Diagnosing Autism, Part 1: The Rules of the Game
Even before the release of the newest revision to the DSM V was announced, many in the autistic community have expressed concerns about the way we approach the diagnosis of autism. I think this is worth breaking down, so we can think about how we diagnose autism and who benefits from the current system.
Diagnostic Criteria for Autism Spectrum Disorder
The DSM V - TR establishes the following criteria for the diagnosis of autism.
To meet diagnostic criteria for ASD according to DSM-5, a child must have persistent deficits in each of three areas of social communication and interaction (see A.1. through A.3. below) plus at least two of four types of restricted, repetitive behaviors (see B.1. through B.4. below).
A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by all of the following, currently or by history (examples are illustrative, not exhaustive; see text):
1. Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.
2. Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.
3. Deficits in developing, maintaining, and understand relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative play or in making friends; to absence of interest in peers
B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):
1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypes, lining up toys or flipping objects, echolalia, idiosyncratic phrases).
2. Insistence on sameness, inflexible adherence to routines, or ritualized patterns of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same food every day).
3. Highly restricted, fixated interests that are abnormal in intensity or focus (e.g., strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
4. Hyper- or hyporeactivity to sensory input or unusual interest in sensory aspects of the environment (e.g. apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).
C. Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).
D. Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.
E. These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.
Revising Criteria
Despite much concern from autistic advocates, the text revision of the DSM V wasn't earth-shattering. Things are still essentially as they were before. But, rest assured, there will be a DSM VI. Until then, we need to consider how we view autism and autistic people, so that further revisions reflect our expanding understanding of how neurotypes influence our lives.
All For One
The DSM V was revolutionary in viewing autistic people as a unified group, regardless of individual variations within the neurotype. The recognition of similarities has, in some ways, unified the autistic community. But it also created great consternation from those who benefit from our separation into groups.
The divisions of high- v. low- functioning, Asperger's Syndrome v. Autistic Disorder, mild v. severe autism serve a purpose to those who advocate for these labels. They divide us into worthy and unworthy. In each dichotomy, one group is determined to be worthy of support services, while the other is worthy of social inclusion. One is a burden, while the other is a benefit to society. It's gross, and it's wrong. But in a society that views us as worthy of concern only in relation to our financial contributions, it's not unexpected.
Too Many for Comfort
The other criticism of the DSM V criteria has been in their application. I can't count the number of professionals who have expressed their belief that autism is over-diagnosed. I've argued with some who would rather stack multiple diagnoses on a child than give the single diagnosis that would explain it all. Expressive Speech Delay, ADHD, Sensory Processing Disorder, Social Anxiety, and Oppositional Defiant Disorder all in one kid with no hesitation. But autism, which, by definition includes communication delays, attention differences, sensory processing differences, and resulting behaviors? No way.
On days I'm feeling optimistic, I want to assume that these professionals fear the power of the label. Other days, I recognize the reality that giving an autism diagnosis grants a child access to additional support services. And like it or not, we have to acknowledge the cost of those services. As providers, we often act as gatekeepers for service provision. It's the way of the world right now.
References:
American Psychiatric Association. Diagnostic and statistical manual of mental disorders. 5th ed., text revision. Arlington, VA: American Psychiatric Association; 2022.