Over the years, a number of broad terms have been used to describe individuals with autism spectrum disorders (ASD). In general, these terms have focused on levels of functioning, intelligence, severity, and verbalization.
While these terms are widely used in the research literature as well as in the autism community, many people have raised concerns about their simplistic nature and their reliance on ill-defined criteria. In this editorial, I suggest a simpler and more accurate system for classifying individuals with ASD.
A brief history of ASD terminology
Initially, autism was referred to as infantile autism or Kanner’s syndrome. Later, terms such as classical autism and autistic-like were used. The former term described individuals who exhibited most of the symptoms and behaviors described in Kanner’s 1943 seminal paper1, while the latter described individuals who exhibited fewer of them2.
Soon after Lorna Wing introduced the autism community to a little-known article published in 1944 by Hans Asperger3, she helped to popularize the term autism spectrum disorder, or ASD. Much later, in 1994, the term Asperger syndrome was officially recognized in the Diagnostic and Statistical Manual (DSM), version 44; however, this diagnosis was removed 10 years later in the DSM, version 55. It has been nearly a decade since this change was made, and the term Asperger syndrome is still used today among researchers, clinicians, and the general population6-8.
Recently, a consensus report, sponsored by the Lancet journal, introduced the category profound autism9. Soon after the introduction of this term, many in the autism community raised serious concerns about the assumptions and applicability of this new “administrative term” to describe a subpopulation of individuals on the spectrum. The term refers to those with autism who suffer from “intellectual and language impairment,” require 24-hour support, and are unable to take care of many, if not most, of their basic needs. These individuals may also have additional challenges such as “self-injury, aggression, and epilepsy.”
Although at first glance the term profound autism may seem logical, there are many individuals with ASD whose condition is quite pronounced even though they have little or no impairment in intelligence and language. For example, these individuals may suffer from extreme anxiety, depression, and/or hyper-reactivity to sensory stimuli, making it difficult or impossible for them to live independently. Thus, a more accurate terminology is needed to describe individuals with ASD and identify the services they need.
Why not focus on level of independence?
One simple and straightforward way to classify individuals with ASD is with respect to their level of independence. In other words, how capable are they of taking care of their basic needs—for instance, preparing food, obtaining water, dressing in proper clothing, having a structured sleep schedule, and finding and maintaining adequate shelter?
Here are some examples of classifying individuals based on their level of independence:
- Individuals who are independent can live on their own and need minimal financial support. However, they may have mild or even severe challenges such as sensory sensitivities, sleep disturbances, anxiety, or depression. Consequently, they may seek help occasionally from family members and professionals.
- Individuals who live semi-independently may need some supervision and/or significant financial support and may face challenging issues occasionally or on a near-daily basis. However, they will not be solely reliant on care and support from others.
- Individuals who are dependent will need a great deal of support and care from others on a constant or near-constant basis.
The term levels of independence avoids the shortcomings of other popular terms that focus on functioning, intelligence, severity, and verbalization. These terms frequently fail to accurately address the true needs of individuals with ASD. For example, an individual who has limited verbal skills and occasionally engages in self-harming behavior such as hand-biting may still be able to live with minimal or no support from family members and government services. In contrast, another individual may have good communication skills but suffer from high anxiety, depression, and self-harming behavior. This person may need a great deal of support—especially in light of the high suicide rate among individuals with autism10—and may need to live in a dependent setting.
The current version of the DSM, version 55, does include severity levels in relation to needed support. These include Level I, “Requiring support;” Level II, “Requiring substantial support;” and Level III, “Requiring very substantial support.” These levels are based primarily on individuals’ social-communicative abilities in addition to their restricted, repetitive behaviors. However, as noted above, many individuals may still need a great deal of support even though they have reasonable social-communication skills and little or no repetitive, restrictive behaviors.
Also, it is important to note that one’s level of independence is context-related. For example, an individual may be able to live completely independently but be unable to afford purchasing a house or even paying rent because of the cost of living in his or her community.
Some people have argued that individuals with ASD should not be classified and state that “labels are for cans and not for people.” However, as pointed out by Lord et al. (2022)9, categorization can be helpful in determining appropriate services. For example, professional training programs, such as those for special education teachers or residential caregivers, typically focus on helping a specific subset of the autism spectrum: individuals with challenging behaviors, little or no speech, and difficulties with adaptive living skills.
Categorization is also essential for planning purposes. Knowing an individual’s level of independence will assist policymakers, school officials, and family members in estimating the financial costs for optimal care now and in the future.
Moreover, while many other terms rely on criteria that can be difficult to quantify, it is possible to objectively determine a person’s level of independence. Factors such as challenging behaviors, daily adaptive skills, and physical and mental health issues can be quantified with respect to frequency, duration, and severity. This information can then be analyzed in relation to the amount of care and financial support required by an individual. Consequently, we can accurately project the level of independence for each person.
Thus, I suggest that we entertain the possibility of using the term levels of independence to classify individuals with ASD. This term makes intuitive sense, is easily understandable, provides a general sense of the needed guidance and care for each individual, and is accepted by most stakeholders in the community.
References are available online. To view the references, visit www.ARRIReferences.org.
Stephen M. Edelson, Ph.D.
Executive Director, Autism Research Institute
This editorial originally appeared in Autism Research Review International, Vol. 36, No. 2, 2022