Autism Spectrum Disorders (ASD)

Individuals with autism are a very heterogeneous group. The quote above reflects how there are many presentations of people with ASD, and we should not make generalizations. Just like people without a diagnosis of ASD, people with ASD are not a monolith; they have different features, personalities, likes, interests, behaviors, and preferences. In addition, people with ASD are found across the world, across all racialized and ethnic identities, cultural groups, with many different languages, gender identities and expression, economic experiences, and other social differences.

You may personally know someone with autism—you may work, go to school, have a friend, or have an acquaintance with autism. If you do not yet, you very likely will. As you probably know, each person has characteristics and presentations that contribute to who they are. Although we’ll be discussing common characteristics, teaching strategies, and other educational issues related to autism, generalizations about characteristics can be inaccurate or can mask uniqueness. Remember that no size fits all; throughout your life, you’ll interact with unique individuals with autism.

Before we begin, let’s talk about language and terminology. You may hear a lot of terms associated with autism. At present, the term autism spectrum disorders (or ASD) is used to replace such diagnoses as autism, classic autism, or Asperger’s. The new term ASD emphasizes that autism is a “spectrum” disorder, with a lot of variability in strengths, features, and support needs among people with this diagnosis.

It should also be noted that in addition to ASD, the autism community has adopted a term called neurodiversity. Although this has not yet been embraced by all professionals in practice, this described autism as a part of human variation. More importantly, people with and without ASD are a part of human experience, with no variation more valued than another (Bradshaw et al., 2021).

This lesson's readings and media will provide you with an overview of ASD. First you will read about recent changes made to the Diagnostic and Statistical Manual of Mental Disorders, or the DSM. The DSM is published by the American Psychiatric Association (APA) and is the primary manual used by clinicians to provide a formal diagnosis. The DSM outlines specific criteria needed to receive a diagnosis, provides labels or names for the diagnosis, and lists the numerical codes that are sometimes used by insurance companies to bill for services. Essentially, the DSM provides the standard guidelines for clinicians to use for a formal diagnosis. After you read about the DSM, the lesson will cover potential causes of ASD, characteristics of the population with ASD, and instruments used to diagnose ASD. Finally, you'll look at the general parts of an individualized education plan (IEP) and how one might write a goal for a person with ASD. Let’s start with the DSM.

The DSM-V

The most recent revision to the DSM, the DSM-V, was published in 2013, although updates known as text revisions are continuous each year (see the most current DSM-V-TR). This manual covers many different disability and diagnostic categories (such as intellectual disabilities, attention-deficit disorder, and other medical conditions). Most of the diagnostic categories have remained unchanged. However, in the recent edition of the DSM (V), there have been major changes to how ASD is diagnosed. Why was the DSM changed? Well, clinicians wanted to make the ASD diagnosis more specific to provide greater sensitivity, so that true cases would be identified. They also wanted the criteria to be more reliable (so that clinicians would agree on who had ASD), to be valid (accurate), and to really reflect that ASD can be identified through a set of behaviors. As seen in the DSM-V, ASD is characterized not by separate symptoms or isolated presentations, but by a particular set of features or behaviors that manifest together.

It is important to know that there are many different models, or ways of thinking about disability. Many of these are based on the way disability has been perceived throughout history and different contexts, Thes models have influenced the way people perceived and responded to people with disabilities and have also influenced practices. Many of the terminologies you encounter follow a medical model of disability. The medical model of disability often describes a set of concerns within the person with the disability that need to be remedied, which are often referred to as deficits. Many disability and autistic advocates, however, adhere to the social model of disability, which perceives disability as part of one’s identity and part of the human experience. Although they recognize how some things should be alleviated, such as chronic pain, they also locate the “deficit” in the environments, which often don’t support the full inclusion of people with disabilities. For more on this topic, you can view this Social Model of Disability video. Here’s also a short paper by Dr. Rhoda Okin in the American Psychological Association (APA) that describes three models. These are important foundations to know as you encounter terms like deficits and recognize how this may impact people’s perceptions.

The changes in the DSM are relatively recent; in fact, they were the first substantial changes to the manual in 13 years. As you can imagine, the systematic use of the DSM-V will take time. You may continue to hear terms that are no longer in the DSM-V (such as Asperger’s). However, for accuracy, we will be using only the new terminology and criteria. Below, you will find two charts; one outlines the changes made to the ASD diagnosis from the DSM-IV to the DSM-V. If you’ve had contact with individuals having ASD, you’ve likely seen a great deal of variability in how well each person may function in their environments. As outlined in the diagnostic criteria, there are two central areas for support: 1) social communication, and 2) behaviors, which may include restricted interests and/or repetitive behaviors. Recently added to the latest version of the DSM is a rating (from one to three) of the severity of the deficit areas. For example, an individual may be diagnosed as Level 3 in the area of social communication, but have less-severe symptoms of repetitive behaviors, which need only a moderate level of support (Level 2). Currently, there are no specific guidelines on how to assign a severity level.

	DSM-IV	DSM-V
Definition	Autism and related disorders were defined as "pervasive developmental disorders" (PDDs).	The term PDDs is now replaced with the term autism spectrum disorders (ASDs). These are included in the broader category of neurodevelopmental disorders.
ASD subtypes	The category of PDDs included five different subtypes of autism: autistic disorder, Asperger’s disorder, childhood disintegrative disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Rett syndrome.	The DSM-5 has replaced four of these subtypes (autistic disorder, Asperger’s disorder, childhood disintegrative disorder, and PDD-NOS) with one central diagnosis, autism spectrum disorder (ASD). Rett syndrome is no longer included in the DSM.  Rather than making a distinction among different subtypes, the DSM-5 diagnostic definition of ASD specifies three levels of symptom severity and the intensity of the support needed.
Clinical features	ASD was characterized by three core symptoms: impaired social reciprocity, impaired language/communication, and restricted and repetitive pattern of interests/activities.	In the DSM-5, there are now just two symptom categories: social communication deficits (combining social and communication problems) and restricted/repetitive behaviors.
Onset	Onset before 36 months of age	Now there is more of an open definition: “Symptoms must be present in early childhood, but may not become fully manifest until social demands exceed limited capacities.”

Adapted from Diagnostic Criteria for Autism Under the DSM-5, by G. Vivanti, O. Tennison, and D. Pagetti Vivanti, 2016. In Autism Europe: About Autism. 

The second chart shows the recently added severity scale, which describes the impact of ASD on everyday function. 

Severity Levels for Autism Spectrum Disorder

Severity level	Social communication	Restricted, repetitive behaviors
Level 3 "Requiring very substantial support”	Severe deficits in verbal and nonverbal social-communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others. For example, a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only and responds to only very direct social approaches.	Inflexibility of behavior, extreme difficulty coping with change, or other restricted/repetitive behaviors markedly interfere with functioning in all spheres. Great distress/difficulty changing focus or action.
Level 2 "Requiring substantial support”	Marked deficits in verbal and nonverbal social-communication skills, social impairments apparent even with supports in place, limited initiation of social interactions, and reduced or abnormal responses to social overtures from others. For example, a person who speaks simple sentences, whose interaction is limited to narrow special interests, and who has markedly odd nonverbal communication.	Inflexibility of behavior, difficulty coping with change, or other restricted/repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress and/or difficulty changing focus or action.
Level 1 "Requiring support”	Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions and clear examples of atypical or unsuccessful response to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to-and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.	Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.

Adapted from DSM-5 Diagnostic Criteria, by Autism Speaks, Inc., 2016. In Autism Speaks: What Is Autism?

Check out this Policy Analysis on the Revised Autism Criteria in the DSM-5 brief that summarizes the changes to the DSM-V related to ASD and its impact of service delivery, sponsored by the ASAN, the Advocacy Self-Advocacy Network.

 

Impact of Language and Terminology

Before we continue, it’s also important to recognize how autistic people, as well as some of their providers, family members, and allies think about the terminology and ranking of their functionality. Bradshaw and colleagues (2021) explained how because of the variation across people with ASD, the language we use, “should focus on specific support needs rather than ‘severity’” (p. 105).  These researchers also emphasized how although ASD is now understood as a spectrum, the use of “low functioning” and “high functioning” often implies a very linear description of autism, which is not representative of people with ASD:

“Classifying Autistic people into levels and using high- and low-functioning labels fails to capture the critical fact that autism is not static, but rather fluid in nature (Figure 1). The skills and capabilities of an Autistic person will develop throughout their lifespan” (Bradshaw et al. 2021, p. 105).

Here is a model proposed by these researchers in this paper, which embraces a nonlinear way of thinking about ASD: