. Communication is central to a person’s quality of life. That makes access urgent.

The right to an opportunity

James is autistic, nonspeaking and has complex learning and support needs. Those realities matter. So does what I cannot yet know about what he might learn with different opportunities. Pat Mirenda asks practitioners to question assumptions that may narrow the communication and education offered to nonspeaking autistic people. Her warning makes me want to look again, rather than decide that the chance has passed.

Mirenda’s challenge extends beyond one communication tool. What do we think we know about a person whose speech or cognition has not developed? What have we offered them to express ideas, learn to read or take part in education? And when research changes our understanding, are we willing to change our practice?

A movement for nonspeaking people

Communication is central to a person’s quality of life. That makes access urgent. There are no prerequisites for beginning AAC intervention. We can offer different ways to communicate, observe carefully and adapt without first requiring someone to prove they are ready. Offering an opportunity is not a promise that one method will work. It is a chance to learn with the person. ASHA guidance on AAC.

In April, learning about Communication 4 ALL brought me both grief and hope. Founded by nonspeaking advocate Elizabeth Bonker, the organisation campaigns for nonspeaking autistic people’s access to communication and education. It shares accounts from people who type to communicate and works with families and schools on typing access. Communication 4 ALL: Our Work.

Some advocates describe years of being underestimated and offered a narrow education before finding a way to express themselves. Yet some of these methods of partner-supported spelling and typing are disputed because a partner may influence a message without intending to. ASHA advises against RPM and Spelling to Communicate, citing concerns about prompting, scientific validity and authorship. ASHA position statement.

Those concerns should not be used to withhold AAC, letters, reading or writing. Opportunity and Access being central to the idea of enriching a persons life through presuming competence and presenting communication in a meaningful manner ,rather than a target to be checked.

What made it difficult for us

I learned about speech-generating devices, AAC and Makaton largely alone, online. The speech therapists we brought in were unable to connect with James and with us in a way that made the approach workable. At the same time, I was caring for a child with substantial support needs and was often exhausted. Visual schedules, signs, spoken language, AAC, Intensive Interaction, Floortime, ABA, motivation and engagement: there was so much to understand and put into practice. Making a device and printed communication materials accessible across home, school and daily life takes time, suitable tools, knowledgeable partners and continuing support. I believed I was doing my best for James. I also see that I did not offer him enough sustained opportunities to develop a robust way to express himself.

I cannot give James back the years that have passed, as terms, research and practices around autism continue to change. Mirenda’s call to question what we think we know is therefore not a task we complete once. It is a way to keep learning, including when new evidence challenges an approach we have trusted.

I begin looking at my own decisions through the lens of everyday harm: the effects of ordinary actions or missed opportunities, even when people intend to help. I am still making sense of what it means for us.

I hope another parent reading this hears an invitation rather than a judgement. We may not have known what we did not know. We can seek support, learn more and offer another opportunity. It is not too late to begin.

Sources and further reading