It is Time to Stop Disabling, and Start Enabling, Autistics to Achieve Their Life Goals

Susan Golubock, M.Ed

I grew up autistic but did not receive a diagnosis until I was 50. My parents were aware that I was different, but everyone treated me as if I was like everyone else. They didn’t want me to “feel” different. Yet I knew that I was, so it wasn’t long before I figured out that being different was “bad.” So, why then, when I finally pursued a diagnosis of autism, did I feel so relieved and good about myself? It has taken me years to figure this out. I now want to share my conclusions with others to hopefully spare other autistics the agony that I felt growing up not being allowed to be the person I was born to be. It seems odd that society studies and values diversity in nature, but only reluctantly acknowledges, much less accepts, it in people.

According to the DSM-5, Autism is listed as a disability characterized by specific areas of deficiency in social communication/interaction and restricted, repetitive patterns of behavior. Severity is specified based on the level of support needed for social communication and restricted/repetitive behaviors. How that disability impacts on a person’s ability to function in society determines if the disability is disabling. For example, a diagnosis of myopia is given when a change in a person’s vision resulting in difficulties seeing objects clearly at a distance. It does not need to be disabling (i.e., limits ability to function) if the vision is improved by giving the person a pair of glasses (an assistive device) to correct their vision. The disability doesn’t go away. They still have myopia. The disabling effect of that disability however does change if they use their glasses when needed to see objects at a distance. Autism is a diagnosed condition, but society persists in considering and treating it as a mild to severely disabling condition. For example, when a typical individual repeatedly twirls their hair, taps their foot, or clicks a pen, society considers it a “nervous habit” often related to anxiety. Yet, when an autistic individual repeatedly flaps their hands, spins object, or makes non-communicative sounds, they are demonstrating restricted, repetitive patterns of behavior that are considered non-purposeful. The difference in these 2 examples reflects society’s perception of what is considered “normal” and what is considered “abnormal” ways of responding. A person who does not respond in a way that society determines is acceptable was, in the past, socially ostracized because of their differences. Today, these differences are recognized and given a diagnostic label that identifies them as having a disability. Unfortunately, ableism, which is a form of discrimination in favor of “nondisabled” people, continues to socially perceive these differences as disabling (i.e., unable to meet the functional expectations of someone who is “normal”).

Research has repeatedly identified autism as a difference in the way the brain processes and is able to respond to sensory input from the body as well as the environment. Society finds these differences extremely hard to understand because most people process this input so easily and automatically. Therefore, from a neurologically typical perspective, it seems logical to teach autistics how to function like everyone else by teaching them the same way that they think they learn new skills (via verbal instruction and practice). They forget how much children learn before they start school through social and solitary play as well as daily interactions within the family. Due to our sensory-motor differences in processing input during these formative years, autistics often lack the foundation to integrate and make sense of what they learn in later years. If we are good at memorizing and mimicking, we learn to perform like others in the hope of being accepted. Or we fight for the person we are and deal with the consequences of struggling with minimal support from others. By not recognizing and accepting our differences, society does not give us the chance to use our brains to learn and function in the way our brains work best.

The special interests that we are passionate about and would love to socially share with others are ignored or suppressed as “excessive” or “not normal”. Instead, the focus is on identifying and treating what is “wrong” with us so that we can “fit in” (i.e., be like everyone else). Society is disabling autistic people by their insistence that we conform. The results are easily revealed in these statistics:

Autism is considered a spectrum disability with severity determined by the amount of support we are determined to need to become and stay functional (by neurotypical standards). Yet research suggests that medical and mental co-occurring conditions, which can impact on their ability to function and stay functional, are highly prevalent in autistics at all ages (https://doi.org/10.1016/j.neubiorev.2023.105436; https://pmc.ncbi.nlm.nih.gov/articles/PMC6669096/).

Some autistics, for example, have severe difficulties with executing motor actions (a condition called apraxia) which impacts on their ability to speak orally and perform self-care skills. They are likely to be labeled as level 3 autism (needing very significant support). Rather than treating the apraxia, it is assumed that their inability to function to perform these basic skills is a part of or the result of their autism. Since they cannot speak, their only way of communicating is via their actions which are interpreted as misbehaviors that need to be corrected. The fact that they have thoughts and feelings and may be highly intelligent and trying the only way their body allows them to communicate are often not taken into consideration. The focus is on getting them some form of speech. When they can express their thoughts and feelings in an appropriate way (based on what is considered socially acceptable), then others will listen to them. Just because an autistic learns language via gestalts (that others don’t understand and therefore dismiss as meaningful communication) doesn’t mean they don’t have important thoughts and feelings they are trying to express socially to others. Society needs to stop regarding autism as a mere “spectrum” of severity and start recognizing and dealing with the underlying co-occurring medical and mental conditions that contribute to this spectrum of severity and the subconscious ableism that prevents society from recognizing it.

The bottom line is that, like everyone else, every autistic has their individual strengths and limitations. Society needs to recognize and support autistics in embracing their differences, not hiding them to “fit in.” It is up to us, as autistics, to support each other in understanding our differences, advocating for our right to be taught and perform in the ways we do best, and be given support to achieve goals that we want and are motivated to achieve.

We need to be allowed to show the world what we CAN do well without pressure to conform to social norms to achieve it.

Most of all, we need to recognize and get society to recognize and help us deal with the co-occurring conditions many of us have that can impact on our ability to function and stay functional. We need to push back against subconscious biases in others and avoid internalizing those biases that discourage us from being the very best autistic person we are capable of being.