Decoding Autism and Leading the Way to Successful Inclusion

Barbara Boroson

• Editorial: ASCD
• Año: 2020
• ISBN:
  9781416629221
• Categoría: Éducation
• Categoría: Éducation inclusive

With warmth and wisdom informed by her experience as an educator, clinician, and parent of a son on the autism spectrum, Barbara Boroson looks holistically at the challenges students on the spectrum face.

More students on the autism spectrum are taught in general education settings today than ever before, bringing an array of notable strengths and skills that add intriguing new dimensions to educational programs. But these students also present challenges that are broader, deeper, and more intractable than those of their typically developing peers.

Because reaching and teaching students on the autism spectrum in an inclusive environment complicates the work of teachers, school and district administrators must be prepared to provide knowledgeable, mindful leadership.

From this book, you'll learn to decode the functional and behavioral manifestations of these challenges, and you'll gain practical and research-based preemptive, supportive, and responsive strategies. You will also find* Insight into the perspectives of parents and guardians, along with guidance on partnering with them in ways that acknowledge both their expertise and yours.
* Tips for modeling transparency and creative differentiation in order to set an inclusive tone throughout your school or district.
* Supplemental materials to help you engage and educate families and the entire school community about autism, inclusion, and best-practice policies.

Decoding Autism and Leading the Way to Successful Inclusion empowers school and district leaders to ensure that students on the spectrum are welcome, supported, understood, and set up for success. It's an essential resource for any education leader committed to achieving a differentiated, equitable, and inclusive learning environment for all students in their care.

---

Chapter 1

---

Autism Spectrum Disorder Today

. . . . . . . . . . . . . . . . . . . .

It's not your imagination: there are more students on the autism spectrum in our schools now than ever before. That's because autism is being diagnosed more now than ever before. Whereas in 2000, 1 in every 150 children in the United States had a diagnosis of an autism spectrum disorder, by 2018 the U.S. Centers for Disease Control (CDC) confirmed that the prevalence had reached 1 in every 59 children (Baio et al., 2018). The clear question is why. The answer, however, is not a straightforward one, and the factors are anything but clear.

In this chapter, we will take a look at the increasing prevalence and evolving definition of autism and at what regulations and options guide educational program provision today.

Decoding the Diagnosis

One likely explanation for the increase in the number of students on the autism spectrum is the changing clinical definition of autism over the years. As the diagnostic terms have broadened, more and more students are meeting the criteria for autism diagnosis.

How Did We Get Here?

Before 1994, autistic disorder could be diagnosed in an individual only when highly significant impairments in the areas of social interaction, communication, and behavior were manifest. These criteria restricted the diagnosis to individuals who were deeply lost in themselves: most either nonverbal or minimally verbal, often profoundly idiosyncratic or mercurial in their interactions and behavior, and quite limited in self-care abilities.

Asperger's In

In 1994, when the American Psychiatric Association published the fourth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV), autistic disorder was subsumed into a broad category called pervasive developmental disorders (PDD). DSM-IV identified five subtypes of PDD: Rett's syndrome, childhood disintegrative disorder, autistic disorder, Asperger's syndrome, and pervasive development disorder–not otherwise specified (PPD-NOS).

At that time, the newly defined subtype called Asperger's syndrome differed in significant ways from the other PDD subtypes. While individuals with an Asperger's syndrome diagnosis presented social idiosyncrasies and restricted, repetitive patterns of behavior much like their peers elsewhere on the autism spectrum, they did not present delayed or impaired speech. Additionally, most individuals with Asperger's presented relatively better-developed cognitive, adaptive, and self-help skills. They were generally articulate, somewhat independent, at or near grade level academically, and relatively ready to learn. Before DSM-IV, these relative strengths would have precluded this cohort of students from meeting the criteria for any kind of autism diagnosis.

Did students like these exist prior to 1994? They sure did. Some were never officially identified or diagnosed at all; they slipped under the diagnostic radar, often thought of as "quirky kids" or "little professors." Others were diagnosed with a learning disability or emotional disturbance, or classified as "other health impaired," for lack of a more suitable moniker. The subtype Asperger's syndrome filled a need for a more descriptive diagnosis for these students who didn't quite meet the earlier criteria for autistic disorder, and it paved the way for them to receive much-needed social, behavioral, and other services both in and out of school.

Asperger's Out

In the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), published in 2013, the criteria for diagnosing autism-related symptomatology changed once again. Experts had begun to suspect that the five subtypes of pervasive developmental disorders were insufficiently distinguishable from one another. They feared that subjectivity was interfering with diagnosis and perhaps contributing to the sharp rise in diagnostic rates. To that end, all five subtypes have been absorbed back into a single umbrella term with a broader reach: autism spectrum disorder (ASD). To reduce the unreliability of subjective interpretation, diagnosticians now substantiate and justify an ASD diagnosis by completing standardized rating scales and providing annotative descriptions that characterize the specific nature of an individual's functioning. Anyone who would have met the former criteria for any of the PDD subtypes would now be diagnosed, simply, with ASD (American Psychological Association [APA], 2013).

Although there were a number of contentious components related to this change, the most enduring controversy surrounds the elimination of Asperger's syndrome as a diagnosis. During the 19 years in which it was an active diagnosis, many individuals who were diagnosed with Asperger's syndrome—my own son among them—took some degree of comfort in having a specific diagnosis that clearly distinguished them from their more profoundly affected peers on the autism spectrum. Those who grew comfortable with their Asperger's diagnosis may be loath to renounce that signifier—and they don't have to. Even though Asperger's syndrome and other PDD subtypes are no longer being diagnosed, individuals who received those diagnoses previously are free to continue using them.

As the diagnostic criteria have evolved and broadened over the last 25 years, more and more individuals, whose challenges might once have been only vaguely recognized, now find a home on the autism spectrum. From this perspective, the skyrocketing "prevalence" rates may more reflect the broadening and redefining of the diagnosis than an increase in the actual incidence of autism.

Co-Incidentally …

Scientific theories abound as to whether there is also an increase in the actual incidence of autism, and if so, why.

One such theory regarding the etiology of ASD is gaining traction. Genetic markers have been identified that change the way instructions in the genetic code are translated and carried out by the body. These changes, known as mosaic mutations, may alter the nature of a gene's expression. Depending on the way these markers interact with other genes and with the environment, they may predispose a child to be genetically more susceptible to having ASD (Krupp et al., 2017).

The Vaccine-Autism Fallacy

The global vaccine fallacy perpetrated by discredited doctor Andrew Wakefield has now been completely debunked by science. His broadly accepted but baseless claim linking vaccines to autism had been published in the scientific journal The Lancet in 1998. However, in 2010, upon finding that the study was undermined by falsified data, ethical violations, and financial conflicts of interest, The Lancet unequivocally renounced and retracted Wakefield's claims, and the British General Medical Council stripped him of his license to practice medicine. Since then, study after study conducted by unbiased researchers has shown absolutely no association between vaccines and autism. The Washington Post stated plainly, "First things first: 'Vaccines do not cause autism.' So says the Centers for Disease Control and Prevention, the World Health Organization, the National Academies of Sciences, Engineering and Medicine, and the American Academy of Pediatrics, along with dozens of studies published in prestigious, peer-reviewed journals. The scientific consensus on vaccines and autism is thorough and solid: There is no evidence of a connection" (Kaplan, 2017). Indeed, the American Academy of Pediatrics has produced a 21-page document containing summaries and links to dozens of studies and reports that demonstrate the safety of vaccines (2018).

But, regrettably, the damage was done. This false connection has been extremely hard to shake in public perceptions about autism. You will surely encounter parents who remain convinced that vaccines are to blame for their children's autism, and other parents who eschew vaccinations altogether for this reason.

Please spread the facts: ASD is neurodevelopmental in nature, meaning that it is related to the wiring of the brain, and it manifests during the early years of child development—the same years when most vaccines are administered. However, the use of vaccines during that developmental period is coincidental, not causal. Autism is not caused by vaccines.

What Is Autism Spectrum Disorder Today?

According to the DSM-5 (APA, 2013), in order to qualify for the diagnosis of ASD, individuals must meet, across multiple contexts, all of the five criteria described in Figure 1.1.

---

Figure 1.1. Practical Summary of Autism Diagnosis

Criteria: 1. Persistent deficits in social communication and social interaction, not accounted for by general developmental delays.

Common Components:

• Deficits in social-emotional reciprocity.
• Deficits in nonverbal communicative behaviors.
• Deficits in developing and maintaining relationships beyond those with caregivers.

Examples of What to Look For:

• Atypical social approach, failure of expectable back-and-forth conversation, reduced sharing of interests and emotions.
• Poorly integrated verbal and nonverbal communication; atypical eye contact and body language; limited of understanding or use of facial expression and gestures.
• Difficulties adjusting behavior to suit different social contexts; difficulty sharing imaginative play, making friends; apparent lack of interest in peers.

* * *

Criteria: 2. Restricted, repetitive patterns of behavior, interests, or activities.

Common Components:

• Stereotyped or repetitive speech, motor movements, or use of objects.
• Rigid adherence to routines, ritualized patterns of verbal or nonverbal behavior; excessive resistance to change.
• Highly restricted, fixated interests.
• Over- or under-reactivity to sensory input or unusual interest in sensory aspects of environment.

Examples of What to Look For:

• Repeating the same words or sounds over and over; lining up toys; using self-stimulatory behaviors.
• Insisting on specific responses to specific prompts; getting notably upset in the face of changes in plans, rules, roles, or expectations; insistence on sameness.
• Inability to shift focus from specific topic of perseverative area of interest; strong attachment to unlikely objects.
• Fascination with lights or spinning objects; aversion to certain sounds or textures; indifference to pain or temperature.

* * *

Criteria: 3. Symptoms must be present in early childhood.

Common Components:

Atypical restrictive, repetitive patterns of behavior relative to same-age peers; must be noted in early childhood. In some cases, social communication challenges may not become apparent until later in childhood.

Examples of What to Look For:

In early childhood, lack of interest or engagement in unfamiliar activities; preferring to play alone; minimal eye contact; restricted play, e.g., lining up or dropping toys repeatedly; failure to respond to own name; possible loss of previously attained skills. In children, lack of interest in social connection, e.g. not seeking approval, not tuning in to surroundings; atypical use of pragmatic language.

* * *

Criteria: 4. Symptoms together limit and impair everyday functioning.

Common Components:

Social and behavioral idiosyncrasies consistently interfere with the student's ability to meet the expectable demands of home and school.

Examples of What to Look For:

Symptoms are present across contexts: symptoms significantly interfere with the smooth functioning of daily life at home (e.g., meals, bedtime, sibling relationships) and at school (e.g., engagement in curriculum, socialization, transitions).

* * *

Criteria: 5. Symptoms are not better accounted for by an intellectual or other global developmental delay.

Common Components:

Autism spectrum disorder is a broad and pervasive diagnosis and cannot be diagnosed if less pervasive diagnoses are able to address all manifest symptoms.

Examples of What to Look For:

Areas of differential diagnosis include social (pragmatic) communication disorder, social anxiety disorder, selective mutism, auditory processing or language challenges, attention deficit disorder, attention deficit–hyperactivity disorder, obsessive-compulsive disorder, Tourette syndrome, and many others.

* * *

Additional Considerations:

• An autism spectrum disorder diagnosis must be accompanied by a stated level of severity as follows: Level 1 ("requiring support"), Level 2 ("requiring substantial support"), or Level 3 ("requiring very substantial support"). The determination of level is dependent on the extent to which symptoms interfere with daily functioning.
• Autism can occur with or without intellectual impairment, language impairment, or other neurodevelopmental or behavior disorders. So, a student may have, for example, ASD with ADHD, ASD with OCD, or ASD with dyslexia. Or a student with ASD may be "twice-exceptional," meaning, in this case, that they have both ASD and superior intelligence or exceptional talents or skills.

Source: American Psychiatric Association, 2013. Author's Note: This table is for informational—not diagnostic—purposes. Autism can be diagnosed only by a licensed medical doctor (e.g. child psychiatrist, developmental pediatrician, or pediatric neurologist) or a PhD child psychologist or neuropsychologist, using resources and tools created specifically for the purpose of diagnosis. This process is often done in conjunction with a team that includes social workers and speech, occupational, and physical therapists, along with input from parents or guardians and school professionals.

---

Because the ASD diagnosis no longer uses subtypes to distinguish the many significant differences among individuals on the spectrum, diagnosticians must now elaborate on the severity of the symptoms. Doctors must specify whether the condition occurs with or without intellectual impairment; language impairment; a known medical or genetic condition or environmental factor; another neurodevelopmental, mental, or behavioral disorder; or catatonia. Along the same lines, diagnosticians now must also rate the social and behavioral symptoms as specifically as possible in order to characterize individuals and their degree of need, from Level 1 (requiring support) to Level 3 (requiring very substantial support) (APA, 2013).

The rest of this book explores these criteria in functional, school-related, "real-kid" terms. Even though all students diagnosed or classified with ASD meet the criteria, they do so in an endless variety of ways. That means that every individual on the autism spectrum is exactly that: an individual on the autism spectrum. Every such ...