Guidance on helping nonverbal child severely disabled by autism

This answer is from speech-language pathologist Donna Murray, senior director of the Autism Speaks Autism Treatment Network (AS-ATN).

We’re always reading about autism programs for verbal kids who can function with some support. But how about my kid who is so severely affected and will probably never be verbal or independent? How can we improve his quality of life?

I understand your frustration. Complex children are just that, complex. So writing short answers about interventions for children – or adults – with great needs can feel inadequate. At best, I can provide you with some starting points.

First and foremost, a person who is nonverbal needs ways to communicate wants and needs. Any child with communication challenges should be working closely with a knowledgeable speech-language pathologist. Assisted communication approaches should be personalized to the individual’s needs. So I won’t make specific recommendations here. However, I will recommend a number of Autism Speaks resources and previous blog posts on assisted communication approaches. You’ll find the links at the end of this post.*

Instead, I’d like to focus on the less-discussed, but crucial need to create an environment that promotes communication and understanding. This is a framework that I’ve used to teach important life skills to nonverbal children severely affected by autism. But it can help all individuals affected by autism – at any age and wherever they are on the spectrum.

Teaching important life skills to nonverbal children severely impacted by autism

Creating a supportive environment

So often, we focus on helping nonverbal children express themselves that we give short shrift to helping them understand what’s expected of them. This is so important because lack of understanding creates frustration and anxiety. As you no doubt know first hand, frustration and anxiety tend to increase challenging behaviors.

In addition many persons with autism have difficultly shifting attention. In other words, your son may have trouble disengaging from a task or shifting attention between the task and a person trying to get his attention. Many individuals with autism also experience delays in processing verbal information from others. All this can make it difficult for him to process your directions and communications. 

For all these reasons, I recommend creating an environment that fosters understanding. In other words, we want to create an environment that helps a child – or adult – with autism to understand what to do and when to do it.

So how does one build such an environment?

The physical space

When considering your child’s environment, consider the “macro” down to the “micro” – or the big picture down to the detail.

Look at the space. Does the room layout help your son understand what to expect and what’s expected of him? Is it free of unnecessary distractions? In a large classroom, for example, special-education teachers often divide the room with short bookshelves to create smaller spaces for specific activities.

At home, you might place a particular piece of furniture or another item in an area to help indicate what’s supposed to happen there. For example, a play space might have a bean bag chair, CD player for music and some books and games. A study area might include a desk, pencils and teaching materials. An art area would have paints, paper and a smock. Within a kitchen, you might create a snack area with a table and placemat that has an outline of a dish and cup.

Once the space is organized to communicate expectations, consider the specific activities you’d like your son to enjoy within each area. You can provide visual representations for his choices. These can be icons, visual schedules or actual items, depending on your child’s needs.  For example, you could have pictures of two snack choices on the table so your child can indicate his preference.

Next, think about what is supposed to happen within that activity. Yes, I know this is a lot to think about and a lot of work. But the payoff will be worth the effort!

So for each activity, think about communicating your expectations. I suggest asking yourself – from your child’s perspective – the following questions for each activity. I think they’ll help you find many ways to improve understanding:

1. What am I supposed to do? To communicate this, you might have a model or picture of the completed activity. For example, a completed craft or a sequence of pictures illustrating steps.
2. How long will the activity take? What will signal when I’m finished?” Some activities – such as a puzzle or worksheet – have an obvious end point. Others – like Legos or a craft – are open ended. For those open-ended activities, a timer can help your child track time and signal the activity’s end. Or, you might put some thought into the number of Legos or other craft components you put out for your child. In this way, when all the pieces are used, the activity will come to a natural end.
3. What’s next? (a reward!) Everyone can use a little encouragement to tackle tasks they don’t particularly like. It can help to have a visual schedule illustrating that an enjoyable activity will follow, once the more-challenging task is done. Just as we look forward to our paychecks, it’s important to communicate the occasional “payoff’ in the schedule of activities you lay out for your child.

These are some of the approaches I’ve used as a therapist to increase function and promote long-term quality of life for nonverbal individuals severely affected by autism. I realize that my short blog post and some links to other written materials will only begin to address the complex challenges that you, your son and your family must tackle. But I hope that you and others will find these strategies and resources helpful.