Optimal Outcomes and Recovery

, Marcy Willard¹ and Helena Huckabee¹

(1)

Emerge: Professionals in Autism, Behavior and Personal Growth, Glendale, CO, USA

Abstract

There is currently no “cure” for autism; although, treatment technologies are rapidly improving and there are reasons to have hope that children with autism can be alleviated of most of their symptoms and enabled to live fulfilling lives. Although there is some debate over this, research is consistent that some individuals do indeed recover from autism. Recovery means that the individual who once had autism is now able to reach average or better developmental levels. Knowing that this “optimal outcome” is possible, readers are invited to learn about the factors that generally predict such a recovery. Most research indicates intelligence, language skills, early intervention, and certain adaptive personal characteristics as the primary factors in recovery for children on the autism spectrum. Individual factors or intervention alone do not tend to be directly predict ASD symptom severity; rather, there are a specific set of adaptive and personal characteristics that, when present, and combined with best practice treatment, lead to optimal outcomes. Models for fostering optimal outcomes for children with ASD are discussed in this chapter.

Keywords

Reaching optimal outcomes in AutismRecovery rates in ASDAdaptive skills predict recovery in ASDLanguage skills predict recovery in ASDIntelligence predicts recovery in ASDEarly identification in ASDEarly intervention predicts recovery in ASDDo people with autism recover?Severity levels in ASDWill my child with ASD get better?

There are many well-documented instances where individuals who once had an autism diagnosis no longer meet criteria later in life (Fein et al., 2013; Helt et al., 2008; Kelley et al., 2010; Sutera et al., 2007; Tyson et al., 2014). These instances are referred to as “optimal outcomes” (Hepburn & Katz, 2009; Kelley et al., 2010; Sutera et al., 2007). There is debate about whether or not children can actually “recover” from autism or achieve an optimal outcome (Suh et al., 2014) and the degree to which they reach typical developmental levels. However, most researchers who study autism have found that recovery or optimal outcomes are indeed obtained by many children with autism (Helt et al., 2008; Hepburn & Katz, 2009; Kelley et al., 2010; Sutera et al., 2007; Tyson et al., 2014).

Research reveals that the rate of “recovery” is 3–25 % of individuals diagnosed with ASD (Helt et al., 2008, p. 339) for children who receive effective intervention at an adequate dose. Some researchers have found higher rates of recovery, even over 50 %, with intensive best-practice intervention such as the Early Start Denver Model (Rogers, 2015). This rate varies across studies (Sutera et al., 2007) in part because of the criteria used to define optimal outcomes. Helt et al. (2008) define recovery as (a) a “convincing history of ASD” is present, and (b) “the child must now be learning and applying a set of core skills that reaches the trajectory of typical development in most or all areas” (Helt et al., 2008, p. 340). Optimal outcomes have also been defined thusly, “(1) initially meeting criteria for ASD or PDD-NOS, (2) no longer meeting criteria as determined by experts in ASD, and (3) average skills demonstrated in cognition, language, and adaptive domains” (Sutera et al., 2007, p. 100). Even for children who qualify as recovered, it is commonly seen that approximately 50 % often have persisting psychiatric problems not present in neurotypical peers. For example, ADHD (or subclinical attention problems) (Troyb et al., 2014), depression, anxiety (or subclinical worry), and some odd or atypical social behaviors are common in children who have achieved optimal outcomes (Helt et al., 2008). The research shows that although it was previously thought to be adequate for a child with autism to be integrated into the general education classroom and demonstrate an average IQ, this is now believed to be insufficient to demonstrate the child has moved off of the Spectrum (Kelley et al., 2010, p. 527). Indeed, it is generally believed that the child must reach typical levels of communication, social, and adaptive skills to be considered “recovered” or to have Optimal Outcomes (Helt et al., 2008; Kelley et al., 2010).

What factors lead to optimal outcomes and how do clinicians and parents go about the process of fostering these factors in the children who are capable of making great contributions to our world and are held back by a mix of challenging symptoms? The authors have identified a number of significant factors in autism outcomes, finding the most important to be: intelligence, language skills, early intervention, especially when combined with certain adaptive personal characteristics and behaviors. Most studies show that intervention itself does not predict better outcomes; however, intervention in combination with certain individual factors maximizes outcomes in children on the Spectrum. Fortunately, the individual factors do not tend to be directly related to ASD symptom severity; rather, there are a specific set of adaptive and personal characteristics that, when present, and combined with best practice treatment, lead to optimal outcomes. Functional toy play and the presence of at least a single word in their repertoire (or a word approximation) can be predictive of better outcomes. Individual factors such as early positive social skills in certain areas are strongly related optimal outcomes (Fein et al., 2013). It is promising that some features of autism are not related in the research to outcomes. For example, repetitive behaviors at the time of diagnosis bear no relationship to outcomes later in life (Fein et al., 2013). Thus, even families who may see scarce hope for their child’s prospect of recovery are well advised to remember that optimal outcomes do exist. Fortunately, researchers have made significant progress in outcome research. Below is a description of the three variables the authors find are most significantly associated with optimal outcomes (Fig. 3.1).

Fig. 3.1

Primary predictors of optimal outcomes

Intelligence

One important factor in outcomes (Helt et al., 2008; Stevens et al., 2000), and likely the most important factor, is intelligence. Indeed, a large number of studies have found either IQ and early language or IQ alone to be the most significant factor in outcomes (Schreibman et al., 2011). Bearing in mind that children with autism do not necessarily have cognitive deficits at all, it is important to understand the effect of cognitive ability on later outcomes (31–37 % have intellectual disabilities, 23 % borderline range, 46 % have average or above IQs; Centers for Disease Control and Prevention, p. 6; Trammell et al., 2013). Research generally shows that children with higher IQs tend to respond more readily to treatment (Stevens et al., 2000). It is unknown as to whether the high cognitive ability actually moderates the treatment response, or rather, if cognitive ability alone is a factor in resilience and success in a variety of domains. One treatment utilized for ASD is Cognitive Behavioral Therapy (CBT) which has strong evidence in the literature for treating emotional symptoms, such as anxiety, which are often associated with ASD. Therapeutic outcome in CBT depends to a degree on intelligence (CNNH, 2015; Doubleday et al., 2002). In order to respond to CBT, clients need to be able to consider their own thinking process, evaluate core beliefs, cognitively reframe events, and to respond to feedback. Although some benefit may be achieved at various cognitive levels, treatment outcome is increased for patients with higher cognitive levels and intellectual maturity (CNNH, 2015). Stevens et al. conducted a study on 138 children with autism considering subgroups of the Spectrum and which preschool factors predicted later outcomes. They reported that cognitive ability was perhaps the most significant factor on outcomes, explaining their findings thusly,

“The outcome of cognitive status are far reaching, as outcome seems to depend significantly on cognitive ability. Although it has been shown that aggressive early intervention can circumvent some of the abnormalities of autistic children, it is not currently known whether IQ itself can be influenced by therapies that capitalize on existing cognitive strengths for treatment.” (Stevens et al., 2000, p. 351).

Thus, intelligence seems to play a significant role in response to treatment because children with greater cognitive capacity are more capable of responding to certain types of therapeutic interventions. Helt et al. explain the relationship between treatment, IQ, and optimal outcomes, “All of the children in the studies that reported participants with optimal outcome were receiving some level of treatment and thus it is possible that the treatment, in combination with the potential for normal levels of cognition, was responsible for their improvements” (Helt et al., 2008, p. 349). Thus, it is not clear whether the treatment or the IQ or both are the primary factor in optimal outcomes. It has also been discovered that effective treatment in children with autism actually increases IQ scores (Rogers, 2015).

There is often found in longitudinal research an effect referred to as “catch-up intellectual development,” in the ASD population, meaning that many children with ASD have lower IQ scores in preschool, particularly in language development, tend to show improved abilities in elementary school (Dietz et al., 2007; Mayes & Calhoun, 2003). This raise in IQ shares a complex relationship with IQ; often, a raise in IQ occurs regardless of the amount or type of treatment. However, as previously discussed, best practice treatment tends to influence IQ and generally IQ is one of the factors considered as an outcome measure when a child is said to have “recovered” from autism. This means that intelligence does show some plasticity in the ASD population, which is a good sign for children who may show some early cognitive delays. Thus, IQ shares a cyclical relationship with IQ in that intelligence impacts the treatment effects and adequate treatment may increase IQ. Taken together, research points to the notion that children with higher IQs who receive effective intervention tend to have the best outcomes.

A further model to understand the potential for children with various IQ levels and autism to achieve optimal outcomes is to see autism symptoms and intelligence on a continuum (see Fig. 3.2).

Fig. 3.2

Orthogonal model of symptom severity

This model intends to highlight that children in the Low IQ and High Symptoms group have a poorer prognosis than other groups. However, other combinations such as Low IQ and Low Symptom Levels or High Symptom Levels and High IQ would show more variation in treatment outcomes. This model highlights the importance of the fact that autism falls on a continuum, a “spectrum,” and that each child’s strengths are unique. It takes into account the fact that although early symptom levels may appear to be the primary indicator of later success, the research points to the idea autism symptoms alone are not necessarily predictive of later outcomes. Rather, individual factors including IQ, language, and certain early social skills tend to have a complex and dynamic relationship with symptom levels and optimal outcomes.

Intelligence is inversely related to the age of diagnosis, which in itself plays a negative role in optimal outcomes. That is, children who are intelligent are often diagnosed later (Mayes & Calhoun, 2003), because higher IQ may mask symptoms in younger children. This later diagnosis factor unfortunately leads to later diagnosis and later intervention. Sometimes, patterns of rigidity and poor reciprocity are resistant to treatment in children who are diagnosed later. There is some evidence that a more even cognitive profile leads to better outcomes; children with a greater discrepancy between nonverbal and verbal IQ scores show poorer social skills later in childhood (Joseph et al., 2002). However, the fact that children with higher IQs are more responsive to treatment can moderate that effect and provide an opportunity for better outcomes. Overall, research in resiliency and response to treatment shows a positive effect of IQ as a significant factor in optimal outcomes.

Language Skills

Optimal outcomes for children with autism are linked in the research to children with strong language skills. The fact that language is a significant factor is not surprising as a language delay or communication deficit has always been a defining feature of the disorder (APA, 2000a, 2000b). One of the authors of this text found in a large-scale study (N = 272) over 15 years at the University of Texas that the percentage of variance (r ²) of IQ accounted for by language was 27 % in the ASD population (without significant intervention) (Huckabee, 2003). Language alone or language combined with IQ is generally considered the best predictor of outcomes (Sutera et al., 2007, p. 100, Schreibman et al., 2011, p. 295). Indeed, researchers claim, “Early language ability and cognitive ability have emerged as the most robust predictors of overall prognosis for autism during childhood, adolescence and adulthood” (Schreibman et al., 2011, p. 295). Thus, most researchers who study the outcomes of children on the Spectrum believe that language is a significant factor. It is a factor in two ways. First, children with better language skills in certain areas tend to have better outcomes later in life because language in itself is a resilience factor, and because early language often predicts better language acquisition developmentally as language abilities have a cumulative “building” effect over time. Second, when studying children with optimal outcomes, researchers tend to find that one of the major differences between the optimal outcome group and the typically developing group is language skills. Generally, high functioning children, typically developing children, and children with optimal outcomes, all tend to have generally average language skills rather than significant language deficits. However, the type of skills can be differentiated by group. Premier optimal outcome researchers describe it thusly,

Employing an extensive language evaluation we found that standard scores on language tasks were all in the normal range but probing with more complex language and social cognitive tasks such as comprehension of second order theory of mind and mental state verbs, ability to construct narratives, and ability to reason inductively about animate things, still showed residual difficulties (Sutera et al., 2007, p. 99).

Thus, in children with autism who achieve optimal outcomes, it is commonly found that although their language skills may move into the average range, complex language skills may be “residually” impaired (Sutera et al., 2007, p. 99). Abstract, metaphorical, emotional content, and pragmatic language skills tend to be weak areas in ASD.

It has oft been found that children with autism have significant weaknesses in narrative coherence (storytelling) in spite of average IQ scores (Losh & Capps, 2003; Suh et al., 2014; Willard, 2013). Children with optimal outcomes are more likely to use overly formal language, scripted speech, or unusual references to TV shows and movies than typically developing children, in their storytelling (Suh et al., 2014). When telling a story, children with optimal outcomes are able to include as many story elements as typical children, whereas children with High Functioning Autism produce significantly fewer (Suh et al., 2014). Taken together, although children with optimal outcomes in general have language skills in the average range, there are residual factors often present in their language production; one of the most significant of these is impaired narrative coherence. However, even while evidencing these somewhat subtle residual language differences in children with optimal outcomes, it is important to understand that strong language development, especially when combined with average or high IQ scores, tends to strongly predict better outcomes in children with autism.

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