Autism Spectrum Disorders…Labels, Categories, and Confusion: Part 2

Cartoon conversation about Aspergers

(This post and this photo originally appeared on www.ocslp.org)

In my last post, I introduced Gabriel and Vera, two young kiddos who both fall into the category of having “moderate-severe autism” but who are very different in terms of how their autism spectrum disorder is manifested. I wrote about the heterogeneity of autism, and stated that this “spectrum” of neurodevelopmental disorders is anything but clear-cut in terms of categories and labels, which makes it especially difficult for parents, professionals, and individuals to explain this condition to others and treat clinically.

To add to the confusion over categories and labels, the American Psychiatric Association (APA) has proposed changes to the Diagnostic and Statistical Manual of Mental Disorders (DSM-5) which eliminate the terms “Aspergers’ Syndrome (AS)” and “Pervasive Developmental Disorder-NOS (PDD-NOS)” entirely from the diagnostic codes used by psychologists and medical practitioners. Individuals with a former diagnosis of these conditions would now be considered to demonstrate an Autistic Disorder (Autistic Spectrum Disorder). The specific criteria for an Autistic Disorder would include:

  1. Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:
    • Marked deficits in nonverbal and verbal communication used for social interaction:
    • Lack of social reciprocity;
    • Failure to develop and maintain peer relationships appropriate to developmental level
  2. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:
    • Stereotyped motor or verbal behaviors, or unusual sensory behaviors
    • Excessive adherence to routines and ritualized patterns of behavior
    • Restricted, fixated interests
  3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

These proposed changes have stirred up a whole lot of controversy. Folks applauding these changes argue that the current diagnostic categories, labels, and criteria do not necessarily describe the actual symptoms present in individuals with autism spectrum disorders, so that diagnosis is made in terms of overall severity or based on a single area of development, such as whether the individual demonstrated a language disorder early on. It’s suggested that by eliminating AS and PDD-NOS, as well as collapsing the two social and communication criteria into one (i.e., “Social communication”), diagnosis would be based on the presence and severity of symptoms, which would result in greater accuracy and ease in making a diagnosis. Some parents of higher functioning kiddos have even commented that the single “autistic disorder” category might make it easier to access services and resources that were formerly denied their children due to the less severe nature of their symptoms.

Opponents to these changes argue that collapsing these categories into one autistic disorder further masks the heterogeneity of autistic spectrum disorders. In addition, individuals with Aspergers’ Syndrome (some referring to themselves as “Aspies”) may take pride in their differences and of the fact that many brilliant individuals (Einstein, Isaac Newton, and Thomas Jefferson to name a few) are thought to have had AS. As a result, these folks may be reluctant to refer to themselves as “autistic” or include themselves in the same category with individuals who have significant functional impairments.

As an SLP who has worked in the schools, a single diagnostic category is not altogether foreign to me. Public schools have been using “autistic-like” as a category to qualify kiddos for special education services for some time. Further, the terms “autism spectrum” and “the spectrum” are commonly used to describe individuals at all levels of functioning and with a myriad of symptoms that stem from a neurodevelopmental disorder.

My concern is that the variegated nature of autistic spectrum disorders may be overlooked. Special educators may attest that many ”autism programs” are unsuccessful because individuals with autism spectrum disorders are so different from one another. The same can be said for clinical treament models. Autism intervention and programming seem destined to fail when they lack the flexibility to address the whole child with his or her unique pattern of strengths and weaknesses. But flexibile and individualized programming equates to greater costs, and there’s the rub, especially in states teetering toward bankruptcy.

There is no easy or even clear solution to the confusion surrounding this perplexing spectrum of disorders we call “autism,” but I do have a few thoughts and observations which might be helpful.

  1. The unique set of symptoms and special needs of kiddos with an autism spectrum disorder require the development of a PROFILE by a TEAM OF PROFESSIONALS, which clearly articulates the child’s STRENGTHS and WEAKNESSES in all DEVELOPMENT DOMAINS. This, of course, is what IEP teams are intended to do, but many times they fall short due to a myriad of financial or organizational issues. In particular, public schools often lack the personnel to manage the social and emotional difficulties that present in kiddos with autism spectrum disorders, especially those who are higher functioning.
  2. GOALS AND SERVICES that are BASED ON this PROFILE are far more likely to succeed than those based solely on the diagnosis of “autism.” This is that flexibility I was talking about earlier.
  3. the PARTICIPATION of ALL PROFESSIONALS working with a child with an autism spectrum disorder is critical to the successful planning and implementation of an IEP. For example, the input of an SLP is important throughout the entire IEP meeting because the kiddo’s communication needs are present throughout the day. Further, much of “behavior” is actually communication-related. On the other hand, I’ve found it extremely helpful and necessary to be present when the OT is going over sensory issues. I’ve had many successful sessions after implementing some sensory activities prior to starting speech/language tasks. In short, the child benefits when the whole IEP team is present throughout the entire meeting.
  4. Last, ON-GOING COMMUNICATION among all members of the team (including parents, of course) is a key component to flexible and effective treatment and programming. This seems obvious, but is so difficult to actually implement. Large class sizes and caseloads make regular correspondence an insurmountable task.

I wish I could say that I’m less confused about autism spectrum disorders after organizing my thoughts to write a couple of blog posts. I really do. I adore the kiddos I work with and feel so frustrated when I can’t do more to help them. But I can’t blame it entirely on the caseload size, available time, limited resources, or additional training I myself may require. Autism, the very nature of it, is like an insidious tangle of holiday lights. Just when you think that you’ve managed to loosen a knot, another tightens elsewhere. But here’s the thing…the light itself is beautiful no matter the knots. And sometimes just standing back and admiring it’s delicate mid-tangle glow gives you the energy and patience you need to resume your challenging task.

Web References:

APA DSM-V Proposed Changes

APA “Report of the DSM-V Neurodevelopmental Disorders Work Group”

National Public Radio ”Aspergers Officially Placed Inside Autistic Spectrum”

Debra L. Brunner, M.A., CCC-SLP works as a private speech-language pathologist in Orange County, California and a part-time clinician at The Prentice School, a non-profit day school for children with language learning differences. Ms. Brunner’s blog, as well as information regarding her private practice, can be found at www.ocslp.org.

Autism Spectrum Disorders…Labels, Categories, and Confusion: Part 1

Organizational bins

(This post and this photo originally appeared on www.ocslp.org)

Gabriel could be one of Raphael’s angels with his curly locks and sweet full-lipped smile. Sitting at his TEACCH station, Gabriel whizzes through his sorting task with otherworldly speed. His classmate Vera, on the other hand, throws her work on the floor in frustration and begins a perfect recitation of the opening narrative from “Beauty and the Beast” while twirling her long red hair around each finger on her right hand. This reciting and twirling will not end without a tantrum until the entire repertoire has been repeated exactly four times.

I often think about Gabriel and his sorting. There’s comfort in sorting a mess into convenient containers, whether that mess is an overturned drawer, an in-box spilling it’s contents onto a nearby file-cabinet, or a mental tornado of “to do” items whirling in one’s consciousness at 2:00 a.m.

Sorting implies categories which imply labels which are mental constructs of anything and everything “out there” and “in here.” Categories arise when there are too many labels to manage. It’s a whole lot easier to ask your kiddo to “fold the clothes” instead of listing each and every item in the laundry basket.

Let’s get back to Gabriel and Vera for a moment. Gabriel has not uttered a word since he was 19 months, even though he had babbled delightful syllables containing a variety of sounds as an infant and could even say “ma” “da” and “no” on his first birthday. Gabriel independently communicates his needs/wants using PECS. Vera is highly intelligible and started reading at 2 1/2 but does not use language to communicate her basic needs unless she is prompted. Gabriel has “moderate-severe autism.” So does Vera.

These are two kiddos who share the same category of “autistic spectrum disorder” and the same sub-category of “moderate-severe.” Gabriel is also considered “non-verbal,” while Vera is considered “verbal.” Both kiddos have “sensory integration dysfunction” (another category), but Gabriel is “sensory seeking” and Vera is “sensory avoiding.” Vera is considered to have “mental retardation” (I really hope this label soon lands in the great big dumpster of offensive words). Gabriel, on the other hand, WAS thought to have MR, but his IEP team isn’t so sure about that anymore. Both have “behaviors” that interfere with their adaptive functioning.

Are you confused? Overwhelmed even? Yeah, me too.

To bend your mind a bit further, consider that these two kiddos are not the most severe, nor are they “mildly autistic” or “high functioning.” What happens when we include labels such as “Aspergers Syndrome,” “Pervasive Developmental Disorder, NOS,” and “Non-Verbal Language Disorder” (which by the way is NOT an autistic spectrum disorder and does NOT mean that an individual is non-verbal)? Confusion, confusion, and more confusion.

And now the American Psychiatric Association (APA) is proposing to scrap several of these labels altogether in exchange for “Autistic Disorder/Autism Spectrum Disorder” in the DSM-5 (more on that in my next post).

It’s no wonder that individuals, parents, families, and professionals find understanding, explaining, and treating autism so difficult. This “spectrum” of neurodevelopmental disorders (more on this too in my next post) is anything BUT clear-cut and defies convenient labels and categories.

As the saying goes, “You’ve met one person with autism, you’ve met one person with autism.” After working with at least 100 kiddos with an autism spectrum disorder and knowing at least 100 more, I have to wholeheartedly agree with this.

Debra L. Brunner, M.A., CCC-SLP works as a private speech-language
pathologist in Orange County, California and a part-time clinician at The
Prentice School, a non-profit day school for children with language
learning differences. Ms. Brunner’s blog, as well as information
regarding her private practice, can be found at www.ocslp.org.