May 24, 2018

Categories: ASD

Optimal Outcome for Kids with Autism Spectrum Disorder (ASD)

By: Nicole Mathes, M.A., Amy Nasamran, Ph.D., & Suzi Naguib, Psy.D.

Although Autism Spectrum Disorder (ASD) is generally considered a lifelong disability, new research suggests that a small percentage of individuals with ASD may potentially lose the diagnosis over time. Researchers have begun to refer to these individuals as demonstrating an “Optimum Outcome” from an early ASD diagnosis.

Based on a few studies that have been conducted so far, Optimum Outcome among individuals with ASD has been defined as:

  • Previously meeting diagnostic criteria for ASD following a comprehensive, gold-standard diagnostic assessment (e.g., using the Autism Diagnostic Interview, Revised [ADI-R], the Autism Diagnostic Observation Schedule, 2nd Edition [ADOS-2], and measures of adaptive and cognitive functioning)
  • No longer meeting criteria for ASD based on gold-standard diagnostic assessment
  • Participating in general education classrooms without the help of an aid
  • Demonstrating a full-scale IQ greater than 70 (Fein et al., 2013; Kelley et al., 2010).
What is the evidence of individuals diagnosed with ASD achieving Optimum Outcome?

A few researchers have suggested that losing an established ASD diagnosis is possible for a small minority of children (Sutera et al., 2007; Turner & Stone, 2007). According to some researchers children who achieve Optimum Outcome tend to have higher cognitive functioning and milder ASD symptoms in early childhood.

For example, a group of researchers followed 85 children with ASD for almost two decades and examined their functioning and abilities at ages 2, 3, and 19. These researchers found that about 9% (8 participants) had overcome core difficulties characteristic of ASD and no longer met criteria for an ASD diagnosis by age 19 (Anderson, Liang, & Lord, 2014). The 8 participants who had Optimum Outcome demonstrated average or above average intellectual abilities, had fewer repetitive behaviors between ages 2 and 3 compared to the other participants, were less hyperactive, and received intensive early intervention services before age 3 (Anderson et al., 2014).

Additionally, researchers at the University of Connecticut compared individuals achieving Optimum Outcome with typically developing peers and high-functioning individuals with ASD. These researchers looked at socialization, communication, language, and facial recognition abilities among all groups and found very few differences between those achieving Optimum Outcome and their typically developing peers. In fact, individuals in the Optimum Outcome group were found to demonstrate average functioning across all measures of ability (Fein et al., 2013).

Researchers note that individuals with ASD who achieve Optimum Outcome and lose the ASD diagnosis, however, may still experience subtle difficulties with language, attention, executive and/or emotional functioning. For example, in a follow-up study, researchers further examined the same Optimum Outcome group compared to typically developing peers and those with high-functioning ASD and found that while the Optimum Outcome group did not demonstrate social and communication impairments, many of these individuals exhibited social difficulties that are often associated with attention difficulties (Orinstein et al., 2014). In a similar study, researchers looked at the executive functioning skills (i.e., skills that help the brain organize and act on information) of all three groups and found that those achieving Optimum Outcome differed on measures of impulsivity, problem-solving, working memory, and planning—difficulties often associated with attentional issues—compared to their typical peers (Troyb et al., 2013).

So what do these findings all mean?

Although a few studies conducted so far have indicated that achieving Optimum Outcome is possible for a small percentage of children who are diagnosed with ASD, more research is needed. It is important to note that, overall, individuals achieving Optimum Outcome demonstrated milder autism symptoms in early childhood in regards to social functioning, but not for communication or repetitive behaviors, compared to high-functioning individuals with ASD. Additionally, those achieving Optimum Outcome had IQs in the high average range, suggesting that they may have been able to compensate for possible social and communication deficits.

Additionally, although difficulties with social and communication, language, and facial recognition abilities were not found in the small groups of individuals achieving Optimum Outcome so far, there may be subtle residual difficulties that these individuals continue to experience. For example, individuals achieving Optimum Outcome may continue to have difficulties with peer interactions or the quality of their friendships and relationships. Further aspects of social and behavioral functioning need to be examined before concluding that individuals achieving Optimum Outcome truly demonstrate normal social functioning.

Additionally, many of the individuals achieving Optimum Outcome were found to exhibit difficulties related to attention and executive functioning. More research is needed to understand whether ASD early in life may resolve into clinically subtle social difficulties that include attention-based difficulties or whether attention symptoms are due to a comorbid disorder (e.g., ADHD).

Perhaps one of the most important takeaway messages from the research conducted so far is the importance of early intervention. The majority of individuals achieving Optimum Outcome (56%) were reported to have received Applied Behavior Analysis (ABA) therapy between the ages of 2 and 3, compared with only 7% of children with high-functioning ASD. These findings highlight the benefits of early intervention for all children with ASD. However, receiving ABA services does not mean that children with ASD will eventually come off the spectrum (about 40% of individuals achieving Optimum Outcome did not receive ABA services).

Overall, questions remain about the existence, frequency, and interpretation of Optimum Outcome. Much more research is needed to better understand the phenomenon of Optimum Outcome in ASD. It is important to keep in mind that there is a wide range of outcomes for individuals with ASD – Optimum Outcome is only one kind of positive outcome, but it is not the only good outcome. For the majority of individuals with ASD, Optimum Outcome is not a common outcome. Families are encouraged to continue focusing on improving functional independent outcomes for children with ASD. Regardless of age and ability level, early intervention (e.g., Applied Behavior Analysis) can be extremely beneficial in helping individuals with ASD make significant progress in behavior and social skills. Evidence suggests that the earlier the intervention, the better the outcome! Moreover, family support and acceptance of the ASD diagnosis is crucial to the success and quality of life of individuals with ASD.

References:

Anderson, D. K., Liang, J. W., & Lord, C. (2014). Predicting young adult outcome among more and less cognitively able individuals with autism spectrum disorders. Journal of Child Psychology and Psychiatry, 55(5), 485-494. doi:10.1111/jcpp.12178

Fein, D., Barton, M., Eigsti, J., Kelley, F., Naigles, J., Schultz, R.T., & Tyson, K. (2013). Optimal outcome in individuals with a history of autism. Journal of Child Psychology and Psychiatry, 54(2), 195-205.

Orinstein, A.J., Helt, M., Troyb, E., Tyson, K.E., Barton, M.L., Eigsti, I., & Fein, D.A. (2014). Intervention for optimal outcome in children and adolescents with a history of autism. Journal of Developmental and Behavioral Pediatrics, 35(4), 247-256.

Sutera, S., Pandey, J., Esser, E. L., Rosenthal, M. A., Wilson, L. B., Barton, M., & Fein, D. (2007). Predictors of optimal outcome in toddlers diagnosed with autism spectrum disorders. Journal of Autism and Developmental Disorders, 37(1), 98-107.

Turner, L.M., & Stone, W.L. (2007). Variability in outcome for children with an ASD diagnosis at age 2. Journal of Child Psychology and Psychiatry, 48, 793–802.

Troyb, E. Rosenthal, M., Eigsti, I., Kelley, E., Tyson, K., Orinstein, A., Barton, M., & Fein, D. (2013). Executive functioning in individuals with a history of ASDs who have achieved optimal outcomes. Journal of Child Neuropsychology, 20(4), 378-397

https://spectrumnews.org/opinion/questions-for-deborah-fein-defining-optimal-outcome/

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