Functional communication is key to self-advocacy

We, as parents want to do our best for our children, provide them all the resources to be successful and prepare them for a fulfilling adult life. But often, we get so caught up in finding ways to accomplish this, that we tend to miss the underlying barriers preventing us from being effective. While this applies broadly, it is critical for children with intellectual and developmental disabilities. They are often not effectively understood by their own parents — who are trying their best to care for them. Of course, this is because they face fundamental challenges communicating their needs, wants and feelings to the world around them. The difficulty in communication manifests in various ways, some of which may be disruptive to themselves and others. It may be useful to look a bit deeper, and understand functional communication.

When our now-15-year-old son Manu was in his pre-school years, we spent a lot of effort trying to teach him to play, eat and talk. We overlooked the fact that he did not have the words or means to request or communicate basic things such as wanting water, being in pain or letting us know when something was making him upset. We bombarded him with questions such as “How are you feeling?”, “Are you OK?” none of which made any sense to him, especially when he was at the peak of an emotional meltdown.

In ABA terms, functional communication training provides an acceptable replacement for problem behaviors which are caused by the child’s desire to access a preferred item or terminate a non-preferred activity. The focus of functional communication would be on the function of the communication, or the purpose of it, rather than the topography, or the form (verbal, ASL, AAC etc.). At their heightened level of emotional dysregulation, even individuals who are verbal in normal situations, may be unable to express their feelings and needs, making it extremely important to provide them alternate ways and tools to do this. 

For example, a child who is watching a favorite video may throw a tantrum when transitioning from it. Typically, we manage the transition with techniques such as redirection and device control. One obvious thing people may overlook is to acknowledge the reason the child is unhappy. Once we truly acknowledge it, we can encourage the child to say something like “I want more video” or point to a “more” sign, instead of throwing a tantrum. Then the child could get an extra 2 minutes of video, before the transition. You may end up spending a good amount of time cementing that cycle of (1) acknowledging the desire -> (2) functional communication -> (3) fulfilling desire. This may lay the foundation for negotiation, and eventually a smoother transition. The concept itself is simple, but taking the time to develop the functional communication helps the child realize that they have the power to self-advocate, and negotiate.

Being able to communicate needs and feelings is a crucial part of self-advocacy, which becomes more important as children grow up, so they can have the autonomy to make choices and lead independent lives. In ABA, this is taught systematically by providing reinforcement that the child expects in varying frequencies. During the early stages of training, appropriate communication should result in desired reinforcements almost immediately, the frequency of which can be gradually reduced once the child starts noticing the benefits of it.

Functional communication is essential at various stages of an individual’s development, starting with their toddler years, when they are dependent on their parents to meet basic needs such as eating, sleeping and toileting. As they start school and participate in more social/group settings, their ability to generalize functional communication becomes crucial. There, they are confronted with complex social situations, where inability to functionally communicate could lead to bullying, lack of focus in class, or loitering. Functional communication is vital as children grow into their teen years when they deal with peer pressure and challenges accompanying puberty, which in turn may increase anxiety in social situations. 

Our child’s ability to functionally communicate and advocate for themselves matures as they grow older. It is important to give them as many opportunities as possible to practice this in natural and contrived settings. This exposes them to various situations that they may likely encounter in the future.

Manu has a Physical Education (PE) class in high school. He started getting anxious when he was in the gym, and showing visible signs of stress. His teacher acknowledged his feelings, and Manu could successfully convey that he wanted to be outdoors in the running track. His teacher could accommodate this ask. We were so happy that Manu could self-advocate instead of just taking off, which by the way he still does from time to time. That’s for another blog!