The terms high functioning autism and low functioning autism get tossed around often. But let’s chat about language. Not “speech and language” or “developmental milestones of language” or one of the 100 other things that you, as a parent, have likely googled during this ASD journey with your child.
Let’s chat about our language. Us, as the grownups. Moms, dads, teachers, support workers, family friends, and coaches. The language that we use to speak to, and speak about an entire population of children matters. It matters a lot.
The way we speak about and to children shapes not only our perception of them but also their perception of themselves. This creation of self-concept is why it is imperative that we are using the most positive, accepting, and supportive language possible.
Through my experience working as a Behaviour Interventionist, and now working privately as a Behaviour Consultant, nothing upsets me more than hearing the negative, shameful, stigmatizing language we use as neurotypical adults to speak about or speak to these neurodiverse children.
I have met with parents during initial consults, Education Assistants and classroom teachers during IEP meetings, and Early Childhood Educators when establishing support plans for children in daycare classrooms and guess what. Across the board, despite education or experience, we all seem to fault in this major, crucial way.
The most polarizing language used? We describe a child as having “low functioning autism” or “high functioning autism”.
What does high functioning or low functioning autism even mean? We give them this blanket statement as if it is worthy of some kind of diagnostic criteria or assessment purposes, and then continue on in our conversation as if we didn’t just drop a polarizing, negative bomb of a word into the space (a space that is meant to be supportive, caring, and educating).
Children are not low functioning, children are not high functioning. They are children. These kiddos on the vast autism spectrum happen to struggle in different areas. (They also exceed expectations in different areas!) How cruel to highlight a person’s biggest struggle, or their easiest success, and determine who they are as a person because of it.
Functioning labels are harmful
Why? At best, they do not give us any real, valuable, actionable information about a child. At worst, they categorize a child as a whole based on one or two small aspects of their life or personality.
When we describe a child as “low functioning” we give this impression of incompetence. We are saying that they cannot do what other, neurotypical children, can do. What we speak to them (and what those that are listening hear) is “this child is low functioning. They can’t/don’t/wont.” We exaggerate their struggles and do not even speak to their successes. Would you like your boss at work, to call you into a meeting and say, “I notice you are low functioning.” Hmmm.. nope. I highly doubt it.
Describing a child as “high functioning” puts an asterisk at the end of their diagnosis. It says, “this child is on the autism spectrum – BUT…” We minimize their struggles, exaggerate their successes, and as a result, they are often overlooked when it comes to resources and support systems. They often suffer because they are not considered “autistic enough” to deserve accommodations.
If functioning labels are so harmful, why do they even exist? It’s fair to assume that people have the best of intentions. While personally, I do not see any validity to continue using functioning labels, I believe they stem from a desire to outline required supports. They are generally intended to outline which children need more support in areas, and which children are successful in that same area with a little bit less.
However, functioning labels do not inherently meet this desire. As previously mentioned, they are not actionable. They give no valid information about a person or how we can better serve them and meet their needs.
What is the proper way to describe support needs?
Outline the support needs directly. Do not categorize an entire person as being simply one of two ends of a spectrum.
“Low functioning” -> “High support needs in area XYZ”
“High functioning” -> “Low support needs in area XYZ”
Outlining support needs, rather than “functioning labels” gives us the information we need to make an actionable plan while avoiding stigmatizing language or shaming children. Support needs detail for the adults caring for these children exactly how they can best be supported. For example, saying a child is “low functioning” doesn’t offer any insight into potential goals for that person.
However, saying a child has “high support needs in self-care skills and communication” points out where advocacy is necessary, how to provide accommodations for, and equips support personnel with actionable information to best help that child.
In addition to dropping functioning labels for a support needs-based conversation, I suggest trying to sandwich any struggles with positive, celebratory comments.
“This is John. He is low functioning autistic.” -> “This is John, he is autistic. He is incredibly talented with art. John has high support needs in communication, so we are using Proloquo and some ASL signs. He both excels at, and finds joy in, fine motor physical skills such as drawing and painting.”
Our language holds value and substance. We can use it to fuel children, or we may speak away their potential. When we choose our language with intention and care, we are not only creating a kinder and more inclusive environment, but we are also helping to shape that child’s positive self-concept. The small change from functioning labels to support needs holds tremendous benefit. Speak joy, love, and support about our children – and just watch how they bloom!
Monica Maddison is an educator and private practitioner with Bloom Behaviour, where she empowers and guides parents to best serve their children through science based principles and fierce advocacy. Follow her on Instagram @mrs.monicamaddison where she shares more insights about topics such as this one.