Written by: Dana Johnson, PhD, MS, OTR/L with input from autistic advocates
April is Autism Awareness month and April 2nd is World Autism Day. As an occupational therapist working with those on the autism spectrum, I want to help inform others about some incorrect assumptions and hopefully change the thinking around those with autism.
Autism has traditionally been seen as a social and cognitive disorder. However, there is new research that is pointing to autism as a movement disorder. A movement disorder means that some of the behaviors that we typically see in the autistic population are a result of a disruption in the nervous system causing a “disconnect” between the brain and the body. The person understands what is asked, but despite their efforts cannot get their body to do the task. As a result, it appears like they don’t want to do something or don’t understand. By shifting our perceptions of autism from a social and cognitive deficit to redefining it as difficulty with the nervous system, the outlook for these individuals is much brighter.
Our brains are constantly taking in outside information from the world around us – visual, sound, textures, and movements. When the brain pathways that help us to understand the sensory information are shutdown or broken, we are not able to do the things we want to do every day. Every single movement we make would be affected by the brain’s difficulty processing incoming sensory information. We would also have a very difficult time learning new skills, not because we don’t understand the goal, but because of the broken or disconnected pathways between the brain and body that make it very hard to do.
Here are a few things that you may not know about individuals on the spectrum. Keep in mind that every autistic person is different, and not all may apply.
What is Apraxia?
Many individuals with autism also have apraxia. Apraxia is the inability to have control over our own movements on demand. It affects all movements and our ability to start and stop a movement. Apraxia is a disconnect between the brain and the body. It is not a cognitive or intellectual disability and it can look like many things, including:
- Not starting or completing a task
- Not being able to speak
- Running away and not stopping
- Getting stuck doing the same thing over and over
Often these behaviors are seen as the individual not wanting to do something or not listening; however, this is not the case. These individuals cannot control their bodies, which is incredibly frustrating for them.
What is Dysregulation?
Dyregulation happens when we are overloaded with sensory stimuli and/or are experiencing intense emotions, which could be positive (e.g. excited) and negative (e.g. angry).
What could dysregulation look like?
- Laughing out of context
- Hitting/kicking someone else or themselves
- Running away
- Saying “no”
What causes dysregulation?
Here are some examples from autistic individuals that cause dysregulation for them.
- Feeling the pressure to talk
- Not being able to get my body to do what I want it to do
- Being stuck in a place that’s too loud
What can we do to support regulation?
- Don’t always assume that they don’t want to do something. Assume that they want to do it, but they need help
- Bring your voice down; speak calmly
- Give the person a break and then regroup and try again
- Strategies such as breathing, taking a walk, and going to a quiet space can help
- Provide an environment that keeps the individual engaged in an activity. Boredom can cause dysregulation
Labels and Language
Language is extremely important when speaking about autism. It is important to be respectful and empathetic towards individuals with autism.
“Violent” – when emotions are running high, the reaction can be misinterpreted as violent. Instead, it is the overflow of emotions that may cause the loss of body control. This is something that autistic individuals cannot control, but we perceive them as unpredictable tantrums that are intentionally directed towards others or themselves. This is incorrect.
“Behavior” – We typically see the word ‘behavior’ along with autism and it is always used as a negative term. It’s important that we consider the brain-body disconnect and that the ‘behavior’ is not always in the control of the person.
“Intellectually Disabled” – Individuals with autism typically receive an intellectually delayed diagnosis as well. However, intelligence tests require the use of proficient motor skills and autistic individuals have motor skill challenges (apraxia) so they are unable to accurately demonstrate what they know and because of apraxia, they may demonstrate their abilities in different ways.
“High Functioning” or “Low Functioning” – These terms are typically associated with intellectual ability. These terms are also incredibly disrespectful to any human being. Intelligence tests require adequate motor skills and with apraxia, it is impossible to accurately determine an individuals intellectual ability.
“Aggressive” – This word is often associated with the autism population. It is assumed that these individuals have control over their bodies and “choose” to be aggressive. This is not the case. Dysregulation, anxiety and stress can cause them to be much more impulsive. This impulsivity is beyond their control and can cause them to be self-injurious or injurious towards others. By focusing on supporting their regulation and motor coordination, we can help the person have more control over their bodies.
Finally, PRESUME COMPETENCE. Presuming competence means that individuals have the ability to learn and understand, and want to learn. It means treating people respectfully and as an equal. Presuming competence is NOT an act of kindness or feeling sorry for the person. Those on the autism spectrum should not have to prove that they are intelligent. Let’s change our thinking and educate ourselves so that we can be supportive of those on the spectrum.
For more information contact:
Interplay Therapy Center