How do we stop folks from talking past our nonverbal son?

This “Got Questions?” answer is by Lucia Murillo, former Autism Speaks assistant director of education research

Our son is nonverbal but understands perfectly what others are saying. How can we help people understand this so they stop talking “around” him as if he’s not in the room. Even highly educated people like his doctors tend to do this. How can we help educate people?

It’s common to encounter the lack of understanding you describe. This is particularly the case when it comes to recognizing that communication is more than just speech. A person’s language ability encompasses both “expressive” and “receptive” language.

Expressive language involves communicating one’s feelings, wants and needs to others. Receptive language is the ability to understand what others are communicating.

Importantly – and I think this is the point you’re struggling to convey to the people in your son’s life – a lack of expressive language does not mean that a person lacks receptive language skills. Receptive language skills vary greatly among nonverbal individuals affected by autism.

I sympathize that it can be discouraging to have to repeatedly explain this to other people. So it’s great that you seem to welcome the opportunity to educate others. I hope I can provide some help.

Let’s start with a little more about expressive and receptive language.

Expressive language – not just words

Most of us think of expressive language as verbal – i.e. involving words, phrases and grammar. But it can also include nonverbal language. We all communicate non-verbally. For example, we use gestures, facial expressions, eye contact, postures and tone of voice.

Autism can involve difficulty with both verbal and non-verbal expressive language. However, many nonverbal individuals with autism learn to use gestures and pictures to communicate their needs and interests.

Receptive language – understanding others

As with expressive language, receptive language skills can include both verbal and non-verbal expressions. Most children develop receptive language before expressive language. We see babies and toddlers begin to understand those around them before they learn to use gestures and words.

The ability to comprehend another person’s communication varies greatly among individuals affected by autism. This variability can make it harder for others to easily grasp your son’s receptive language skills. As you’ve experienced, this can include doctors who have worked with individuals affected by the disorder. Perhaps they have had limited experience with nonverbal children who have autism. Perhaps they lack a clear understanding of the wide range in receptive language skills. As the reminder goes: “If you know one person with autism, you know one person with autism.”

So while it can be frustrating to deal with this lack of understanding on a regular basis, here are some strategies to help turn these encounters into teachable moments.

1. Be calm but direct. Politely inform those who start to talk “around” your son that he can understand language and that you prefer that they speak directly to him and include him in the conversation.
2. Create a personal profile sheet. In it, describe your child and what you want people to understand about him. Give this sheet to professionals who work regularly with your child. Keep a few handy to share, as needed, in situations as they come up in your son’s daily life.
3. Become an advocate for your child – and all those with autism – in your community. Consider participating in school parent groups and other community organizations where you can spread autism awareness. Help others understand the special strengths and challenges that come with being on the autism spectrum.
4. Remind yourself that most people mean well. However, most won’t understand that they’re not relating to your son appropriately unless you share your insights. Don’t be shy about proactively addressing questions that people might be embarrassed to ask. If you do so in a positive manner, I think you’ll be contributing to better communication – for everyone involved – in the future.