Changes to the DSM-V

Many parents are unsure of what the changes of ASD criteria in the DSM-V will mean. Catherine Lord, part of the committee drafting the new criteria recently gave a presentation at the HELP Group, which I was fortunate enough to attend. As a big part of FACT is being able to educate the community, and we’d like to shed some light and clarify what these changes mean for families living with ASD. While the proposal to group Autism, High Functioning Autism, Asperger’s and PDD-NOS sparked a great deal of concern within the Autism community, these changes are not negative at all, and have been carefully drafted to provide more accurate diagnoses and more appropriate support.

There are several reasons for these proposed changes. The draft committee for the DSM-V criteria recognize that that Autism contains multiple components many of which the DSM-IV fails to address. While the new criteria upholds that an ASD diagnoses is based on behavioral excesses and deficits, they go one step further, acknowledging that behavior is only one component. Individuals on the spectrum typically struggle with some degree anxiety, sensory issues, motor problems, sleep issues, GI problems, as well as other co-occurring conditions. These challenges are all things that need to be taken into account in order to provide an accurate diagnosis.

The main changes within the proposed DSM-V criteria are these:

Autism, PDD-NOS, High Functioning Autism, and Aspergers Syndrome will all be classified as ASD’s. There will be one spectrum- individuals either fall on the spectrum or they don’t. All individuals with clinical levels of social-communicative impairment and restricted, repetitive behavior will meet criteria for autism spectrum disorder and their individual levels of intellectual and language functioning will be noted alongside this diagnosis. (This last piece is critical because it explicitly addresses issues of expressive language in individuals who fall on the spectrum). A current requirement within the DSM-IV is that symptoms must have been present prior to age three. The new criteria omits this age cutoff, stating that symptoms must have been present in early childhood but “may not be fully manifested until social demands exceed limited capacities”. Dr. Lord explained that the committee felt this was an important change, as often children have presenting symptoms as toddlers, but they are frequently undocumented by pediatricians, or un-noticed by parents who are not sure what to look for.

Many families expressed concern that the new criteria would result in the loss of services. This is not the case. Simply stated, the draft proposals don’t aim to change who receives a diagnosis or change diagnoses that have already been established.

Rather, the goals are:

  • To provide more accurate descriptions
  • To provide a framework than can be applied across all skill-levels
  • To allow separate ways of describing behavior and noting etiology and associated conditions
  • To recognize neuro/biological conditions that might be present, but to maintain that ASD is defined by BEHAVIOR
  • To address both the presence of “atypical” behaviors and absence of other behaviors are required to make a diagnosis.
  • To recognize that autism is a developmental disorder- its presentation changes along with development

Why the revisions?

  • The drafting committee feels there are areas that aren’t currently being considered, such as: aggression, ADHD, OCD, motor problems, sleep issues, immune dysfunctions, GI problems — these are all things that should be looked at as well.
  • There has been a recent influx of referrals of older individuals who come in because of co-occurring conditions (depression, anxiety) when ASD is the underlying cause.
  • There is also pressure on doctors and pediatricians to make faster diagnoses. Doctors need to be able to screen consistently, quickly, and accurately.
  • Individuals on the autism spectrum who meet expected language milestones in the first three years of life have the same outcome in adolescence and adulthood as those who are significantly delayed in early language — if one compares groups of the same developmental level.
  • It is often difficult to establish whether single words were spoken before age 2 and phrases by age 3, as required for the Asperger diagnosis. Additionally, when individuals come into a clinic in middle childhood or later and parental memory may be understandably vague. For the increasing number of people diagnosed in adulthood, the issue is even more problematic

A major concern for the workgroup is that no individual currently diagnosed with Asperger syndrome or PDD-NOS who needs support should lose that support because of this change. We are striving to ensure that the new criteria for autism spectrum disorder — and the examples in the accompanying text — are thoughtful and thorough, taking into account the full range of manifestations across all ages and developmental or intellectual levels.

Most importantly and most simply stated, the draft proposals don’t aim to change who receives a diagnosis or change diagnoses that have already been established.

A Parent’s Perspective

A Fact Family parent had the following to say about the proposed criteria.

It seems to me that the new DSM V criteria for autism are actually an improvement over the old DSM IV criteria in several ways:

  1. Age 3 is no longer the arbitrary cut-off for onset of symptoms. The new criteria state “symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities) (emphasis added). This explicitly acknowledges that not all social problems are readily apparent by age 3. For those of us with “higher functioning” children, this flexibility opens the door to getting a valid diagnosis at ages 5, 6 or later, at which point social demands may very well exceed the child’s capacities.
  2. Sensory differences are now an official part of the diagnostic criteria. This is a much-welcomed addition and acknowledgment of what most people have said all along: Those on the autism spectrum perceive and process sensory input differently than neurotypical individuals.
  3. “Speech delay” is no longer an explicit criterion (and which was, in fact, often the only distinction between an autism and an Asperger’s diagnosis). DSM-IV seemed to overemphasize the role of spoken language by calling out language impairment in multiple ways. DSM V, in contrast, focuses more broadly on impairments in social communication and social interaction. Although language remains one component of that, it has been de-emphasized in favor of other factors, such as social-emotional reciprocity (which encompasses all aspects of social interaction), nonverbal communication, and relationship development.
  4. The revised language of DSM V is more broadly applicable to adults, as well as to “higher functioning” children. For example, DSM IV lists “lack of varied, spontaneous make-believe play or social imitative play appropriate to developmental level” as one criterion. However, that language is pretty specific to childhood. The corresponding language for DSM V, embeds “imaginative play” in the larger context of relationship development. The new language reads (criterion in italics, my comments below):
    • Deficits in developing and maintaining relationships appropriate to developmental level. 
      This language is equally applicable to children and adults; it also acknowledges that some people may be able to make friends, but not keep them. Also note that the word “relationships” is more expansive than “peer relationships,” which is the term used DSM IV. “Relationships” can apply to work relationships and other situations that do not necessarily involve peers (e.g., with subordinates and supervisors, teachers, doctors, etc.).
    • (beyond those with caregivers)
      If I am reading this correctly, it looks like an acknowledgement that someone can have a relationship with (or be affectionate towards) a parent or other caregiver, and yet still be autistic.
    • ranging from difficulties adjusting behavior to suit different social contexts
      Again, this language is equally applicable to children and adults. I also like the implicit acknowledgement that a person may be able to function in one context, but that problems may arise when they are required to adjust their behavior to function in a different context. A child may do well in a highly-structured classroom setting but not be able to function independently on the playground.
    • through difficulties sharing imaginative play
      I think this language is more expansive than the DSM IV’s “lack of varied, spontaneous make-believe play.” Some children may engage in solo “imaginative play,” but it may be stereotyped and repetitive, and/or lack the flexibility of the typical give-and-take of reciprocal play. Some diagnosticians look at any sign of imagination as grounds for ruling out an autism diagnosis. The revised language suggests that the quality of play is as important as its presence or absence.
    • and in making friends
      This is self-explanatory.
    • to an apparent absence of interest in people.
      “Classic” autism.
  5. The new language for Category A more clearly illustrates that a range of behaviors meet DSM criteria. The way it is currently formatted on the DSM V website makes it difficult to read, so I re-wrote category A below and marked it up in a way that I think might make it easier to parse. Bolded words support the concept of a range, while the bulleted sub-points appear to correspond to the proposed severity levels. (I have annotated in brackets what severity level I think the example might correspond to: “mild” = level 1, “moderate” = level 2, and “severe” = level 3.)

    So if I understand correctly, a person would simply have to fall somewhere within the behavioral range of A1, A2, and A3 (i.e., you have to satisfy only one of the bulleted sub-points under A1, A2, and A3—not all of them—or fall somewhere along that range) in order to meet that criterion. It doesn’t make sense that a person would have to display all of the behaviors within a given range because some of them are contradictory. For example: How could you display an “abnormal social approach” if you have a “total lack of initiation of social interaction”?
    So A1, for instance, reads:

    • Deficits in social-emotional reciprocity ranging from
    • [mild] abnormal social approach and failure of normal back and forth conversation through
    • [moderate] reduced sharing of interests, emotions and affect and response to
    • [severe] total lack of initiation of social interaction.

    Similarly, you can parse A2, which reads:

    • Deficits in nonverbal communicative behaviors used for social interaction; ranging from
    • [mild] poorly integrated verbal and nonverbal communication, through
    • [moderate] abnormalities in eye contact and body-language or
    • [moderate] deficits in understanding and use of nonverbal communication, to
    • [severe] total lack of facial expression.

    And then A3 reads:

    • Deficits in developing and maintaining relationships, appropriate to developmental level (beyond those with caregivers): ranging from
    • [mild] difficulties adjusting behavior to suit different social contexts through
    • [moderate] difficulties in sharing imaginative play and in making friends to
    • [severe] an apparent absence of interest in people.
  6. The DSM V criteria are now accompanied by a severity index. In principle, that seems to be appropriate. However, it remains to be seen how the severity index will be applied in practice, and what effect it will have on whether (or to what extend) individuals qualify for support services.
  7. There has been concern over whether how fewer individuals will qualify for an autism diagnosis due to the new requirement that they manifest at least two restricted, repetitive patterns of behavior under Category B. However, Category B now also includes unusual/adverse responses to sensory input. Given that the vast majority of people with autism display some sort of atypical sensory responses (and will presumably meet that criterion), in effect the requirement is still for only one restricted, repetitive pattern of behavior.

In closing, I think a careful reading of the revised autism criteria for DSM V indicates that there is much to like. Although there is still room for concern over how the revised language will be interpreted and applied, I believe the revised language represents an attempt to capture the nuances of a spectrum disorder in a way that does justice to the individuals who have it.

Tamara Haas