Are you looking for ways to support someone with autism better? Below are some important things I have learned from my son and his friends about how people can help to support them and be an ally. I wish I had known all of this at the beginning of my journey!
Presuming competence means assuming that a person has the desire to learn and the capability to do so with the proper supports in place. Presuming competence is particularly important with nonspeaking and unreliably speaking individuals on the spectrum. Their communication challenges often make it difficult to accurately and consistently show what they know. By presuming competence, we remove the requirement for someone to PROVE they are intelligent and capable of learning before treating them as such. Instead, we start by assuming they can learn and understand as effectively as anyone else and provide them with the appropriate resources to do just that. To learn more about how you can put presuming competence into action, check out this blog from Spelling to Communicate Practitioner Kelly Berg at I-ASC.
Don’t assume that what you see on the outside reflects what is happening on the inside. Many people with autism also experience challenges with planning and executing purposeful motor tasks to varying degrees, which refers to the “brain-body disconnect.” While a person may have the physical ability and the intention to complete an action, something gets lost in translation between their body and their brain. So they cannot follow through, often resulting in purposeful movements replaced by impulsive ones. These impulsive actions are often mistaken for lack of understanding and/or cooperation on the autistic person’s part. As a result, some label these actions as cognitive, social, or behavioral deficits rather than what they are – a motor planning problem.
For example, my son has significant difficulty just getting himself to stay in one spot for any length of time. As a result, he will often walk away when someone approaches him and attempts to interact with him. When viewed through a neurotypical lens, people interpret these actions as a social skills deficit and a lack of interest in others, but nothing could be further from the truth. My son longs to connect with others just like anyone else, and he is one of the most loving, empathetic people I have ever met. Unfortunately, his body just doesn’t always allow him to show what is on the inside in the ways that most people expect to see. To be true allies to autistic people, we need to stop expecting them to conform to our neurotypical social norms to validate their capabilities.
Check out this article from Dana Johnson, Ph.D., MS, OTR/L, for a more detailed explanation of the brain-body disconnect.
If you’re not familiar with stimming, the term refers to the repetitive actions or body movements that autistic individuals often engage in, such as flicking or tapping their fingers, rocking, listening to the same song repeatedly, or watching the same video on loop, etc. Historically these stims have been viewed as negative behaviors that individuals need to eliminate because they interfere with learning and development and are seen by some as not “socially acceptable.” In reality, stimming can be a very effective coping skill and serves various functions for autistic individuals. However, suppressing someone’s stims can lead to stress, anxiety, dysregulation, and a feeling of being seen as an outcast.
Conversely, respecting and allowing space for someone’s need to stim is a crucial way to accept and embrace their individuality (The only exception would be in the case of a stim that is harmful to the individual or others. In that instance, it is helpful to explore what needs the harmful stim is filling. Then you can brainstorm ways to meet the individual’s needs safely). For more on the importance of stimming from the perspective of someone who is autistic, check out this blog post.
Support amplifying autistic voices
If you want to support an autism-focused organization, be sure that the organization represents autistic voices in its mission and operation. All too often, agencies that profess to be working toward improving the lives of autistic individuals prioritize the input of professionals, parents, caregivers, etc., over that of autistics themselves. Likewise, avoid supporting organizations that leave autistic voices out of the conversation. Instead, consider helping those run by and in direct partnership with people on the spectrum. Some excellent examples include Autistic Self Advocacy Network (ASAN), I-ASC, and NeuroClastic.
Avoid using “functioning” labels
Labeling people as “high-functioning” or “low-functioning” or describing their autism as “mild” or “profound” is not only unhelpful but is harmful in many ways. These labels often underemphasize the capabilities of those labeled “low-functioning” while minimizing the challenges of those labeled “high-functioning,” which are detrimental. Autism is a spectrum, not binary. Functioning labels encourage people to make assumptions about autistic people rather than treat them as unique individuals with their strengths and challenges.
To think of it another way, imagine that we classified all people according to their athletic ability, but only using their skills in the sport of ice skating. Using this analogy, the current gold medal holder in men’s figure skating, Nathan Chen, would undoubtedly be classified as a high-functioning athlete. But what about swimmer Michael Phelps, the most decorated American Olympian of all time? While he’s a champion in the pool, let’s say for the sake of argument that Phelps can’t even stand up on a pair of ice skates. Based on the criteria above, that would make him a low-functioning athlete, a label that would overlook his athletic gifts.
On the other hand, let’s also assume that Nathan Chen can’t swim, but someone decides to throw him into a pool believing that he won’t need any support because “hey, he’s ‘high-functioning.’” Do you see the flaws here? Using these parameters, we would drastically underestimate Michael Phelps’s abilities as an athlete while overestimating Nathan Chen’s, both of which are ultimately a disservice to each of them as individuals.
For a more detailed explanation of the spectrum of autism, check out this article from autistic author C.L. Lynch. It is the best explanation of the autism spectrum that I have ever seen.
Author’s note on identity-first language
I use the term “autistic” instead of “person with autism” because my son has expressed that this is his preference. To any readers who find the use of identity-first language offensive, please know that it is being used here with the utmost love and respect for my son and with the desire to honor the way in which he chooses to identify himself.
About the Author
Jennifer is a mom to an amazing 15-year-old boy who has autism, apraxia, sensory processing disorder, and seizure disorder. Over the years, she has shared both traditional and non-traditional interventions for my son, and I want to share what I have learned from those experiences to help other parents.