Editorial Perspective: Another Look at “Optimal Outcome” in ASD

There are a variety of possible long-term outcomes associated with child and adolescent mental health and neurodevelopmental conditions. Costello and Maughan (2015) suggest that the term “optimal outcome” captures the absence of current symptoms, co-occurring conditions, and functional impairment (Costello & Maughan, 2015). In Autism Spectrum Disorder (ASD), there exists a group of individuals who met criteria for ASD in childhood who no longer meet criteria later in development. A myriad of terms has been used to describe this group: optimal outcome (Fein, Barton, Eigsti, et al., 2013; Mukaddes, Tutkunkardas, Sari, et al., 2014); optimal progress (Moulton, Barton, Robins, et al, 2016); bloomers (Fountain, Winter and Bearman, 2012); best possible outcome (Costello & Maughan, 2015); very positive outcome (Anderson, Liang & Lord, 2014); and recovery (Mukaddes et al., 2014). Our prior work (Fein et al, 2013) used the term “optimal outcome” for this group. However, no longer meeting criteria for an ASD diagnosis is not necessarily inherent in a good outcome, and may not reflect the identity and values of every Autistic individual. Autistic self-advocacy, (e.g., the Autistic Self Advocacy Network), neurodiversity, and intersectionality perspectives point to the need for reframing outcomes in ASD (e.g., Kasari & Georgiades, 2018). McCauley, Pickles, Huerta and Lord (2020) suggest criteria for good outcomes in ASD that differ with cognitive ability and include autonomy, daily living skills, and relationships and employment/activities outside the home. Considering these viewpoints, our current work refers to the group of individuals who no longer meet criteria for ASD as Loss of Autism Diagnosis (LAD) and measures long-term outcomes from the perspective of the individuals themselves, in addition to standardized measures and parent/caregiver perspectives.

Why study individuals who move off the autism spectrum as a group?

Autism Spectrum Disorder (ASD) has largely been viewed as a lifelong condition. Several research groups have observed individuals who clearly met criteria for ASD in early childhood and who no longer appeared to display features of ASD later in development (Anderson et al., 2014; Fountain, et al., 2012; Moulton et al., 2016). Our group studied this phenomenon closely, confirming that this outcome was possible even with incontrovertible ASD in childhood (Fein et al., 2013). We looked for residual difficulties and co-occurring conditions that might require continued services, and aimed to explore mechanisms underlying these developmental trajectories. In order to understand the biological underpinnings of ASD, many researchers have argued that detailed descriptions of clinical presentations, including trajectories and long term outcomes, might further the attempt to correlate phenomenology with possible biological factors (Uher & Rutter, 2012). We treated no longer meeting ASD criteria as one long-term outcome that might correlate with biological factors, such as head and body growth, dysmorphology, genetic profiles, or compensatory task-related neural activation.

The definition of LAD (previously referred to in our work as “optimal outcome”), as detailed in Fein et al. (2013), entailed clear documentation of early ASD diagnosis, not meeting current diagnostic criteria (with ADOS scores similar to neurotypical peers with no history of ASD), and having overall cognitive, language and social functioning standardized test scores within the average range. Confirmation that meeting criteria for ASD is not necessarily a life-long state is evident in the strikingly similar proportions (about 9%) of individuals experiencing LAD in prospective and retrospective studies (prospective: Anderson, et al., 2014; Fountain, et al., 2012, Moulton et al., 2016; retrospective: Mukaddes, et al., 2014).

In our current work examining long-term outcomes of individuals experiencing LAD, we are gathering data on the domains suggested by Costello and Maughan (2015). Faced with the demands and stresses of the transition into adulthood, ASD characteristics such as difficulty with social interaction and perseverative interests might re-emerge. We are also examining the appearance of conditions known to co-occur with ASD (especially anxiety and depression), as well as functional impairment, as measured by adaptive functioning in the areas of friendships and romantic relationships, engagement in current school or employment, and autonomy (living arrangements, self-care and financial independence). This approach aligns with the view that LAD status is not sufficient for understanding outcomes in ASD (e.g., Kasari & Georgiades, 2018).

Neurodiversity and Intersectionality.

There is no question that individuals with various forms of disability or identity have been systemically misunderstood, underestimated, and discriminated against in education and employment, and this discrimination is compounded for those with multiple identities associated with oppression (e.g., having Autistic and Black identities). Unfortunately, research in the medical model has sometimes served to increase discrimination, in part by focusing on individual symptoms rather than social structures that promote autonomy and success (Pellicano & Houting, 2022). While many Autistic individuals can and do independently achieve happiness and well-being based on their unique interests and values, some experience cognitive and linguistic barriers preventing them from doing so.

One interpretation of the neurodiversity perspective would suggest that ASD is simply a different way of being and that all Autistic individuals should actively participate in setting their own goals (Kasari & Georgiades, 2018). This perspective raises the risk of encouraging families to believe that ASD is “only” a communication disorder and that the internal lives of those with limited communicative expression are otherwise similar to those of their peers. The most obvious example of the possible negative consequences of this belief is with Facilitated Communication and similar claims (e.g., The Reason I Jump by Naoki Higashida; see commentary by Fein & Kamio, 2014). In our clinical practice, a 12 year old girl with ASD was passed from grade to grade with good marks, her parents having been told that with a different teaching style, she could master the academic curriculum. The family fully expected that she would attend medical school. When we discussed her test results, including a full scale IQ of 50 and a reading comprehension level of first grade, the family was shocked and distressed. Not only did this approach set up unrealistic expectations; it also gave the school license not to provide the services that might have allowed her to further fulfill her potential, and led to her being placed into an unhelpful, less-supportive, and inappropriate academic environment.

In our experience interacting with autistic individuals and their families, we know how important it is to consider and address the expectations of those who are aware of research on long-term outcomes involving loss of diagnosis and expect their child to respond to intervention in the same way, or to believe that their child could have reached this outcome if they had been provided with different intervention (Kasari & Georgiades, 2018). This issue requires sensitive discussions with families, managing their expectations, mitigating self-criticism, and focusing attention on intra-individual growth. Of course, it is possible to agree that the best outcomes are those that maximize mental and physical health, autonomy, and self-determination, and, as promoted by the Neurodiversity movement, that shining a bright light on how societal and organizational structures support and engage with all members of our community could lead to better outcomes for all (e.g., Pellicano & Houting, 2022).

To balance the importance of neurodiversity and intersectionality with the potential negative consequences of ignoring important variance in cognitive and linguistic barriers to participation in goal-setting, we propose prioritizing universally accepted goals of health and well-being, such as access to education, achieving relative autonomy, and establishing and maintaining friendships (e.g., McCauley, Pickles, Huerta & Lord, 2020). The research participants in our current long-term outcome study, meeting criteria for ASD currently or in the past, are adolescents or young adults and have language and overall cognitive abilities within the range of neurotypical peers; as such, they do not experience age-related, linguistic, or cognitive barriers to effectively describing their own lived experiences, both positive and negative, any co-occurring conditions, such as depression and anxiety, their employment and relationship goals, and their experiences with revealing or camouflaging their autism. We hope that their perspectives will enrich our knowledge about the nuanced and diverse views and outcomes of these individuals.