What is Autism Spectrum Disorder? A Comprehensive Guide to Understanding Autism
Key Takeaways
- Autism spectrum disorder (ASD) is a neurodevelopmental disorder, not a mental disorder.
- While there are a wide variety of possible autistic characteristics, ASD tends to affect how people communicate, behave and process sensory information.
- Autistic people have a higher likelihood of having a number of other conditions, including ADHD, gastrointestinal issues and Ehlers-Danlos Syndrome.
- Historically, it has been more difficult for people from marginalized communities to access an autism diagnosis.
What is autism spectrum disorder?
Autism spectrum disorder (ASD) is a neurodevelopmental disorder. This means it’s a developmental disability involving an individual's neurological system. It is not a mental disorder or mental illness. ASD affects how people communicate, behave and process sensory information.
Some people believe that the term "spectrum" means everyone falls somewhere on the spectrum of autism. This is because autistic traits are human traits. Many people do have some features of autism, but this does not mean they have enough features of autism, at a high enough level, to be clinically diagnosed as autistic. In actuality, the term “spectrum” helps to highlight that there are many ways that autism can affect people differently. There’s a wide range of how autism presents in someone’s life. For example, there are some autistic people who need significant support, while others can live more independently.
The diagnosis “autistic disorder” was added to the Diagnostic and Statistical Manual of Mental Disorders (DSM-III-R)––a reference manual for mental health providers—in the late 1980s.
However, the DSM-5, released in 2013, resulted in a major change in language surrounding autism. Autism spectrum disorder (ASD) is now an overarching diagnosis, encompassing the older diagnoses of Asperger’s syndrome, pervasive developmental disorder-not otherwise specified (PDD-NOS), and autistic disorder.
Increasing awareness and understanding autism
People used to think autism spectrum disorder was rare, but many people are realizing it’s more common than they thought.
The Cleveland Clinic estimates that 1 in 36 children in the U.S. is autistic, and the CDC estimates that 2.21% of U.S. adults are autistic.
However, these percentages may actually be higher due to factors like misdiagnosis, underdiagnosis or late diagnoses. These occurrences are particularly common among certain groups, such as girls and women, people of color and those from marginalized communities.
This doesn’t mean autism is more common now than it used to be. Rather, autism awareness among healthcare providers is higher, especially now that there’s better access to tools and resources for continued learning. The general public knows more about autism, too. These advances help foster better understanding for autistic people as well as their families, friends and communities.
Causes and risk factors of ASD
According to the Cleveland Clinic, there isn’t a single known cause of autism. However, research has pointed to some potential causes.
Genetic components
Genetics can play a pivotal role in who has autism. For example, autism has been linked to a number of other genetic conditions, such as:
Even without specific conditions, a variety of gene mutations are linked to autism.
As stated by Harvard Medical School, roughly 75-85% of autism has a genetic factor.
Environmental factors
Other than genetics, environmental factors may play a role, as certain other factors are associated with increased rates of autism (though a direct causal link has not been established) including:
- Exposure to certain medications or types of pollution while in the womb
- Complications during birth
- Parents who are older
Since environmental influences interact with our genetics, finding the exact cause may be difficult.
Common characteristics of autism spectrum disorder
Although ASD presents differently in everyone, here are five common characteristics.
Communication challenges
Autistic individuals often experience challenges with social cues, small talk and relationship-building. Some folks might find it challenging to understand non-verbal signals, such as body language or tone of voice. Autism can also make it hard to understand jokes or sarcasm.
Repetitive actions
Autistic folks may engage in repetitive actions or movements, which is sometimes referred to as stimming. People stim in all sorts of ways, but some examples are:
- Hand-flapping
- Rocking
- Using a fidget spinner
- Twirling a pen
- Biting nails
- Bouncing
- Singing
Stimming is an important tool that helps autistic individuals self-regulate, relieve stress and even avoid burnout. Stimming is also observed frequently with other diagnoses, including ADHD and anxiety.
Special interests
Many autistic folks have special interests. These aren’t just passing interests, but topics that people intensely focus on. These interests can involve extensive research, dedicated time spent learning or practicing and frequent discussions about the subject with others. These might range from a specific field of study, such as science or history, to a hobby like collecting or gaming. People can even have multiple special interests and might move on to new interests as life changes for them.
When I was eight, my special interest was Egyptology. I could tell you in detail about mummification, deities, well-known pharaohs and many of the hieroglyphics. When Final Fantasy 7 came out a few months later, my attention shifted to learning everything about the game. My friend TJ has always been very into math. As he grew up, he became incredibly interested in baseball statistics. Eventually, he ran a blog on obscure baseball statistics and even helped consult on a book.
Like stimming, special interests often help autistic people rest and cope with stress. These can also help to create deep connections with people who share the same special interests, whether that’s in person or online.
Sensory sensitivities
One thing that most autistic people experience is challenges in processing sensory input. Some folks have hypersensitivity to sounds, lights or textures. For example, an autistic person might find the texture of a fleece blanket super uncomfortable or become overwhelmed by loud environments.
Alternatively, some people experience hyposensitivity, where they don’t react to sensory stimuli as easily. This might show up as sitting in a freezing cold room without feeling cold or taking steps to deal with the temperature, like putting on a sweatshirt, grabbing a blanket or changing the thermostat.
It’s important to know that people can experience both hypersensitivity and hyposensitivity. For example, someone might experience more sensitivity to sound but not process pain as quickly. Regardless of how someone experiences these sensitivities, it can make environments difficult to navigate.
Co-occurring conditions
Most autistic individuals also have other health conditions. Some of the most common include depression, ADHD, and anxiety. Headaches, gastroesophageal reflux disease (GERD), seizure disorders, gastrointestinal issues, and sleep issues are also quite common. Movement disorders, like Restless Leg Syndrome, Ataxia, and Ehlers-Danlos Syndrome (EDS), a joint hypermobility syndrome, are, too.
Diagnosing autism spectrum disorder
Many factors go into an autism diagnosis, whether someone is getting diagnosed as a child or an adult.
Early signs and age of diagnosis
Most autistic people today are diagnosed in childhood. On average they are diagnosed around the age of 5, as early signs typically emerge during this developmental period. Common early indicators can include factors such as delayed speech, limited interest in social interaction and stimming. Autistic children may receive individualized support in school, including access to therapies, such as speech or occupational therapy, to help them develop communication and social skills.
Diagnostic process
Diagnosing autism spectrum disorder in a child can involve multiple professionals, including developmental pediatricians, psychologists and speech-language pathologists. These specialists use a variety of tools during the screening and diagnostic process, such as the Modified Checklist for Autism in Toddlers (M-CHAT) and the Autism Diagnostic Observation Schedule (ADOS-2). Depending on a child’s age, the path to a diagnosis is much different than it is for an adult.
There are no formally established guidelines for adults, but some providers opt to use some of the same tools that were created for childhood use. Psychologists and other mental health providers rely heavily on The Diagnostic and Statistical Manual of Mental Disorders to diagnose conditions related to mental health, trauma, and neurodivergence. The current edition that providers use to aid in diagnosis is the DSM-5-TR.
When someone seeks a diagnostic evaluation from Prosper Health, the emphasis is on understanding the perspective of the person seeking evaluation. A Prosper psychologist will collect information about their experiences and take a comprehensive history. The provider also uses standard, well-validated rating forms to aid in the assessment. Additionally, they’ll gather information from someone familiar with the client’s early history and someone who’s familiar with the client’s current situation. The bulk of the evaluation, though, is focused on interviews and observations of the client through a structured process.
Challenges in diagnosis
As with other types of neurodivergence like ADHD, autism is underdiagnosed in girls, women, and people who are nonbinary, transgender or gender expansive. Many of the diagnostic tools have been created with cisgender boys in mind, which means the questions are more geared toward their characteristics.
Similarly, BIPOC folks face a number of additional hurdles in accessing a diagnosis compared to white individuals since racism and systemic discrimination are prevalent throughout healthcare systems.
Compounding this issue is the challenge of access to care. Affordable providers with expertise in autism diagnosis are often scarce, and lengthy wait times for evaluations can leave individuals undiagnosed or struggling without support for years. For many, the high cost of diagnostic services—often not fully covered by insurance—creates an insurmountable barrier.
Plus, there are many people who’ve had to become exceptional at masking or developed certain coping strategies. Masking––combined with a lack of cultural competency, bias in healthcare and a lack of healthcare access––can easily lead to someone receiving a misdiagnosis or no diagnosis at all.
The diagnostic process can also be complicated by co-occurring conditions. If there are overlapping characteristics, providers may diagnose someone with ADHD or a mental health disorder, for example. Providers have been historically told they shouldn’t entertain an autism diagnosis if certain other diagnoses already exist. For example, up until the release of the DSM-5 in 2013, the general consensus was that a person could not have both ADHD and autism. This has led to many late or missed diagnoses.
Challenges and misconceptions about autism
Even though there’s growing awareness surrounding autism, there are still many misconceptions and myths.
Vaccines
One of the most pervasive and harmful myths about autism is the false claim that vaccines cause it. This misconception originated from a discredited study published in the late 1990s, which has since been thoroughly debunked by extensive scientific research. Numerous large-scale studies have shown no link between vaccines, such as the MMR (measles, mumps, rubella) vaccine, and autism. Organizations like the CDC, WHO, and the American Academy of Pediatrics emphasize the safety and necessity of vaccines for public health.
Misinformation like this not only stigmatizes autism but also endangers communities by fueling vaccine hesitancy. Lower vaccination rates can lead to outbreaks of preventable diseases, posing serious risks to vulnerable populations. It’s crucial to rely on reputable sources and evidence-based science to combat these myths. By spreading accurate information, we can protect public health and challenge the stigma surrounding autism.
Empathy
One misconception is the belief that autistic individuals lack empathy. In reality, autistic individuals experience deep emotions and care deeply for others. Sometimes, expressing these things can be hard or difficult.
In fact, many autistic individuals have heightened sensitivity to others' emotions, sometimes to the point of becoming overwhelmed. This can make any social interaction extra draining or even distressing. Far from lacking empathy, autistic people may deeply internalize the emotions of those around them, which underscores the need for others to recognize and respect their unique ways of processing and expressing care. This misconception perpetuates harmful stereotypes, but greater understanding can foster more supportive and empathetic relationships.
Non-social
Another persistent misconception about autism is that autistic individuals are anti-social. This stereotype stems from misunderstanding the ways autistic people interact with others and navigate social situations. Autistic individuals may struggle with traditional social norms, like making eye contact, engaging in small talk or interpreting nonverbal communication. These can sometimes be misinterpreted as a lack of interest in others. However, these challenges do not equate to being non-social. In many cases, autistic people value meaningful connections but prefer deeper conversations or interactions that align with their comfort and energy levels.
Intellectual disability and savants
Another common myth is that all autistic individuals also have an intellectual disability. Per the Centers for Disease Control and Prevention, 37.9% of autistic children observed in a 2020 study had an intellectual disability. While some characteristics of autism spectrum disorder can overlap with intellectual disability, intellectual ability within the autism community varies widely, with the majority of autistic people having average or above average intellectual functioning
There are even people called savants, who have exceptional talents in specific areas, like solving math problems in their heads quickly. But, contrary to what popular TV shows and movies might depict, this is an exceedingly rare condition. Harvard Medical School estimates that roughly 10% of folks with ASD have savant-like skills or characteristics.
Autistic people don’t make eye contact
A common stereotype is that autistic people never make eye contact. While it’s true that some autistic individuals may avoid eye contact, it’s not a universal trait. For many, maintaining eye contact can be uncomfortable or even overwhelming due to heightened sensory sensitivity. This isn’t a sign of disrespect or disinterest, but rather a way to manage sensory overload or focus better on the conversation itself.
It's also important to note that eye contact preferences can vary greatly among autistic individuals. Some may learn to make eye contact through practice or masking but find it draining over time, while others might naturally engage in eye contact without difficulty. Assuming that all autistic people avoid eye contact perpetuates a one-size-fits-all narrative, which doesn’t reflect the diverse experiences within the autistic community.
Autism can be cured
A common myth about autism is the belief that it can be cured. Autism is not a disease but a neurodevelopmental condition that shapes how a person experiences and interacts with the world. As such, it isn’t something that can or should be “cured.”
Efforts to frame autism as a condition in need of a cure often stem from a misunderstanding of what it means to be autistic. These narratives can be harmful, suggesting that autistic individuals are somehow “broken” or need to change who they are.
The impact of myths and stereotypes
These myths and misconceptions are harmful. They affect a huge amount of people’s lives, from education and employment to stigma when interacting with others and accessing support. If an autistic person doesn’t meet an allistic (or non-autistic) person's expectations, the consequences could be dire. For one, the allistic person may assume the other person is lying about being autistic. Plus, if the allistic person is in a position to make decisions about accommodations or support, they may assume that the autistic person doesn’t need help. This level of gatekeeping can be incredibly damaging.
Negative perceptions also extend to families and friend groups, who may struggle to accept, understand and support their autistic loved one.
The more that we educate others about what living with autism is really like, the more we help eliminate stigma and misconceptions.
Living with autism spectrum disorder
Autistic individuals may face unique challenges in social settings, relationships, employment and beyond.
For example, building and maintaining relationships might be more complicated since autistic adults may struggle with understanding social cues or communication. This can lead to misunderstandings, whether that’s with a friend group, co-workers or a romantic partner.
Finding and maintaining a job can be challenging. Many autistic individuals excel in areas such as creativity, problem-solving and attention to detail. Some work in jobs that align with one of these skills or their special interests. Others may face difficulties figuring out jobs that are interesting, accommodating and comfortable.
Workplaces can also be overwhelming if they are not designed to support neurodivergent employees. Accommodations like flexible schedules, the ability to work from home and quiet workspaces can be highly beneficial.
With the proper support to help manage their characteristics, many autistic individuals lead fulfilling lives with successful careers and satisfying relationships.
How Prosper Health can help with autism spectrum disorder
If you’re autistic or looking for an adult autism evaluation, Prosper Health is here to help.
We provide virtual diagnostic evaluations and neurodivergent-affirming therapy, which are covered by insurance. Receiving specialized mental health support meant for autistic and neurodivergent adults can be life-changing.
Our expert clinicians specialize in adult autism and incorporate evidence-based therapies into sessions, tailoring all care to the unique needs of autistic adults.
With Prosper’s support, thriving with autism is possible.
Sources
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