Quick Guide to Understanding Autism

Autism spectrum disorder (ASD) is developmental disorder that can cause significant social, communication and behavioral challenges. Most of the time, people with ASD look “normal” but they may communicate, interact, behave, and learn in ways that are different from most other people.

Autism is a spectrum which means that there is a wide variety of characteristics. A person can fall anywhere from needing help with basic skills to living an independent life. Autism occurs in all racial, ethnic, and socioeconomic groups, but is almost five times more common among boys than among girls. The Center for Disease Control estimates that about 1 in 68 children has been identified with Autism Spectrum Disorder. Many people who self-identify as neurodivergent share some Autistic characteristics . 

Symptoms

People with ASD often have problems with social, emotional, and communication skills. They might repeat certain behaviors and might not like change in their daily activities. They may seek out or avoid certain sensory behaviors. Many people with ASD also have different ways of learning, paying attention, or reacting to things. Signs of ASD begin during the infant years and typically last throughout a person’s life.

Social Challenges

Most people who have autism have a hard time with social interactions. By 8 to 10 months of age, many infants who go on to develop autism are showing some symptoms such as failure to respond to their names, reduced interest in people and delayed babbling. By toddlerhood, many children with autism have difficulty playing social games, don’t imitate the actions of others and prefer to play alone. They may fail to seek comfort or respond to parents’ displays of anger or affection in typical ways. Research suggests that children with autism are attached to their parents. However the way they express this attachment can be unusual. To parents, it may seem as if their child is disconnected. 

Both children and adults with autism also tend to have difficulty interpreting what others are thinking and feeling. Subtle social cues such as a smile, wave or grimace may convey little meaning. To a person who misses these social cues, a statement like “Come here!” may mean the same thing, regardless of whether the speaker is smiling and extending her arms for a hug or frowning and planting her fists on her hips. Without the ability to interpret gestures and facial expressions, the social world can seem bewildering.

Many people with autism have similar difficulty seeing things from another person’s perspective. Most five year olds understand that other people have different thoughts, feelings and goals than they have. A person with autism may lack such understanding or have to really focus on someone else’s perspective. This, in turn, can interfere with the ability to predict or understand another person’s actions.

Communication Difficulties

By the first birthday, most typically developing toddlers say a word or two, turn and look when they hear their names, point to objects they want or want to show to someone (not all cultures use pointing in this way). When offered something distasteful, they can make clear – by sound or expression – that the answer is “no.” 

By contrast, babies and toddlers with autism tend to be delayed in babbling and learning to use gestures. When language begins to develop, the person with autism may use speech in unusual ways. Some have difficulty combining words into meaningful sentences. They may speak only single words or repeat the same phrase over and over. Some go through a stage where they repeat what they hear verbatim (echolalia).

Some mildly affected children exhibit only slight delays in language or even develop precocious language and unusually large vocabularies – yet have difficulty sustaining a conversation. Some children and adults with autism tend to carry on monologues on a favorite subject, giving others little chance to comment. In other words, the ordinary “give and take” of conversation proves difficult. Some children with ASD with superior language skills tend to speak like little professors, failing to pick up on the “kid-speak” that’s common among their peers.

Another common difficulty is the inability to understand body language, tone of voice and expressions that aren’t meant to be taken literally. For example, even an adult with autism might interpret a sarcastic “Oh, that’s just great!” as meaning it really is great. 

Conversely, someone affected by autism may not exhibit typical body language. Facial expressions, movements and gestures may not match what they are saying. Their tone of voice may fail to reflect their feelings. Some use a high-pitched sing-song or a flat, robot-like voice. This can make it difficult for others to know what they want and need.

Spoken Language

The ability to use Spoken language is not mentioned in the official Autism criteria. Spoken language is a cognitive skill and the ability to speak depends on whether certain areas of the brain are working correctly. Autism does not impact these areas directly but many conditions associated with Autism like Fragile X, seizure disorders, global developmental delays can impact the language areas of the brain resulting in a person not being able to speak.

If a person only has Autism and no other conditions or brain damage they are generally able to learn Spoken language normally. If a person has some sort of dysfunction with language areas of the brain they may experience significant language delays and don’t begin to speak until much later in life. With therapy, however, most people with Autism do learn to use spoken language and all can learn to communicate with pictures, sign language, electronic word processors or speech-generating devices.

Repetitive Behaviors

Unusual repetitive behaviors and/or a tendency to engage in a restricted range of activities are another core symptom of autism. Common repetitive behaviors include hand-flapping, rocking, jumping and twirling, arranging and rearranging objects, and repeating sounds, words, or phrases. Sometimes the repetitive behavior is self-stimulating, such as wiggling fingers in front of the eyes.

The tendency to engage in a restricted range of activities can be seen in the way that many children with autism play with toys. Some spend hours lining up toys in a specific way instead of using them for pretend play. Similarly, some adults are preoccupied with having household or other objects in a fixed order or place. It can prove extremely upsetting if someone or something disrupts the order. Along these lines many children and adults with autism need and demand extreme consistency in their environment and daily routine. Slight changes can be extremely stressful and lead to outbursts 

Repetitive behaviors can take the form of intense preoccupations, or obsessions. These extreme interests can prove all the more unusual for their content (e.g. fans, vacuum cleaners or toilets) or depth of knowledge (e.g. knowing and repeating astonishingly detailed information about Thomas the Tank Engine or astronomy). Older children and adults with autism may develop tremendous interest in numbers, symbols, dates or science topics.

Some repetitive behaviors have to do with sensory processing difficulties. Sensory Processing refers to the way our nervous system receives messages from the senses and responds to those messages. People who have a difficult time processing this sensory information essentially have a neurological traffic jam that prevents certain parts of the brain from receiving the information they need to interpret sensory information correctly. These difficulties lie on a spectrum with some people having severe difficulties while others are more mild. 

Humans have seven senses: sight, hearing, smell, taste, tactile, proprioceptive and vestibular. You have probably heard of the first five but the last two are often overlooked. Proprioceptive input is the sense we get from our muscles and joints. Vestibular is the sense that tells us when we feel dizzy. People who have a difficult time processing sensory information misinterpret the strength of different input to senses. Some people have one or two senses impacted, others have difficulties with all of the senses.

A person may be hypo-senstive or hyper-sensitive to any sense. Hypo-sensitive means that the brain turns down the volume on these senses. They may not notice input and are often referred to as “sensory seekers”. Hyper-sensitive means that the brain turns up the volume on these senses. They are extra aware of input and are often referred to as “sensory avoiders”. Others are both hyper and hypo sensitive based on the situation and input type. 

A sensory profile refers to the unique combination of sensory issues a neurodivergent person experiences. Some senses could be hypo-sensitive, others hyper-sensitive, maybe both hyper and hypo and some not impacted at all. For instance, a person may be overly sensitive to sounds and avoid loud noises, be under sensitive to touch and seek out rough textures while having no issues with their vision.

What causes Autism

Current theories about Autism suggest that people who have a genetic predisposition to ASD and have environmental stressors before and during are at the highest risk. These environmental stressors include advanced parental age at time of conception (both mom and dad), maternal illness during pregnancy and certain difficulties during birth, particularly those involving periods of oxygen deprivation to the baby’s brain. It is important to keep in mind that these environmental factors alone do not cause autism, they just increase the chances. 

High Functioning Autism Vs. Severe Autism

The labels often used to describe Autism as high or low functioning are not accurate. What they are actually describing is a person’s cognitive functioning. Cognitive functioning describes how well the brain is working in certain areas and includes: attention, memory, reasoning and language that directly leads to gaining information.

If a person with Autism has high cognitive functioning they usually speak, can pay attention to social skills that are constantly being taught, remember previous learning experiences and can logically reason how they should respond to a social situation even if it does not come natural to them. Meanwhile, someone without those abilities is not able to respond appropriately. As you can imagine, these two situations are going to be “judged” very differently by society who then labels one “high functioning autism” and the other “severe autism” but in reality they both have the same social deficits–one just learned to adapt and the other was not able to due to brain abnormalities. 

The ability to adapt has huge implications for treatment. A person with high cognitive abilities may only need 10 trials to learn a new skill while a person with low cognitive abilities may need 80 trials to learn that same skill. Essentially, the first person is learning 8 times as many skills as the second person learned one skill which snowballs over the lifespan. This allows people with high cognitive functioning who were considered to have “Mild Autism” to catch up while those who have low cognitive functioning and considered to have “Severe Autism” to fall further and further behind their peers. 

One contributing factor to cognitive functioning is oxygen deprivation before, during or shortly after birth. There can be multiple ways that this occurs: the mother’s blood may not have had enough oxygen, the mother’s blood pressure may have been too high or too low, the placenta could have separated too early, the mother may have had a very long or difficult delivery, the umbilical cord may have been compressed or wrapped around the baby’s neck, a serious infection could have occurred, the baby’s airway could be blocked or have a malformation, or the baby may have anemia and not carry enough oxygen. Whatever the cause, Seattle Children’s explains “without oxygen, cells cannot work properly. Waste products build up in the cells and cause temporary or permanent damage”. 

Conservative numbers estimate that 15-30% of people with Autism also have seizures, many of which often cause some brain damage. Additionally, a genetic condition named Fragile X Syndrome, is the most common cause of inherited intellectual disability and it also is associated with nearly 10% of Autism cases.

Some people who have Autism have a genetic condition that influences their brain development. These disorders include: Fragile X syndrome, Angelman syndrome, tuberous sclerosis, chromosome 15 duplication syndrome and other single-gene and chromosomal disorders. For some of these disorders there are characteristic features or they run in families, so knowing if there is known genetic basis for a particular person’s case of Autism can be helpful for comorbid medical issues and life planning. 

Testing

ASD can be diagnosed in infants as young as 6 months old but many parents do not seek out an evaluation until much later due to many factors. Research shows that oldest and only children tend to be diagnosed the latest because their parents have nothing to compare their behavior to while middle and youngest children are diagnosed much earlier when their parents notice a difference compared to previous children. Many places have long wait lists for Autism testing which can also delay diagnosis.

ASD is most frequently diagnosed by a developmental pediatrician, neurologist, psychiatrist or psychologist. The diagnostic process usually consists of getting a detailed developmental history, some standardized tests and behavioral observations. The results are usually written up into a report and shared with the family. 

Treatment

Not all people with autism want or need treatment. The decision to address certain areas is an individual decision that each family makes. There are a variety of therapies available including: Floortime, Reflective Integration Therapy (RIT), Applied Behavioral Analysis (ABA), Occupational Therapy (OT), Physical Therapy (PT), Speech/Language Therapy and Hippotherapy (Therapeutic Horseback Riding). 

Some therapies focus on reducing problematic behaviors and building communication and social skills, while others deal with sensory integration problems, motor skills, emotional issues, and food sensitivities. Each person who has ASD experiences symptoms in different ways so the best form of treatment for them will be unique. 

Stigma

There is a lot of stigma around the word Autism due to years of ever changing diagnostic criteria. In the past things like spoken language and cognitive skills were more closely tied to the diagnostic criteria. Today neither are mentioned and an Autism diagnosis focuses only on social and repetitive aspects of a person’s life. Autism at its core is just a different way of thinking that falls within the Neurodiversity umbrella. 

Neurodiversity is a newer approach to thinking about a collection of brain-based disorders including: Autism, ADHD, Sensory Processing Disorder, Apraxia, Dyspraxia, Dyslexia, Pathological Demand Avoidance, Anxiety, and other mental health conditions. Instead of seeing the brain as flawed, the idea is that neurological conditions are the result of normal variations in the human genome that have been present throughout history and have many positive qualities. The struggles associated with neurodiversity do not stem from the person, but from the mismatch between the neurodivergent person and the environment or society they live in.

With this positive mindset, a person with ADHD is not impulsive and hyper but instead is creative and adventurous. Throughout history these adventurous, creative people were valued members of their society as hunters, explorers and innovators. They could run further to hunt down a deer, find excitement in taking a new path and take risks with their craft to come up with new, more efficient methods.