Most people don’t think much about how they communicate, and even less so about how they learned to communicate. It’s only when you are in the situation many of us who are providing a mobile phone for a child with autism, ADHD, or some other difference, that we need to take a step back and think a little about how communication works.
Although by the pre-teen or early teenage years when it comes to the time to provide a first mobile phone, many of these issues will likely be understood or second nature, the chances are many issues will resurface, given the unusual nature of communication at a distance. At ParentShield we have many parents in this situation so have built many features into the network to build a phone service for special needs users like no other.
We thought it might be useful to have a quick recap of how communication is affected by autism, and a few things that people find can be helpful. At ParentShield we believe that providing a mobile phone as early as possible is the key to teaching safe and responsible usage.
How does autism affect communication?
Many Autistic people absolutely hate talking on the telephone. It’s a thing that for some people takes a bit of work to master. But with a bit of understanding about autism and communication, hopefully it’s an issue that can be worked through.
Autism makes communication different in many ways. And although it’s possible to describe them in many ways, the degree that each person will experience any one, or any combination of them will vary considerably. We all communicate differently, and young people with an ASD diagnosis are no exception so this is provided as a guide to understanding the issues rather than an explanation of what we can expect.
Difficulties initiating communication
Individuals on the Autistic Spectrum will often be less likely to initiate communication. We may translate this as ‘just being shy’ but it’s worth considering how and why this may be different and what can be done to help. There are lots of studies around the subject and people trying to find why some autistic individuals appear to have a different ‘theory of mind‘ to some others.
There are several stages that you have to pass through to communicate in the way we often think of a phone call being.
Communication can be:
- Pre Intentional
- Intentional
Pre-intentional communication is when a person uses words or gestures without expecting it to turn into an exchange. In many cases it either provides comfort or is a reaction to how they are feeling. In many cases it’s not a solicitation of a conversation or communication, and often can be the exact opposite. An person with autism may say something, expecting a familiar response as the book-end to an activity or event, rather than it being an any sort of attempt to initiate a conversation about the subject.
Intentional communication is a big step. Initiating communication to convey a need, make a request or explain a situation is a huge leap. It means entering into the unknown! Unlike communication that returns a reliable and trustworthy response, it means leaping into a ‘conversational dance’ and not knowing where your partner will go next. Even using communication to protest about an event can be difficult if you don’t know what will come next, and the prospect of a negotiation is out of the question!
The move from pre-intentional to intentional communication comes in a few stages and there are things we can do make these steps easier.
Oi! or the “own agenda” stage
The first step in communication will likely be completely for their “own agenda” and completely disinterested in what others want, understand or feel. Banging a cup on a table to request a drink, or saying the word “drink” is communication non-the-less!
It works!
With a little confidence and practice it’s possible to initiate a reliable response to the own agenda communication – knowing that it gets an understandable and more often than not, predictable, response. This allows someone to request something and have that person understand what is needed and fulfil that need. In many cases it may be seen in the same way as pressing a button on a tv remote control and reliably being transported to the desired channel. Were we ‘communicating with the tv?’ Whatever level of communication you see this stage as, it’s a huge step. We want or need something and we can use communication to make it happen. That’s winning.
Early Communication
The next step comes when we start to need form more complex requests or ask questions. This is where the shift from pre-intentional to intentional communication happens. It can be very subtle. The fall of your footsteps as you walk over to the individual making a request, the shift of your, or their gaze as the question is asked or a response is given all play a part. A child may hand you their cup to be filled with water or juice and will accept that as an “it works” communication, but before any chance of a discussion of what type of drink it may be, they may pause, watch your reaction, or hold onto the cup in a small ‘tug-of-war’ moment in the hope of kicking off the next step in a conversation. It’s easily missed, and it takes another big step before making this a clear communication.
Understood!
As the early communication moves on, starting in familiar situations, between people who have reliably understood the subtle signs of early communication, it’s possible to move on to what can unambiguously be described as “having a conversation”. The two partners can exchange information about their situations and come to a mutual understanding. Although this can happen with familiar people, it’s a step that can still be hard to translate to communication in a new situation, and with strangers. Frustration easily sets in and communication can easily grind to a halt.
What can we do to help a person with autism move through these steps?
Allowing the person with autism to set the vocabulary, methods, or signs and following their example means that you can respond in a way that will be understood. If I only know the word ‘juice’, saying anything else in response is frankly a waste of your breath. I appreciate the effort, but, frankly, whatever!
Following their lead means being understood. If I knock my cup on the desk, then knock it back in acknowledgement and we’re on the same page. Removing stress of an unexpected or un-solicited response allows us to move things on to the next steps. It might feel as if it’s accepting a low level of communication, but you can see and feel how being on the same communication page removes stress and allows things to move forward.
Where communication starts to include words, simply repeating that word in acknowledgement is a comforting and reliable first step in learning to use words in a conversation.
Expanding the phrase
We learn language by attaching words together and learning how they relate and modify their meaning. If a person learns ‘dog’ and says it when they see a dog, even when it’s still a pre-intentional communication you can expand the echo and word with a reply “big dog”, “little dog” etc and that’s a great little conversation and another set of words that can be understood and used appropriately in future.
Making eye contact
Everyone who communicates with people with autism will be familiar with the fact that eye contact is a powerful resource. It’s often difficult to maintain but there is so much innate communication in a glance. We evolved as a species and could communicate long before speech was developed, understanding others’ intentions by seeing what they are looking at. Our front-facing eyes are a beacon of intention and understanding.
Getting down to someone else’s level can mean literally doing just that.
Putting time aside for communication
When communication starts at the beginning it’s easy to just go along with the flow and fetch the drink, deliver the biscuit or whatever is the request. But in stead you can treat it as an invitation to a conversation and use each pre-intentional “my own agenda” communication as an opportunity to have a ‘conversation’, no matter how simple that conversation may be. Just repeating the simple exchange, or adding another mode, a sign, gesture etc will make a big difference.
Use alternative communication methods
Where someone has a very low usage of spoken language, using alternative modes of communication can be helpful.
Imitating the communication, or adding some BSL or Makaton into the communication can be simple and effective. Some people use a picture board or other symbols with something like “PECS” Picture Exchange Communication System. This means that other people can be more easily brought into the elite club of people who will understand, and can participate in, the conversation. Alternative communication methods can be very powerful tools, and may be very effective.
Creating opportunities for communication
If communication starts with simply pointing at an object, or even just glancing sideways at it! it can be helpful to have favourite things – a jigsaw or game, or toy physically in sight so they can be indicated. Their sight can prompt the idea to engage with them, that then prompts the communication that is needed to get you to reach up to a shelf and begin that activity.
Use positive language
Negatives are not wanted. The use and understanding of negatives is likely something that will come along much further down the line. Sticking to positive phrases and statements is usually safer.
Don’t be fooled
We grow up learning the power of conversation. it’s easy to think that just because someone has provided a sensible answer to a question or in response to something else that has been said, that means that the conversation has been understood! It certainly doesn’t always work like that.
Echolalia is the term to explain an autistic repetition of words or phrases. It can be the repetition of what other people say in that situation, or can be a favourite phrase or set of words from a favourite TV program. Being aware of how these echos appear can provide clues about the intentions and feelings of the autistic people where the actual words themselves might be out of context and useless.
Co-Parenting an Autistic Child
ParentShield has a set of features designed to make it suitable for those who coparent a child. There may be more information on that blog post too.