What is Autism? An Introduction to the Autistic Perspective

Autism is a neurodevelopmental variation and part of human diversity.

It is a natural biopsychosocial variant that results in unique modes of sensory processing; speech and language development; and motor control. As a result, autistic people also have differences in social intuition and behavioral adaptation. Currently, our best estimate is that 1-2% of the general population is on the autism spectrum^1,2. An autism diagnosis is four times more common in males than females¹. New evidence suggests that this may be due, in part, to biased diagnostic tools, and there are likely near-equal numbers of autistic males and females³. Due to changes in how autism is defined–as well as increased provider awareness–there has been an increase in autism diagnosis. It has become common to see adults being diagnosed later in life⁴ as autism research is broadened, and correct information is spread. This supports the notion that autism is far more common than once believed.

Autism results from a combination of genetic and environmental factors.

It runs in families and is associated with some known genetic mutations and syndromes (e.g., Rhett syndrome, Down syndrome, fragile X syndrome⁵). Autism is also common in people with cerebral palsy–a developmental disability acquired before, at, or soon after birth⁶. Infants born prematurely⁷, or to older parents⁸, are also more likely to be autistic. We still do not understand the exact mechanisms that cause autism. In the future, we may discover other genetic and environmental factors related to autism, but it is unlikely that a single cause will be identified.

Autism is a developmental phenomenon.

Even though autism can’t be formally diagnosed until toddlerhood, a person is autistic because of how their brain develops beginning in-utero or early infancy. The average age at diagnosis is 3-5 years old^1,9, but many people are diagnosed as older children, adolescents, or adults^4,10. This does not mean they “became” autistic. Even if an individual is diagnosed later in life, they have always been autistic. Individuals on the spectrum continue to develop over the course of their lives just like neurotypical people. Development doesn’t stop at age 18. Additionally, experiences of autism aren’t static. As they grow and develop, autistic people’s abilities, needs, and the challenges they experience change. These can even change dramatically day to day.

Furthermore, presentation of autistic traits may be heavily impacted by co-occurring conditions such as ADHD, or different “profiles” of autism such as Pathological Demand Avoidance, a sub-type of ASD first defined in the 1980s by Elizabeth Newson. The defining characteristics of PDA are a need for control which is anxiety related (defined by Tomlin Wilding as a Persistent Demand for Autonomy), and demand avoidance that affects even desired activities, and use of social approaches to avoid demands, often leading to camouflaging of other autistic traits¹¹. People on the PDA spectrum meet the diagnostic criteria for autism but have a significant enough variance in traits to qualify for this proposed subtype. Although its distinction is still debated in the psychiatric institution, PDA has become a frequently-adopted identification within the autism community online and in some clinical circles, often by advocates.

Autism is defined behaviorally.

There are no reliable blood or genetic tests to determine whether someone is on the spectrum. Neuroimaging studies have suggested differences in brain connectivity¹² (more or less connectivity), activity^13,14, and neurotransmitters¹⁵. However, there is currently no consensus on how autism is identified in the brain’s structure or function^16–18. Instead, autism is characterized by specific sensory experiences; styles of social interaction; and communication forms and needs¹⁹.

Autism can be a difference, disability, and/or an identity.

Autism is a natural form of human diversity, but that difference can also be a disability–particularly when the environment is inaccessible. For example, differences in motor planning or auditory processing can make verbal communication a challenge. Autistic people may experience conditions such as apraxia, dyscalculia, dysgraphia, dyslexia, or other learning and functional cognitive disabilities at high rates. A common condition–developmental dyspraxia–affects executive function and the ability to perform normative behavior even if motivation is present. This difference may be a disability because it can limit one’s ability to access their community. Similarly, speech apraxia may make it difficult for someone to articulate their thoughts verbally; however, technology such as augmentative and alternative communication (AAC) can make communication differences less disabling.

People on the spectrum may experience challenges or disability in one area while excelling in another. How they experience autism can also change over time. For some people, being autistic is an important part of their identity, while for others it is not. Individuals can value their autistic identity while simultaneously seeing themselves as disabled (or having a disability). Whether an autistic person views autism as a difference, disability, and/or an identity is up to them.

Autism coexists and interacts with other forms of identity.

Autism presents and is perceived differently based on gender, sexuality, race, cultural context, and religion. Female-presenting autistics often display different traits compared to their male-presenting counterparts¹⁹ and are diagnosed at lower rates because the current clinical criteria is biased toward male characteristics²⁰. Gendered “camouflaging” of autistic traits also contributes to missed diagnoses due to social pressures on marginalized genders to “fit in” or act in socially expected ways. This can also lead to increased rates of burnout, fatigue, and co-occurring mental health issues such as PTSD in non-male autistics. Complex-PTSD, a form of PTSD associated with ongoing trauma and repeated victimization may be particularly relevant in the autistic community, though research on C-PTSD is lacking²².

Autism may affect gender expression, identification and sexuality as well, although research in this area is relatively new. Transgender and gender-diverse individuals self-report higher rates of autistic traits and sensory differences. Within online LGBTQ+ communities, concepts such as “autiace” and “autigender” or other new terms have been coined to describe the experience of asexuality and gender from within an autistic perspective.

Even in otherwise cisgender and heterosexual autistic people, gender non-conformity may be present as a result of prioritizing comfort, special interests, or sensory needs over gendered social norms. For example, an autistic boy may develop a special interest fixation on Hello Kitty because he finds the character design soothing, without regard for the social pressures to be interested in other things parents, peers and media have deemed more appropriate for his assigned gender.

In the United States, people from racially and ethnically marginalized communities were historically diagnosed at lower rates than white people, a gap which has recently closed¹. However in some communities, Hispanic/Latino individuals are diagnosed less frequently than white or Black individuals. In addition, a higher proportion of Black autistic people have co-occurring intellectual disability, suggesting autism may be overlooked in Black individuals when intellectual disability is not present. Autistic traits such as stimming, special interests, and social communication vary highly based on cultural location and identity, leading to these higher rates of misdiagnosis by largely white American clinicians.

Racialized autistic people often also experience heightened rates of violence, targeting, or social discrimination due to the intersection of autistic traits ‘magnifying’ cultural differences or these being interpreted through racial stereotyping. Within their own ethnic community and the autistic community, they may experience increased microaggressions based around inability to conform to expectations. There is also a lack of research on racialized autistic people’s experiences and experience within the autistic community that contributes to ongoing lack of access to diagnosis and medical and behavioral care.

Cultural and religious factors influence how society sees autism and autistic traits. A few examples include stigmas in East Asia, the Islamic belief that an autistic child is a blessing because God trusts the parents to be especially caring, and eye contact being rude in some Latin and Native American cultures. Additionally, people on the spectrum may view culture, sexuality, gender identity, and religion/spirituality from a different angle, impacting perceptions of the world and themselves.

Autism is not a disease.

When non-autistic people advocate for a “cure,” “prevention,” or “treatment” of autism, they often defend their position by pointing out that autistic people are more likely than neurotypicals to have certain medical conditions. It is true that people on the spectrum are at an increased likelihood to have: epilepsy/seizures, gastrointestinal problems, and perhaps even connective tissue disorders^23,24. However, those medical conditions– which may co-occur with autism– are not, themselves, autism. It is entirely possible to treat medical conditions appropriately without trying to change an autistic person into a neurotypical one. In that vein, the shorter life expectancy of autistics²⁵ is not due to autism itself, but rather physical medical conditions as well as disparities in access to medical care and higher rates of accidents and suicide^25–28—the latter caused by inaccessible or hostile environments.

Autism is not a mental illness.

A significant amount (up to 80%) of autistic people develop mental health conditions as they get older^29,30. Those particularly common include: anxiety, depression, OCD, PTSD and cPTSD^22,31. Mental illness may be the result of: bullying, forced masking/camouflaging, lack of support or services, and the mismatch between the autistic person and their environment. Nonetheless, this doesn’t mean that autism itself causes, or is, a mental illness.

Autism is not a lack of empathy or emotions.

In contrast, many autistic people describe feeling their own emotions deeply and being easily overwhelmed by other people’s feelings (hyper-empathy). Neurotypical people might not always recognize what autistic people are feeling because they express those feelings in unexpected ways. Sometimes, people on the spectrum have a hard time putting words to feelings, known as alexithymia. There are also autistic people who say they find it difficult to empathize with other people. However, neurotypical people also vary in their ability to empathize with others yet no one claims they are incapable of empathy. Additionally, the way autistic people express their emotions may differ from neurotypicals. Negative emotions can lead to noticeable meltdowns or invisible shutdowns, and feelings such as love may be shown rather than overtly told. 

Sensory

Our sensory world is often chaotic and intense. Compared to non-autistic people, we may be more or less sensitive to lights, sounds, smells, textures, and information from our bodies (position in space, pain). Sensory sensitivities and needs vary across individuals, and can also change over time within individuals. Variability in awareness of our body movements and the space around us means many autistic people struggle with gross or fine motor skills and spatial awareness.

For example, this may impact tasks such as driving so that we need to be more consciously aware of the vehicle and road. Because of the unpredictability of our sensory world, we may develop routines or stimming (self-stimulatory behaviors) to help us cope and regulate our sensory experience.

Social

Because our sensory world often feels chaotic or intense, so too do many social situations—for many of us, large crowds and places that encourage lots of interaction can be a source of stress instead of enjoyment. While certain situations may be uncomfortable, we don’t consider ourselves inept at the same rules neurotypicals abide by. Rather, we are presented with a wholly different set of choices that impact our perception, reasoning, and decision-making. This can be analogous to driving on a different road from someone else, thus facing a different set of turns, traffic stops, and destinations. 

This social aspect can be divided into two broad subcategories: direct interactions and implicit norms. Because autism is a spectrum, there is no definitive way to observe every social behavior and deem it “autistic” or “non-autistic.” Our individual behavior might present differently, but oftentimes, there is an underlying method of cognition that we share in common which sets us apart from neurotypicals. 

Communication

Our different set of choices also leads to a difference in the way we communicate. On a semantic level, we interpret verbal and nonverbal communication in a way that fits with our individual worldview as opposed to what aligns with neurotypical expectations. This means that some of us may not immediately understand figurative language i.e “reading between the lines.” This may be perceived as an intellectual deficit or ignorance, when it is actually our minds being weighted towards efficiency (literalism) in delivery. Some of us may not use speech, words, pictures, and/or gestures to communicate—and some may not communicate except through behavioral indications of need, enjoyment or discomfort. Autistic self-representation relies on the ability to externalize our thoughts. Those of us who can do so are responsible for paying attention to the experiences of those who cannot communicate in normative ways. 

Interests

Our detailed-orient nature allows us to explore niche interests to a deeper level. Sometimes, this manifests in fixating on parts (such as parts of an object or parts of an idea) or collecting mass amounts of information that seem random to the outside eye, but hold value to us. The passions we develop drive our dedication and provide unique advantages. An example of special interests acting as an advantage is in specialized career fields. We may gravitate toward and perform better in academia, technical trades (e.g. mechanics and lab technicians), arithmetic-centered work (e.g. programming, finance), and fields involving lots of attention to detail (e.g. legal professions). 

We sometimes express these interests via “infodumping,” or engaging in long (often one-way) conversations about the details of our interests. This is not the social hindrance people may think, because sharing the interests we hold close is one way of showing that we trust the person with whom we are sharing them. There are also sex differences present in special interests. Although anybody can take on any interest, there are general patterns of males preferring special interests involving numbers, machines, or parts of objects, whereas females tend to exhibit interests towards animals, people, relationships, or the arts. The specific interests themselves can be infinite, but the underlying connection is the depth to which we pursue them. 

Habits and Routines

Fixed habits and routines are another hallmark trait of autism. We develop routines that help us maintain a feeling of stability, even if the routines themselves don’t align with conventional neurotypical standards or seem arbitrary. For example, an autistic person may prefer to put on their jacket after tying their shoes, or walking along the same route in their neighborhood at the same time every afternoon. Rather than monotony, these routines provide us with a feeling of comfort and control over our lives. Certain habits that seem unusual may also help us navigate our sensory experiences. For example, a person may turn off their computer even if they’re leaving for just a few minutes so they don’t have to hear the constant machine humming. 

That’s not to say our habits remain stagnant. Change (external or internal) can be difficult or overwhelming, but it’s a part of life that autistic people are not exempt from. We process it differently and the ways we act upon it help us maintain an equilibrium between the familiar and the novel.