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Assessment of Autism: What the Words Mean (and Why That’s Important)

Assessment of Autism: What the Words Mean (and Why That’s Important)
Angie Neal, MS, CCC-SLP
July 2, 2024

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Editor's Note: This text is an edited transcript of the course Assessment of Autism: What the Words Mean (and Why That’s Important) presented by Angie Neal, MS, CCC-SLP.

Learning Outcomes

After this course, participants will be able to:

  • Explain the difference between pragmatics, social skills, social communication and social reciprocity.
  • Discuss data that supports educational impact.
  • Describe key areas that are undervalued or poorly assessed using standardized assessment tools.

Rates of ASD in the U.S.

It should not come as a terrible surprise to many of you that there has been an increase in the incidence and prevalence of autism. What may actually surprise you, though, is the extent of this increase and how recently it has occurred. According to the CDC, from 2021 to 2023, the rate increased from one in 44 to one in 36. Since the incidence and prevalence were first reported by the CDC in 2007, this represents a 320% increase.

Why is that? Why are the rates of autism increasing so dramatically? The answer is quite complicated.

Some people suggest that it's because we have better assessment tools. While I don't necessarily agree with that, I hope you leave here today, and in the part two session on differentiated considerations, with an understanding of why this issue is so complex. A significant part of the complexity arises from the different terminology used, especially when it comes to diagnosis or classification, who is on the evaluation team, and whether all individuals have a common language and consistent understanding of these key terms.

IDEA Classifications of Autism 2021-2023 (a sampling of states)

Let's look at the incidence and prevalence according to IDEA. The CDC provides medical diagnoses, but what about IDEA and school classifications? As we've seen an increase in CDC reports, we've also observed an increase in IDEA classifications. Over the two years from 2021 to 2023, there has been an approximate 11 to 12% increase in school classifications across the United States. This data is based on a sample of states.

Given this, one critical aspect we need to consider in assessments is something we often overlook as part of an assessment team: asking why. One of the biggest shortcomings of an autism assessment tool is its reliance almost exclusively on behavioral observations.

Ask "Why?"

These behavioral observations are highly subjective to the observer. Relying solely on behavioral observation can lead to what's known as circular reasoning. For example, a student flaps their hands, which is interpreted as a repetitive, stereotypical movement—a criterion for autism that requires two such behaviors to be met. This interpretation can spiral into: "Why does he flap his hands? Because he has autism. Why is he diagnosed with autism? Because he flaps his hands." This circular reasoning defines the child by perceived deficits based solely on observation, which may only occur on a particular day or in limited contexts.

This reasoning aligns with a medical model that views these observed deficits as issues to be treated or cured. However, autism is not something that can be cured; it is something we need to understand and support from a neurodiverse perspective. This means understanding autism through a neurodiverse lens and helping autistic individuals understand how others perceive autism.

A better approach is to ask why the child is flapping. Are they excited? Is it a regulation strategy? A coping strategy? When does this behavior occur? Does it happen outside of this specific context? Asking the child how they feel about their flapping, why they do it, and what it accomplishes for them—especially if they can verbalize this—can provide valuable insights. Understanding the underlying reasons can help address concerns or worries. Depending on the situation, it might be appropriate to redirect the behavior to something less overt but equally effective for regulation. This approach respects the neurodiverse perspective and supports the child in a more meaningful way.

IDEA Definition of Autism (34 CFR 300.8(c)(1)(i)

When looking at the IDEA criteria for autism, here is the long definition, but I want to highlight the key terms within the definition. These terms include verbal, nonverbal, social interaction, adversely affects educational performance, repetitive activities, stereotyped movements, resistance to change, and unusual responses to sensory experiences. It is crucial that everyone has a consistent understanding of these terms.

This definition is part of the IDEA criteria, which is referenced in the Code of Federal Regulations (34 CFR). Ensuring that all team members interpret these key terms in the same way is essential for accurate and effective assessment and support.

The DSM-V Adds

But here's what the DSM-5 adds. It includes social communication and social interaction across multiple contexts. It emphasizes social-emotional reciprocity and, my favorite (somewhat sarcastically), developing, maintaining, and understanding relationships. Additionally, the DSM-5 highlights highly fixated or highly restricted interests.

11 Key Terms in ASD Criteria

So here's all of those key terms. There are eleven of them.

  1. Verbal communication
  2. Nonverbal communication
  3. Social interaction
  4. Adversely affects a child’s educational performance
  5. Repetitive activities and stereotyped movements,
  6. Resistance to environmental change or change in daily routines,
  7. Unusual responses to sensory experiences
  8. Social communication
  9. Social-emotional reciprocity
  10. Developing, maintaining, and understanding relationships
  11. Highly restricted, fixated interests that are abnormal in intensity or focus

If you asked everyone on your evaluation team to take a test where they had to define or even use multiple choice to determine if there were consistent understandings of these terms, how confident are you that the response would be 100%? If we know the evaluations are based on observation and that the observations are highly subjective to the observer, but each observer has a different understanding of these key terms, how valid and reliable is our assessment and the subsequent diagnosis?

And remember, that's just eleven key terms in the criteria.

20 Additional Key Terms Embedded Within the ASD Criteria Terminology

But wait, there's more. Here are 20 additional terms that are more specific to social communication.

  1. Social Reasoning/Social  Cognition/Social Understanding
  2. Social skills
  3. Emotional regulation
  4. Pragmatics
  5. Play
  6. Theory of Mind
  7. Central coherence
  8. Empathy
  9. Body language
  10. Gestures
  11. Facial expression
  12. Prosody/Tone of Voice
  13. Context
  14. Discourse/Narrative
  15. Figurative language*
  16. Joint attention*
  17. Inference*
  18. Prediction*
  19. Cause and effect*
  20. Executive function*

Social interaction, both verbal and nonverbal, falls under the broad category of pragmatics. The terms in red will be addressed more in part two. Now, let's go back to social reasoning, social cognition, and social understanding. Why are these terms written as nearly identical? Because different terms may be used to describe social communication due to evolving terminology.

Much of the difference in terminology dates back to before 2013. What happened in 2013? The American Psychiatric Association classified social (pragmatic) communication disorder as separate from autism. Keep that in mind. Regardless of the differing terminology, the information contained within these terms remains relevant and important to consider.

I won't go over the terms with asterisks—joint attention, inference, prediction, and cause and effect—in depth, as I assume you're already familiar with them. Executive function is far too extensive to cover in just two one-hour training sessions; it requires a dedicated training course.

Plus One: Neurodiversity

Here's a "plus one," and I've already alluded to it: neurodiversity. What is it? Neurodiversity is a term and movement based on the idea that all people are different and unique in their own way. This idea reminds me of a time, and you may remember this too.

Do you recall the book "Men Are from Mars; Women Are from Venus?" That entire book is predicated on the idea that men and women have different views and understandings of the world. The same can be said for those with ADHD, dyslexia, and autism. The bottom line is there are different ways of being human, different views and understandings of the world, and all of them are necessary and make valuable contributions.

In other words, these differences should be embraced, not something we need to fix or cure. We shouldn't think of these differences as deficits to be ticked off a list and fixed because there is no physical or behavioral ideal to which everyone should conform. Our differences make the world a better, more interesting, and more productive place. We aren't trying to fix or cure autism; even if we had a magic wand, we wouldn't, and we shouldn't want to.

We need to check our own biases and those of others who are seeking to cure autism.

Examples of Ableist Goals that May Lead to Autistic Masking and Camouflaging

Again, just looking at autism as a sum of those deficits and writing goals based on those deficits can be problematic. Without going into too much detail, I want to reference some of the things I'm talking about. These are the types of IEP goal areas that would be considered ableist. In other words, they aim to change a neurodiverse person to make them fit our world or broader societal expectations.

The problem is that this leads to what's referred to as masking, or hiding who you really are. Let me give you an example. Imagine you're walking around every single day trying to pretend to be a golfer, an engineer, a construction worker, a supermodel, or anyone other than yourself. How hard and frustrating would that be? That's masking, and it's why we don't want to ask anyone to do that.

Goals that would lead to masking or camouflaging who a person really is include those that require them to change their tone of voice, talk about things they have no interest in, or eliminate stimming behavior that serves a purpose for self-regulation. Other such goals might include staying on a topic of conversation for a set number of turns about something they don't know or care about, hiding their emotions to make others more comfortable, or people-pleasing by deferring their needs and wishes to others, essentially surrendering what they want just to blend in.

These also include learning and repeating socially expected rote scripts, with the exception of self-advocacy, identifying and using "appropriate" and "inappropriate" behavior instead of understanding the reason behind the behavior, cooperating without having a voice or opinion, and forcing eye contact, which can be physically painful or overwhelming. Additionally, they might involve hiding or masking body language and facial expressions, playing games others want to play without interest, or needing a few minutes away from others to reset.

Further, goals aimed at extinguishing so-called "problem behaviors" or tolerating change without understanding the underlying reasons for those challenges are counterproductive. In summary, these are all examples of what not to do within a neurodiverse view.

Support Based on a Neurodiverse View

Goals that are grounded in a neurodiverse view would focus on developing underlying language skills, such as language for self-advocacy—how to ask for what you need. They would include working on perspective-taking, problem-solving, setting and observing personal boundaries, planning, and giving and obtaining consent. Additionally, these goals would prioritize ensuring safety, being aware of helpful versus harmful things, and understanding the difference between being friendly and not being a friend.

Pragmatics 

Breaking down our key terms, let's start with pragmatics. As speech-language pathologists, we know that pragmatics is one of the areas of language focused on the use of language. However, how much consideration is often given to context? Context makes a tremendous difference in what and how meaning is interpreted. For example, without even looking at someone's facial expression or body language, what would the context of a funeral tell you to expect?

The problem with a pragmatic language disorder is that individuals struggle with understanding that different contexts have different rules or expectations. It's the lack of knowledge about what those rules and expectations are.

Social Communication 

This leads us to talk about social communication. Social communication and interaction occur within any given society, culture, or framework. In other words, social communication requires knowing that there are different ways to communicate and interact in different contexts, settings, and with different people. This is one of the biggest differences between a speech-language pathologist's evaluation of pragmatics or social communication and a school psychologist's evaluation. It's all about considering context, which includes cultural differences.

When we consider culture, think about the rules for politeness within that culture and the implications of knowing what is expected. These rules are not the same across all cultures. Here's a good example: based on my dialect, you can tell I am from the Southeast. My dialect reflects my culture, not just in phonology and speech production, but also in syntax, semantics, and pragmatic language. In my culture, young children refer to teachers as "Miss" followed by their first name. So, pretty much every young child I know refers to me as Miss Angie, not Miss Neil. Additionally, "yes, ma'am" and "no, ma'am" are part of early linguistic phrase development here, along with a multitude of Southern idiomatic expressions.

Here’s a perfect example, and my personal favorite: when a southern woman asks, "What did you say?" it's not because she wants you to repeat yourself. It means you better start doing some sweet talking and apologizing because you're about to get into a lot of trouble. If you've ever had a Southern mama, you know exactly what I’m talking about.

The point is that knowing that different cultures, societal frameworks, contexts, settings, and even people have different rules or expectations means we don't teach social communication in a vacuum. We have to teach how these expectations differ, even if you happen to spend a week at the beach with my mama and me.

Social Skills

Social skills are the area that trips up most non-speech language pathologists. There is a common misunderstanding about social skills, often summed up by the phrase, "all behavior is communication." Well, yes, it is. This is especially true for those who are minimally verbal; their behavior is how they communicate what they are unable to express verbally. However, we often see referrals made to the speech-language pathologist for pragmatics or for suspicion of an autism diagnosis or classification due to behaviors that the student can or should be able to verbally express.

The problem arises when we teach that all behavior is communication and a student is misbehaving by choice, implying they know what is expected. This leads to blaming the teacher or the parent for the student's behavior, which is unfair. This perspective overlooks the possibility that the student may not actually have the knowledge or ability to meet the expected behavior, thereby unjustly placing blame on those responsible for their care and education.

Let me give you an example of what I mean. Let's say a student is being disruptive. They're huffing and puffing, kicking backpacks all the way down the aisle in the classroom, and pushing kids out of their way to get to their seat, which then cues a referral to the administrators. In this scenario, the best we can do is make a subjective inference about why that student is exhibiting those behaviors. However, because we're only observing the behavior and not seeking to understand why, those inferences are likely to be incorrect. Keep in mind that this is a student who can or should be able to express why they might be upset about an assignment. So, we should be asking.

The bottom line is that saying "all behavior is communication" is not incorrect per se, but it's just not very helpful. I've had administrators refer students to an evaluation team because the student hides under the table in the lunchroom, gets into fights easily, goes into a meltdown if they lose a game or don't get to be a line leader, or they're just being rude. To be very clear, misbehavior is not impaired social skills. Social skills are learned either directly or indirectly. Misbehavior is choosing not to apply what they know. That's the difference.

So when it comes to social skills, the key question should be: does the student know what the expectation is for that context? And if they do know that, why aren't they following that rule or expectation? The best way to figure out the reason for the behavior is to ask them.

Here’s one more great illustration of the difference between social communication and social skills. Where you live, you likely have a Subway restaurant. When you’re in line at Subway, you order the food step-by-step: first, you say what kind of sandwich you want, then they ask you what kind of bread, then what kind of meat, and then individually about each of the toppings. Finally, they ask if you want chips and a drink, and maybe a cookie, until you purchase it.

Now, your area likely also has a sit-down restaurant like Applebee’s. When you go to Applebee’s, you order everything all at once when the waitress comes. The waitress will typically ask for your drink order first, like if you want some water.

The bottom line is that ordering food is the same social skill, but social communication is understanding that different contexts have different expectations.

Social-Emotional Reciprocity

Reciprocity, as we know, is that spontaneous, fluid, back-and-forth social interaction where we change our behavior, actions, words, or tone based on the context or conversational partner. It's the dynamic exchange in social interactions with various people and in various situations, which includes, and here’s the social-emotional part, being aware of and interpreting body language and nonverbal cues that express emotion.

The observable behaviors we look for as indicators of difficulties in reciprocity might include an abnormal social approach, failure of normal back-and-forth interaction, reduced sharing of interests or emotions, or failure to initiate or respond to social interactions. But who decides what constitutes an abnormal social approach, and how does that vary based on the context? For example, the way you’d greet someone at a funeral is different from how you’d greet someone at a football game. Are we considering these contextual differences when we evaluate social approaches?

When it comes to sharing interests, whose interests are we considering? If you’re sitting with someone who only wants to talk about golf—like my husband, if that were all we talked about, which thankfully it’s not—we’d only be focusing on his interests. But what about my interests or the books I’m reading? Are we taking into account whose interests are being shared?

How can we accurately judge social interactions based on a one-to-two-hour visit in a room full of strangers? Understanding all these key terms helps fill in the gaps when we can't observe interactions across a variety of contexts. We're assessing whether the individual has the underlying knowledge and skills necessary for social reciprocity.

Important Clarification

This is a quick summary of what I think are the most confusing terms:

Pragmatics: It's the area of language focused on the use of language, serving as the broad umbrella category that everything else falls under.

Social Skills: This refers to knowing that various social tasks exist and understanding the behaviors expected with those tasks.

Social Communication: This is the knowledge that different contexts have different expectations, even if it's the same skill. You can teach a skill, but you also have to teach the different contexts where it has different expectations.

Social-Emotional Reciprocity: This is the back-and-forth interaction, both verbal and nonverbal, with a particular focus on the emotional aspects.

The big takeaway here is the difference between social skills and social communication. It lies in understanding how a skill may have different expectations across contexts, why certain skills are important, and how to demonstrate those skills in various contexts.

Social Reasoning/Social Cognition/Social Understanding

So now let's talk about those terms that are relatively interchangeable. My personal preference is the term social cognition. Social cognition relates specifically to acquiring social knowledge—that knowledge piece we're talking about, either you have it or you don't. This includes using knowledge to plan, guide, and respond to social interactions, hinting at executive function.

Key abilities here include theory of mind, which we'll dive into more in part two, but for now, it relates to perspective-taking. Executive function, which is a whole other training session, involves planning, guiding, and responding to social interactions across multiple contexts. Social reasoning encompasses making inferences, predicting outcomes, understanding cause and effect, and presupposition.

For example, if a student is writing a paper, they might not presuppose that the teacher knows who the characters are in their story. They might use poor pronoun references, saying, "she did this" and "he did that," without clearly identifying the characters. This highlights the difficulty autistic individuals often have with inference, cause and effect, and prediction because they tend to be very literal and concrete thinkers. They don't assume anything that isn't explicitly stated.

Therefore, we need to teach how to use the information provided to investigate and make connections between what is said and what isn't said. This skill is extremely necessary for both listening and reading comprehension.

Social Interaction

What about social interaction? Social communication involves understanding that different contexts have different expectations, as we've discussed. To have successful social interactions across a variety of contexts, several foundational skills need to be developed. One of the most important foundational skills is secure attachment or attunement with a caregiver.

Why is this important, especially at a young age? Because parents and caregivers are a child's first models and teachers of social interaction. If a caregiver is not attuned or paying attention to their child—perhaps because they're more interested in a smartphone or vice versa—then these early social interactions can be delayed.

Another crucial aspect is developing emotional regulation. Emotional regulation is not something we're born with; it's something we learn. For example, when a child falls and skins their knee, we hold them, rub their back, and tell them, "Shh, it's going to be okay." Through these actions, we are teaching and modeling emotional regulation.

Emotional regulation and code-switching are most often learned implicitly through modeling. For example, how an adult talks to a police officer may differ from how they talk to a spouse, a younger sibling, or a waitress. Social reasoning, as mentioned earlier, is crucial for peer-related competence.

What does peer-related competence mean? It means having fluid competence and automaticity in interacting with same-age peers. In other words, knowing how to coexist in a room full of other children who are also trying to learn about pumpkins, oviparous animals, or Christopher Columbus.

Social skills, as discussed earlier, include conflict resolution—both how to do this and why it is important. All of these skills are critical for interacting with other humans.

Emotional Regulation

I touched on emotional regulation a moment ago, but let's dive a bit deeper. Emotional regulation is the ability to maintain a well-regulated emotional state, staying at neutral, and coping with everyday stress.

For instance, you could be in a stressful situation, but you manage to return to neutral. Being at neutral makes you most available to learn and interact. Emotional regulation also involves moving across the emotional continuum. This means going from "Woohoo, we're going on a field trip!" or "I just won $20 in the lottery" back to neutral, or from "Oh, I totally failed that test" or "That kid totally hates me" back to neutral.

From an adult perspective, what does this look like? Imagine getting a speeding ticket on the way to work, then realizing you have on one blue shoe and one black shoe, and when you walk in, there's that one parent waiting for you. Despite all this, you have to downshift from all these emotions back to neutral.

Now, let me give you a student example. I once had a second-grade student who was a runner, and he had run out of the classroom. He was really upset. When we found him, he was literally seething with anger. We brought him in and started talking to him. Soon, he became emotionally labile, crying hysterically. Then, he moved through the crying and became happy, wondering if he would get to go to the dollar store or the treasure box. All of this happened within a span of ten minutes.

So I ask you, how ready is this child to learn about multiplication facts? How likely is it that they will have the stamina to read anything, much less several paragraphs, or wait their turn at the board? This highlights why emotional regulation is so critically important to know about, talk about, and identify.

There are reasons for poor emotional regulation. First and foremost, it's often not being taught or modeled by family, parents, or caregivers. A great example is when parents bring children in for their vaccine shots. Instead of holding and consoling the child, modeling emotional regulation, they hand them an iPad. iPads do not teach emotional regulation.

Emotional regulation can also be affected by poor recognition of emotion in your own body. When you don't receive or recognize feedback or sensations in your body, such as scrunched-up shoulders or balled-up fists, you can't label or understand what it means. Emotions are very abstract and not something you can easily grasp.

Additionally, having a limited vocabulary for labeling emotions is a significant issue. There’s a big difference between feeling frustrated and mad, or jealous and worried. The more specifically one can label their emotion, the more targeted the support and strategies can be. This leads to a limited innate knowledge of strategies to regulate emotions and return to a neutral state.

This is important because, as Dr. Barry Prizant, one of the most well-known researchers and speakers on autism, shares, difficulty staying well-regulated emotionally and physiologically should be a core defining feature of autism. But is it? Did you see that term listed anywhere in those eleven terms within the criteria? Often, our assessments focus on observing behavior rather than understanding the underlying cause. This is a significant point. We need to ensure we are addressing whether the student has the knowledge related to emotional regulation.

Or are they choosing, consciously or unconsciously, not to act on that knowledge? Everyone feels dysregulated from time to time, but the difference is having the knowledge to recognize it in yourself and others, label it, and use strategies to return to neutral.

For individuals on the autism spectrum, we often see a lower threshold for emotional regulation. This means almost anything can magnify their emotions. They also have fewer innate coping strategies to figure out how to get back to neutral. If they have sensory processing differences, it becomes ten times more difficult. Additionally, poor perspective-taking or theory of mind makes it harder to recognize that their dysregulation and the behaviors that demonstrate it might impact how others feel about them, potentially scaring others or making them less likely to want to spend time with them.

Nonverbal Communication

It might feel like this is a downshift to pretty familiar territory, as it should be, but there's a reason we need to look at nonverbal communication under a very bright light, especially related to autism assessment. We can all agree that nonverbal communication includes facial expressions, gestures, eye contact, body language, tone of voice, prosody, movement, and posture. But here’s where I’m going with this: do we assess all of those things in our autism evaluations?

Eye Contact

Eye contact can vary for lots of reasons, one of them being cultural norms. In some cultures, it's a sign of disrespect to look elders in the eye. It could also stem from a dislike of a person. Have you ever disliked someone so much at that moment that you either can't look them in the eye or you look at them so intensely that it becomes awkward?

What about unknown or undiagnosed hearing difficulties? How might that relate to eye contact? Being anxious or shy, distracted by something shiny, or having difficulty focusing on both the spoken language and the nonverbal information from the eyes at the same time could all affect eye contact. Additionally, it could be that looking someone in the eyes is such an intense sensory experience.

Gestures

I imagine we all know gestures pretty well. But again, how well does the rest of the team know and understand gestures, and who is assessing gestures? What exactly are we assessing related to gestures? We need to differentiate between dyadic gestures, which can be interpreted based on context, and representational gestures, which are specific to meaning.

For example, pointing to a running dog requires seeing a dog running outside, which is a dyadic gesture. Representational gestures, like using the pinky and thumb to represent a phone, used to be common, but that's not accurate anymore. How would you gesture for a phone now?

A recent study in 2021 looked at how minimally verbal autistic children use gestures and found two key points. One, using gestures to request was the most frequent function of a gesture, making it a good starting point for therapy across all ages. Two, gestures that require joint attention are the most challenging for all ages. For instance, gesturing for someone to hand you the phone or pointing at a running dog both require joint attention, where someone is looking at you and at what you're indicating.

These points highlight good therapy targets: focusing on requesting gestures and those requiring joint attention.

Eye Gaze and Gestures

Let's look at the combination of eye gaze and gestures. These two elements are key distinguishing features that separate typical development from autism spectrum disorders. In fact, the lack of appropriate gestures between 12 and 24 months is one characteristic that distinguishes autistic children from those with typical development.

Eye gaze and gestures have been found to be persisting core deficits in children with autism. How are we assessing these skills? This is crucial because most assessment tools either only include two or three questions about nonverbal skills or these questions are not linked to developmental expectations for when they should be developed. My personal favorite issue is that these questions are often asked as yes or no questions, such as "Does your child use gestures?" without actually observing the gestures or noting which gestures are observed.

Instead of asking, "Does your child use gestures?" it would be more effective to ask, "Which of these gestures do you see your child using?" This approach provides a clearer picture of the child's nonverbal communication abilities. If you ask a layperson, "Does your child use gestures?" they might not think of the appropriate gestures. Providing a list helps parents and caregivers think about specific gestures their child might use.

Finally, it's important to consider nonverbal communication in the context of cultural differences. Different cultures may have varying norms and expectations for eye gaze and gestures, and these should be taken into account during assessment.

Stereotyped or Repetitive Motor Movements, Use of Objects, or Speech

What about stereotyped or repetitive movements, use of objects, or speech? The first question we need to ask is: are we looking at the cause or merely observing the behavior? Let's think about this. When you bite your nails, twirl your hair, drum your fingers, or rock back and forth, are you attempting to regulate due to being overstimulated or understimulated? Or are you seeking stimulation because you're bored, worried, trying to stay awake, thinking hard about a topic, or super stressed?

When or why might a student watch their fingers, look through the corner of their eyes, posture, or flap their hands? Are they attempting to regulate because they're overstimulated or understimulated and seeking attention?

Next, we need to ask about the functional impact of these behaviors. For example, is there a functional impact to twirling your hair, drumming your fingers, or rocking? Do we seek to understand the context under which these behaviors happen? By examining whether these actions occur because of overstimulation or understimulation, we can provide appropriate support.

Highly Restricted, Fixated Interests that Are Abnormal in Intensity or Focus

What about highly restricted, fixated interests that are abnormal in intensity or focus, or a strong attachment to or preoccupation with unusual objects? Consider this example: I was working with a school psychologist on an autism assessment, and they noted that the child was really into Minecraft. I pointed out that he's an eight-year-old boy, and Minecraft is not an atypical interest for that age group. If Minecraft were the only thing he could focus on, that would be different, but general interest in Minecraft or dinosaurs is typical for many children.

On the flip side, I've had students with highly fixated interests in unusual objects. One student was obsessed with manhole covers, and another was fixated on car emblems. The latter student would run out to the parking lot just to look at the different car emblems. In these cases, we have to ask about the functional impact and the context in which these interests occur.

Resistance to Change/Insistence on Sameness, Inflexible Adherence to Routines,
or Ritualized Patterns of Verbal or Nonverbal Behavior

What you want to look for is extreme distress at small changes, not just the fact that they have to switch from PE to music today. Is this small change causing them extreme distress that impacts their ability to functionally interact with their environment? The same applies to significant difficulties with transitions.

You and I may not love transitions; for example, our state is currently transitioning to a new IEP system, which isn't fun, but we manage using our emotional regulation. We need to look at not justifying distress but determining if it is extreme and how atypical it is.

Another point is restrictive food intake. Problems with eating and feeding in children with autism spectrum disorder have been reported to occur in 50% to 90% of cases. Again, we need to ask about the functional impact and the context in which this occurs.

Hyper or Hypo Activity to Sensory Input
or Unusual Interest in Sensory Aspects of the Environment

Indifference to pain or temperature, adverse responses to specific sounds and textures, excessive smelling or touching of objects, and visual fascination with lights or movement are other considerations.

We all have sensory sensitivities. For example, my personal sensory issue is that I hate the sound of a bathroom fan, but it doesn't ruin my day. My strategy to fix it is to just turn it off.

We're looking for behavior that is outside typical variance. Again, we need to consider the functional impact and the context in which these behaviors occur.

Developing, Maintaining, and Understanding Relationships

This is my favorite topic: developing, maintaining, and understanding relationships. Imagine if I gave you an assignment to go to the mall, a restaurant, or the beach, take some pictures, and then report back on the groups of people you saw. Which groups were developing a relationship? Which ones were maintaining a relationship? Could you tell if they understood the relationship? I've been married almost 25 years, and I can say I'm both developing and maintaining this relationship, though I can't always say I understand it.

The point is, how do you determine this based on observation? What is the functional impact, especially in a school setting? It's one thing to be able to converse, collaborate, and communicate, but it's entirely different to consider developing and maintaining relationships and whether that's part of the educational standards.

How does this resonate with a neurodiverse view? As mentioned earlier, referrals are increasingly focusing on behavior without seeking to understand the underlying cause and not really asking the student or determining if the student has the knowledge to demonstrate these skills.

Based on what you've learned so far, think about those key terms and key indicators that would stand out if a student is suspected of autism.

Referrals for Assessment

I want you to think about how you would take this information and train others about these key terms so that we can start generating appropriate referrals. What I'm going to do now is briefly go over some of those key terms within the developmental continuum.

Birth to Age 3

So, birth to age one, we already know some of the things that would stand out, such as not pointing or gesturing or being out of sync with the caregiver. They don't smile at people, or they have poor social orienting.

From twelve to 36 months, key indicators include poor coordination of eye gaze with gestures, lack of imitation, not following another person's point or line of regard towards another object, event, or interest, lack of shared enjoyment or joint attention, and limited play.

Ages 3 to 4

Play at age three and four: not making eye contact, not engaging in pretend play or make-believe, not wanting to play with other children, being interested in parts of objects, or preferring to play with objects instead of people.

At age four and five: no interest in interactive games or make-believe. Also, narratives—put a pin in that because we'll dive deep into narratives in part two, but it's related to not being able to retell a story, even the story of what you did over the weekend. Other indicators include difficulty sharing and taking turns, limited facial expressions and gestures, and difficulty recognizing and labeling feelings.

Again, you hear the same terms repeatedly related to developmental milestones. However, we can use these developmental milestones outside of an assessment tool.

Age 5

Age five to six: difficulty with emotional regulation as we've talked about, rigid, repetitive, or atypical behavior and movements, atypical interests for their age, difficulty distinguishing between what's real and make-believe, and sensory sensitivities.

Ages 5 to 11

And then for school age, we're really looking at limited social reciprocity, limited understanding of social rules and expectations, limited understanding of perspective and people's feelings. Additionally, we look for unusual prosody, atypical verbal language, such as talking excessively about specific interests like car emblems, and even pedantic language. There's also a preoccupation with rules or selective attention to detail, which we'll discuss further in part two related to central coherence. Lastly, being socially naive and not understanding the intentions of others is a key indicator.

Ages 12 to 18

And then for our young adults, we're looking at a lack of insight, specifically regarding social relationships, social expectations, and social personal responsibility. We also observe a significant difference between their intellectual potential and their self-care abilities, which might be due to difficulty with executive functioning. Additionally, there is a tendency to misinterpret intentions and again, being socially naive.

Adverse Educational Impact

Now let's think about adverse educational impact as we start to wind down. Keep in mind this is specific to a school setting. To be eligible under IDEA, there must be data or documentation to support adverse educational impacts. Are we assessing for this? Are we gathering this data?

As I list these areas that would have an adverse educational impact and connect with the difficulties we've outlined earlier, think about what data you would collect to support adverse educational impact. Specifically, consider figurative language and labeling emotions. Both figurative language and labeling of emotions are semantic skills. Is there a test for this? If not, should we still gather this data? How might gathering this data support both the presence of a disability and adverse educational impact? You can gather this data from the classroom, perhaps from some of their fictional reading texts.

Additionally, consider inference, prediction, and cause and effect, which we've talked about regarding verbal skills. Most ELA standards include something related to conversation and collaboration, so gathering this data should be relatively easy. What about personal safety? Is that an educational standard? It has a functional impact, absolutely. For example, if someone is yelling at a student in the parking lot, they may misinterpret the yelling as anger rather than a warning to get out of harm's way.

And what about self-advocacy? How do we move students from relying on teachers to give accommodations to asking for what they need and identifying what they need to be successful?

What if There is No Documentation to Support Adverse Educational Impact for Initial or Ongoing Eligibility?

What if there's no data to support adverse educational impact? First, we have to ensure we’re collecting that data to determine the impact. Some of the things mentioned previously need data collection, even if they're not on a standardized test. If there’s no data to support adverse educational impact, then the student is not eligible as a student with a disability under IDEA. They may be eligible in other settings.

Think about social communication—different contexts have different expectations. But for IDEA eligibility, the student must have the presence of a disability, adverse educational impact, and thus the need for specially designed instruction. If there is no adverse educational impact, what is the specially designed instruction addressing?

A court case in 2015 illustrated this. A child on the autism spectrum had significant anxiety outside of school, biting his fingernails until they bled in unfamiliar places. However, none of these behaviors were observed in the school setting. No teacher observed this, so there was no data to support adverse educational or functional impact in school.

As such, that student no longer met the criteria under IDEA. However, could that student still get support under a 504 plan, such as accommodations? Absolutely. This falls under the ADA, Americans with Disabilities Act.

Should Speech “Automatically” be Added for Students with a Classification of Autism?

The next question I get asked a lot is, should speech automatically be added for students with a classification of autism? The answer to that comes straight from federal law. IDEA requires decisions that are individualized to the needs of that student. Therefore, making blanket statements such as "all students with X must receive Y" is not appropriate. 

Firstly, it's not an individualized decision, and Secondly, it’s not a decision made by the IEP team based on the student's needs.

Additionally, while SLPs can provide a variety of supports and services, even if the student doesn't meet eligibility for speech services, it's important to note that speech services are not automatically warranted. SLPs can indeed offer a range of supports, but their involvement should be determined based on the individual needs of the student.

It's also worth mentioning that SLPs are often seen as the primary personnel trained to support social development, but this is not true. Many professionals within the educational team can support social development, and it’s crucial to leverage the expertise of the entire team to meet the needs of the student.

Special Education Foundational Knowledge Praxis

I looked at the Praxis for special education teachers under general content knowledge. In other words, to pass the Praxis for special education, teachers have to demonstrate knowledge of social development milestones, social skills for individuals with ASD and other developmental disabilities, and knowledge of effective strategies, including teaching social behaviors and supporting social-emotional skills. This isn't to say dump everything on your special education teacher—they already have a full plate, just like we do.

The better understanding from this is how do we collaborate? How can we write goals that we both collaborate on? Social skills do not develop just in the speech room; they develop all day long.

Speech as a Related Service

Speech can be a related service even if the student has another disabling category, such as ASD, but doesn’t meet the criteria for speech-language impairment. To determine if related services are necessary, it's important to note that this is not the same as looking at adverse educational impact. Instead, it's about whether speech services are necessary for the student to benefit from the special education program. This is the only time IDEA mentions the word "benefit," emphasizing its specificity.

We all could benefit from various supports, but this determination is specific to whether speech services are required for the student to benefit from the special education program. To answer that question, you must determine if the unique needs, skills training, and expertise of the SLP are necessary. If they are necessary, then consider what that looks like in the least restrictive environment—whether through direct services, indirect services, or supplementary services.

See additional handout for references.

Citation

Neal, A. (2024). Assessment of autism: what the words mean (and why that’s important). SpeechPathology.com. Article 20679. Available at www.speechpathology.com

 

 

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angie neal

Angie Neal, MS, CCC-SLP

Angie Neal is the SLP Contact and Policy Advisor for Speech-Language Services and Early Literacy at the SC State Department of Education. She stays busy as LETRS Facilitator, a board member with the State Education Agency Communication Disability Council, and as a member of the ASHA School Issues Advisory Board. She is a published author of two books and presents on a wide variety of topics all across the United States.



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