What Is Autism?

How Is Autism Diagnosed?

In recent years, Autism has become an increasing part of the conversation, as frequency of diagnosis and identification becomes more common. According to the CDC, approximately 1 in 54 children are diagnosed with autism, as per the most recent data from 2016.¹ Also, adults who have previously flown under the diagnostic radar are now being identified well into their 30s, 40s, 50s and beyond. Autism is widely recognized as a disability, but as researchers and clinicians learn more about autism, there is a shift taking place from viewing autism as a primarily pathology-based condition, as in previous decades, moving instead toward understanding autism as a different way of being.⁴

Based on DSM diagnostic criteria, those on the autism spectrum will have differences in social interactions, narrowly focused interests or “repetitive behaviors,” and differences in sensory processing.² Although the DSM uses deficit-based language around autism, one way of looking at autism is that it is simply a different “operating system.”

As an analogy, Apple computers use Macintosh operating systems, and PC computers use Windows operating systems. Neither system is incorrect, they simply work differently. For autistic individuals, autism is their operating system, or neurotype, and wired into that neurotype is the way in which the person perceives, processes, and interacts with the world.

Autism is not a monolithic experience, and there can be different subtypes, like those with pathological demand avoidance. Symptoms of autism in women versus men can also vary.

Social Differences

One of the primarily identified characteristics of autism is a difference in social interaction. For an autistic person, social interactions might feel overwhelming or confusing. As each autistic person is unique, one individual might interpret words or conversation very literally, while another might enjoy and be proficient in sarcasm. Eye contact is commonly referenced in the discussion about autism, as autistic people often make eye contact differently than their neurotypical counterparts. Many autistic individuals struggle with eye contact and find it painful or overwhelming. Others might make more intense eye contact, in a way that is described as “looking into the soul.”

In the neurotypical world of communication, eye contact is generally expected as a way of letting the other person know one is paying attention. For an autistic person who finds eye contact overwhelming, that individual would likely be better able to listen, and process the conversation more effectively by not making eye contact, so it is helpful to note these differences to facilitate better understanding of autistic communication styles and needs.

For people on the autism spectrum, another common social difference might include a limited “social battery.” While some autistic individuals are outgoing and extroverted, many are introverts who may have very limited energy for social interaction. Interacting socially tends to require more energy and brain resources for an autistic person than for a neurotypical person, and can leave the autistic person feeling exhausted and drained (referred to as autistic burnout). Many autistic people require solitude to recharge after socializing or interacting, to restore their energy and recover. For many autistic individuals, time spent alone is not only preferred or enjoyable, but incredibly necessary to recuperate from the sensory and social stimuli of the outside world.¹⁰

While friendship and connection can be an important and valued part of life for many autistic individuals, those on the autism spectrum often find it helpful to socialize in different ways that may require less energy output than going to a party or socializing in person. Autistic individuals often prefer to maintain robust and long-term friendships via the internet, gaming, email or text, because other ways of connecting such as the phone, video chat, or meeting in person may be too taxing and require more energy or resources than one has to spare.

Other notable social differences in the autistic population may include literal, direct or “blunt” communication. Some may use scripting to ease their means of communication, or as a way to socialize or stim. Some autistic individuals may have difficulty reading non-verbal communication (body language, facial expressions), while others may be painfully sensitive and perceptive of small minutia of stimuli that no one else might notice. Individuals who are hypersensitive to the small changes in “vibe” and micro expressions of others might find social interactions overwhelming, as there may feel like a bombardment of information that then must be processed all at once.⁹

“The Double Empathy Problem,” coined by Damien E.M. Milton argues against autistic people having social “deficits,” and instead suggests that the autistic way of communicating is simply different than that of the neurotypical community.³ As neurotypical individuals tend to speak the same “language” as other neurotypical people, autistic individuals communicate effectively within the autistic community.⁴

Sensory Issues

Sensory processing differences are another common characteristic of the autistic population. Humans have eight physical senses. In addition to the more commonly referenced five senses, we also have the vestibular, proprioceptive, and interoceptive senses. According to the STAR Institute, the vestibular sense helps us to stay balanced, and sense movement and “orientation in space.”⁴ Our proprioceptive sense governs “position, location, orientation, and movement of the body muscles and joints.”⁴ And our interoceptive sense tells us what is going on in our bodies: If we are hungry, thirsty, or need to use the bathroom.

All of these senses are constantly working together to process the world around us, and each person has their own individual sensory profile, or way in which each of these senses processes information for that person.

Some autistic people are extremely sensitive to elements in the environment around them. An environment that is loud, bright, or crowded, like a supermarket or concert, can be painful and distressing for those with sensory sensitivities. Certain fabric textures, smells, or tastes might feel unbearable.

Other individuals may be hyposensitive to sensory stimuli, and seek out sensory input. Someone who may be hyposensitive to taste may prefer spicy or flavorful foods. Another who may be hyposensitive to visual input might prefer bright colors and environments that are visually complex. A person who seeks vestibular stimulation might find comfort in spinning around or being upside down. And an individual who has difficulties with interoception may not receive the signals from their body when they are thirsty until they are becoming dehydrated.

While some individuals are primarily either sensory seeking or sensory avoiding, many are a combination of both sensory seeking and avoiding. Also, the ability to process sensory input can vary based on the day, and what is happening in one’s life. So if a person is tired, stressed, understimulated or overstimulated, sensory differences can become even more pronounced.

Stimming

Technically described as a “repetitive patterns of behavior” by the DSM, these movements are much more commonly referred to as “stimming,” which is short for self-stimulatory behavior.

Because autistic individuals tend to experience differences in sensory processing, stimming is a way of managing sensory input to either avoid sensory overwhelm, or obtain the sensory input they need.² Stimming can look like rocking, flapping, or pacing, but can also include things like echolalia (repeating words or phrases), singing, or clapping. There are some forms of stimming that may be harmful, like head banging or hitting oneself, which can be redirected and replaced by other, more helpful stims. Otherwise, stimming is necessary for self-regulation and managing sensory differences in a world of complex stimuli, and an important element of autistic life.

Special Interests

As part of the DSM criteria, “restricted, repetitive…interests” are among the traits required for diagnosis.² This trait is more commonly referred to among the autistic community as “special interests.” For an autistic individual, a special interest can bring great joy, learning, and even a sense of community and connection. Special interest topics can include subjects like music, pop stars, theater, video games, technology, astronomy, trains, horses, a TV series, the work of a particular author, or psychology. Any topic can become a special interest, and an autistic individual might learn about their preferred subject in spectacular depth and detail, accumulating great knowledge and expertise.

Special interests not only bring great joy and energy to life, but they can also be the foundation of thriving careers. Therefore, encouraging autistic individuals to follow their interests and passions is helpful, not only in promoting long-term health and well-being, but also exciting and fulfilling career paths.

Rigidity & Routine

One trait common to the autistic experience is the presence of anxiety. For an autistic person, there can be a great deal of anxiety just from navigating the sensory stimuli, interactions, and tasks of everyday living.¹² Moving through a world that may feel too loud, too intense, or too unpredictable may generate tremendous anxiety for a person on the autism spectrum. So one way many autistic individuals manage and prevent anxiety is by creating routines and making life more predictable, or more within control.

Some individuals feel better when most of their days look generally the same—from eating the same foods every day, to wearing similar clothing, to structuring one’s days in the same way. Sameness, routine, and predictability can help alleviate anxiety symptoms and prevent distress that can lead to overload and meltdowns for an autistic person with anxiety or sensory issues.¹²

Meltdowns

Meltdowns occur when an autistic person becomes overwhelmed and overloaded with stimuli, or sensory input, beyond what the brain is able to process and cope with. As every autistic individual is unique, meltdowns can look different from one individual to another. For some, meltdowns might be very noticeable to an outside observer.

A meltdown for one person might look like loud vocalizations, self-harm or tearfulness. For another, the meltdown might resemble an internal implosion, indiscernible to an outside observer. Meltdowns can also look like rage or strong emotionality, or even laughing. When an autistic person has reached the point of meltdown, that means their brain is completely overwhelmed and overloaded and they are no longer in control. Meltdowns are often confused with “tantrums,” but they are in fact, completely different. Meltdowns are not “bad behavior,” but are medical, neurological events during which a person is in extreme distress.

To help a person during a meltdown, giving them space to disconnect from the stimuli of the environment can be essential. For some individuals, deep pressure, dim lighting, or soothing words can be helpful, but as every person is different, it is important to refrain from touching someone during a meltdown unless they specifically request assistance in the form of touch (hugs, firm pressure, or a weighted blanket).

Gifts of Autism

With autism comes a way of thinking and experiencing the world that is different from the neurotypical population. Those on the autism spectrum can excel at “thinking outside of the box,” and can offer a fresh perspective and insight which can be a great asset in many areas of life and work. Those on the autism spectrum can be gifted in the areas of music, art, science and technology. Heightened empathy, or what Dr. Tony Attwood identifies as “empathic attunement,” can be helpful traits in fields like nursing or psychology.⁹

What Causes Autism?

Autism is understood to have a substantial genetic component. Autism can be linked to certain genetic conditions like Fragile X or MECP2 Duplication, but can also occur without any identifiable associated genetic condition. Also, autism can commonly be found in siblings. If one child in a family is diagnosed with autism, more siblings are likely to be diagnosed as well.⁵ In 2020, a study conducted by Mt. Sinai in New York was able to identify 102 genes associated with an increased prevalence of autism.⁸

There is no evidence that vaccines cause autism. Although a 1998 paper by physician Andrew Wakefield suggested a link between autism and the MMR vaccine, the studies used in the paper were later “deemed fraudulent and data misrepresented.”⁷ The paper was discredited and Dr. Wakefield later lost his license to practice medicine. A 1999 study,¹³ as well as a large-scale study by¹¹ published in 2002, again found no causal link between the MMR vaccine and autism.⁷

Management Options for Autism

Because autism is not an illness, it does not necessarily require any treatment at all. Some individuals on the autism spectrum can thrive with no treatment or therapies. However, as many autistic individuals struggle with some common areas, targeting those particular challenges with an appropriate therapy can be helpful in empowering and equipping a person to better manage their daily lives.

How to Find the Right Help for Autism

When seeking help for any autism related challenges, note any specific difficulties that may be present. A person who may struggle with speech and communication could possibly benefit from speech therapy. Occupational therapy can help with challenges related to sensory integration or emotional regulation. And physical therapy can help with issues of strength, balance and coordination.

Speech & Communication

For individuals who may struggle with speech and communication, or may have comorbid apraxia, working with a speech-language pathologist (SLP) can be helpful to facilitate easier and clearer speech. As some autistic individuals are non-speaking, speech pathologists can also help a client learn and use alternative methods of communication such as sign language, use of an assistive communication device (AAC), picture communication system, or typing.

With communication being the ultimate goal, whatever form that may take, speech and language pathologists can help a person find a method of communication that is right for them.

Occupational Therapy

Occupational therapists can help identify sensory issues by looking at how a person processes stimuli via their 8 senses. An occupational therapist can be instrumental in identifying the unique sensory profile of an individual, and creating a sensory diet that will best meet their specific sensory needs. Occupational therapists can also help with challenges related to fine motor control (writing, use of eating utensils), emotional regulation, and activities of daily living.

Physical Therapy

Physical therapists can help identify and assist with challenges related to gross motor skills, balance, core strength, and posture. Physical therapists can also help a client improve coordination, and assist with learning to coordinate the complex movements needed for
activities like swimming or riding a bicycle.

Psychotherapy

Working with a psychotherapist can help to identify and address any issues of stress or anxiety, as well as other conditions which may commonly co-occur, such as autism and OCD. As alexithymia, or the difficulty identifying and expressing emotions, can be common to the autistic population, working with a psychotherapist can be helpful to better understand one’s emotional processes as well.

What to Look for in a Therapist for Autism Management

When looking for a therapist to manage any challenges related to autism, working with a therapist who truly understands the autistic experience is paramount. As the autistic community is immensely diverse, support needs can vary greatly from person to person, so it is advantageous to explore the specific needs and goals of the individual. It is important to work with a clinician who can understand both the strengths and challenges of the autistic person from a balanced perspective, as opposed to purely a deficit model.

Also important is working with a clinician who is well-informed about the many nuances of autistic presentation, and who understands autism beyond outdated stereotypes. Seek a clinician who is knowledgeable about sensory issues and how they regularly impact daily life. Also important is the understanding of challenges related to managing energy, anxiety, communication, and executive functioning common to the autistic experience. Therapists who are themselves on the autism spectrum are excellent resources, as they have an inside perspective.

The intended treatment outcome is not to cure autism, or to make autistic traits less apparent, but to help the individual be the happiest and healthiest person they can be. From managing sensory differences, to gaining greater insight into triggers and emotions, and managing anxiety, the goal of therapy is to support the individual, and to give the client tools to more effectively manage daily living in a way that works for them.

Medication

Medication can be a helpful tool if there is a comorbid condition like autism and a sleep disorder, ADHD, or anxiety. Comorbidities are common among the population, and some may benefit from medications to help manage their autism and anxiety or other co-occurring conditions.

Medications are prescribed by medical doctors like psychiatrists, neurologists and developmental pediatricians. They can also be prescribed by psychiatric nurse practitioners or physician assistants. Medication is generally most helpful when used in conjunction with other modalities like occupational therapy or psychotherapy.

How to Get Help for a Child on the Autism Spectrum

To seek help for a child on the autism spectrum, consider any areas where the child may be struggling, or where they could use additional support. Target those areas of challenge with a related therapy like speech therapy, occupational therapy, or physical therapy. Some kids with anxiety may benefit from play therapy or help identifying triggers and emotions. Art and music therapy can also help to enhance self-understanding and self-expression, and hippotherapy (using horse-riding during therapy) can help with core strength and balance. If the child may benefit from additional supports in school, seek creation and implementation of an Individualized Education Plan (IEP) or 504 Plan so that the child can receive the assistance and accommodations they need in the educational environment.

While helping kids manage their challenges, also celebrate what makes them their unique selves. Create an environment that is sensory friendly, and encourage helpful stimming and engagement with special interests to help the child self-regulate and find joy. Also, understand that autistic children may find delight in solitude and imaginative play on their own. Allow autistic children to engage with others, or to enjoy any much-needed solitude, in a way that works for them.

The goal of any therapy should never be to “cure” autism, or to try to make an autistic person appear more neurotypical, but to help the autistic individual thrive in their own unique way. Follow their lead, and offer them unconditional love and acceptance for who they are now, and for the autistic adults they will eventually become.