My Thoughts on the Term “High-Functioning Autism”

Someone recently asked me about my thoughts regarding the term “high- functioning autism.” I do understand why some people use the term because the autism spectrum is so broad and until 2013 when the definition of autism was expanded in the DSM, the only reference the world had to autism was that of severe and profound cases of the diagnosis which often involve minimal to no spoken language, moderate to high stereotypic behavior, difficulty interacting with peers, and difficulty understanding  safety and judgement, etc. I am not necessarily fond of the term, because while it may highlight the individual’s abilities, it can often mask the difficulties and challenges individuals with autism can face. I think regardless of what level of autism a family may be dealing with, you should be very straightforward with young people with disabilities. They may grow to be quite independent and even excel in some areas with the right supports, but autism is still a lifelong neurodevelopmental disability which will warrant treatment in various areas well into the adult years, such as independent living and life skills, executive functioning, social skills, emotional regulation, and others.

I also think the term can be misleading because many times, the public tends to assume that if an individual is described as having a “high-functioning” disability, he or she is thereby independent enough to manage by themselves day to day without support or assistance.

Part of the use of the term “high functioning autism” may also come from people who want to make a distinction as if to say, “My child or loved one is not diagnosed with ‘full’ autism. He or she has a little, but not the whole thing…” This is a big problem to me because only when a parent allows themselves to accept reality, can they expect a child to do it. If in the long run parents want their children to be comfortable with who they are, the first step is to acknowledge and accept the reality of their child’s situation.

As I stated, I do understand why people use such a term even though it is not considered clinically accurate. For those who may have not received a diagnosis of autism or been eligible for one until 2013 or later, this is a way of describing one’s diagnosis to the public in a way. That can be easy to understand and honestly, an individual with verbal autism and social and emotional deficits can present very differently from an individual with severe or profound autism. Even though I don’t particularly like it, I have found myself using the term several times just to help people who may not be as familiar with the autism spectrum get a better understanding of my situation. I don’t really know what other term to use when there are very few physical indicators to the diagnosis other than the potential presence of stereotypic behaviors. I think that part of what makes autism so difficult for the public to understand is that it is neurologically based, very little of it is visible, children diagnosed with it appear as any other child would, for the most part, and yet every single case is potentially variable by leaps and bounds.