Autism: The Checklist(s)
To appreciate the weight of social skills in the diagnostic process, it helps to understand how autism is diagnosed. Most forms of autism do not have easily discoverable physical markers, but a few do. For example, we know there are genetic markers for Rett’s Disorder (also known as Rett syndrome), a degenerative disorder that causes intellectual regression and neurological damage. Rett’s is sometimes classified by clinicians as an autism disorder. The vast majority of autism diagnoses cannot be made or confirmed by current medical science.
Being based almost entirely on observable behavioral traits, “autism” is a label for those traits. This means that autism could be caused by almost anything and that two autistic people might have entirely different underlying conditions. We simply do not know — and that is frustrating for researchers and families. The label autistic only tells us that a person has the traits mental health experts have decided to call autism.
The labels grouped under the Autism Spectrum Disorder heading are applied to a person only after a trained observer determines that the individual’s behavior displays autistic traits. In other words, how I interact with my environment is what led a specialist to classify me as a high-functioning autistic individual.
There is no official designation separating high-functioning autism from Asperger’s Syndrome or even a clear delineation between Asperger’s and PDD-NOS (Pervasive Developmental Disorder, Not Otherwise Specified). I believe there are differences between HFA and AS, as do some clinicians. Without knowing the causes of various autisms, we’re stuck with somewhat subjective labels.
To ensure various conditions are diagnosed as uniformly as possible, diagnosticians try to apply consistent criteria to their observations. In the United States and Canada, health professionals use the American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders to diagnose mental health conditions. This book is best known as the DSM. Elsewhere, the World Health Organization’s International Classification of Diseases (ICD) is used to diagnose autism.
In theory, these guides help standardize the language of mental health. When I write “autism” it should mean the same thing to most experts. Of course, it doesn’t, but that is the goal of the committees compiling these books.
Most autism diagnoses made since the 1990s have been based on relatively old checklists adopted nearly two decades ago by the APA and the WHO. Because autism research has continued, many clinicians rely on diagnostic criteria developed by autism specialists. However, the DSM and ICD provide the official checklists of traits for autism and citing the DSM is often required by schools, government agencies, and insurance companies to receive supports.
DSM5 and Evolving Autism Diagnostic Criteria
The DSM5 (curiously not referred to as the DSM-V) was published in 2013. Most clinicians recognize that the DSM-IV was long outdated and lagging research. There is significant debate regarding the revised criteria for autism.
All the “A” criteria in the new checklists reflect social deficits. The APA emphasis on whatever is “normal” social interaction is problematic to me and many others, but that reflects a long-standing situation in healthcare. What is the normal level of social interaction or desired social interaction?
Severity of Autism
The DSM5 includes a severity scale to help support professionals categorize the types of supports an autistic individual requires. Level 1 is considered minimally impaired, but still requiring some support, while Level 3 is described as including “severe impairments” to social interactions, relationships, and basic social skills.
In the DSM5, to be diagnosed with an ASD, you must demonstrate social impairments that limit your ability to function without extra supports. If you can and do function without any special measures, there is some question as to whether or not an autism diagnosis matches the new criteria for autism.
Autism Spectrum Disorder
Must meet criteria A, B, C, and D:
A. Persistent deficits in social communication and social interaction across contexts, not accounted for by general developmental delays, and manifest by all 3 of the following:
(1) Deficits in social-emotional reciprocity; ranging from abnormal social approach and failure of normal back and forth conversation through reduced sharing of interests, emotions, and affect and response to total lack of initiation of social interaction,
(2) Deficits in nonverbal communicative behaviors used for social interaction; ranging from poorly integrated verbal and nonverbal communication, through abnormalities in eye contact and body-language, or deficits in understanding and use of nonverbal communication, to total lack of facial expression or gestures.
(3) Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers); ranging from difficulties adjusting behavior to suit different social contexts through difficulties in sharing imaginative play and in making friends to an apparent absence of interest in people
| Severity level | Social communication |
|---|---|
| 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 |
| 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 how has markedly odd nonverbal communication. |
| 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. |
B. Restricted, repetitive patterns of behavior, interests, or activities as manifested by at least two of the following:
(1) Stereotyped or repetitive speech, motor movements, or use of objects; (such as simple motor stereotypes, echolalia, repetitive use of objects, or idiosyncratic phrases).
(2) Excessive adherence to routines, ritualized patterns of verbal or nonverbal behavior, or excessive resistance to change; (such as motoric rituals, insistence on same route or food, repetitive questioning or extreme distress at small changes).
(3) Highly restricted, fixated interests that are abnormal in intensity or focus; (such as strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interests).
(4) Hyper-or hypo-reactivity to sensory input or unusual interest in sensory aspects of environment; (such as apparent indifference to pain/heat/cold, adverse response to specific sounds or textures, excessive smelling or touching of objects, fascination with lights or spinning objects).
| Severity level | Restricted, repetitive behaviors |
|---|---|
| Level 3
“Requiring very substantial support” |
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. |
| Level 2
“Requiring substantial support” |
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. |
| Level 1
“Requiring support” |
Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper inde |
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.
Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.
DSM-IV and Autism Diagnoses
The DSM, Revised Fourth Edition, also known as the DSM-IV-TR, was published in 2000. The DSM-IV, before minor revisions, was first adopted by the APA in 1994. The tenth edition of the ICD, known as ICD-10, was formally adopted by WHO member nations in 1994.
The DSM-IV criteria for autism are in the form of a complex multi-part checklist. To be diagnosed as autistic, an individual is observed during a battery of intellectual, physical, and emotional tests. The trained specialist then compares his or her observations, along with the results of the administered tests, to the criteria listed in the DSM-IV.
Below are the current criteria for autism with the items related to social connections and relationships appearing in bold to illustrate how important these are to diagnosticians. Many of the items not in bold also affect our relationships with others and are discussed in future chapters, but for now let’s focus on the language of the DSM-IV.
Autistic Disorder
A. A total of six (or more) items from (1), (2), and (3), with at least two from (1), and one each from (2) and (3):
(1) qualitative impairment in social interaction, as manifested by at least two of the following:
a) marked impairment in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body postures, and gestures to regulate social interaction
b) failure to develop peer relationships appropriate to developmental level
c) a lack of spontaneous seeking to share enjoyment, interests, or achievements with other people (e.g., by a lack of showing, bringing, or pointing out objects of interest)
d) lack of social or emotional reciprocity
(2) qualitative impairments in communication as manifested by at least one of the following:
a)delay in, or total lack of, the development of spoken language (not accompanied by an attempt to compensate through alternative modes of communication such as gesture or mime)
b) in individuals with adequate speech, marked impairment in the ability to initiate or sustain a conversation with others
c) stereotyped and repetitive use of language or idiosyncratic language
d) lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level
(3) restricted repetitive and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
a) encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
b) apparently inflexible adherence to specific, nonfunctional routines or rituals
c) stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole body movements)
d) persistent preoccupation with parts of objects
B. Delays or abnormal functioning in at least one of the following areas, with onset prior to age 3 years:
(1) social interaction,
(2) language as used in social communication, or
(3) symbolic or imaginative play.
C. The disturbance is not better accounted for by Rett’s Disorder or Childhood Disintegrative Disorder.
Recall that I mentioned that Rett’s Disorder is sometimes still grouped with ASDs. This reflects the history of autism and our evolving understanding of ASDs. One of the questions unanswered by the APA and medical experts is how we will label various autisms as their unique causes are determined. If we know the cause, are the traits no longer “autism” in the DSM? The phrase “not better accounted for” leaves many questions unanswered.
Alternative Criteria for Autism and Asperger’s Syndrome
The alternative criteria autism experts have developed stress social challenges and behaviors that often affect social connections. Many of the teens and adults with whom I speak have been diagnosed by clinicians familiar with these alternative criteria. One reason for this might be that many of the individuals I meet were diagnosed in adulthood, by clinicians specializing in Asperger’s Syndrome (AS) and high-functioning autism (HFA).
Lorna Wing is one of the leading experts on Asperger’s Syndrome. Her criteria for ASDs are widely used by clinicians working with teens and adults. Characteristics of AS suggested for diagnostic purposes by Wing (1981; qtd Bowler 2007), include the following:
- Impaired non-verbal communication;
- Flat intonation and absent or large, clumsy gestures;
- Impairment of two-way social interaction;
- Repetitive activities and resistance to change;
- Poor motor coordination;
- Clumsy, odd gait and posture;
- Circumscribed interests on narrowly defined or unusual topics; and
- Bullied at school because of perceived eccentricity.
Again, the social deficits are emphasized. What is striking to some parents and educators is the inclusion of bullying within the diagnostic criteria. Sadly, one of the things I have learned from students and adults with ASDs is that severe bullying at school or work is often what leads these individuals to seek help. The bullying can be so severe it leads to anxiety and depression.
The criteria offered by Wing is also similar to a more detailed criteria for ASDs developed by Christopher Gillberg’s (1989, 2000). If you are interested in learning about alternative diagnostic criteria for ASDs, several great books and articles are available. Many of the books appear in the bibliography because I use them often in my own research.