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!

Limit setting with ASD: Finding the Right Balance

Persons with autism have as a core deficit a limited capacity for what we call “dynamic thinking” – that is, processing and adapting to situations involving change or uncertainty. Many of my discussions with parents concern how to challenge their child to new, more flexible ways of thinking – remediating this core deficit of autism. Keeping in mind the child’s tendencies toward rigid thinking, rapid emotional dysregulation when challenged, and limited resilience, parents must balance challenge with appropriate compensations in order to arrive at the “right” level of challenge to remediate the primary deficit. In RDI® lingo we call this “right” level “productive uncertainty.”

Persons not familiar with RDI® sometimes have a perception that remediation through the RDI® program must involve specific “RDI® activities.” This is not the case. Perhaps surprisingly, the most ordinary of situations from everyday life with the child can be transformed into dynamic thinking opportunities with a bit of mindful parenting.

Imagine this scenario, for example:

You are in McDonald’s with your ten-year child with autism. Every time he goes to McDonald’s he always wants the same thing, a cheeseburger Happy Meal with a PLAIN cheeseburger and chocolate milk. He is obsessed with Plain Cheeseburger Happy Meals. He would eat them 24-7 if he could.

(How many of you have such a child, or a child with a similar obsession?)

Since you believe in picking your battles, when you happen to be at Mickey D’s, you usually let him get what he wants. You also are keenly aware that he does not like to be babied and wants to do as much as possible, independently, without your help. He has made this known to you in no uncertain terms.

“OK, you can tell her what you want,” you say.

He asks for a cheeseburger Happy Meal with chocolate milk. He did a fine job ordering, you think. The food comes, you both sit at a table, and he immediately asks to play in the Play Place. You say, after you finish all your food. He says OK. So far, great, you think.

Then he opens the burger. Oops. It has ketchup. Onions. Pickles. And, horror of horrors, mustard.

He had forgotten to say “plain.”

“It’s not plain! I can’t eat this! I’m going to get another one!” He is visibly upset. He starts to head back toward the counter.

Decision point for you.

Many things flash through your mind in an instant: He is hurting. Struggling. This is too much variation for him. Too unexpected. He can’t handle it. It hurts me to see him like this. What would a good parent do with a typical child who acted like this? What would a bad parent do with a typical child who acted like this? What would Dr. John Rosemond say? How much mental challenge is “enough” for him? How much is “too much?” Is “too much” permanently damaging? And why am I obsessing over making a decision about a lousy cheeseburger? Who cares, anyway? It’s only a buck! Is giving in this one time going to make a difference in the long run?

In an instant, with less-than-perfect information and a lot of faith, you make your decision.

“No. You are not.” You say it slowly, calmly, firmly.

Your child stops in his tracks. He looks at you, incredulous. He can’t believe what he has heard.

“Why not?”

“It’s what you ordered. It’s paid for. I am not paying for another burger.”

“But it has onions. And pickles!”

Another decision point. This time you decide to accommodate – OK, compensate - a bit. You take the burger, scrape off the onions and pickle and give it back to him.

“Now it doesn’t.”

Doubtfully, he looks at you. He looks at the burger. He hesitates. He thinks. He takes a bite. He takes another. And another. Soon about half the burger is gone. Success, you think.

Then he hits the mustard.

“Ewww! Mustard! I’m gagging!” He actually gags.

Another decision point for you. Has he had enough?

You decide. You take the roll. You attempt to scrape off the mustard. You almost succeed. You hand him back the burger. “Here you go. Mustard gone.”

“No it’s not! It’s still there!”

Decision point. You weaken a bit. Another compensation. You pull the mustardy roll part off. You give him back the burger with the bit of roll remaining that is mustard-free.

“Now the mustard IS all gone.”

“I’m still not eating it. I can see where the onions were!”

Decision point.

“Well, that’s your decision. I guess we’ll go, then.”

“No! I want to go on the Play Scape!”

“But we had a deal, remember?”

“But my burger is not right!!!”

“Well, I’m sorry about that. Sometimes in life you have to accept things that are not quite right. You have to adapt.”

“OOOOO!!!!! YOU ARE MAKING ME SO MAD!!! HOW DARE YOU!!!! Etc. etc. angry tirade.

“OK, so let’s go then. I expect you to control yourself here in the restaurant. I know that you can.”

Out you walk with a child on the verge of a tantrum.

In the car he unleashes a choice stream of threats at you, including promising to give you a time out, having a squirrel bite you, have the police come take you to jail (but only for 20 minutes) and other creative punishments for your audacity and horrible parenting.

“Hmmm.” You say. “I think this must be what happens to you in school when you feel like you are forced to be too flexible. You feel like you need to punish everyone. Now I understand.”

He stops. “Yes.” He says. “This is what happens.”

“Well, let’s think about what you did just now. You ate most of your burger that was not the way you expected. You did it OK. And you didn’t have a tantrum. That was great!”

“But I didn’t like it! It was really hard!”

“Yes it was. But you did it. And next time it will be easier.”

You drive in silence for a while. In time, his anger diffuses. He starts talking about different things. It’s over.

Later that evening, you decide to approach the subject again. You want to drive your point home. Spotlight his success.

“So, are we friends?”

“Huh?” He has forgotton the tiff already!

“After you being so mad at me about the cheeseburger. Are we friends again?”

(Slight whiney tone) Yeah, I guess so….but I really didn’t like that!

“Do you know why I didn’t let you get a new burger?”

“Because you wanted to save money?”

“Well, yes, but there was a more important reason.”

“To help me be more flexible?”

“Right.”

Silence.

"And you were. You did it."

That, my fellow parents, is a little slice of life from our RDI® lifestyle.