John Elder Robison

On Thursday, Dani Bowman, me, and a moderator from Intermountain Centers of Tucson Arizona held a Q&A and discussion before screening the film The Reason I Jump. Before the event Dani and I met with Niko Tax, a nonspeaking autistic fellow who’d written me the week before. This is the message he sent:
I am part of a group of young men with autism, who are non-verbal and communicate with letter boards. We were wondering if there might be time in your visit to speak with us as a small group there are about 6 of us. We often feel a little stuck about our future options to find successful ways to contribute to society.
I did not know if the message had been written by Niko or by a support person, and I did not know exactly how we’d communicate, but I agreed and on the afternoon of the event, he arrived at the hotel with two support people. We found a quiet corner and sat down. One of the assistants sat beside Niko and held up a letterboard.
For those who have not seen these, letterboards are about a foot square with the letters of the alphabet on one side and numbers and symbols on the other. Faced with the board, Niko began to type out. I A M G L A D T O M E E T Y O U. I answered that I was glad to meet him too, and I heard an immediate acknowledgement from him even as he began punching more letters.
This process – spelling to communicate – is controversial because the autistic person is dependent on the assistant. Yet I’ve had other non-speaking people use similar technology entirely independently, and that’s not controversial at all. In our weekend summer classes at W&M we’ve had several nonspeaking students use iPads or physical letters to spell messages and converse.
Another worry people express is that the addition of a facilitator leaves the listener uncertain whether they are hearing the thoughts of the autistic person or those of the facilitator. You can’t be sure unless you are there and looking at the words as they form. In this case I saw the words form in a very steady stream.
The dependence on a facilitator is also a problem because they presumably aren’t around 24/7, and how does the autistic person communicate in off hours?
Yet it works in some instances when independent methods like the iPad don’t. People are right to be skeptical for the reasons above, but at the same time, spelling with an aide may become the communication tool that works for some, even as it fails for or frustrates others.
I believe we need to be flexible and be armed with a wide variety of assistive tools because nonverbal people are nonverbal for a number of reasons, and there in no one assistive tool that works for all. Frustratingly, we have no good assistive tools for some of the population, and it’s self-evident that communication failure drives frustration and can lead to aggression and self-harm. During my time in government the development of communication technologies for nonspeakers was always a priority, but one where progress has been frustratingly slow.
Could Niko speak independently through an iPad? I don’t know. His assistant said the letterboard worked better because Niko had better gross motor skills than fine motor skills, and he did better moving his arm to the board than using his finger on a tiny keyboard.
Yet he somehow got a message to me through his phone – a succession of messages actually – and I never reconciled that.
There was no question about Niko’s desire to talk to me. I could also see him take in every word I spoke in response, and he sometimes shouted or grunted to immediately respond to something I said, while typing a more detailed comment.
H O W C A N I G E T R E S P E C T L I K E Y O U was one of the most poignant things Niko said to me. I told him many people could not believe an autistic person like me was able to write the words in Look Me in the Eye twenty years ago, but people accept that many of us can write and express eloquent thoughts of our own now. Just like anyone.
I told Niko that many people were still skeptical of nonspeaking people having something to say, and it was going to take people like him writing, posting, and publishing to change that conversation. Every person he talked to would be one more person who realized he had his own thoughts, needs, wants, and dreams. Just like anyone else.
People often assume nonspeaking people can’t make choices because they can’t speak. Given the right tools, many can. I wish I could say “anyone could” but that is not true with the current state of technology and knowledge.
Niko certainly had a lot to say, and later at the event, it was clear his friends did too.
I hope engineers and scientists find ways to help more nonspeaking people communicate effectively. I hope we develop and deploy tools that help Niko and others who currently rely on assistants the ability to communicate independently. The assistants still have a big role – in teaching people to spell and use the tools – and their time is best spent teaching people to be independent, as opposed to supporting a much smaller number of Nikos.
Afterward, when we were in the lobby, it was clear what a huge star Dani was to many of the younger attendees, thanks to her appearance on Love on the Spectrum.
Dani and I show a different flavor of autism that Niko and the autistics in the film, but we are autistic; all equal members of this community. As I told the audience, the more able of us have a moral duty to support the less able, and to ensure we all have access to what we need to be safe and secure.
I really appreciate Rose Lopez of Intermountain Centers for having the courage and determination to put this event together and for making Dani Bowman and I a part of it.

Some memories of the late Ace Frehley today from Channel # TV and Western Mass News

Amherst man recalls 50-year friendship with Kiss guitarist Ace Frehley While Ace Frehley's death is impacting people around the world, it also hits close to home for one western Massachusetts resident, who knew the guitarist for half a century.

Elephants on Parade at The Big E yesterday