What is Autism?
author/ amanda/ august 11, 2023
(As of 2023, the most up-to-date text regarding this topic is The Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition, Text Revision (DSM-5-TR.) The DSM-5 is what will be referenced as there have been some recent updates and changes to the text regarding criteria, diagnoses, and more.)
A General Overview of Autism:
Autism Spectrum Disorder, also called ASD, is a neurodevelopmental disorder that affects the way someone’s brain works and how they perceive and interact with the world around them. Autism is a spectrum, which means that it can vary in its presentation of symptoms, challenges, and abilities from person to person. Autism is not a disease or a learning disability, it is a neurodevelopmental disorder.
Think of it this way. Imagine if every neurotypical in the world had an electric bike. They ride easily through town, get to their destinations quickly, and expel very little energy doing so. Now imagine that everyone with autism had a pedal bike. They take much longer to travel, the bike requires far more exertion, and they arrive at their destinations exhausted and overwhelmed. Neurotypicals often think that everyone rides an electric bike and that things are “not that hard.” Individuals with autism may notice that everyone else has an electric bike, and that everything seems so easy for them, but they aren’t able to get a new bike. This is similar to the autistic experience.
Autism is a lifelong condition that cannot be “grown out of.” Just as there are autistic children, there are autistic adults, who seem to be regularly forgotten and dismissed. There tend to be a plethora of supports, accommodations, and modification options for children with autism such as through the public school system and community programs, but sadly, these supports dwindle the older the individual gets. There is a severe lack of support for autistic adults and once an individual has left/graduated school, the many supports available vanish.
There are many misconceptions about autism, one being that it is a condition only found in boys. Autism research and diagnostic criteria were based primarily on observations of boys with autism. This focus on the various presentations of autism in boys has contributed to the underrepresentation of girls in research, diagnosis, and the development of diagnostic tools. Autistic girls and women will often be diagnosed with various mood conditions such as major depression and bipolar disorder instead of or prior to an autism diagnosis due to the lack of awareness of symptom presentation in girls and women. They may also be diagnosed with conditions such as obsessive compulsive disorder, various eating disorders, and generalized anxiety. Sometimes, this is due to misdiagnosis, while other times it is due to autism co-occurring alongside the other condition(s.) Also, girls and women are often expected to be more socially adept, empathetic, and verbally skilled. This may “hide” some of their more autistic traits, and not without significant exertion. Ultimately, this gender bias can result in a lack of recognition and appropriate support for girls and women with autism. Addressing this bias in autism is crucial for understanding the unique experiences of girls and women on the spectrum. By increasing awareness, improving diagnostic criteria, and promoting research that includes diverse populations, we can hopefully have a more equitable and comprehensive understanding of autism for all.
Autistic individuals often exhibit communication and social challenges. They may find it difficult to understand and interpret social cues, gestures, or nonverbal communication, though this is not always the case for girls and women. They may also be hyper aware of these actions as well. It can also be a struggle to initiate and maintain conversations, especially with prolonged eye contact, or develop and keep relationships long term. Some autistic girls and women can maintain eye contact, but usually not without overthinking it mid conversation. Girls and women often work very hard to mask their autism in social situations, sometimes making it a challenge to detect. Also, they often have restricted interests and display repetitive behaviors. They usually have specific interests that are on the more passionate and intense side. It can sometimes be difficult to identify this trait in girls and women because their special interests tend to be considered “socially acceptable” by neurotypicals. They may also engage in repetitive movements and behaviors as well as have strict routines and rituals. Also, many with autism have various sensory sensitivities. This means they may be over or under-sensitive to certain sensory input and experiences. This can include sensitivity to sounds, lights, textures, tastes, temperatures, or smells. Sensory sensitivities can seriously impact how they perceive and respond to their environment in an effective way.
The Average Life Expectancy of Autistic Individuals
Again, autism is a spectrum, which means that it can vary heavily from person to person. Autism does not have a phenotype, meaning individuals with autism don’t “look” a certain way. This is why it is extremely rude when someone tries to invalidate your autistic experience by saying, “Well, you don’t look like you have autism. My son has autism and you are nothing like him.” Each individual with autism is unique, with their own set of strengths, challenges, and characteristics. No two autistic individuals are exactly alike. This is why when you meet a person with autism, you have done just that, met a person with autism. That individual’s experience may be completely different than another’s with autism. This can make it difficult to identify, especially in girls and women.
Again, autistic girls and women often exhibit several unique characteristics making them particularly difficult to diagnose. Regarding their specific interests, they are more likely to be passionate about topics and objects that are “socially acceptable” and suitable for their age. This may show up as an intense interest and passion for animals, skincare, makeup, fashion, going to the gym, and more. Since these interests are more “socially acceptable” for a girl or woman to participate in, it often goes unseen by others and is easily dismissed. They are more likely to be called a “horse girl” rather than an autistic girl who has a special interest in horses. Similarly, girls and women with autism are more likely to engage in repetitive stimming. Stimming can serve various purposes and can be a way for them to self-regulate, express themselves, or cope with sensory experiences. For girls and women, this may look like hair twirling, fingernail biting, fiddling with jewelry, leg shaking, nail tapping, along with a plethora of other stims. Since many of these stims are “socially acceptable” and rarely seen as significant by others, they go unnoticed and written off as a quirk. Many autistic girls and women also tend to quickly develop coping mechanisms in order to appear more similar to the individuals around her. This is called “masking.” Basically, masking involves imitating or “copying” the behaviors, mannerisms, or social cues of those around them in order to fit in and appear more socially adept. They may not even realize they are doing this because their act of being a social chameleon is so ingrained and sometimes subconscious. Because of this, they may consciously or unconsciously learn to mimic facial expressions, body language, or the speech patterns of those around them. They may force eye contact even though it is uncomfortable, think about how much eye contact is appropriate in conversation, and practice eye contact in front of a mirror. Similarly, they may practice conversations when alone and list possible topics of conversation prior to engaging in a social event so as to be prepared for small talk and the like. Girls and women may also think to themselves that everyone around them must be doing these acts too. Autistic girlies tend to work hard to suppress their more autistic traits in public and wait to partake in them until alone in order to avoid drawing unnecessary attention or judgment from others. Constantly monitoring and adjusting their behavior through masking can be extremely exhausting, making social experiences feel like a significant amount of work whether they realize it or not. Many autistic girls and women mention that when they get home from a day or night of socializing and have the freedom to take off their mask, they often show their “worst” side to their family members. Because they are so drained by prior social experiences, they may lash out at home, retreat to their room, appear negative, antisocial, and highly emotional. This is often something that they feel guilty about and unsure of how to fix. All of this effort can be mentally and emotionally draining, leading to increased stress, anxiety, and burnout. Not only this, but it can severely impact one’s self-identity. It can create a divide between their true self and the mask/persona they present to the outside world. This internal struggle can lead to feelings of isolation, disconnection, and a sense of not being understood by anyone. Girls and women may choose to stay home and be alone rather than go out because it is easier than putting on a mask and draining her battery. It can almost feel like being an entirely different person depending on each situation she is in. This creates intense confusion in knowing who she truly is, what she really likes, and what are the traits and interests she has actually adopted from those around her.
It is vital that we keep fighting against the gender bias surrounding autism, promote awareness, acceptance, and representation, and ensure that girls and women can receive the recognition, support, and opportunities they deserve. By challenging stereotypes, advocating for inclusive research, and listening to the voices of autistic girlies, we can create a more equitable and inclusive society that embraces their diverse experiences.
PS. At this time, there is a movement of sorts from neurotypicals stating that autism is not a “disorder” and rather a personality difference. They are using language such as this in an attempt to be more inclusive and accepting, but unfortunately, it’s rather ableist and invalidating to the autistic experience. Regardless if an autistic individual has high or low support needs, they still have a neurodevelopmental disorder that significantly affects them daily. Some neurotypicals use quotes such as “It’s not a disability, it’s just a different ability” to try and appear accepting of autistic people, but comments like these erases the autistic experience. Autism is a lifelong disability. The words “disorder,” “disabled,” and “disability” are not bad words and separating autism from the word “disorder” may cause issues with funding and support.
For information regarding the diagnostic criteria for Autism Spectrum Disorder, please refer to page 50 of the following PDF of the DSM-5: