From Grief To Relief: Change The Autism Lexicon

Final signature count: 0

0 signatures toward our 30,000 goal

Susan Walton, author of Coloring Outside Autism’s Lines1, was told she should mourn her son’s autism diagnosis to “grieve for the loss of the child I dreamed of having.”

While a diagnosis can surely be disheartening, it’s no reason to imply a parent has “lost” a child. Children with autism are beautiful beings, possessing extraordinary talents, aspirations, qualities — unique characteristics to be celebrated. As Susan Walton says, “Coming to terms with a child’s disability is not a party. No one enrolls for it…But along with the challenges our children bring joy and wonder to our everyday lives.”

The scientific and medical community’s understanding of what autism is has changed dramatically throughout the last century. Differences in people’s social and ideological beliefs about autism also impact on the language they use to describe the condition.

Words like “disorder,” “disability,” “high-functioning,” or even “cure” can actually be detrimental, serving only to separate those who already face challenges in living with these cognitive or behavioral differences2.

It is important to avoid making assumptions of a person’s potential for independence, accomplishment or happiness based on their apparent level of intellectual ability or “functioning level.” Such apparent “functioning levels” are inherently subjective to the observer and have more to do with how well we “pass” than with actual ability. They are also highly contextual and vary depending on the person’s current cognitive, sensory or emotional processing load3.

The fact is, there are many different conditions that make up the “Autism Spectrum,” including Autistic Disorder, Asperger’s Syndrome, Childhood Disintegrative Disorder, Rett’s Disorder, and Pervasive Developmental Disorder. And there are countless more ways that these conditions can affect human behavior4.

We must be conscious of the language we use to describe the emotions surrounding an autism diagnosis. Yes, it might be frightening; but children with autism aren’t a loss at all. They’re distinctive human beings that should be nurtured and appreciated.

Sign the pledge below to be mindful of the words you use when talking about autism.