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Making Sense of the DSM-5: "Severity Levels" of Autism

“My granddaughter (7yrs old) was just diagnosed with autism and level 1.5. What does that mean and what's the differences between that and aspergers?”

To answer this question, let’s first look at the new criteria for Autism as described in the DSM 5:

A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history):
  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 understanding 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:
  1. Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, 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 hypo-reactivity 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.

The DSM 5 specifies the severity levels of Autism as follows:

Level 1: Requiring Support—
  • Social Communication: With supports in place, deficits in social communication cause noticeable impairments. Has difficulties initiating social interactions, and demonstrates clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions.
  • Restricted Interests and Repetitive Behaviors: Rituals and repetitive behaviors (RRB’s) cause significant interference with functioning in one or more contexts. Resists attempts by others to interrupt RRB’s or to be redirected from fixated interest.

Level 2: Requiring Substantial Support—
  • Social Communication: Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with social supports in place; limited initiation of social interactions and reduced or abnormal response to social overtures from others.
  • Restricted Interests and Repetitive Behaviors: RRB’s and/or preoccupations or fixated interests appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress or frustration is apparent when RRB’s are interrupted; difficult to redirect from fixated interest.

Level 3: Requiring Very Substantial Support—
  • Social Communication: 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.
  • Restricted Interests and Repetitive Behaviors: Preoccupations, fixated rituals and/or repetitive behaviors markedly interfere with functioning in all spheres. Marked distress when rituals or routines are interrupted; very difficult to redirect from fixated interest or returns to it quickly.

So as you can see, Level 1 would be considered high-functioning Autism. Disability will be common among children with Level 3 Autism and non-existent in Level 1 (where children currently diagnosed with Aspergers will be reclassified).




The new method for diagnosing Autism replaces the five prior diagnoses: Asperger Syndrome, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), Childhood Disintegrative Disorder, and Autistic Disorder. If a child has a pre-existing diagnosis of any of these disorders, he or she is automatically considered to have an Autism diagnosis.

Children who are being newly diagnosed (or re-evaluated) and do not fit into the new criteria for Autism may receive a new diagnosis called Social Communication Disorder. This appears to be an extremely mild version of Autism (the child does not have sensory issues or repetitive behaviors) and is similar in many ways to the old PDD-NOS.

The DSM-5 defines Autism as a single “spectrum disorder,” with a set of criteria describing symptoms in the areas of social communication, behavior, flexibility, and sensory sensitivity. If a child has symptoms in these areas, he or she will probably be diagnosed as “on the spectrum.” When a physician diagnoses a youngster with Autism, it's important to know the severity of the disorder. If the physician does give his/her opinion on the severity, it’s with the disclaimer that it’s only an opinion, not a medical diagnosis. Whether the opinion is that it's severe, or that it's mild, it has no bearing on the actual diagnosis. A youngster with Autism deemed as mild is just as autistic as one believed to be severe. The medical diagnosis for both is exactly the same.

Autistic kids have issues with social interactions, behavioral issues, restricted interests, self-stimulatory activities and sensory issues. So severity in each of these categories needs to be determined to assess severity as a whole. While the severity of Autism is not a diagnosis, physicians who specialize in Autism can tell where a youngster is in relation to the other kids they have treated. The same youngster will get different opinions of severity from different people. Since determining a “Level” is subjective and not a technical diagnosis, there is no right or wrong answer.

The three Autism “levels” raise many questions, for example:
  • Depression and anxiety are very common traits among children on the Autism Spectrum, and this can cause major challenges in typical settings. If a child is bright, verbal and academically capable – but moody and anxious, and therefore in need of significant support in order to function at school – where does he or she fit in?
  • Some children on the Autism Spectrum do fine at home, but need help in the classroom. Others do well in the classroom, but not at home (where there’s less structure). So, in which social settings do children at various levels require “support?”
  • Some autistic children have received adequate therapy to appear “close to normal” when interacting with adults – but have significant problems when playing/interacting with their friends. Others get along well with peers, but not adults (especially authority figures). What type of support do they need?

The severity of Autism changes not only day to day, but also situation to situation. For example, autistic kids may exhibit significant social deficits when trying to play with their peers on the playground -- but in the classroom, they may blend in perfectly with their peers. Autism severity is simply a place to start. It’s something to use to help the youngster make progress by getting more services and to help describe the youngster to therapists, teachers, etc. It’s just a snapshot, not something that reflects the future or the youngster in all situations.

Resources for parents of children and teens on the autism spectrum:
 
 

Sources:
  • American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC.
  • American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC.
 
 
Best comment: Thank you for the great explanations to the new DSM-5. I shared this on my FB page -- your blogs (and your book) are so helpful to me as the mom of a 15-year old Aspie. After reading this, I actually kind of like the new classification. My son wasn't "officially" diagnosed with high-functioning autism until he was 14, because prior to that he had been just diagnosed as ADD, bipolar, and OCD, although they did diagnose correctly the sensory processing disorder when he was 7 (with "borderline Aspergers" at that time as well). He began ABA therapy for the first time just 8 months ago, and started at a non-public school (specifically for kids with autism) five months ago. Between those two major changes in his life, we have seen remarkable improvements in his daily functioning. So it seems to me that it is possible to transition from one level to another due to outside influences, don't you think? Thank you again for such a great post!
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