Awareness is placed on many disabilities in March and April, and I would like to shine a little light on a few of them, before delving into a topic I think is relevant for several. In March we have World Hearing day, Neurodiversity Celebration week, World Down Syndrome day, Purple day (epilepsy), and World Bipolar day. April is Autism Acceptance month, as well as having World Autism day and World health day. Several of these disabilities and conditions can at times benefit from some additional ways of communicating. I will talk about some of the different alternatives to speech, talk about how to communicate with someone who uses these methods, and touch a little bit on reasons why someone might not be able to say everything they need to, or want to, say through speech alone.
You might wonder why I chose different ways of communicating as my topic for this, especially if you have seen me speak, but I am only able to speak up to half of the time. Additionally my language disorder means I have insufficient, intermittent and unreliable speech which is not unusual in autistic people. I was only diagnosed in the past few years, however, as my ability to use scripts and echolalia hid the immense challenge that creating speech, and novel speech in particular, is to my brain. When I cannot speak I use a combination of British Sign Language, AAC (Assistive and Augmentative Communication), both high tech and low tech, and body language. All the different ways of communicating have different positive and negative sides, and I find that having a combination of different tools available to me is very helpful.
Using British Sign Language (BSL) is great, as it opens up a whole new community. I have found that it fits my mind really well, and I pick it up quickly, and I have found having BSL interpreters at events with a lot of noise in the background very helpful, as I can more easily focus on what is being said. The only drawbacks for me with BSL are that I have to rely on the people around me knowing it, and that my body is not always up for signing.
I also have an AAC device, which is essentially a tablet computer with a specially made program for communication. There are many levels of AAC devices, from made for purpose digital devices, through devices like mine, or low-tech where you print out words and record your own words. There is also no-tech AAC, which I will talk more about below. My AAC device is set up with a keyboard, but they can also be set up with symbols organised in simple ways to help the user communicate effectively, even if they are not able to read or write. Unfortunately due to my Ehlers-Danlos syndrome, using my hands to type on anything gets extremely painful within just a couple of sentences. I use a switch to scan through the keyboard, so that I can type without using my hands, but this is extremely slow. There are different types of switches to suit different needs. I have also tested out Eyegaze technology, which uses a camera to track your eyes. I found that solution to be great, and hope to get to use it more in the future.
Prior to beginning my journey into BSL and getting an AAC device, I used different variations of no tech AAC. I had a letter board, white boards to handwrite things, and words, symbols and phrases printed out to point at. This approach was slightly more tedious, as people are slower than technology (I know, shocking!), and relied on either having the right things printed out, or doing a lot of spelling things out on the letterboard, which again, was quite slow, and would also cause pain. It’s a great option for simple, short messages, when you need to say something you say frequently, or when there are reasons you can’t use the more high-tech solutions, such as if there is poor weather, or you have to conserve power. I also have a partner assisted scanning book which has key questions people can go through and I can indicate my response, if I am unable to use the other forms.
Gestures and body language are the last type of non-speaking communication I am going to mention today. This option relies heavily on your communication partner knowing you and anticipating what you might be needing to say when you are communicating with them. It requires patience and understanding from both the person communicating and the person being communicated with, as there is so much room for mistakes. Agreeing on some gestures meaning certain things, creating some personalised signs, if you will, can help ease this, and make communicating easier. Developing tools to make communication easier, and showing that you have the patience to keep working on understanding them is important, and means that everyone’s voice is heard, not just the voices of those who are able to speak the most clearly and the loudest.
When you encounter someone who does not speak, no matter what way they communicate, whether they use BSL and have a translator, or they use an AAC device, or they have a carer with them who helps them communicate, speak to them directly, and treat them as you would someone else their age. Using an AAC device does not mean that your understanding is impaired, and if you need to adjust the way you speak, they, or someone with them, will let you know. The key is to be patient, let the person trying to communicate have enough time to do so. If their communication requires guesswork from you, be understanding in your guesses, take in context clues, what are they more likely to be wanting from you based on what is around you, and the situation.
There are so many reasons someone might not be able to communicate through speech, and I am not going to be able to list all of them here. BSL is, of course, mostly associated with the d/Deaf community, though not all d/Deaf people sign, and not all signers are d/Deaf. Many people also associate AAC devices with Autistic people, but there are many other reasons you might not be able to speak. Physiological, neurological, and mental health issues can all cause problems with speech, whether these problems are life long or passing. Please keep in mind that everyone experiences life differently, and what might be easy for you might be exhausting and hard work for someone else. And vice versa! Always meet people with kindness, patience, and understanding, and try to include everyone in the conversation, even if they don’t speak in the way you are used to.