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Changing the Descriptors of Autism: The Highs and Lows of Functioning Autism

The terms high and low functioning are often used to describe people on the autism spectrum. It is quick. There are people that advocate for this not to be used as they see nobody wanting to be called low functioning. Autistic people, who can advocate for themselves, hate the term too, because who wants to be described as high functioning when just the word autistic would do.

There is also the problem that functioning is used to describe intelligence. The problem is level of intelligence is only one aspect that can be affected by autism.

People often delineate high and low functioning by whether an autistic person can speak as an indicator of intelligence. This can be a big mistake in so many ways. First, there are very intelligent autistic people and people in general that have speech problems or cannot speak. Even among all people that can speak, this does not mean they have anything to say or that it is intelligent. There are autistic people that can speak, that repeat questions over and over again, or parrot you (echolalia), or can say words but they are not connected to meaning. The ability to speak does not denote intelligence.

The problem with just using the word autism or autistic and dropping any designation where autistic people are on the spectrum is that people that are moderate to severely impacted get lost or not even acknowledged that they exist. Sometimes it is hard for autistic people that can advocate for themselves and their parents to acknowledge or be associated with autistic people who cannot or have a hard time functioning in the world. There have been parents pushed out of autism groups organizations because their children are not "smart enough". Parents of children with disabilities that have a hard time navigating the world also have many more agencies and hoops to learn and jump through trying to get the support they and their children need. They often suffer in isolation. So it is important to individualize the distinctions across the autism spectrum.

With DMC 5, conditions that used to be separate, Asperger, pervasive development disorder not other wise specified, were all relabeled autism. This greatly increased the autism spectrum along with the increase of people being diagnosed. In recent decades there has been an increase in people being diagnosed across the spectrum. Why the increase is happening is not thoroughly understood, but it is safe to say that people moderately to severely impacted by autism would not have fallen through the cracks of being diagnosed in earlier decades and there are people now later in life being diagnosed with autism who while making it through the world have always had difficulties like picking up on social cues. Finding out that you are on the autism spectrum which includes severely impacted people, I imagine, can be disconcerting. So it is understandable to either want to distance yourself or try to use the word "autism" for only those who can make it through the world. I have met a number of autistic people who are very good at self-advocating that see the other end of the autism spectrum as having other conditional qualifiers such as intellectual disabilities. Other conditional qualifiers, such as OCD, depression, exist across the spectrum. There is also a spectrum of types of intelligence and being able to pick up on social cues is one of them. Autism may be the cause of other conditional qualifiers. Regardless of other conditional qualifiers, the DMC 5 set forth a criteria of conditions that is shared by people across the diagnoses of autism. So how to distinguish autism other than high to low functioning?

People have suggested describing the impact that autism has on person as a possibility, such as low, moderate to severely impacted. This is better than low, moderate or high functioning. But a better way I believe is found in the DMC 5 definition of Autism that distinguishes levels of support needed for a person to function in the world. The levels of support are numbered 1-3. Saying a person with autism is a level 1 autistic person is awkward in speech and people unfamiliar with the scales descriptions would have a hard time understanding what a level means. It would be better to use low, moderate and high support.

The great thing about using the amount of support needed to function in the world as descriptor, other than tying into the clinical diagnoses of Autism is that it clues in what support is needed for that person with autism to negate their disabilities in the world. This is what is most of interest to parents and support providers for autistic people. It also puts the emphasis on disability support which is currently lacking and emphasizes integration of autistic people to function and be more incorporated into the world community.

Somewhat decoupling the descriptor from intelligence is more accurate. Autistic people with high types of book smarts or narrow intelligence may need significant support for them to be safe, happy and function in the world. An autistic person who can navigate the bus system and is otherwise street smart may need fewer supports regardless of intelligence level.

The word "support" for disabled person conjures up an aide to help with tasks, but support can include mechanical aides or environmental conditions like noise levels. Instead of using function as a marker of intelligence, we can change the conversation to the support needed to help all disabled people function at a higher level in the world.