What is autism?
Today I wanted to touch upon the topic of what autism is and what it is not. This will be a more informative post that is not meant to be an exhaustive or all-encompassing definition since each autistic experience is unique, varied, and valid. I hope to lend some insight into the world of autism while sparking introspection and constructive dialogue.
In the research, autism is defined through a behavioral lens since there are no reliable blood or genetic tests for autism. Professionals look at autism through characteristics of sensory experiences and processing, needs and accessibility issues, types or styles of communication, and social interaction and engagement styles. Some neuroimaging studies suggest that there could be differences in brain connectivity, activity, and varying neurotransmitters in autistic brains. However, currently there is NO agreement on how autism is identified by the brain’s physiological structures and/or its functions. In this vein, we can see how autism can be identified or even missed due to the stereotypes of autistic behavior and the idea that the autistic community is homogeneous leads to misdiagnosis or actual missed diagnoses especially in assigned female at birth (AFAB) and female populations. Science is beginning to realize there are multifaceted ways of how autism presents in varied populations instead of only one stereotypical way which has been the misconception for far too long in the media as well as amongst medical ‘experts.’
Autism is a spectrum that is dynamic in nature. It is impossible to look at someone and know if they are autistic because it is a neurotype and our brains live within our skulls. In short, autism is a natural part of human diversity; however, this difference in neurotype can be demonstrated in various ways. Autism can mean different things to different people. For instance, some see it as part of their identity, as a disability (especially when things are inaccessible for them), or even a combination of the two. One example is the differences in motor planning skills along with sensory input and processing which can affect quality of life as well as communication skills for autistic individuals. Autists in general experience co-occurring conditions (ex: apraxia, dyslexia, dysgraphia, dyscalculia, functional cognitive issues, intellectual and learning disabilities, etc.) at higher rates than that of the general population. Executive functioning skills can also be affected and can possibly hinder a neurodivergent individual from completing ‘normal behaviors and activities’ (re: societal constructs) even when an individual is motivated. Differences for autistic individuals can present as a disability when it limits accessibility to their community, education, vocation, and other activities of importance. Let’s think about apraxia of speech and how robust augmentative and alternative communication (AAC) access can help with lessening the gap between communication differences/styles. Without these accessibility tools, an individual could feel autism is more of a disability to them instead of part of identity.
Autists, like anyone else, can experience challenges in some areas while excelling in others, particularly those areas where our special interests bolster our strengths and can help us stand out from the crowd in terms of knowledge and precision within specific topics or interests. While autism can be a facet of a person’s identity, we must also be open and understanding to the fact that for others it is not. Each person values autism in different ways… this is the main point I want to touch upon here. Whether or not they choose to view their own autism as a difference, disability, identity, or a combination of any of these is their own personal decision which no other person should criticize, invalidate, or erase.
Autism intersects and coexists with other forms of personal identity. It presents and is perceived in various ways based upon human and societal constructs which we live within… examples of such constructs could be based on sexuality, gender, race, religion, and cultural backgrounds. Assigned female at birth (AFAB) and women tend to present with a different phenotype of traits in comparison to their autistic male peers leading to under and/or missed diagnoses among these populations. Missed diagnoses could be attributed to several things such as masking or ‘camouflaging’ one’s autistic traits due to social and/or societal pressure to fit into what is accepted as ‘typical,’ ‘normal,’ or ‘expected’. Chronic masking has been linked to a host of mental health issues alongside increased rates of chronic fatigue, meltdowns, shutdowns, and even total autistic burnout.
Now let’s juxtapose what autism is with what it is not. Autism is not a disease, mental illness, or a lack of empathy and/or emotions. To put it plainly…. autism is not a disease, and we are not broken people. While it is true that autists have a higher likelihood of having co-occurring conditions like seizures, gastrointestinal issues, and possible connective tissue disorders, it is vital to note that it is not autism that causes these medical conditions, and these medical conditions are not autism either. Medical professionals can treat the co-occurring medical conditions just as they would in any person. These conditions are not equal to autism; however, they can overlap and co-occur. This is where competent professionals come in. Medical and health professionals who understand treating the medical conditions without expectations of changing an autistic person themselves are key to advancing both research and care for the community and those who support, advocate, and love us. I would like to challenge all of us to think about the shorter life expectancy rates of autists. This is not due to autism itself; instead, it’s related to the higher rate of physical and medical conditions due to disparities of medical care access which in turn lead to the higher rates of deterioration of physical, mental, and emotional health, accidents, and suicide.
Autism is not a mental illness. Up to 80% of autistic individuals may develop concomitant mental health conditions as they age. Common mental health conditions can include but are not limited to OCD, anxiety, depression, cPTSD, and PTSD. Mental illness can result from several factors as well such as masking, lack of accommodations/supports/services, lack of accessibility to services and healthcare, bullying, misunderstandings and misinterpretations regarding autistic behaviors and communication styles between the autist and their environments. To reiterate, autism itself is not a mental illness. The barriers autistic individuals face in healthcare, accessibility, and diagnosis can lead to the development of mental health illnesses over time.
Lastly, autism is not a lack of empathy and/or emotions. Many autistic individuals explain their feelings and emotions as being felt so deeply that they can become overwhelmed easily by both their own and other people’s feelings/emotions which is a phenomenon known as hyper-empathy. While allistic society may not recognize what we autists are feeling, it is not because we do not feel, yet instead how we express ourselves and feelings in ways that diverge from societal norms. Another factor to consider is alexithymia which is difficulty putting one’s feelings and emotions into descriptive words. The way autistic individuals express negative emotions especially when under prolonged stress or confusion can present through meltdowns, shutdowns, and even burnout. Positive emotional expression can vary widely as well and could be expressed by ‘showing’ love (gifting something to someone that reminds the autistic person of them) versus saying ‘I love you’ overtly. Another way we express emotions can be through self-stimulatory behavior (stimming) which is often misinterpreted as upset, distressed, non-compliant, bad behavior, resisting, etc.
When thinking about what we know about autism, and what the common misconceptions are, we can try to look at this difference in human variation through a new lens or perspective and ask ourselves what is this person trying to communicate to me? Do they feel safe enough to unmask and be themselves around me? Is stimming their way of showing engagement, connection, joy, excitement, etc. instead of non-compliance, bad behavior, or being difficult?
I will close this out with a question for each of us to self-reflect on, and we can discuss together afterwards…. How can we help others to understand what autism is and how can we each best support the autistic people in our lives? Then let’s reflect upon how we all can best support, listen, learn from, and better understand each other.