SPLED461:
Lesson 1: Overview of Autism Spectrum Disorders
Introduction and Objectives
To complete this lesson, please do the following things:
- Read the textbook (Chapter 1).
- Read all content provided in this lesson.
- Complete all associated self-check activities, discussions, and assignments.
Lesson 1 Objectives
- At the end of this lesson, you should be able to do the following things specified in the textbook:
- Describe the range of presentations and features among individuals with autism spectrum disorders.
- Discuss the importance of language and terminology when it comes to ASD.
- Explain how autism spectrum disorders are identified and diagnosed.
- Identify the changes in the definition and prevalence of autism spectrum disorders.
- Discuss the controversies around causal theories associated with autism. Describe common myths and assumptions about ASD.
- Describe instructional planning for students with autism.
Autism Spectrum Disorders (ASD)
If you’ve met one person with autism, you’ve met one person with autism.
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.
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DSM-IV |
DSM-V |
|---|---|---|
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Definition |
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ASD subtypes |
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Clinical features |
ASD was characterized by three core symptoms:
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In the DSM-5, there are now just two symptom categories:
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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.
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Severity level |
Social communication |
Restricted, repetitive behaviors |
|---|---|---|
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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. |
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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. |
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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:
Diagnosing Autism Spectrum Disorders: Challenges and Considerations
"I am different, not less."
Making an accurate diagnosis of ASD can be challenging. Often, many individuals are involved in the diagnostic process, including physicians, psychologists, teachers, parents, and sometimes the individuals with ASD themselves. A variety of instruments can be used to aid in diagnosis. Typically, instruments called screeners are used initially to see if an issue does indeed exist. Screeners are often given to parents and teachers to begin the diagnostic process. If the child does show characteristics of ASD, a formal diagnosis can begin. The physician or parent can contact a psychologist (privately or in the school in which the child is enrolled) and make a formal request for an evaluation. Whoever conducts the evaluation will likely use the DSM-V to make a diagnosis. Once a formal diagnosis of ASD is given, the child can begin to receive services.
"We need to embrace those who are different, and the bullies need to be the ones who get off the bus.”
Missing the Diagnosis
One of the other challenges with diagnosing ASD relates to 1) stereotypes, biases, and perceptions, as well as 2) the manner in which the assessment and screeners were created. The article by Bradshaw and colleagues (2021) also describes how despite so much improved knowledge about ASD, a great deal of misinformation and stereotyping remains. Because of this stereotyping, some people may miss the ASD diagnosis.
Girls and ASD
Despite the common perception that the greater prevalence of ASD in boys rather than girls is due to some biological difference, research has revealed that girls may be underdiagnosed with ASD. This may be due to two phenomena. One is that most of the ASD assessments and screeners were created based on boys and children without ASD. This may misrepresent the range of presentations among children with ASD (e.g., preferences, behaviors, dispositions). The second issue relates to a phenomenon called masking or camouflaging. Masking and camouflaging relate to the person’s hiding of their presentations, support needs, and behaviors associated with ASD to appear as a person without ASD. Research has supported that girls may in fact engage in this behavior, which leads to their underdiagnoses.
Check out this TikTok from Paige Layle who talked about masking in girls and how this relates to the low-functioning/high-functioning presumption.
ASD and the Black Community: Racial and Ethnic Inequities
Another source of missed diagnosis is due to racial and ethnic inequities in assessment, screening, and access to care. Despite how rates of ASD identification have increased, research has shown how Black children with ASD continue to be underdiagnosed for ASD, leading to delays in services and interventions. Much of these relates to racialized perceptions and stereotypes held by practitioners who are conducting assessments, which impact children and their families.
In a research study on parents’ racialized experiences by Culver and colleagues (2024), one mother, Deborah, described what she was told by her child’s provider, “Each time when I requested autism testing, I was told that he didn’t look like he had autism and so they didn’t see it as being necessary” (p. 5).
For this reason, providers need to have cultural competence and engage in self-reflection to assess their own perceptions, assumptions, or lack of familiarity with the range of presentations of ASD across social identities. For more information on this topic, check out this resource from the Child Mind Institute which describes some of the issues and the implications.
Self Check Activity 1
Causes of Autism Spectrum Disorders
Historical Context
Let's go back to the previous discussion on the medical model of disability. People with ASD seemed to have been represented in the medical literature since the late 19th century, although this was often associated with mental illness. In the 1960s, a psychologist named Bruno Bettelheim did quite a bit of damage to societal perceptions about ASD by suggesting it was caused by “refrigerator mothers.” The mothers of children with ASD were characterized as cold and distant--but only the mothers! Mothers were also often stereotyped as being highly educated and more career oriented than other mothers. This theory did a lot of damage by blaming parents. Sometimes, you will still hear today how poor parenting, or a cold mother is the cause of a child having ASD, even though the theory has been soundly disproven.
Genetics
As your text states, research clearly has indicated that genetics may influence the likelihood of developing ASD. Unfortunately, we still do not know the extent of the relationship or the exact gene(s) that may be causing ASD. However, we do know that siblings have a greater risk of developing ASD. This is particularly true if we look at twins; if one twin has autism, there is a 90% chance that the other will as well. This provides a very strong indication of a genetic link, since identical twins are so similar. We also find that, if we look back in time, very often, a child who has been diagnosed with ASD may have a family member with some characteristics, even if that family member did not receive a formal diagnosis of ASD. So, we're seeing a strong genetic link occurring, but at this point in time, we still cannot pinpoint the exact gene(s).
This does have important implications, however. We know this comes under controversy when we consider that the possibility of identifying genetic markers for ASD may subject children (and their families) to selective termination, as has happened for children with Down syndrome and other disabilities with a genetic profile. Many autistic self-advocates and their parents have expressed concerns about this.
Role of the Environment
Although genetics plays a part in the development of ASD, it is generally acknowledged that genetic makeup alone does not account for all incidences. Many believe that the environment may also play a role. Environmental factors can include such toxins as pesticides or household cleaning agents, though the role of toxins still is widely debated. In fact, there still is controversy about whether the mercury in vaccines (now absent) causes ASD. Despite resounding evidence to the contrary, the theory of this environmental toxin continues to this day. Because environmental factors can refer to anything other than changes in a gene’s DNA, environmental risk factors for ASD may also include things like parental age at conception, maternal nutrition, infection during pregnancy, and prematurity. See this resource which discusses some of the controversies around ASD causality, which some people (parents, professionals, and even organizational leaders) still believe. Consider how this may influence people’s decision-making (e.g., gluten diets) and people’s perceptions about other families’ decision-making.
Language and Speech Delays and Differences
Not all children with ASD will display speech and language delays and differences. Speech and language expression in children with ASD will vary by age, by individual, and sometimes by context. Some children with ASD may not use speech, also referred to as nonspeaking, while others may use extensive vocabularies, discussing topics in great detail. Some children with ASD may display echolalia (sometimes referred to as scripting), in which they repeat words or phrases rather than engage in conversation you might engage in with someone without ASD. Echolalia can be immediate or delayed. An example of immediate echolalia would be when I say, "Good morning," and you say, "Good morning." I say, "How are you?" and you say, "How are you?" With delayed echolalia, the child can sometimes repeat a phrase verbatim that occurred some time ago. Some children, for example, can watch a movie, and can give you the entire script a few hours or even days later.
Additionally, the individual with ASD may have limited or delayed speech, such as single-word utterances or approximations of words. For example, instead of saying “ball,” the child says “ba.” The limited or delayed speech might mean that the individual with ASD has the foundations for speech but may have difficulty with forms of language expression. For example, their prepositions or use of pronouns might be different. You might also see individuals with ASD who have do not use speech at all. It is important to note that speech and language expression are just one form of communication. People with ASD may use a variety of nonspeaking communication, such as gesturing, facial expressions, pointing, and other forms of self-expression. Just because a person is not speaking does not mean they are not communicating, nor does it mean they do not have a great deal to express!
In addition, the child, youth, or adult with ASD might be using other forms of communication, such as augmentative and alternative communication (AAC). For example, they might be using sign language (e.g. ASL), a communication board with pictures, or a voice-output electronic system for communication.
Some individuals with ASD might have difficulty with what we call pragmatics. This means they might not understand some social norms related to the language of that particular context and culture. It is important to remember that many elements of a language system are culture-bound, which means what may be a common expression or familiar to one may not be familiar to everyone else. In addition, some things may be related to a particular geographical context. One example is how people with ASD may not be able to detect or interpret the meaning behind sarcasm, such as someone saying, "Oh sure, I’d love to do that!" This may present a challenge for people with ASD, who may not interpret expressions outside of their literal meaning, or even use this form of expression within their culture.
Some individuals with ASD may also use language in ways that may not reflect particular social norms that are more nuanced. Some examples may be using formal words when it is expected that one might use informal expressions or using unique intonations and emphases. These conversational differences vary by individual and context.
One common language difference among some people with ASD is the inability to interpret idioms. Idioms are expressions or figures of speech that convey a social meaning beyond their literal meaning. These often vary across global contexts, parts of the U.S., and even different areas within the same state. Idioms, such as the ones in the quote bubbles above, can be very challenging for some individuals with ASD to understand and we should be mindful of this in our communications. For example, someone might think it’s literally raining cats and dogs!
Some—not all-- individuals with ASD may also have difficulty understanding nonverbal communication, such as facial expressions, gestures, and/or physical indicators of someone’s comfort level (e.g., sound or proximity). For example, some individuals with ASD might not interpret someone stepping back as a sign that they may be standing too close for the person’s comfort. Some people with ASD may also present with a very flat affect. For example, they might not display facial expressions in response to someone telling a very animated story as someone might not expect. This should not be misinterpreted, however. This may not mean that they are not interested or engaged. We don’t always think of nonverbal communication, but they can be very important in conveying a message.
While some of the differences in communication styles (e.g., nonverbal communication) may be perceived as “deficits” many autistic people and their allies perceive these as differences, or preferred modes of communication. This is another way of looking at these differences. According to Embrace Autism, we can also perceive this as a mismatch in what we might expect:
Autistics use and value different interaction styles compared to neurotypicals. While the diagnostic criteria have identified this as a deficit in social communication, when viewed from a less neurotypical-centric lens, this deficit appears to be more of a difference or a mismatch in communication styles.
Lastly, people with ASD might have difficulty processing language when the environment has too many distractions or is overstimulating. Some examples may be a noisy environment or an environment with a lot of stimuli (which can range from a cafeteria or classroom with a lot of people talking at once, or a light bulb that needs to be changed that is flickering).
Now that you have read about speech and language difficulties that may be related to ASD, watch the following videos to get an idea of what these might look like in action.
Delayed Echolalia
In the first video, you will see an example of delayed echolalia. This young man is using what we call scripted dialogue. He's very interested in Tigger from Winnie the Pooh and uses exact lines from the movie. You’ll see that he is trying to get his mother involved in the dialogue because he wants her to recite the phrases with him.
Augmentative/Alternative Communication (AAC)
In this clip, you will see a boy named Timmy using augmentative/alternative communication (AAC). He's touching a screen that has a symbol on it. Once the symbol is pressed, there is voice output. Timmy has some behavior problems, but his communication device serves to decrease the inappropriate behaviors by allowing him to communicate more effectively.
Picture Exchange Communication System (PECS)
In this clip, you will see Andy, who is 10 years old and has cerebral palsy and ASD. He is nonverbal and uses AAC. He is learning how to use a picture exchange communication system (PECS) to communicate with people who do not know sign language. When using a PECS, he selects the picture icons, places them on the strip at the bottom of the binder, pulls off the message, and hands it to the person to indicate what he or she wants/needs.
Social Differences
Next, your text discusses social differences related to ASD. Some individuals with ASD may have difficulty being able to take the perspective of someone else and misread emotions, or cues. Much like the Greek root word auto, which relates to self, individuals with ASD might not understand what others are thinking or perceiving or that their perceptions might differ from others' perspectives. For example, for some people, if they're frustrated with something, they might assume that everyone else is frustrated with it as well. Likewise, some people with ASD who may feel okay with things might assume everyone else is as well.
This is not the only perspective, however. More recent research has highlighted the problem of double empathy. Double empathy considers the issue between the lack of understanding social interactions from the person with autism as well as the neurotypical individual (DeThorne, 2020). In the book The Reason I Jump by 13-year-old autistic author Naoki Higashida, he describes so vividly, “For people with autism, what we’re anxious about is that we’re causing trouble for the rest of you, or even getting on your nerves. This is why it’s hard for us to stay around other people. This is why we often end up being left on our own.” There is often more than we assume.
Joint Attention
Along with challenges in taking the perspective of another, another social challenge people with ASD may experience liesin joint attention. Joint attention is the ability to share an experience. For example, as you watch TV, you might say to your friend across the room, “Oh that's funny—look at that!” You may look at the other person, they look and laugh along as well. You have both just jointly shared an experience.
Below is a video segment related to joint attention. This is anl experiment that highlights the concept of joint attention. The researcher has three groups of children: individuals who are neurotypical, individuals who have intellectual disabilities (ID), and individuals who have ASD. The researchers are examining the children's reactions to various situations, such as someone getting hurt or being scared. As you'll see, the individuals with ASD don't always pay attention to others, don't always look or share the experience, and don't always understand others' points of view. It's really intriguing in this clip to watch the child with the ID. At one point, he just gets up and fixes the problem for the group, saying, "All gone." I like the way he thinks!
There also may be deficits or differences in the play of children with ASD. For example, you might observe more instances of parallel play (side by side but not together). Typically, developing young children will engage in parallel play, but eventually they'll move to cooperative play, in which they engage with each other. You see less cooperative play in children with ASD. This, of course, goes hand in hand with the issues of joint attention just discussed. There is a lot less sharing of experiences with others.
Individuals with ASD can also display social differences that are quite subtle in nature. For example, a common issue is that of personal space, with people with ASD often standing too close to another person. A good example of this can be seen in the Seinfeld episode about the “close talker.” If you stand too close to someone's face when they're talking, it can be very disconcerting. They might step back as a natural reaction. The person with ASD, though, will sometimes step up a little bit more; he or she might not understand the parameters of personal space.
Also, individuals with ASD often lack eye contact; they might not look at you when you speak. This can also be very disconcerting. Of course, lack of eye contact varies with culture, but, in the United States, not looking someone in the eyes while he or she is speaking can make you appear untruthful or uninterested in what is being said. Additionally, some individuals with ASD may appear uninterested or self-centered, wanting to talk only about their topic of choice. Another social difference is the inability to start a conversation or maintain it. For example, if you say, “How are you?” most people will say, “Fine.” You might continue and say, “What did you do last night?” Typically, the person you ask will detail the night’s activities. If you're engaging with a person with ASD, though, the conversation may just stop. The person with ASD may be unable to maintain an ongoing conversation or to engage in the typical back-and-forth exchange we have when we talk with others.
Understanding the Important Role of Culture
There also may be differences in the play of children with ASD. For example, you might observe more instances of parallel play (side by side but not together). Neurotypical young children (without ASD) usually engage in parallel play, eventually moving to cooperative play, in which they engage with each other. You may observe fewer instances of cooperative play in children with ASD. This is very much related to the issue of joint attention just discussed. There may be less sharing of experiences among people with ASD with others. This, however, is highly dependent upon social and cultural norms, as expectations, types of play, and settings may vary.
Individuals with ASD can also display social differences that may be obvious or quite subtle in nature. For example, a common issue is that of personal space, where people with ASD may sometimes stand too close to another person. This may be uncomfortable for some people, depending on cultural norms, which vary across different contexts. Some people might step back as a natural reaction to a person with ASD who is standing too close. In response, the person with ASD may even step in a bit closer, as they may not understand the cues or even the expectation for personal space.
One common criterion in identifying ASD is the lack of eye contact, where people with ASD might not look at you when you are speaking. Again, the lack of eye contact varies with culture. Check out this video by self-advocate and autistic mother, Dr. Morénike Giwa Onaiwu, who discusses some of the presentations that may be misinterpreted without specific understandings of the African American Community. In some cultures, to look someone in the eye may be interpreted as disrespectful. By contrast, in the United States, not looking someone in the eyes while they are speaking can make you appear untruthful or uninterested in what is being said.
Additionally, some individuals with ASD may appear uninterested or self-centered, wanting to talk only about their topic of choice. Another social difference may be in the inability to start a conversation or maintain it. For example, if you say, “How are you?” most people would answer, “Fine.” If you were to continue and ask, “What did you do last night?” the person you are communicating with would likely detail the night’s activities. For some people with ASD, however, the conversation may just stop after they responded to “Fine.” Some people with ASD may be unable to maintain an ongoing conversation or to engage in a back-and-forth exchange we expect when we talk with others. While this is not the presentation of every individual with ASD, we need to be mindful of this when engaging in conversations and having expectations for dialogue.
Repetitive Behaviors and Restricted Interests
Another diagnostic criterion of ASD relates to repetitive behaviors and restricted interests. Although we have already discussed that "people with ASD" is a very heterogeneous group, we need to reiterate this. This heterogeneity can manifest in both the degree to which a person with ASD engages in repetitive behaviors and restricted interests that are evidenced. Repetitive behaviors are those that are repeated over time. Some individuals with ASD engage in the self-stimulatory (sometimes called stereotypical) and repetitive behaviors of rocking and hand-flapping. You might be supporting a child who has engages in self-stimulatory behaviors, such as tugging on the bottom of his shirt and making a verbalization/sound. You should know that autistic self-advocates have described these behaviors as helping them to calm or regulate themselves or stimulate and engage themselves. Below is a great video that explains some of the functions of stimming or restrictive and repetitive behaviors, and what we are beginning to understand about people with autism. Overall, we are learning to provide supports and how we may need to differentiate between behavior that is harmful (or self-harming), and something that we may simply need to replace or place time limits upon.
There can also be an insistence on sameness. Some individuals with ASD really dislike changes in routine, as it may become really uncomfortable. If a particular person is absent one day at school, the child may have a great deal of difficulty coping that day. If gym class is cancelled due to weather, a child with ASD might express their difficulties with the change in routine in behavioral responses. It is important to monitor their behaviors to understand how they are triggered, while also providing support and preparation for changes as much as possible (e.g., social stories).
While some of these features (repetitive behaviors and restrictive interests) might be challenging in some environments and settings, some of these may be also functional for the person with ASD. Some of the behaviors (such as flapping and stimming) may serve to help a person with ASD to self-regulate, while the routines may help to ease the discomfort that comes with abrupt changes.
Self-Injurious Behavior (SIB)
Some individuals with ASD may engage in self-injurious behavior (SIB) or aggression. Self-injurious behavior can range from mild to quite severe. Some individuals with ASD, for example, may bite their hands; some may hit their heads. Other individuals with ASD may engage in extreme SIB, such as gouging their eyes and causing blindness, or gouging their ears and causing hearing problems. Extreme instances of SIB can be very difficult to address and require immediate attention if they are life-threatening. Individuals with ASD might also engage in physical aggression toward others (e.g., kicking, hitting, or scratching) or display verbal aggression (using unkind words or profanity).
Below, you will see an example of a young man who displays self-injurious behavior. You'll notice that he's wearing a helmet. He may be wearing the helmet due to seizures or for protection from his head-hitting. He wears headphones to cut down on noise, and you'll see him chewing on some rubber tubing, probably to keep him from grinding his teeth. His self-injurious behaviors are head-hitting, biting, and slapping his legs. His family has put up several videos; you will probably be able to tell that they're very frustrated, feeling that they need a lot more support in the home. This is a more extreme instance of SIB that shows that life at home may be very difficult and that additional support for the family may be needed.
Savant Skills
A relatively small portion of individuals with ASD may display savant skills. You might also hear this referred to as "splinter skills" or "islands of genius," wherein the individual can be experiencing a number of challenges in some areas of development, yet display significant strengths in others. Savant skills typically occur in areas like music, art, or mathematics. You can see an example of savant skills in the movie Rain Man, where Raymond, who has ASD, has difficulty with some functional skills but great mathematical and memorization abilities. Savant skills are often portrayed in popular media, so many think this is how individuals with ASD function; however, the condition is not very common. Savant skills occur only in about 1% of individuals with ASD.
Below is a video clip of a man named Stephen Wiltshire, who has savant skills. He has been sometimes referred to as the“the living camera.” He didn't use speech until the age of five, but at age 11 he began drawing very complex scenes from memory. In this clip, researchers took Stephen to Rome, gave him a 45-minute helicopter ride over the city, and then asked him to draw the city. The level of accuracy and detail is astounding. Again, remember that savant skills are not commonly evidenced in individuals with ASD—but they are a part of the range of autism.
It should be noted that many autistic people find the overemphasis on savant skills problematic, as it is a form of stereotyping, while also placing expectations on them to display an extraordinary talent or gift that is not true for most people. Check out this series which centers on a Korean lawyer with ASD, Extraordinary Attorney Woo (2022).
Also, subsumed under the category of repetitive behaviors and restricted interests are individuals with ASD who have very set routines, compulsions, or rituals. For example, before they are able to leave the house, they might need to do certain things each time (check the stove, touch the light switch, turn the knob three times, etc.). People with ASD who display these behaviors may have greater difficulty with change. They might have trouble problem-solving if the situation is unfamiliar. For example, if someone has the day off from work and an individual with ASD is now responsible for picking up the colleague’s part of the job for the day, it may be difficult for him or her to adjust.
Motor Skill Delays and Differences
Some individuals with ASD may have what is called dyspraxia, or difficulty with motor planning. Some individuals may have balance issues or uncoordinated movements, may walk on their toes, or may have delayed developmental milestones. Motor issues can be categorized based on fine motor skills or gross motor skills. Fine motor skills center on small muscle movements—things like buttoning a shirt or unscrewing the cap off a tube of toothpaste. Gross motor skills involve large muscle groups, typically dealing with ambulation (walking) or being able to move one’s arms in a wide circle.
Gross Motor Skills
Motor issues are addressed through occupational therapy (OT) or physical therapy (PT). Occupational therapists often work with children with ASD on handwriting issues, helping them hold the pencil or pen correctly and helping them learn the amount of pressure to use when putting the pen to paper. An OT works primarily on fine motor skills but can work with physical therapist on trunk movement. Physical therapists may help individuals with ASD with walking, exercise,and positioning. Below, you will see a video of a child engaging in toe-walking, being supported to develop a gross motor skill.
Here is another short clip from an Occupational Therapist, who offers some reasons why people with ASD may engage in toe walking.
Learning Challenges Associated With ASD
Generalization and Maintenance
Some individuals with ASD may experience challenges with learning and skill acquisition that require a different type of instruction and/or instructional support. Some individuals require explicit, systematic instruction, while other individuals require accommodations (supports to help acquire skills), modifications (changing the content to make it easier to learn), or chunking the material (breaking it down into smaller components). One of the main goals of instruction for individuals with ASD is generalization, or the transfer of skills from one setting or environment to another, and with different individuals. When designing instruction, you want to make sure that the skills you teach will be transferred or generalized to other environments and with other people. For example, you might hear teachers say, “You know, he'll only sit in his seat with me” or “He will only respond appropriately with me.” You might think that this is a sign of success, but it isreally not. You want the student to be able to engage in the activity, communication, or behavior with you, with his or her family members, and with another member of their community. If you are supporting a student with skills for telling time, you'll want them to be able to tell time on different clocks/watches/devices. You'll also want them to tell time at home, at school, and in the community. Remember, the ultimate goal of instruction is making sure the students can carry and apply their newly acquired knowledge and skills everywhere they go.
Additionally, once a child learns a skill, it is important for them to maintain that skill over time (maintenance). Someindividuals with ASD may experience challenges in maintaining previously acquired skills, so the ability to perform a particular skill over time cannot be assumed. Individuals with ASD may benefit from some strategies, such as explicit training or visual supports for generalization and maintenance to occur.
Challenges Associated With Core Areas for ASD Support
"Who do you think made the first stone spears? The Asperger guy."
Executive Functioning
Executive functioning is the ability to organize and plan using working memory, inhibiting and controlling impulses, time-management priorities, and new strategies based on what happens in the current situation or what has happened in the past. When you experience challenges in executive functioning can affect your ability to know that you'll have to put your math supplies in your backpack before you go to class, where you'll need them. You might also forget the steps of a sequence ("I’m supposed to do four steps in this task, but I can’t remember past Step 2"). This can be very difficult for students with ASD, making it hard for them to complete tasks that require sequential steps.
Stimulus Overselectivity
Students with ASD may display stimulus overselectivity, wherein they focus on a small detail and may be unable to see the bigger picture. You may also hear this described as "tunnel vision." Because the person is focusing on one small aspect, he or she is unable to pay attention to other parts of an object or other things taking place in the environment. For example, when looking at a car, a child with ASD would not focus on the car as a whole—including the color, shape, and individual parts—but, rather, would overselect, focusing only on the wheels.
Let’s look at another example. Look at the picture below and ask yourself, “What’s the picture about?” Then check the answer to see if you’re correct.
Answer
A child’s closet.
Now think about how someone with ASD who displays stimulus overselectivity would answer the question. What might they say this picture is about?
Answer
A teddy bear or, perhaps, a heart.
Tunnel Vision as a Strength
It should be noted that this can also be a strength among people with ASD. The author of this webpage, Eva Silvertant, talks about a 2013 study by Robertson and colleagues, which found that people with ASD had greater visual attention than their counterparts in the study without ASD. The webpage author also recalls their personal experience and enhanced attention to detail, where she says, “I think it’s this tunnel vision and focus on details that, metaphorically speaking, made me draw the trees rather than the forest.”
Hyper/Hyposensitivity
Individuals with ASD may often appear to sense the world in different ways than others. They may misinterpret everyday sensory information, such as touch, sound, and movement. For example, some individuals with ASD may find certain sounds or colors disturbing, while other individuals may not even hear the sound or notice the color at all. Both of these examples can create learning challenges for individuals with ASD in the area of attention. Two common terms you may hear are hypersensitive and hyposensitive.
Individuals who are hypersensitive (oversensitive) receive too much information from their senses, so their brains become overloaded. This means they may see, hear, feel, smell, or taste things in a more frequent or extreme manner when compared to other people without hypersensitivity. Some individuals with ASD have intense sensitivity to sound and may find certain sounds painful. Sometimes individuals will cover their ears or wear noise-cancelling headphones to help them tolerate noises.
Individuals who are hyposensitive (undersensitive) may receive too little information, so their brain may have difficulty making sense of what little information there is. This means they may see, hear, feel, smell, or taste the world in a more subdued way when compared to other people without hyposensitivity. For example, an individual with ASD’s sense of touch may be lower than normal, and he/she won’t be able to feel light touches or even pain and temperature extremes.
Here is an interesting video designed to illustrate how hypersensitivity might feel to someone with ASD as they go about their day. Please have a look at this video, “Make it Stop.”
Development of the Individualized Education Program
"Autism doesn't define me. I define autism."
If a child has been diagnosed as having ASD, he or she will likely receive specialized services and/or supports in school settings. If this child received their ASD diagnosis earlier, they may have received supports through Early Intervention (EI) services (0-3) and/or Early Childhood Special Education (ECSE) 3-5. These services and supports are provided through a set of laws under the the Individuals with Disabilities Education Act or IDEA, which was first established in 1975 and reauthorized in 2004. If the child received EI/ECSE, then all of their supports and services were outlined within a document called the Individualized Family Service Plan (IFSP). In the school setting, the document that details a plan for the provision of services and supports is called the individualized education plan (IEP). An IEP is a legal document that lists 1) what services and supports the child will receive, 2) who is responsible for carrying them out, 3) how often the services will be received, and 4) how data will be collected. Teachers (special education and general education), parents and caregivers, specialists, related service providers (such as occupational therapists and speech language therapists),medical personnel, as well as the student with ASD can all be part of the team that develops this important document. These are developed during individualized educational planning meetings, also referred to as IEP meetings. The IEP is used as a blueprint for the instruction that will occur. Two essential components of the IEP are the goals and objectivesthat are developed for the student. These goals and objectives outline the activities and skills the student will be working on. Below, you'll find a primer on the parts of the IEP. You'll also see samples of well-written goals and objectives.
Six Required Parts of the IEP
Description of the Child’s Present Level of Performance or Functioning
This section describes the child’s current level of learning or performance, including performance in academic areas, functional skills, and behavioral skills. Descriptions of the child’s current interests and preferred learning style will also be addressed in this part of the IEP.
Annual Goals and Objectives
This section describes the specific skills the student will learn within a designated amount of time. Goals are typically long-term expectations for what the student will achieve within the school year. Objectives are more short-term expectations. An objective breaks down a goal into manageable pieces, or a skill into components.
Related Services
This section lists additional services that supplement the educational services the child receives in the classroom—for example, physical therapy, occupational therapy, and speech therapy.
Educational Placement
This section describes the educational setting in which the IEP will be implemented.
Time and Duration of Services
This section lists the starting and ending dates for goals, objectives, and related services. It also specifies how often and for how long the related services will take place (e.g., the child will receive physical therapy three times per week for 30 minutes each session).
Evaluation of the IEP
This section lists and describes how the student’s progress toward short-term objectives and annual goals will be measured.
Creating Goals and Objectives
When writing goals and objectives, you are specifying the details of what you're trying to accomplish. These should be created collaboratively with the entire team of teachers, school personnel, LEA representative, caregivers, and the student.Goals and objectives must be measurable and observable; this is critical for data collection and the ability to report student progress. Remember the acronym S.M.A.R.T.I.E.-, which helps us to remember that goals should be specific, measurable, achievable (or ambitious), realistic, time-bound, inclusive, and equitable. We have already mentioned smart and measurable; you also want to create goals that will promote outcomes and progress, no matter how significant their support needs are. You should have strong and ambitious expectations, while also thinking about what your student can achieve, with their individualized needs (instruction, support, accommodation, tools, or modifications) in mind. You also want to think about when you can realistically or reasonably expect this to happen, with a specific and explicit time-frame You also want to think about being inclusive, thinking of how goals and objectives can be met for the student while also maximizing inclusion in meaningful ways, across environments and with their peers with and without ASD. Finally, you also want this to be fair and equitable, knowing that students with ASD may be subjected to stereotyped assumptions and stigma. What can you do to make sure you are not contributing to this through the goals you help create and the expectations you have for them? Was the students’ input considered in the creation of these goals, or that of their family members?
Well-written objectives must contain the following four pieces of information:
- the learner: Who is performing the behavior? Be specific and list the student's name.
- the behavior: This is the specific, operationally defined (i.e., observable, measurable, and repeatable) behavior that the learner will be required to display.
- the condition: Under what settings will the learner be expected to perform the behavior? Be specific as to what cues, materials, settings, and other people will be present.
- the criteria: These define how it will be determined that the student has displayed the behavior. Criteria can include number of times the learner must perform the behavior, the level of independence that must exist during the performance, and the time period across which the performances must occur.
Self Check Activity
Please note the components of the goal below based on the information above.
- Example: Given a calculator and two amounts (condition), Alexandra (learner) will add the two amounts (behavior) with 90% accuracy in five consecutive trials (criteria).
Now try a few on your own. Look at the examples below and identify the four components. Please select the arrows to reveal feedback.