What 'High-Functioning' Autism Means?

High-functioning autism is sometimes used colloquially to describe autistic people who do not need much support to function in their daily lives. It often means that a person can speak, write, read, manage daily tasks, and live independently. It means that their traits and behaviors do not create too many disruptions in their relationships, occupation, or education.

However, it is crucial to recognize that the term "high-functioning autism" is not a recognized diagnosis or condition specifier. 

Why the Term 'High-Functioning' Is Problematic

While the term is sometimes used informally, it is considered inaccurate and inappropriate. Research suggests the term does not accurately reflect the challenges that autistic people deal with in their daily lives. This can lead to unrealistic expectations about people's social, academic, occupational, and self-care abilities.

A person is often described as "high-functioning" if they do not have an intellectual disability. However, evidence suggests that IQ and behaviors related to daily living are only weakly connected.

In reality, numerous factors affect a person's ability to function with minimal support, including communication, social, motor, sensory processing, and information-processing abilities. People may possess skills that allow them to read, write, and speak effectively but struggle more with other functional abilities, such as emotional or social skills.

Understanding Autism Spectrum Disorder

Autism spectrum disorder (ASD) is a neurodevelopmental condition marked by social skills, behavior, and sensory sensitivity not seen in neurotypical individuals.

The "Diagnostic and Statistical Manual of Mental Disorders, 5th Edition" (DSM-5) maintains five criteria for a diagnosis of autism:

1. Social difficulties may include "abnormal" approaches to conversations or social interaction or difficulty initiating or maintaining social interactions. It may also involve issues expressing and interpreting nonverbal communication, such as tone, body language, or eye contact. Also, autistic people may have difficulty "developing, maintaining, and understanding relationships."
2. Repetitive or fixated behaviors, interests, or activities: Repetitive movements or speech, such as "stimming" behavior or repeating words or phrases. Someone may experience difficulty with flexibility around routines or rituals or show intense fixation in some interests. Additional symptoms may include atypical responses to sensory experiences, such as a preference for deep pressure or an inability to tolerate physical touch.
3. Symptoms begin early in life though severity can increase over time as "social demands exceed limited capacities, or may be masked by learned strategies."
4. Symptoms cause difficulty in areas of functioning: For example, symptoms that interfere with school, work, and other interactions/environments.
5. Other diagnoses are not probable: Someone may also be diagnosed with autism if another diagnosis does not explain the above issues better.

The "severity" can be based on either the individual's social skills or patterns of behavior and is determined by the amount of support an individual needs. Per the DSM, an autistic individual's level of functioning is labeled as Level 1, Level 2, or Level 3. Level 1 is often described as the 'mildest,' while level 3 is described as more 'severe.'

Autism and Asperger's

In the past, people with what was then known as Asperger's syndrome may have been described as being "high-functioning."

Before the publication of the DSM-5, psychologists distinguished autism from Asperger's syndrome, and there is a long history of research surrounding ASD. However, psychologists disagreed on the difference between Asperger's syndrome and autism, and research showed that individuals' diagnoses depended more on which provider granted the diagnosis than on specific symptoms.

Although some individuals continue to prefer the diagnostic language around Asperger's, the term is generally considered problematic due to Hans Asperger's ties to eugenics in Nazi Germany.

What Does "High Functioning" Mean?

So, what does it mean if you are autistic and "high functioning?" It depends. Typically, someone diagnosed with ASD: Level 1 is considered "high functioning." However, someone's social skills might be Level 1, and their behavioral issues might be Level 2.

Factors that contribute to labeling an autistic person as "high-functioning" include how well they can hold a job, form and maintain relationships, communicate, and mask their autistic traits. Essentially, the better someone can blend in with a neurotypical society, the higher functioning they are. Because of this, many high-functioning autistic people do not get diagnosed until later in life.

Diagnosing High-Functioning Autism

Typically, a psychologist with specialized training in ASD diagnoses autism through a specialized evaluation. Some commonly used measures used to diagnose autism include:

• The Autism Diagnostic Observation Schedule (ADOS): The ADOS is sometimes referred to as the "gold standard" for autism assessment and includes a standardized assessment of an individual's social interactions and imaginative play in children to determine whether someone meets the criteria for autism spectrum disorder. There are sections of the ADOS that are specifically for children, but they can also sometimes be used in evaluating adults.
• The Autism Diagnostic Interview, Revised (ADI-R): The ADI-R is a structured interview used to assess autism in those aged four and older.
• The Autism Spectrum Rating Scale (ASRS): The ASRS uses observational data from guardians and teachers to determine whether an individual meets the diagnostic criteria for autism. It is used for those between the ages of one and a half and 18 years old.
  

Treatment for High-Functioning Autism

Treatment options for autism include occupational therapy, physical therapy, and talk therapy. Although Applied Behavior Analysis (ABA) is sometimes referred to as the "gold standard" of autism treatment, the autistic community has largely reported that the treatment is abusive.

Since approximately 70% of autistic people have at least one comorbid diagnosis, including attention-deficit/hyperactivity disorder (ADHD), anxiety, depression, bipolar, psychotic disorders, and suicidal behavior, an autistic individual might want a psychological evaluation to determine what other diagnoses they might have. This information helps determine the most appropriate course of treatment.

High-functioning autistic individuals are typically able to live independently but benefit from individual therapy to manage challenges from existing in a world with neurotypical expectations. If they have difficulty forming and maintaining relationships, they could participate in an age-appropriate social skills group.

How Language Contributes to Stigma

Much of the language around autism is focused on the deficits and struggles that autistic people might face, and deficit-based language has been shown to increase stigma. Autism is associated with different cognitive strengths, and research has shown that a strengths-based approach to treatment can be effective.

For example, although the DSM frames autistic people's social interaction style as a deficit, many autistic people can successfully mask it when interacting with neurotypical individuals, and most autistic people socialize well with other autistic people.

Addressing and reducing stigma is key in supporting and advocating for autistic individuals.

Peer Support for Autistic Individuals

Peer support and advocacy are key for autistic individuals. Those looking to connect with organizations run by and for autistic people can refer to the Autistic Women & Nonbinary Network and the Asperger/Autism Network.

These organizations include information about getting diagnosed, treatment options, advocacy, and social support for autistic people and their loved ones.

Takeaways

The challenges that people with autism face stem from difficulty in navigating a world that is built around neurotypical expectations. That's why it's important to remember that someone labeled as 'high functioning' still needs support. Their needs may be different, but they may still benefit from extra support with things like academics, self-care, emotional regulation, and social support.