"Recovery" or "Optimal Outcome" for those with autism: what does it really mean?
Michelle Garcia Winner
The goal in diagnosing developmental learning challenges is to identify one or more types of treatment that, when applied across time, lead to an improved outcome for the student. With this in mind, it was encouraging to read about a study published recently that documents a small (but compelling) percentage of students who were diagnosed with ASD before 5 years old and are now reported to have evolved to a point in their social learning and related social skills that they are described as having “recovered” from autism (Fein et al., 2013). Researchers of the study refer to this as an “optimal outcome” (OO).
Outlined below is a brief summary of the characteristics which qualified a subject with ASD for the Fein et al. study:
+ Having a verbal, nonverbal, and full-scale IQ standard score of 77 or higher
+ Early language delay (no words by 18 months or no phrases by 24 months)
+ Written documentation of an ASD diagnosis prior to age 5 and verified in a written report
+ Confirmation that the written report adequately described symptoms of autism beyond just having the diagnosis.
After children were given the diagnosis they received treatments and/or, with maturity, these same subjects then were considered to have optimal outcomes when they:
+ Were described by their parents to have typically developing friends
+ Failed to qualify as having ASD on the Autism Diagnostic Observation Schedule (ADOS) (Lordal., 2000); this was further validated by having an experienced clinician observe the videotapes from the ADOS administration to qualitatively define the subject as no longer having autism
+ Had scores greater than 77 on the Communication and Socialization Domains of the Vineland Adaptive Behavior Scale (see below)
+ Were fully included in regular education classrooms with no one-on-one assistance and no special education services to address autism deficits (e.g., no social skills training). However, participants could be receiving limited special education services or psychological support to address impairments not specific to ASD, such as attention or academic difficulties.
The study went on to describe that “lifetime results suggest that the OO group had somewhat milder autism in early childhood.”
All of the students in the OO group were compared to a group of students with ongoing high functioning autism (HFA) as well as to a typically developing (TD) group of students. A range of tests were given across these different populations and the researchers commented:
“…the fact that impairments on facial recognition, socialization, communication, and formal language tests were not found does not necessarily mean that subtle residual deficits do not exist in the OO group. An extensive battery of tests of cognitive ability, language, academics, and executive function are being examined for possible weaknesses in the OO group. Although ADOS and Vineland scores revealed no differences between the OO and TD groups on social functioning, more fine-grained coding of social behavior might detect residual awkwardness not captured by ADOS coding; we are exploring this possibility. To conclusively demonstrate normal social functioning, peer interaction and quality of friendships would also have to be shown to be typical, using ecologically valid observation measures.”
Our experience matches data presented in this study. Over the years we have seen a number of students evolve from being diagnosed with autism and demonstrating behaviors that were indicative of autism when in preschool to having much more subtle social learning challenges. As disarming as the initial diagnosis is for parents, for some if not many of these students’ families, it was also challenging when the autism diagnosis was removed. Parents discovered that the child was no longer eligible for services due to the student’s symptoms being too “mild” or “within normal limits” on a standardized test.
As clinicians, we noted this disparity in needs vs. services and over time, Social Thinking has developed a stronger focus on this group no longer considered to have autism. We refer to them as “Strong Emerging Social Communicators” or, those who have even more subtle social challenges as “Nuance Challenged Social Communicators.” These and other social communication profiles are outlined in more detail in our Social Thinking-Social Communication Profile™ (Winner, Crooke and Madrigal, 2012), a tool that represents the wide spectrum of abilities that exist in children and adults. Find a free article on the ST-SCP posted on our website.
These profiles arose through observation of the students with whom we worked. We noticed a lack of similar social functioning across students diagnosed with similar DSM-IV labels such as autism, Asperger Syndrome, ADHD, etc. We also felt there exists a spectrum of social learning abilities that range from the most socially incompetent on one end to highly competent social learners on the other. By classifying students based on their social functioning (rather than their diagnosis, behavior or communication profile), we were able to design more finely tuned social treatment programs that we felt better met the direct needs of our students. Furthermore, in describing this as a social learning spectrum we were able to draw attention that we also felt there are not clear, hard-lined distinctions between those we considered “high functioning ASD” versus those we considered “quirky,” “shy,” or “socially anxious.”
What does it mean to us when a person is considered to be “recovered” or has an “optimal outcome”?
Often this means the student has more nuanced social learning challenges. He or she probably has greater access to join in all the activities of the typically developing peer group than would a more socially unaware person. However, what is important to note is that these individuals may not be as easily accepted by their peers as adult caregivers (parents and professionals) would like to think. It also means there are less standardized instruments available to identify their more nuanced social learning needs, and even though real challenges may still exist, they are seldom addressed with any level of concrete teaching.
From our experience, those with more obvious social learning challenges are more naturally mentored by their TD peers. Those who have more nuanced or subtle social challenges are the first to be alienated and bullied. They also are more socially self-aware and possess a stronger social attention span than their more socially limited peers with Challenged or Emerging Social Communication skills. As a result they can manifest pressing higher level of social anxiety and depression, which comingles with their social learning challenges.
Something our community is weak to recognize with regard to this wider spectrum of social functioning is how we have different social expectations (higher) for those who have more nuanced social challenges (those most likely not to be diagnosed as ASD) than we do for individuals with more obvious social challenges. Typically developing folks and many with higher level social learning challenges are keenly aware of the social abilities of their peers. They notice the person who is more or less out of step with the peer group, or who can’t seem to navigate the social arena. This means that our students who no longer qualify as having autism/ASD – but who may still have very subtle but significant social issues - may not have an easier road to travel once they are “recovered.” When it comes to tackling the larger social arena with their typically developing peers, they may still flounder.
If we widen our lens and look to the upcoming edition of the DSM-5, it is our guess that those who may be diagnosed in the future as Social Communication Disordered will also be a very nuanced group of socially challenged folks.
What does all this mean for treatment?
From our perspective it means those who have “recovered” from autism or are considered having an “optimal outcome” are likely to still require significant services to help them with their social learning, executive functioning, and mental health needs. Optimal outcome and recovery do not imply to us that there is no longer a need for treatment. Instead it implies the treatment needed is just far more sophisticated than the lessons we originally presented to help students when they were labeled with autism or ASD.
The nature of the treatment also has to shift from being behaviorally based to being based in cognitive behavioral therapy, meaning students shift from learning the social rules through behaviorism to learning the social nuance through methods such as those Social Thinking has to offer.
Fein, D., Barton, M., Eigsti, I. M., Kelley, E., Naigles, L., Schultz, R., Stevens, M., Helt, M., Orinstein, A., Rosenthal, M., Troyb, E. & Tyson, K. (2013). Optimal outcome in individuals with a history of autism. Journal of Child Psychology and Psychiatry, Vol 54, #2, pages 195-205.
Courtesy of Social Thinking