Your Nonverbal Child with Autism: Rethinking Priorities

Are you the parent of a nonverbal or preverbal child with autism?

If you are, your all-consuming goal might be to get your child to speak. You might think, “If she could only talk. Then our lives would be so much easier. She would be so much less frustrated. She would want to communicate with us. She would be able to control her behaviors because she could express herself. She would really develop socially. If we could only get her to talk, everything else would take care of itself.”

You may have your child in a school program centered on developing her ability to talk. You and the school may work for years so that you can hear even a few words emerge from that precious mouth. And now, finally, you have a child who has a little language. Fantastic, you think! She is speaking! It doesn’t much matter to you that she needs to be prompted to speak most of the time, or that most of what comes out of her mouth is repeating parts of movies. She can talk. The rest will come.
Or maybe the language has not developed…yet. But you are determined to keep trying until it comes. Because you believe that there is no success in autism treatment without developing speech.

Let’s think a minute about our focus, parents. Let’s first distinguish speech from communication. I often think of something Dr. Gutstein shared with us during consultant training. Dr. Gutstein said that parents who come to him often give as their number one goal for their ASD child “Getting him to talk.” Dr. Gutstein then says something like “Wait a minute. Do you mean talk or do you mean communicate? What if your child had plenty of language but only used it for scripting from video tapes, making his immediate needs met, or when he was prompted to imitate. You feel that this child really is indifferent about you most of the time, preferring objects over relationships. You note that he is extremely rigid and lacks resilience. You don’t have the trust, the emotional closeness with him that you know parents have with typical children.”

Parents almost always say that this is not the happy ending that they would envision for their child with language.

Dr. Gutstein continues: “On the other hand, what if the child has no language at all, but is motivated and competent to communicate with you continually in a variety of ways – with his face, gestures, body, in writing – and he communicates not only to make his needs known and met, but he also loves to share his thoughts and experiences with you and is excited to experience your ideas and feelings. You and this child who can’t talk have a great, close relationship. This child trusts you and looks to you regularly for guidance. This child is physically, emotionally and behaviorally regulated. What would you think then?”

When posed with this hypothetical situation, parents invariably say “That would be better!”

Did you know that, for persons without mental retardation, adult outcomes for verbal persons with autism are not significantly better than for nonverbal persons with autism? It is clear from outcome data that achieving spoken language is not "the answer" to achieving a successful outcome in adulthood - defined as living an independent life, being gainfully employed and financially self-sufficient, and having close relationships.

Even if your nonverbal child never develops spoken language - about 10-20% of persons with autism fall into this category, according to recent research – much can, and should be done to develop your child’s competence as a communicator. And by “communicator,” I don’t mean just a “needs met” communicator who is able to use signs or PECS cards to indicate that he is hungry, thirsty, needs to use the toilet, etc. I mean a true social communicator – a communicator who is interested in sharing his ideas and perspectives with others and is likewise interested in their ideas and perspectives. A person who values people over things.
Here are some steps to get parents started in developing these competencies in their nonverbal children.

1. Use less language with your child! Yes, you heard right. Less language. Seems counterintuitive, right? Shouldn’t you expose the child to as much language as possible to help him build HIS language? Not necessarily.

Parents who are anxious to get language out of their child often drastically over-talk and over-prompt. Over-talking; that is, using too many words and speaking at too fast a pace, puts great stress on the child’s processing capacity. The child is overloaded and tends to shut down or tune out. Moreover, the child often can sense the stress in the communication dynamic from the parents, and assimilates that stressful state, therefore preventing effective learning.

Make sure your language is brief – a few words at a time – and that you give your child plenty of time to process each thought.

Example:

Don’t say: “Jamie, put on your shoes because we need to go to a lot of places today. First we are going to grandma’s, the one with the horse, then to the store, and then we are going to your friend Jessica’s house. Remember Jessica? You went to her house last year. She has a pool.”

Do say: Let’s put on your shoes; we’re going somewhere.
(This may encourage her to say or sign “Where?” Then you could say with a smile “Someone who bakes you cookies and has a horse!” Which might encourage her to say or sign “Grandma?” Then you could nod with a grin, and she may say or sign “Yea!” (or maybe “Boo” or whatever! ).
Less language from you equals greater encouragement for a true conversation!

2. Stop asking your child questions! A regular barrage of questions fired at your child is a pretty effective way to make him shut down. Consider how you would feel if you were subjected to being quizzed all day, every day of your life. Think “constant, high-pressure interview.”

Why do parents ask their kids with autism so many questions? We do it because we are desperate to test their knowledge, to reassure ourselves that they are “learning something,” that we are succeeding in teaching them. We do it because we are desperate to have “some” type of interaction with our child, and quizzing seems to be the only way we can do this.

Questions should be replaced by comments. Or, better yet, with expectant silence as you wait for the child to take action and show his own competence.

Example:

Don’t say: Do you want some chips?
Do say: Nothing. Wait for the child to ask you for chips. If he is not hungry he won’t ask. If he is hungry and grabs them from you, don’t let him! Take them back and have him ask. Never allow grabbing.

Don’t say (when child is crying): “What’s wrong?” Most likely he is not able to communicate what is wrong and your direct question just places additional stress on him.
Do say: “You’re crying. You’re upset. I’ll try to help you feel better.”

Don’t say “Do you want to put your shoes on?” if you want him to put his shoes on. He may say or sign “No” and then what do you do?

Do say “Time to put your shoes on,” “Let’s put your shoes on,” etc.

3. Use your face and your child’s face as the primary mode of communication.
Typical babies learn to be proficient communicators through their faces and the faces of others by the time they are 12-18 months old. This happens before spoken language develops. Competence in facial communication is a critical developmental prerequisite to spoken language. This is the time that babies learn how to share experiences with others, the basis for social communication. Persons with autism who learn to speak but lack the nonverbal foundational skills will not become proficient at social or experience sharing communication. They will be relegated to a life of instrumental or “needs met” communication. Babies who have not yet developed language are amazingly fluent and proficient communicators, not only to make their needs met, but for social, sharing purposes also.

Think about ways to substitute facial communication for the verbal communication you would normally use. Start small, like using a head nod or shake rather than a yes or no. Look into your child’s eyes and smile often. Think about all the facial expressions you can use to convey to your child the feelings inside you. It is said that the eyes are the pathway to the soul. There is no better way to develop an emotional connection with your child than to develop a strong foundation in facial communication.

4. Share your own thoughts, feelings, ideas and perspectives often with your child. Get in the habit of “thinking aloud” and purposefully sharing those thoughts with your child. Your child will feel respected and included in your life. There should be no quid pro quo involved – you should not require anything of your child other than his attention to what you are communicating. This means you are NOT looking for a response or a behavior. Silence is fine as long as you sense he is attending or listening. You will need to be mindful of the pace of your communication to ensure that you are not overloading his processing capacity.
Examples:

What a beautiful sunset. (Pause, smile). I’m so glad you’re watching it with me. (Pause, smile.)
OOO, this traffic! I’m so frustrated!
Hmm, I wonder what I’ll cook for dinner tonight. (Pause). I know, chicken. (Pause). I know everyone likes that.

If you consistently adopt the above strategies, your child will be more motivated to communicate with you, and you likely will enjoy communicating with your child more. And you may start to see more language as a bonus, even though that is not the goal!
Enjoy the experience with your precious child. Your relationship is more important than words!