New Perspective on Optimal Outcome for Kids with Autism Spectrum Disorder

By: Yexenia Vanegas and Janelle Schenk, LMSW

Autism spectrum disorder has been generally considered a lifelong disability. Research from 2014 (Anderson, D. K. et al, 2014) demonstrated that a small percentage of individuals could potentially lose their ASD diagnosis over time. Researchers have referred to this as “Optimal Outcome;” however, new research has suggested a reframing of what “Optimal Outcome” means for such a heterogeneous, or diverse, population.

In the past, optimal outcome was defined as: previously meeting diagnostic criteria for ASD through gold standard measures, participating in general education with no aid, demonstrating a full scale IQ of 70 or greater and no longer meeting the criteria for ASD based on gold standard measures (Anderson, D. K. et al, 2014). This initial study that created the criteria for optimal outcome challenged the idea that ASD is a lifelong disorder while also highlighting the importance of early detection as well as early and continuing interventions. However, the Loss of Autism diagnosis (LAD) is not a norm but an exception. Only 9% of participants in the 2014 study were considered Optimal Outcomes; they no longer met diagnostic criteria for ASD (Anderson, D. K. et al., 2014). Though significant, this does not mean the majority of ASD kids will reach this particular definition of optimal outcomes. Since this study in 2014, a new perspective has been added to the understanding of ASD which has changed the definition of optimal outcome.

New Perspectives: Neurodivergence

Neurodivergence is a framework which rejects the view of ASD as being a pathological disorder and instead interprets ASD as the brain functioning differently than the (neuro) typical person. Due to the diversity of the ASD population, the traditional, one dimensional, definition of “optimal outcome”is not a fair assessment of what “optimal” looks like for different presentations of ASD (Georgiades, S., & Kasari, C. 2018; Eigsti, I., et al., 2022). Furthermore, a Loss of Autism Diagnosis (LAD) is not an indicator of optimal outcome. Instead LAD is meant to serve as a clear measurable diagnostic tool, but does not indicate that an individual is without issues. For example, a person who loses their ASD diagnosis and who may perform equally to neurotypical peers, may still suffer from anxiety, have trouble maintaining relationships or have other comorbidities (OCD, ADHD etc).

With this framework of neurodiversity in mind, researchers have redesigned and expanded the definition of optimal outcome into three domains: autonomy, social relationship and purpose. Along with these three domains, researchers have determined what optimal outcomes looks like depending on cognitive ability:

For more cognitively able individuals (IQ of 70 or greater):

(1) having regular employment or undertaking age-appropriate education
(2) having at least one friend, and
(3) living independently.

For less cognitively able individuals (IQ lower than 70):

(1) having either supported, non-supported, or voluntary work activities outside the home,
(2) having any social contact outside of family members; that is, friends, peers, or acquaintances, and
(3) having an average age equivalent score above 8 years on the personal and domestic subscales from the Vineland-II. An 8-year-old age-equivalence was selected because skills at this level included self-care (toileting, dressing oneself, basic hygiene) and the ability to complete some household chores.

Along with these outcomes and domains (autonomy, social relationships and purpose), the voice and opinion of the ASD individuals as well as their caregivers are an important consideration in this definition of optimal outcome (Huerta, M., & Lord, C. (2020).

What does it all mean?

What has not changed in research, new and old, is that early detection and early/ongoing intervention continues to be imperative for kids with ASD to improve symptoms and to learn how to navigate society.

What is new: optimal outcome is no longer narrowly defined by IQ level and a baseline founded on neurotypical behavior. Instead the definition has expanded and adjusted to the heterogeneity of ASD which requires that optimal outcome be based on factors particular to the individual, their history and systems that surround them (Eigsti, I., et al., 2022).

These images show us how our views of ASD have developed from linear spectrum to a circular spectrum which better fits this new nuanced understanding and reframing of optimal outcomes.

Implications

What does this mean for families with members diagnosed with ASD? As stated before, early detection and early/ongoing intervention continues to be essential to help kids develop the skills they need, especially as they transition into adulthood. Your child’s optimal outcome is defined by their cognitive ability, autonomy, social relationships and purpose. Family members, client and clinician will define what an optimal outcome looks like by taking into consideration the child’s/family’s needs and consider your history as well as access to resources. Again it is important to understand that a Loss of Autism Diagnosis (LAD) is an exception, not the norm. It is not necessarily a marker of success and should not be considered an objective.

How does this new perspective affect clinical work? Clinicians should understand LAD as a diagnostic tool and not a marker of success or a treatment objective. They should continue to use research-backed assessment in evaluations proven to accurately diagnose ASD, like the ADOS-2 or ADI-R. In order to detect ASD in children earlier and thus intervene earlier, clinicians should consider partnering with practices and organizations who do not use these gold standard measures or only use screeners to expand their reach.

As time passes there is more research as well as more understanding around ASD. Neurodivergence offers a new perspective where ASD is not a disorder to be cured, but rather a way of being/brain function that requires families to learn about, adapt to and support the individual with ASD so they can navigate the world around them in healthy ways.

References

Anderson, D. K., Liang, J. W., & Lord, C. (2014). Predicting young adult outcomes 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

Eigsti, I., Fein, D., & Larson, C. (2022). Editorial Perspective: Another look at “optimal outcome” in autism spectrum disorder. Journal of Child Psychology and Psychiatry. https://doi.org/10.1111/jcpp.13658

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.

Georgiades, S., & Kasari, C. (2018). Reframing Optimal Outcomes in Autism. JAMA Pediatrics, 172(8), 716. https://doi.org/10.1001/jamapediatrics.2018.1016

Huerta, M., & Lord, C. (2020). Defining positive outcomes in more and less cognitively able autistic adults. Autism Research, 13, 1548–1560.

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

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