I’ve recently made some new friends. I want to explain about my brother and how he is severely Autistic and non-verbal. People often hear the Autistic part and don’t really pay attention to the non-verbal part. This can be difficult as it means people make an assumption about what my brother is like. They might assume he has high functioning Autism and leads a fairly normal life. In the past I might have left this assumption and dealt with it later when the topic of my brother has come up again. But over the years I have come to provide more explanation about the non-verbal part, because as a sibling this means a greater amount of responsibility and care is needed for my brother.
Being non-verbal is an important aspect of my brother’s disability. I want to provide an explanation of what being non-verbal means and what it doesn’t mean in my situation (every disability is unique). A definition of non-verbal is to not be able to use words or speech. It isn’t the case that my brother doesn’t have any words at all but he wouldn’t be able to have a conversation or form full sentences. His speech is often singular words or reading out from a list of words.
What does it mean to be non-verbal
- He will find his own way to communicate. My brother would prefer to take my hand and bring me to the thing he wants or point at it.
- He finds it difficult to communicate what he wants and so may become challenging if we don’t understand. He might try to hurt himself or hit a wall. It’s upsetting to see this as a sibling and I’ll try to ask him to type what he wants or suggest options of what it could be.
- He won’t say excuse me or thank you when walking through a door. The polite interactions that people often have when out in public don’t exist for my brother. He wouldn’t say excuse me or interact in this way and it can often be upsetting to see the way the public respond to this.
- He has his own version of words. My brother might say a word very quickly or miss some letters out because that is how he thinks the word should be said. One of his favourite phrases is ‘All finished’ when he has completed an activity. However, he often says this phrase very quickly and support workers have called me in the past wondering why he was repeatedly saying ‘obelisk’. To someone that knows my brother the way he says certain words is easy to pick up but for anyone new it is like learning another language.
What doesn’t it mean to be non-verbal
- People might assume because my brother is unable to have a conversation that he isn’t intelligent. This is certainly not the case and it is sad and frustrating that people make this assumption. He can read and he can type and he is excellent with anything technical like phones and computers. He has an incredible memory stretching back to childhood. Just because he is non-verbal it doesn’t mean that his brain isn’t incredible! Please note that everyone’s sibling is unique and it may not be the case that they are non-verbal and can read and type like my brother. It’s important not to make assumptions and take the time to find out what a sibling is comfortable sharing about their brother or sister.
- It isn’t true that he can’t show love and affection. My brother is still able to show affection despite not being able to convey the words in the same way. He will ask us for tickles and put his nose against ours. He has his own methods for showing us that he loves us which mean so much more.
In summary, it can be difficult to explain a disability to someone that isn’t familiar with it. It is important and helpful that people try not to make assumptions that a sibling will then feel uncomfortable clarifying later on. It would be useful if people offer a couple of seconds of quiet if a sibling is explaining about their brother or sister. This short time of quiet would allow a sibling the opportunity to further clarify what their sibling having a disability means in their situation and fill in any gaps before assumptions occur.
As a sibling I’ve found one of the best ways to provide an explanation of my brother’s disability is to show a short 30 second video of him. It helps to show that he is a happy, cheeky adult with Autism that likes to jump and flap his arms. A video shows that he makes happy noises that can include words but not sentences. Showing a brief video saves me providing a long explanation so I find this helpful on occasion.