The current diagnostic manual used by mental health professionals from around the world to identify Autism Spectrum Disorder (ASD) outlines three levels of support needed by individuals with Autism Spectrum Disorder. These categories for Autism Spectrum Disorder were introduced in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) by the American Psychiatric Association in 2013 and mark a significant shift from earlier terminology and approaches to categorizing Autism Spectrum Disorder.
Understanding the Support-based Framework
As the diagnostic manual used by mental health professionals all around the world recognizes, there are three different levels of Autism Spectrum Disorder. All of these levels describe people with Autism who are different, but who need different amounts of support in their daily lives.
This is important to remember when looking at the different behaviors of individuals with Autism. Two people can exhibit the same behaviors but have a lot different needs.
The manual describes three levels of autism Spectrum Disorder (ASD), or support needed for individuals with autism Spectrum Disorder. The levels of autism Spectrum Disorder describe two primary domains of deficit for individuals with autism Spectrum Disorder: Social Communication and Restricted, Repetitive behaviors, interests and activities. The level of autism Spectrum Disorder best representing an individual’s needs is determined by how these two areas of deficit impact his/her or their family’s life.
The three levels of autism spectrum disorder are determined by two domains of human behavior or experience: social communication and restricted/repetitive behaviors, interests, or activities. The degree to which an individual requires support is dependent upon how his/her/their social communication and restricted/repetitive behaviors are impacted by daily situations in which he/she/she/he needs assistance.
Level 1: Requiring Support
An individual with Level 1 autism is able to function independently in varying situations and may have challenges with social interactions and with dealing with unexpected changes in plans or routines. An individual at Level 1 with autism has difficulties with social communication including challenges with understanding social cues and developing and maintaining relationships with individuals of their same age. An individual at Level 1 with autism may have challenges initiating and maintaining conversations and responding to questions in an odd or inappropriate manner. In the workplace or in school, an individual with autism at Level 1 may need support with social interactions with co-workers and with teachers and may need to have very explicit instructions regarding the social expectations for certain situations and how to behave in these situations.
Individuals who have restricted and repetitive patterns of behavior and interests that are affected at a moderate level (in daily life) will have more obvious or noticeable behaviors that have more of an impact on their life in various ways. A person with Level 1 autism may have a very rigid morning routine that he or she needs to do in exact order in order to go to school or work and become flustered or upset if someone tries to change anything in the routine. The person’s intense or highly focused interest(s) will likely be of great focus and conversation for long periods of time and become even more pronounced when given permission to pursue his or her interest(s).
Support for individuals with Level 1 autism is needed so that mental health professionals can better understand that individual and work with them to help reach their full potential. A variety of supports are available for individuals with Level 1 autism, including: Social Skills Training and counseling or therapy to cope with stress and anxiety, and work place accommodations to assist in performing job functions. Some individuals with autism have intense or highly focused interests. They may want or need to spend a lot of time exploring or learning about these interests, during their free time. Often individuals with autism do not receive a diagnosis until they are adults because they have learned to mask their autism in order to interact in society. However, as adults with autism, they can experience burnout as they try to continue to interact in a society that is not always easily navigated by individuals with autism.
Level 2: Requiring Substantial Support
An individual with Level 2 autism may still need support with social communication, adapting to change, and completing tasks or functions with support. These supports can be apparent even when an individual with Level 2 autism is receiving support. Individuals with Level 2 autism speak using very simple language, complete very short sentences, and may struggle to complete conversations. They may not be able to identify and use nonverbal cues (e.g., making and interpreting eye contact), and may not be able to interpret social situations (e.g., determining the purpose of a social gathering). Individuals with autism may exhibit restricted and repetitive behaviors, such as having a very rigid morning routine that must be followed exactly in order to avoid extreme distress when the routine is disrupted. The individual with Level 2 autism may have very intense or highly specialized interests and spend a great deal of time and effort talking about his/her interest(s).
Some common behaviors of individuals with a Level 2 of autism are that they have social communication deficits even with support, they have restricted and repetitive behaviors that interfere with their daily functioning and require substantial support. For example, an individual with a Level 2 of autism may speak in simple sentences or short sentences with support. He or she may be able to complete conversations with support from another individual, for example. This individual may be able to start a conversation and even stay on topic with support from another individual. The individual with a Level 2 of autism may be able to complete interactions with his or her peers and may even have interests that he or she would like to share with his or her peers. However, he or she may not be able to read social cues. For example, if someone with a Level 2 of autism makes friends with someone, he or she may not know how to act in social situations. He or she may not know how to behave when he or she is with his or her peers. For example, someone with a Level 2 of autism may not know how to behave in certain social situations. Individuals with autism can complete daily living activities with support. This support can be with organization of tasks for work or school, completion of daily tasks, following a daily schedule, and following of other daily tasks to help an individual with autism complete daily living tasks. There are many daily living activities that an individual with autism may need support with. Some of these tasks and activities are very difficult for individuals with autism to complete on their own. The support for these tasks can come from a number of different individuals, including family members, autism support workers, and others who provide support to individuals with autism. The support can also come from other individuals who help an individual with autism to complete daily tasks at work or at school. For example, an
Some individuals with autism also require support with daily living, or Independent Living Skills (ILS). For example, an individual with autism or their family may need assistance with organization for daily tasks, such as planning for meals, paying bills, going shopping, using community resources and services, etc. Individuals with Level 2 autism require substantial support. They are able to participate meaningfully in school, work, and community activities when provided with the necessary scaffolding to do so. However, the support required for these individuals is substantial. Finding and securing the support required for these individuals is not easy for many individuals and their families.
Level 3: Requiring Very Substantial Support
Level 3 autism very, very substantial support required. An individual with Level 3 autism may have limited communication using verbal language and when they do communicate verbally, the communication is likely to be of a very restricted nature and to relate to their immediate needs. This individual is unlikely to engage in any form of social interaction with others and will require support in order to interact with others.
The degree to which restricted and repetitive behaviors interfere with daily living can vary; for individuals with Level 3 autism, the impact of such behaviors is very severe. In all situations, the repetitive behaviors of individuals with Level 3 autism interfere with daily living to a very severe extent. They may have very limited ability to make changes and may require very long preparation periods prior to transitions
The Restricted and Repetitive Behaviors are a primary area of concern for a person with Level 3 autism. These behaviors can be very intense and will often dominate the person’s life. These behaviors can be so intense that they cause a lot of distress to the person when they are interrupted and the person may take a long time to recover from the interruption to their routine. Also, the person with Level 3 autism will experience a lot of anxiety for a long time due to unexpected change.
Very substantial support refers to support of most daily living needs. Most individuals with Level 3 autism require support with personal care, safety and other daily living needs. A constant support person is usually required to accompany the individual to various environments (home, school, community. With very substantial support, individuals can participate in meaningful ways and learn in many environments. However, families report that accessing quality support is very difficult.
Beyond the Numbers
These levels can change over time for individuals growing up and learning more about themselves, for individuals receiving intervention and support, and for individuals facing life circumstances that bring out support needs not typically exhibited by the individual. For example, a person classified as having Level 1 autism may require the support of a Level 2 autism individual in the face of major changes or transitions in their life.
It is also important to note that every individual with autism is very different and two people of the same autism level will have very different needs, and different strengths and challenges. A full evaluation of an individual with autism will therefore seek to identify their full needs and strengths and not just their autism level.
For parents and carers of children on the autism spectrum the levels provide a structure or framework for accessing support as well as having realistic expectations of their child’s learning and development. There is however more to Autism Spectrum Disorder than the numbers.
