NCBI Bookshelf. A service of the National Library of Medicine, National Institutes of Health.

Lounds Taylor J, Dove D, Veenstra-VanderWeele J, et al. Interventions for Adolescents and Young Adults With Autism Spectrum Disorders [Internet]. Rockville (MD): Agency for Healthcare Research and Quality (US); 2012 Aug. (Comparative Effectiveness Reviews, No. 65.)

Cover of Interventions for Adolescents and Young Adults With Autism Spectrum Disorders

Interventions for Adolescents and Young Adults With Autism Spectrum Disorders [Internet].

Show details

Discussion

State of the Literature

Despite a growing population of adolescents and young adults who have diagnoses of an autism spectrum disorder (ASD) and the need for effective intervention across the lifespan, very little research is available to guide therapy in adolescents and young adults with ASD. The available research is lacking in scientific rigor. We identified 32 studies (one paper reported two separate studies), of which 10 were randomized controlled trials (RCTs). Nonetheless, most studies were of poor quality; only five were fair quality and none was good quality.

Studies typically addressed the core symptoms (impairments in communication, social interaction, or behavior) of ASD (Key Question 1) and the effects of interventions on functional and adaptive behavior (Key Question 3). One study addressed the transition process (Key Question 4), and two addressed family outcomes (Key Question 6). Harms of interventions (Key question 5) were only discussed in studies of medical approaches. Eight studies of medical approaches and one behavioral study addressed Key Question 2, which examined the effects of interventions on comorbid medical or mental health conditions (e.g., epilepsy, sleep disorders, motor impairments, obesity, depression, anxiety, acute and episodic aggression, attention deficit hyperactivity disorder, etc.).

Summary of Outcomes

Studies of Behavioral Interventions

Six poor quality studies of targeted social skills interventions representing different individual/group- and computer-based paradigms met our inclusion criteria.47, 6163, 76, 77 Research involving individual or group-based interventions61, 62, 76, 77 reported improvements across a variety of social skills as rated by parents. Research on computer assisted interventions suggested improvements associated with emotion recognition.47, 63 However, each study employed a different approach and paradigm, making synthesis of the results into one estimate of effect impossible. Likewise, such social skills interventions have yet to demonstrate consistent generalization of skills across settings and often circumscribe interventions to individuals with average to above average verbal and/or cognitive abilities. As such, the strength of evidence for social skills interventions is insufficient, meaning that future research is needed to establish one effect.

A single poor quality case series of a semi-residential, intensive behavior-based intervention included 34 adolescents and focused on changes in adaptive behavior after 2 years of program attendance.64 Overall, both male and female participants improved on measures of socialization, and females also improved in daily living and motor skills While the authors reported that there was a positive impact across a fairly heterogeneous group, the study did not involve a control group and did not clearly define an intervention; parental satisfaction data reported were positive.

Studies of Educational Interventions

Research into language and communication strategies for adolescents and young adults with ASD is very limited, with only two small crossover studies identified in this population. There is little evidence to support selection among various educational strategies, with one study finding similar vocabulary acquisition between analog and natural language approaches.66 Procedural facilitation and anaphoric cuing showed some promise for increasing vocabulary in high-functioning ASD but were addressed in only one small, short term study.65

Studies of Adaptive/Life Skills Interventions

Studies of adaptive-focused interventions meeting our criteria were of poor quality, addressed disparate interventions, and included few participants. No study included more than 81 individuals with ASD, and at least two studies included individuals with concomitant intellectual disability. Interventions addressing teaching self-care skills (shoe lacing),55 digital memory aids,57 and a residential, Treatment and Education of Autistic and Communication related handicapped Children (TEACCH)-based program54 reported some positive effects. Studies were typically uncontrolled and of short duration, however.

One poor quality study assessed the effects of a classroom rotation schedule on crisis events in a residential school56 and reported no significant increase in events after the implementation of classroom rotation. The few studies addressing family-focused outcomes reported parent or family satisfaction with treatment approaches. One study of a TEACCH-based residential program compared with group homes and institutions reported greater satisfaction with treatment and program participants’ community involvement among parents of individuals in the TEACCH-based facility compared with group homes.54 Parents of individuals in the TEACCH residence were also more satisfied with the impact of the placement on the family than parents of individuals in other groups. Assignment to the TEACCH program, however, was not random; thus individuals in the group may have differed meaningfully from individuals in group homes, family homes, or institutions.

Studies of Vocational Interventions

Our search identified five studies focused on supported employment/vocational interventions.17, 48, 7275 It is important to note that all of the identified studies focused on on-the-job supports as the employment/vocational intervention; no other vocational interventions were reported in the literature meeting our study criteria. Our ability to assess the benefit of supported employment programs is limited, given the existing research. No study utilized random assignment, making it difficult to draw conclusions about the effectiveness of the programs. The majority of the studies were small, and all were poor quality thus the strength of the evidence is insufficient at this time.

Supported employment interventions are particularly understudied. For example, only one study examined rates of employment for programs that lasted 3 years or longer.17 Further, this longer-term study did not include a control group, making it impossible to determine the rates of employment over time for young adults with ASD who were not participating in the supported employment intervention. Finally, none of the studies examined whether increased employment rates or improvements in other outcomes were sustained after the termination of the supported employment intervention.

Studies of Medical Interventions

The use of medical interventions in adolescents and young adults with ASD is common.78 However, there is little evidence that supports the use of medical interventions specifically in this population. We identified three studies of antipsychotic medications,50, 51, 67 five studies of serotonin reuptake inhibitors (SRIs),50, 52, 68, 69, 71 and one study of an opiate antagonist.53 Overall, most of these studies focused on the use of medications to address specific challenging behaviors (i.e., aggression or irritability). Four studies were fair quality,5053 and four were poor.6769, 71

The most consistent findings were identified for antipsychotic medications. An RCT studying risperidone found improvements in aggression, repetitive behavior, sensory motor behaviors, and overall behavioral symptoms.51 A crossover study of risperidone also showed a significant reduction of irritability/agitation ratings with risperidone treatment, but the control was indirect.67 A placebo-controlled crossover study found that haloperidol significantly improved hyperactivity/defiance ratings, but no significant difference was found for irritability/agitation or other symptoms.50 While limited literature supports the use of risperidone in adolescents or young adults with ASD, the efficacy of risperidone in studies including mostly children has moderate strength of evidence32 that is consistent with the results of the one fair RCT and one poor crossover study in adults with ASD. There is therefore no evidence to suggest that the effects of risperidone for irritability/agitation in ASD is specific to a particular age range.

A number of studies of SRIs were identified but with limited consistency across studies as a whole. An RCT of fluvoxamine showed decreases in repetitive behavior, aggression, autistic symptoms, and language usage.52 In contrast, no significant differences were observed in a crossover study of clomipramine versus placebo.50 Three case series of SRIs were also identified, including sertraline, fluoxetine, and clomipramine, with each study reporting some benefit to treatment.68, 69, 71 A recent study not meeting criteria for this review contributes to the limited data on SRIs: the placebo-controlled RCT79 of fluoxetine included 37 individuals with ASD with a mean age of 34.31 and reported improvements in repetitive behavior and ASD symptoms in the treatment group and mild harms. This study used a different medication than the one fair quality study in our age range, so it would be unlikely to influence the strength of evidence for a specific medication. It is possible, however, that a systematic review of SRIs in the broader age range of adults with ASD could provide data that might increase our confidence in the effect.

A crossover study of the opioid receptor antagonist naltrexone found no significant improvements in problem behavior and showed worsening of stereotyped behavior with naltrexone treatment compared with placebo.53

Based upon the published studies in adolescents and adults with ASD, the strength of evidence is insufficient regarding harms associated with medications tested in this population. As in the case of efficacy, the data on adverse effects associated with risperidone, including sedation and weight gain, are consistent with the high strength of evidence for the association of treatment with these adverse effects in children with ASD.32 The available evidence therefore appears consistent in supporting our understanding of the risk of these adverse events in ASD without being limited to a specific age range. Of course, this does not mean that other medications tested in ASD are free of adverse effects. It is reasonable to expect that, in contrast to efficacy, which is more likely to be specific to disorder and symptom, adverse effects are more likely to extend across diverse groups of subjects studied. Clinicians evaluating the evidence and sharing information with families routinely take this perspective, as does the Food and Drug Administration in mandating that all adverse events be listed for a drug, rather than just those for a particular indication.

As one example, the limited studies of adults with ASD treated with risperidone indicate weight gain as an adverse effect but in too few studies to draw a clear conclusion about the strength of evidence. There is, however, high strength of evidence for weight gain in children with ASD treated with risperidone, as noted in a previous comparative effectiveness review.32 Similarly, recent Cochrane reviews found substantial evidence for weight gain in adults with schizophrenia or bipolar disorder treated with risperidone.80,81 When the broader evidence base is considered, the consistency of these findings supports an association of weight gain with risperidone in adults with ASD, just as is true in children with ASD and adults with other disorders. This approach to assessing the evidence for harms is outside of the scope of this review, but similar conclusions could be drawn with respect to sedation and extrapyramidal symptoms with risperidone or haloperidol.

Studies of Allied Health Interventions

Few studies of allied health interventions met our criteria.49, 5860, 70 One fair quality RCT assessed a 12-month recreation program49 and reported improved quality of life and lower stress scores in individuals participating in the leisure/recreation program compared with those on a waiting list. One poor quality case series60 included 22 young adults engaged in a music therapy intervention. Nearly all participants reported making friends during the program and were generally satisfied with the program. Both studies assessed outcomes shortly after treatment, so longer-term effects of the interventions are not known.

Two studies of facilitated communication59,70 used approaches designed to assess the effects of facilitation both with and without facilitators’ awareness of the word being prompted. Both studies demonstrated some facilitator influence and limited effects on participants’ independent ability to communicate. One retrospective study of a music therapy program reported some positive effects on participants’ social skills using largely subjective outcome measures.58

Strength of the Evidence for Effectiveness of Therapies

Overview

We assessed the literature by considering both the observed effectiveness of interventions and the confidence that we have in the stability of those effects in the face of future research. The degree of confidence that the observed effect of an intervention is unlikely to change is presented as strength of evidence and can be insufficient, low, moderate or high. Strength of evidence describes the adequacy of the current research, both quantity and quality, and whether the entire body of current research provides a consistent and precise estimate of effect. Interventions that have shown significant benefit in a small number of studies but have not yet been replicated using rigorous study designs will have insufficient or low strength of evidence, despite potentially offering clinically important benefits. Future research may find that the intervention is either effective or ineffective.

Methods for applying strength of evidence assessments are established in the Effective Health Care Program’s Methods Guide for Effectiveness and Comparative Effectiveness Reviews46 and are based on consideration of four domains: risk of bias, consistency in direction of the effect, directness in measuring intended outcomes, and precision of effect. Table 3 in the Methods section of the report includes a description of these domains.

We determined the strength of evidence for outcomes including social skills, adaptive behavior, autism symptom, challenging and repetitive behavior, harms of treatment, employment, and parent satisfaction. Tables 16 through 21 document the strength of evidence for each domain of the major intervention-outcome combinations.

Strength of the Evidence

Behavioral Interventions

All studies assessing behavioral interventions were poor quality. The strength of the evidence for all interventions targeting social skills is insufficient as it is for an intensive behavioral intervention (Table 16).

Table 16. Intervention, strength of evidence domains, and strength of evidence for outcomes of behavioral studies.

Table 16

Intervention, strength of evidence domains, and strength of evidence for outcomes of behavioral studies.

Educational Interventions

Only two poor quality studies investigated educational interventions targeting communication skills thus we assessed the strength of the evidence as insufficient (Table 17).

Table 17. Intervention, strength of evidence domains, and strength of evidence for key outcomes of educational studies.

Table 17

Intervention, strength of evidence domains, and strength of evidence for key outcomes of educational studies.

Adaptive/Life Skills Interventions

With four poor quality studies targeting disparate outcomes using disparate adaptive/life skills-focused interventions focused on highly specific tasks/skills, we rated the strength of the evidence overall as insufficient (Table 18).

Table 18. Intervention, strength of evidence domains, and strength of evidence for outcomes of adaptive/life skills studies.

Table 18

Intervention, strength of evidence domains, and strength of evidence for outcomes of adaptive/life skills studies.

Vocational Interventions

Five studies assessed employment-related outcomes as well as outcomes related to cognition and autism symptoms. All studies were poor quality, and we assessed the strength of the evidence as insufficient for all outcomes (Table 19).

Table 19. Intervention, strength of evidence domains, and strength of evidence for supported employment/vocational interventions.

Table 19

Intervention, strength of evidence domains, and strength of evidence for supported employment/vocational interventions.

Medical Interventions

There were no good studies identified for antipsychotics, serotonin reuptake inhibitors, or opioid receptor antagonists in adolescents or young adults with ASD. The strength of evidence for each of these medication classes is insufficient. Similarly the strength of evidence for adverse effects is also insufficient (Table 20).

Table 20. Intervention, strength of evidence domains, and strength of evidence for outcomes of medical studies.

Table 20

Intervention, strength of evidence domains, and strength of evidence for outcomes of medical studies.

The strength of evidence for the use of risperidone to treat irritability and repetitive behaviors in ASD is insufficient based on a single fair RCT 51 and a single poor crossover study.67 The strength of evidence for the use of haloperidol to treat hyperactivity/defiance in ASD is insufficient based on a single fair study.50 The strength of evidence for the use of naltrexone for the treatment of either problem behaviors or core ASD symptoms is insufficient based on a single fair crossover trial. The strength of evidence for the use of clomipramine for the treatment of ASD symptoms is insufficient based on a single fair study,50 and a single poor case series study.69 The strength of evidence for the use of fluvoxamine for repetitive behaviors, aggression, or other ASD symptoms is insufficient based on a single fair RCT.52

Allied Health Interventions

With only one fair quality RCT of a leisure program addressing quality of life outcomes, we rated the strength of the evidence as insufficient for this outcome. Similarly, the strength of the evidence was insufficient for other allied health interventions and outcomes (Table 21).

Table 21. Intervention, strength of evidence domains, and strength of evidence for outcomes of allied health studies.

Table 21

Intervention, strength of evidence domains, and strength of evidence for outcomes of allied health studies.

Applicability

Applicability of the Evidence

By definition, ASDs are heterogeneous. Characterizing a “typical” individual with an ASD is not possible, although certain symptoms are central to the range of individuals within the autism spectrum. Individual therapies are developed and tested to ameliorate specific symptoms or groups of symptoms, often in a fairly circumscribed subset of children. We describe the applicability of the evidence for interventions represented in this review below.

Behavioral Interventions

Studies of behavioral interventions to date have been limited in scope. The single investigation of an intensive, comprehensive behavioral intervention was conducted across a broad age range of individuals (4 to 18) within a residential rehabilitation center. While numerous studies of younger children have focused on intensive behavioral and developmental interventions, quite often behavioral interventions for adolescents and young adults with ASD have been limited to social skills interventions. Social skills interventions in turn have been limited to investigations conducted with individuals with substantial cognitive and verbal abilities, often individuals with high-functioning autism or Asperger syndrome. Therefore the evidence of social skills interventions is likely applicable only to older, higher functioning individuals. The range of approaches studied also does not always match what is available in practice—that is, either the studies were conducted in highly controlled environments (e.g., university-supported manualized intervention trials), the actual methodology was not well described (i.e., approaches lacking treatment manuals), or the computer based intervention is not widely available. Thus, individuals wishing to infer the potential results of clinical practice based on the available research need to assess carefully the degree to which the study methods matched those available and used in practice. Ultimately, the effectiveness of social skills interventions within and outside of these limited samples and setting is currently unknown.

Educational Interventions

The two studies of educational interventions included in this review were conducted in the United States and Canada in the home and educational environments. Characteristics of participants in the studies (intelligence quotient [IQ], language skills) likely represented a wide spectrum and were not categorized well enough to assess their applicability to the larger population. Educational approaches targeted acquisition of vocabulary and included individual- and group-based strategies; the intensity of interventions varied from a single session to multiple sessions across several weeks. Outcomes examined in this literature primarily focused on reading comprehension and acquisition of vocabulary among individuals exposed to various teaching approaches.

Adaptive/Life Skills Interventions

Two adaptive/life skills studies explicitly included individuals with ASD and intellectual disability,54, 55 however specific measures of developmental and behavioral profiles of included individuals were quite variable and often lacked adequate description across studies. One study explicitly included high school students able to use a computer and program a digital device,57 but specific cognitive and behavioral characteristics of this group were not well described. The remaining study included individuals attending a special school and likewise did not report explicit standardized measurements of the developmental and behavioral characteristics of the group apart from ASD diagnosis.56

Studies of certain adaptive/life skills interventions based on intensive application of highly specified programs focused on individuals with ASD with profound cognitive impairments, while specific technological and educational structure-related interventions targeted individuals with cognitive abilities closer to developmental expectations. However, given the variability and limited information concerning developmental, cognitive, and behavioral characteristics of study populations in this category, it is unclear how findings from these studies might apply across varying individuals with ASD. Furthermore, given methodological limitations in study design and time frame, it is not only unclear how adaptive/life skills interventions apply to varying groups of individuals, but it is unclear whether they represent intervention enhancements with meaningful effect over time.

Vocational Interventions

Although often not well characterized, the populations from studies examining the efficacy of supported employment/vocational interventions likely represent higher-functioning adults with ASD. Studies were conducted in the United States, United Kingdom, Spain, and Germany, and two specifically targeted adults with high-functioning autism or Asperger syndrome. One study included those who had nonverbal IQ scores above the 35th percentile. Although a fourth study included adults with a range of intellectual functioning, all adults were required to have “acceptable professional and vocational abilities.” The final study did not report on the intellectual functioning of the sample.

Supported work interventions ranged in duration from 2 years to 8 years, and included job finding services and job coaches who accompanied adults with ASD to the worksite. Comparators included adults in a sheltered work setting (i.e., sheltered workshop) as well as adults who were receiving no supported employment services. The most common outcome assessed was the presence/absence of a job in the community. Other aspects of employment that were sometimes examined included the length of time employed, number of hours working per week, and wages. One study each assessed autism symptoms, quality of life, and cognitive functioning. Overall, participants in these studies were drawn from the community and thus reflect characteristics of the larger population of higher functioning individuals. Interventions also took place within the larger community. Jobs located were typically support or service positions and do not reflect the scope of employment possibilities potentially available for individuals with ASD with more developed cognitive abilities or social and communication skills.

Medical Interventions

Studies of Antipsychotics

Three RCTs, including mostly adolescents and young adults (age 13 to 30 years) but not limited to this range, examined antipsychotics. Although the mean age was within this range the populations include younger children and older adults. All of the studies used Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition (DSM-IV) criteria-based diagnoses of autistic disorder as an inclusion criterion. One risperidone study also included individuals with pervasive developmental disorder-not otherwise specified (PDD-NOS). Inclusion criteria for the two risperidone studies also included a minimum level of problem behaviors. The mean IQ of the patients was in the range of intellectual disability in the two risperidone studies, while the haloperidol study did not report IQ. Doses of risperidone or haloperidol in all three RCTs were within the range of doses used clinically for some adolescents and young adults with ASD.

All three RCTs assessed aggressive behavior, repetitive behaviors, and general autism symptoms. All of the studies monitored for adverse effects (extrapyramidal and others) either clinically or with specific assessments. Some, but not all, of the studies specifically assessed repetitive behaviors, self-injurious behavior, social relationships, or language. All three of these RCTs were conducted in academic clinic settings in the United States and Canada. The characteristics of these settings may limit applicability.

Studies of Opioid Receptor Antagonists

One placebo-controlled RCT assessed naltrexone and included adult subjects with Diagnostic and Statistical Manual of Mental Disorders, Third Edition, Revised (DSM-III-R) criteria-based diagnoses of autistic disorder. Participants also reportedly had intellectual disabilities. Naltrexone dose in one cohort was 50 mg/day but in the second cohort was increased to 150 mg/day. The increased dose was slightly higher than other studies cited, and the clinical applicability of these doses to patients with ASD has not been established.

The primary outcome was self-injurious behavior. Additional outcomes included irritability, stereotypy, hyperactivity, inappropriate speech, social withdrawal, and global clinical improvement. This RCT was conducted in an academic clinic setting in the Netherlands, and the applicability may be limited by this setting.

Studies of SRIs

Five studies (two placebo-controlled RCTs and four case series) investigated SRIs including clomipramine, fluvoxamine, sertraline, and fluoxetine. All participants had DSM-IV or DSM-III-R criteria-based diagnoses of autistic disorder. Two of studies also included other types of ASD (e.g., PDD-NOS and Asperger syndrome). Most of the subjects in these studies were adolescents and young adults (ages 13 to 30 years). The mean age was within this range, although some younger children and older adults were included. Drug dosages used in these studies were consistent with doses used clinically for some adolescents and young adults; however, the clinical applicability of these doses to patients with ASD has not been established.

Most of the studies assessed repetitive behaviors, aggressive behavior, and general autism symptoms. Some, but not all of the studies specifically assessed self-injurious behavior, social relationships, or language. All studies were conducted in academic clinic settings in the United States and Canada. The applicability of these studies may be limited by these settings.

Allied Health Interventions

The five studies49, 5860, 70 of allied health interventions meeting our criteria included disparate groups of individuals and interventions. Three of the studies explicitly included individuals with intellectual disability,49, 59, 70 and participant ages ranged widely, though most were in the adolescent range. With the exception of an RCT of a recreation program49 employing a waiting list control condition, studies were case series and thus lacked comparison groups. In studies of facilitated communication, all participants engaged in communication trials in which the facilitator was either aware or not aware of the word or image being prompted. Outcomes included quality of life and stress level in the recreation program RCT, socials skills-related outcomes in studies of music therapy, and language/vocabulary in studies of facilitated communication. Interventions occurred in university-based or specialized developmental disabilities treatment centers and may not be widely available to the larger community with ASD. Studies were short term with the exception of the recreation program RCT,49 which assessed individuals after 12 months of participation.

Gaps in the Evidence

Methodologic Considerations

A number of methodologic considerations may be helpful for understanding the current state of the literature and for guiding future research. Of the 32 studies included in the report, 18 used a comparison group. Of those, 11 applied random assignment, and of those 11, 3 were assessed to have randomized appropriately. The rest of the studies were case series or cross-sectional. Few studies in this area are prospective trials, most being retrospective program evaluations, which have substantial risks of bias.

Growth in the number of studies with greater attention to rigorous design for the purpose of studying effectiveness will provide additional information for those making decisions about care in the future. Over half (18 of 32) of the studies reported use of an adequate diagnostic approach, and we suggest that future research attend to improved reporting about the basis for diagnosis of individuals included in the studies. Most, but not all (26 of 32) fully described inclusion and exclusion criteria, which is helpful for characterizing the population and assessing the applicability of the evidence. Reporting of either fidelity (for behavioral studies) or treatment adherence was low, with eight studies reporting fidelity and five studies reporting adherence. Again, this information is important to end users of the research for assessing applicability and understanding the implications of the results.

Methodologic strengths in this literature included the use of valid outcomes measures (29 of 32 studies), appropriate sources (e.g., teacher or parent report) of outcome data (31 of 32 studies), and appropriate statistical analysis (26 of 32) for the study design.

Future Research

The period of development representing the transition from adolescence to early adulthood presents numerous challenges for individuals with and without neurodevelopmental challenges. During this same interval individuals with ASD are presented with additional complexities that require efforts to maximize the possibility of a positive transition and achievement of individual goals for independence. Nonetheless, and despite increasing numbers of adolescents facing this transition, no area of research provides sufficient strength of evidence for the impact of specific intervention strategies in terms of improving important outcomes for specific groups of individuals with ASD.

Overall, there is a dearth of evidence in all areas of care for adolescents and young adults with ASD, and it is urgent that more rigorous studies be developed and conducted. It is unlikely that large scale implementation of interventions will be considered until a stronger evidence base is developed, despite growing numbers of individuals with need, and some small studies demonstrating initial promise. A fruitful area for consideration may be identifying programs/interventions that are appropriate candidates for developing treatment manuals to encourage standardized replication of promising approaches.

Basic understanding of the effects of aging on health, cognitive skills and other domains of functioning is absent, and evaluations of interventions are rare. The lack of randomized, controlled trials is notable in all categories of intervention, but especially so in medical interventions, where substantial adverse events may be associated with medication use in adolescence. Only three studies reported more than 12 months of followup 17, 54, 74; longer term data are needed in all areas of therapy. Furthermore, although early intervention for individuals with ASD is often delivered in the home or at specialized agencies, behavioral and educational interventions for adolescents and adults with ASD are likely to take place in existing community-based settings such as schools and businesses, with non-specialists having a key role in implementation. Thus, another critical issue is to design interventions for implementation in such settings.

The behavioral literature generally focuses on subsets of individuals with ASD, often those who are higher functioning, and may not be representative of the range of individuals with ASD. In particular, more attention is warranted to understanding the impact of behavioral interventions in the lives of individuals and how these interventions generalize to real-world impact and outcome. Few studies addressing educational interventions in the adolescent and young adult population have been conducted, and studies focusing on life skills or adaptive behaviors have included few individuals in typically short-term studies focused on very specific short-term intermediate outcomes. More research in both areas over a broader time frame with more clearly defined populations is critical for helping individuals with ASD transition to greater independence.

In vocational research, studies are needed that illuminate which aspects of multifaceted supported employment programs have the greatest impact. Studies that do show evidence of effectiveness in this area should collect longer-term data to describe the degree to which findings, including the duration of employment, continue after the intervention itself is removed. These studies should also broaden the outcomes measured, to include other functional outcomes such as quality of life, educational attainment, residential outcomes and social outcomes. Similarly, allied health studies are needed to understand best approaches to fostering independent living skills and ways in which improvements in motor skills may affect communication and other domains.

Medical studies conducted in adolescents and young adults have focused largely on problem behaviors, and additional data are needed on medical comorbidities in adolescents with ASD. Clear evidence from earlier studies of antipsychotics, which included mostly younger children, supports the use of risperidone and aripiprazole in children with ASD. The only fair quality study of risperidone in adults is consistent with the findings in children, but the strength of evidence based upon the adult literature alone is insufficient to draw firm conclusions. Population studies may be helpful to empirically group ASD patients by age in a way that fosters more effective studies of treatments. Understanding the age-appropriateness of potential medical treatments as based on social, physiological, pharmacological, and functional characteristics of the population would help to prioritize future research, including the ways in which medical comorbidities arise or increase as children with ASD move into adolescence and adulthood. Increased use of standardized age groupings would facilitate comparisons of effectiveness within medical intervention categories as well as with non-medical therapies. One way to support accomplishing this is by developing treatment networks with adequate numbers of patients of varying ages to participate in research.

Thus far, medication research in adolescents and young adults with ASD has been limited to compounds that are already approved for other indications. As targeted treatments for ASD emerge, initial studies will need to study adult populations to establish safety before moving into studies of adolescents and finally children. Study of compounds not yet on the market could be facilitated with partnerships between the academic and pharmaceutical communities. It will be critical to consider the appropriate outcome measures and settings in which to study medication response in adults. The heterogeneity in settings for adults with ASD is a significant impediment to assessing symptom response. Ideally, medications would be combined with an educational or psychosocial intervention that would mirror the school and therapeutic settings in which children with ASD show improvements in social, communication, or behavioral function. Without some level of educational or social challenge, it may be quite difficult to assess medication response.

Across all intervention types, research is needed on which outcomes to use in future studies. The Aberrant Behavior Checklist is a widely used, easily repeatable, and highly sensitive outcome measure for behavioral symptoms in ASD, but it does not directly index anxiety, mood, social, or communication function, nor does it capture broader outcomes such as quality of life. More outcome measures are needed to allow assessment of a broader range of symptoms, particularly in individuals who may be higher functioning. No studies provide adequate information on longer-term outcomes, and particularly on outcomes related to achieving goals for independence and quality of life. To some degree, this reflects a lack of understanding and consensus about optimal outcomes and how to measure them. We know little about which outcome measures are most appropriate and valid for this population specifically; nor do we have good, empirical evidence about which outcomes are valued by individuals and their families. Furthermore, it is unclear which outcomes are most likely to change as a result of the very different types of interventions assessed in this population. Substantial, foundational research should be done to identify and validate outcome measures in the adolescent and young adult population with ASD.

Research is also necessary to understand how individuals’ expression of ASD symptoms and the severity of symptoms may affect treatment over the lifespan. Foundational research is necessary to understand the goals of individuals with autism and their families as future research studies are planned. Similarly, little research addressing the effects of family and caregiver interactions and characteristics on the responses of individuals’ with ASD to interventions exists. Finally, for all research in this area, we encourage greater transparency in reporting, particularly as it relates to reporting of randomization approaches, characterization of study participants, description of the intervention and measures of fidelity and adherence. These are all necessary to understand correctly the potential impact of the interventions being reported.

Conclusions

Given the number of individuals affected by ASD, there is a dramatic lack of evidence on best approaches to therapies for adolescents and young adults with these conditions. In particular, families have little in the way of evidence-based approaches to support interventions capable of optimizing the transition of teens with autism into adulthood. Most of the studies identified were poor quality; while the five fair quality studies were primarily of medical interventions. Behavioral, educational, and adaptive/life skills studies were typically small and short term and suggested some improvements in social skills and functional behavior.

Individual studies also suggested that vocational programs may increase employment success, but the studies were small. By the same token, few data address the effectiveness and harms of medical or allied health interventions in the adolescent and young adult population. Although the studies that have been conducted focused on the use of medications to address specific challenging behaviors, the effectiveness in managing irritability and aggression in this age group remains largely unknown and can at best be inferred from studies including mostly younger children.

PubReader format: click here to try

Views

  • PubReader
  • Print View
  • Cite this Page
  • PDF version of this title (2.9M)

Recent Activity

Your browsing activity is empty.

Activity recording is turned off.

Turn recording back on

See more...