What Is Autism And Autism Spectrum Disorder?
By Sarah Fader
Updated January 31, 2020
Reviewer Lauren Guilbeault
In recent years, autism and autism spectrum disorder have made news headlines across the world, in good ways and bad. According to the Centers for Disease Control and Prevention (CDC), 1 in 68 children have been diagnosed with autism spectrum disorder. Although this number is high and has grown in recent years, there are many channels for affected individuals and families to receive care and support. One of these organizations, Autism Speaks®, has helped raise millions of dollars to assist families and individuals who are impacted by autism, and also to help educate people on the truths of autism.
Many people often ask, "what does autistic mean", "what does autism mean", and "what is autism spectrum." According to their website, autism spectrum disorder is defined as "…a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication…" Unfortunately, for the majority of individuals with autism, the disorder impacts them for the duration of their life. In this article, we will give more information on the particulars of this definition, give the common symptoms of autism, how the disorder affects children and adults, and dispel certain myths.
What is Autism Spectrum Disorder?
What's autism? As the definition by Autism Speaks® states, autism spectrum disorder is categorized by three main groups of symptoms. These include issues with social interactions with others, unhealthy repetitive behaviors, and difficulty communicating with others. Alongside and within each of these three main categories, there are more specific behaviors that will be discussed in more detail later in this article. We briefly discuss the three main categories in more details here:
Difficulties with Social Interactions
Autism is often diagnosed in toddlers because toddlers without autism show specific traits such as smiling at parents, beginning to react to their name, and attempting to engage socially with their parents. When a child has autism, they do not understand social cues and therefore might seem distant or unresponsive. More so, other than not understanding social cues, as children with autism get older, they do not see social cues as a tool for interacting with others, and often have a hard time distinguishing between different emotions. To individuals with autism, a smile and a frown might not hold different meaning for them. Additionally, these individuals may also have a difficult time expressing emotions. Temper tantrums are likely more common and can also result in self-harming behaviors.
As verbal communication is a tool for social interaction, many children with autism are either delayed in speech or they may start talking early but then not speak again until much later. Although toddlers without autism start speaking at different times, usually by three years old, all are at least babbling. Speech therapy helps most children with autism begin speaking. Initially, children who are delayed in speaking might learn to communicate through using cards or hand gestures once taught their associated meaning. Rewarding the child for completing tasks helps reinforce these behaviors.
Individuals with autism are often obsessive over small details and require very strict routines. Often a break in routine can result in large amounts of stress. The occurrence of obsessing over information has gained interest by researchers and the popular media that have noticed some individuals with autism are extremely skilled at certain things. An article in TIME magazine described a study that observed traits in child prodigies who had been diagnosed with autism. These individuals had accomplished great feats (like writing a symphony before age 10), in part due to the obsessive symptoms that are commonly seen among individuals with autism.
Additionally, repetitive behaviors are common, such as repeating information, swaying back and forth, or arranging toys/things. Sometimes these types of behaviors can cause self-harm if the repetitive behavior takes the form of hitting oneself or hitting ones head on objects. One study found that 28% of children with autism engage in self-harming behaviors.
Within these three main categories, each grouping of symptoms is on a spectrum from relatively mild to severe. For example, one category of autism that is thought to be relatively mild is Asperger syndrome. Individuals with this type of autism are often socially awkward and may be obsessive over certain types of information, but they usually do not show delayed speech.
Additionally, many individuals ask "what is autistic" or "what is autistic disorder." The word autistic refers to someone being affected by autism. Although some people may call someone who has autism 'autistic', this is unkind. As organizations move towards reducing stigma associated with mental health, putting the person before the disorder (saying someone has autism, not is autistic) is important.
A Brief History of Autism
As society's understanding of autism has changed and grown over time, it is helpful to understand the history of autism. We give a very brief timeline, mainly to point out that while we understand more than we previously did, research on autism is still in its infancy:
Early 1900's: Autism was thought to be a specific type of schizophrenia. Unfortunately, this was around the time when schizophrenia was being "treated" by inducing seizures and fevers in patients.
1940's: The term 'infantile autism' was coined by Leo Kanner and 'Asperger syndrome' by Hans Asperger. These two types of autism were initially thought to cover all symptoms of autism, but were different from one another.
1950's: Researchers started to theorize as to the causes of autism. Theories were developed and were ultimately disproven such as thinking that autism developed because mothers harmed their children.
1972: Eric Shopler developed one of the first training programs to help children with autism.
1980: The term 'infantile autism' is added to the DSM (Diagnostic and Statistical Manual of Mental Disorders), which allows psychiatrists to more accurately identify and diagnose autism.
1980's and 1990's: The term 'infantile autism' evolved into 'autism disorder'. Different types of autism began to be incorporated into the DSM such as Asperger syndrome and pervasive developmental disorder- not otherwise specified (PDD-NOS), which acted as a catch-all to include not previously defined types of autism.
2005: Bob and Suzanne Wright create Autism Speaks® and start helping individuals and families to cope with autism, as well as fund autism research.
2013: Autism disorder changed in the DSM to autism spectrum disorder. All sub-categories have been dropped (such as PDD-NOS), and autism is now identified by repetitive behaviors and difficulties with social interaction and communication.
Although society's understanding of autism had a rocky start (as did the consideration of many mental disorders), it is clear that progress is being made in figuring out what causes autism, as well as the best methods for helping those with autism, and their families, cope with the daily struggles that the disorder can bring.
Types of Autism
As of 2013, autism has been defined as a spectrum of disorders, which (as those using the DSM would reason) should not be classified as 'types' of autism. However, it is clear that there are large differences between individuals who experience mild or moderate symptoms compared to those who experience severe symptoms. An individual may have severe symptoms in one category, but mild in others. Additionally, prior to 2013, many individuals with autism may have been diagnosed using terms that are no longer used in the most recent edition of the DSM. Speaking with a health professional is one of the best ways to clear up the confusion surrounding 'labels' associated with autism.
Below, we make brief reference to different ends of the spectrum, although, as mentioned previously, many now believe that using a coherent tool is best when diagnosing autism. It should be noted that the term 'functioning' generally refers to one's ability to verbally communicate. However, given that autism has a variety of symptoms, it can be expanded outside of just verbal communication.
- High-functioning autism: This term is often used to describe individuals who have mild symptoms of autism. As adults, they can usually take care of themselves without help from others. However, these individuals will still experience symptoms of autism such as obsessing over things or ideas, and difficulties with social interactions.
- Asperger syndrome: Although this term is becoming less common, many individuals and groups (including Autism Speaks®) still use it to refer to individuals who have historically fit the definition. Individuals diagnosed with Asperger syndrome are similar to individuals who are considered high-functioning, however they are usually not impacted by speech delays. Their other symptoms are mild, and rarely require assistance from others as adults.
- "Low-functioning autism": On the opposite side of the spectrum from high-functioning autism is low-functioning autism (LFA). Individuals with LFA often have severe symptoms in each of the three main categories of symptoms. They likely need constant attentiveness and care from others (parents or other caregivers) throughout their life. There is evidence that more severe autism symptoms are associated with a greater likelihood to engage in self-harm. The term "low-functioning" is still commonly used, but many have criticized its use stigmatizing these individuals as being unable to function in society. Generally, these individuals should be referred to as having severe symptoms.
Symptoms of Autism
The symptoms of autism can vary widely in children and adults. Symptoms can cause individuals with autism to function in society while others may have severely debilitating symptoms that require constant care from others. So far, we have outlined the three main categories into which most symptoms fall: communication problems, social interaction difficulties, and repetitive behaviors. However, within and among these groups are other symptoms as well. The following symptoms are commonly seen among individuals with autism:
- Seizures and/or Epilepsy: Almost 40% of people with autism experience seizures. These are most common for individuals who have more severe symptoms, however it can impact anyone with the disorder.
- Genetic Disorders: There is some evidence that genetics are impacted in conjunction with the existence of autism in about 20% of cases. These disorders can include Fragile X syndrome, among a variety of other single gene disorders. The definition of Fragile X syndrome sounds remarkably similar to autism. This demonstrates our still novel understanding of the link between genetics and autism.
- Gastro-Intestinal Issues: One physical ailment that impacts almost 85% of individuals with autism is issues with bowel movements, and/or bowel disease. This can sometimes increase the rate of repetitive behaviors, particularly when it helps to calm the individual and potentially relieve symptoms.
- Sleep Dysfunction: Sleep has been reported by parents to be difficult for children with autism. Although the exact reason for this is not fully known, some theories point to children with autism having higher levels of anxiety, being light sleepers, or having abnormal levels of serotonin.
- Pica: Many children with autism eat or try to eat non-food items. Although this is common for all very young children, this can persist in older children and adults with moderate to severe symptoms of autism.
How Does Autism Impact People?
As mentioned earlier, autism has a high prevalence rate in society. The CDC has found that autism is much more common for boys than girls. Roughly 2.4% of boys have autism while only 0.5% of girls have autism. Research has found very few racial differences, meaning that autism can impact anyone. One study found an increased prevalence of autism among individuals with a higher socioeconomic status; however this may be because this group has greater access to resources and are therefore either more aware of the signs of autism or have better access to diagnosis and treatment options.
Many people with high-functioning autism, and parents of low-functioning children with autism have written stories about how the disorder impacts people. One story by a woman named Samantha Ranaghan tells of being diagnosed as an adult and facing a childhood of misdiagnosis. She writes that she was "sensitive to loud noises and I now understand my over sensory issues." Many times, parents or caregivers who explain how they see autism through their own eyes tell the stories of autism.
If you have ever wondered, "What does autism do to people?" you might be interested in reading more first-person stories and books. Some of these books include There's a Boy in Here by Sean Barron, Asperger Syndrome, the Universe, and Everything by Kenneth Hall, My World is Not Your World by Alison Hale, and many others.
Autism in Children
When many people refer to autism spectrum disorder or autism, they are usually referring to or thinking about children. Children diagnosed with autism require a great amount of care and attention, particularly if symptoms are severe. Without a special program or with a misdiagnosis, these children may be bullied by other children and may not do well in a school environment. Children with autism are often given speech therapy and special behavioral tasks to teach them to become more social and communicative. Almost all resources say that an early diagnosis and early start on treatment can help children greatly.
As a parent, learning that your child has autism is often a difficult thing to hear. However, once parents understand the reasons for their child's potentially odd behaviors, it is a relief for many to be able to start seeking help and assistance. One parent's story in discovering her child was on the spectrum, brings to light that autism may not look the way people think it might look, and that all children with autism are unique.
As a child with autism often requires more attention and care, parents can face increased problems with their own mental health. Studies have found that parents with children diagnosed with autism experience more daily stress, depression, and anxiety compared to parents without children with autism. Unfortunately, many parents do not seek treatment because they might feel guilt in taking time away from their child, perceived stigma in worrying what others may think, or just a general unawareness that they are facing mental health problems. Many resources are available online for parents through Autism Speaks® and also through online mental health resources.
Autism in Adults
Adults with autism have either been diagnosed when young or they may not have been diagnosed until they reach adulthood. Adults who are considered high-functioning may not have been diagnosed as a child because their symptoms were not severe enough to warrant a diagnosis, a misdiagnosis may have happened (for instance diagnosing the child with dyslexia or ADHD), or, as the definition of autism has changed, they may not have 'met the requirements' for diagnosis. These individuals are usually able to care for themselves as adults, work jobs, and start families.
Severe autism symptoms are usually noticeable at a very young age, which can allow for early diagnosis. As adults, individuals with severe symptoms may continue to live at home, in a foster-care type home, or in long-term help facilities. These individuals may or may not hold a job, but if they do it is likely specialized and requires the close supervision from another individual. Since more and more individuals are being diagnosed with autism, an estimated half a million adults will be living with autism by 2020.
Myths and Truths About Autism
Given that autism is now discussed more widely in mainstream media, a lot of information surrounding autism is false. Here we give some common myths and truths to dispel these fictions:
MYTH: Vaccines cause autism.
TRUTH: In 1998, one poorly conducted research study found a link between autism and receiving vaccines. This study was picked up by the media and ultimately caused many individuals to believe that there is a link between autism and vaccines. At one point, Autism Speaks® had posted information to suggest a link, but now they state that there is no evidence that vaccines cause autism. Many people think there is a link because children start receiving vaccines around the same time that symptoms of autism start to show, however numerous unbiased studies have found there is no evidence that vaccines cause autism.
MYTH: Parental interaction with their child can cause autism.
TRUTH: This is an old myth that was first spread when autism was first starting to be understood in the 1940's. Initially, mothers were blamed for either "over-stimulating" their child with attention, or not giving them enough affection (this is referred to as the refrigerator mother theory). Although no single cause is known, it is clear that a combination of genetics, biology, and environment (both in and out of the womb) can potentially cause autism.
MYTH: There is a cure for autism.
TRUTH: As of now, there is no cure for autism. It is a disorder that impacts individuals for their entire life. This myth has been spread because of the idea that autism is a "disease" and some parents believing that if autism can be cured, they would get their child back. Many foundations raise money to research cures, however for now the best options for parents and children is to seek reliable treatment including speech therapy and specialized education.
MYTH: More and more children are born with autism.
TRUTH: This myth is potentially only half false. It is true that autism is more prevalent now than in previous years. For instance in 2000, only 1 in 150 children were diagnosed, whereas by 2012, 1 in 68 children had been diagnosed with autism. In part, this is likely caused by an increased awareness of autism, as well as a more general definition of what autism actually is. However, many researchers agree that because little is known about what causes autism, the rates of actual autism are potentially going up. It is likely not the case that the prevalence of autism has increased almost three-fold within 12 years, but it could have increased in part. More research is needed on this topic.
What is Autism Speaks®?
Throughout this article, we have made reference to an organization known as Autism Speaks®, which was founded by Bob and Suzanne Wright in 2005. Many previous organizations have merged with Autism Speaks® in order to create a more coherent plan for raising funds and funding research on autism. This organization is the go-to resource for many individuals seeking answers to questions such as "Whats autism?", "What is the autism spectrum?", and other types of information and resources to better understand autism and seek treatment options. If you have further questions about autism, their website is full of helpful information.
Mental Health Resources
If you as a teen or adult think you might have symptoms that correspond with autism, or if you are a parent with a child that has autism, there are lots of resources to help you. Speaking with a mental health professional online is an easy way to get questions answered that you may have. Online resources are beneficial because they can fit better with your schedule, reduce the need to be away from home, and opens up the number of resources you have at your disposal. Betterhelp.com is one resource that gives you a wide variety of health professionals to choose from.