Defining ‘high functioning’ Down Syndrome

High/low functioning are terms often used to define the capabilities of these “special” children. Three years ago Kathleen Fergus chose “High Functioning” as the term of the week and asked “What does it really mean?

“This weeks term of the week is actually a bit of a cheat,” said Fergus “as I was unable to find a concise definition of what “high-functioning” actually means in Down syndrome.

“I have heard the term high-functioning used to describe individuals with many different disorders – autism, dyslexia and Down Syndrome to name a few. In the interest of getting a clearer picture of what exactly this term means in individuals with Down Syndrome, I attempted to locate a clear-cut definition of what this term means. While this phrase is commonly used to describe some individuals with Down Syndrome, I was surprised that there is no formal medical, psychological or other criteria defining exactly what makes a person high-functioning. I was also surprised (although I shouldn't have been) to find that some parents object to this term.

“In it’s common usage, high-functioning refers to someone that is performing above what would be expected of them. Thus the term is actually a comparative term and rather subjective (or based on someone's opinion). It can also be a somewhat simplistic term in that it tends to have an “all or none” connotation – that is a person is either high-functioning or not. In reality, most people (with and without Down Syndrome) have a mix of skills and abilities and may be high-functioning in certain areas and not in others. “Some parents of children with Down Syndrome (and parents of children with autism) object to the term because they feel that it is far too subjective and often is actually a reflection of society's poor expectations of people with Down Syndrome rather than a reflection of the individual's true abilities. Other parents object to the term because it places more value on individuals thought to be high-functioning as compared to individuals that are not thought to be high-functioning.”

“How do you feel about the term “high-functioning?” asked Fergus, “Is the term meaningful to you? Would it be more meaningful if there were actually criteria and definitions assigned to the term or am I over thinking this? Let me know what you think.”

One parent gave these thoughts: “I realise that I really dislike these terms – high/low functioning – when thinking of any special child. Probably because if this criteria were used to evaluate the Down Syndrome child with a touch of autism, that child would be considered low functioning due to the autism. There are children with Down syndrome without the complication of autism who can speak, identify letters, words and numbers at an early age. Will the Down Syndrome/autistic child ever be able to do any of these things? All the parent can do is work with him/her and give all the support needed to live up to his/her own full potential. What that will be remains to be seen but that is all you can ask of your child.”