critical thinking important to intervention for individuals diagnosed with asd to ensure that

The Importance of Critical Thinking in ASD Intervention: Ensuring Effective Strategies for Individuals

Table of Contents

• Understanding Autism Spectrum Disorder (ASD)
• The Role of Critical Thinking in ASD Intervention
• The Connection Between ABA Therapy and Critical Thinking
• Key Strategies for Enhancing Critical Thinking in ASD Intervention
• The Importance of Parental Involvement in ASD Intervention
• Navigating the Challenges: Effective Communication and Support for Parents
• Empowering Individuals with ASD: Skills Development and Management of Challenging Behaviors
• Building a Supportive Community: Collaboration and Growth in ASD Intervention
• Staying Updated: The Role of Resources and Latest News in Successful ASD Intervention

Introduction

Understanding and effectively supporting individuals with Autism Spectrum Disorder (ASD) is crucial for creating an inclusive and supportive environment. This article explores various aspects of ASD intervention, including the role of critical thinking, the connection between Applied Behavior Analysis (ABA) therapy and critical thinking, strategies for enhancing critical thinking in intervention, and the importance of parental involvement. Additionally, it delves into the challenges faced by parents, effective communication and support, skills development, management of challenging behaviors, building a supportive community, and staying updated with the latest resources and news in successful ASD intervention. By addressing these topics, we aim to provide valuable insights and guidance to professionals, parents, and caregivers involved in supporting individuals with ASD.

1. Understanding Autism Spectrum Disorder (ASD)

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2. [The Role of Critical Thinking in ASD Intervention

Join our community and collaborate with professionals and parents to enhance critical thinking in ASD intervention.

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3. The Connection Between ABA Therapy and Critical Thinking

Unlock the potential of children with autism and ADHD by implementing effective strategies for critical thinking in ABA therapy.

4. Key Strategies for Enhancing Critical Thinking in ASD Intervention

5. the importance of parental involvement in asd intervention, 6. navigating the challenges: effective communication and support for parents, 7. empowering individuals with asd: skills development and management of challenging behaviors, 8. building a supportive community: collaboration and growth in asd intervention, 9. staying updated: the role of resources and latest news in successful asd intervention.

In conclusion, this article provides valuable insights and guidance on various aspects of ASD intervention. It emphasizes the importance of understanding and effectively supporting individuals with Autism Spectrum Disorder (ASD) in order to create an inclusive and supportive environment. The role of critical thinking in ASD intervention is highlighted, along with the connection between Applied Behavior Analysis (ABA) therapy and critical thinking. Strategies for enhancing critical thinking in intervention are discussed, as well as the crucial role of parental involvement.

The broader significance of these ideas lies in the potential to improve the lives of individuals with ASD. By implementing effective interventions that promote critical thinking and involving parents in the process, we can create a more supportive and empowering environment for individuals with ASD. This article also addresses challenges faced by parents, such as effective communication and support, skills development, management of challenging behaviors, and building a supportive community. By staying updated with the latest resources and news in successful ASD intervention, professionals, parents, and caregivers can continue to improve their support for individuals with ASD.

To learn more about supporting individuals with ASD and implementing effective interventions, start now at ASD Media .

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SYSTEMATIC REVIEW article

Cognitive remediation interventions in autism spectrum condition: a systematic review.

• 1 Department of Psychological Medicine, Institute of Psychology, Psychiatry and Neuroscience, King’s College London, London, United Kingdom
• 2 Department of Psychology, National Eating Disorder Service, South London and Maudsley NHS Foundation Trust, London, United Kingdom
• 3 Department of Psychology, Illia State University, Tbilisi, Georgia

Background: Autism spectrum condition (ASC) is a lifelong neurodevelopmental condition characterized by difficulties in social cognition and heterogeneity of executive function which are suggested to be underpinned by neurobiological, prenatal and genetic factors. Cognitive remediation (CR) interventions are frequently used to address cognitive characteristics and improve cognitive and general functioning. However, the evidence is limited for ASC. This systematic review is the first to provide a narrative synthesis of all studies of CR interventions and ASC. The review aimed to delineate the development of research in this area in both adolescents and adults, with implications for clinical practice and future research.

Method: The review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta‐analysis (PRISMA) statement. The literature was reviewed using the PubMed, PsycINFO, Web of Science, Scopus and Embase from inception to 1st April 2020. Out of 1,503 publications, a total of 13 papers were identified as being relevant for the review.

Results: The 13 studies meeting the inclusion criteria were: four randomized control trials (RCTs); two non-randomized control trials, four case series, two feasibility studies and one case study. A narrative synthesis of the data suggested that CR interventions are potentially effective in improving social cognition and cognitive functioning in ASC. RCTs supported the efficacy of CR interventions in improving social cognition and executive functioning. Non-randomized control trials provided evidence for the effectiveness of social cognition remediation interventions in ASC. Case series and a case study have also supported the feasibility of CR interventions, including reflections on their adaptation for ASC populations and the positive feedback from participants.

Conclusions: CR interventions are potentially effective in improving social cognition and cognitive functioning in ASC. However, the generalizability of the included empirical studies was hampered by several methodological limitations. To further strengthen understandings of the effectiveness of CR interventions for ASC, future RCTs are needed with larger sample sizes in exploring the long-term effectiveness of CR interventions, using age-appropriate valid and reliable outcome measures. They should also consider the heterogeneity in neuropsychological functioning in ASC and the mediating and moderating mechanisms of the CR intervention for ASC.

Introduction

Autism spectrum disorder (ASD) is a lifelong neurodevelopmental condition characterized by differences in reciprocal social interaction, communication, language, and restricted and repetitive behaviors ( 1 ). Although the term ASD is the term used for medical diagnosis, we instead use the term Autistic Spectrum Condition (ASC), which is the preferred term by people with the life experience of this diagnosis ( 2 ). In the 1980s, ASC was considered uncommon with a prevalence estimate of around 22 in 10,000 ( 3 ). Nonetheless, with increasing recognition the ASC prevalence estimate is now considered to be approximately one in 100 and relatively common ( 4 ).

ASC is associated with a spectrum of manifestations and behaviors that affect individuals in different ways. However, these surface differences are theorized to be underpinned by a common cognitive profile: inflexibility of thinking and heightened attention to detail ( 5 , 6 ). Furthermore, ASC is characterized by difficulties in social cognition and heterogeneity of executive function which are suggested to be underpinned by neurobiological, prenatal and genetic factors ( 7 ). A recent systematic review and meta-analysis aimed to systematically map non-social and social cognitive functioning in autistic adults ( 8 ). Overall, the findings from 75 included studies comprising of 3,361 autistic people supported the notion that autistic adults show difficulties in non-social and social cognitive domains (theory of mind, verbal learning and memory, emotional processing and perception, and processing speed). This review highlights the significance of identifying remediation interventions that target non-social and social cognition.

The timely identification of ASC can improve quality of life by identifying needs and providing appropriate interventions ( 9 ). It has been suggested that cognitive remediation (CR) interventions targeting this underlying cognitive profile may be particularly beneficial for this population ( 10 ). CR interventions are an umbrella term for psychological interventions that use cognitive training exercises to remedy difficulties in social cognition and neuropsychological functioning. CR interventions aim to encourage patients to reflect on their thinking styles, planning strategies to enable them to make behavioral changes ( 11 ).

The use of cognitive training and later CR remedial interventions were originally developed for use in brain lesions ( 12 , 13 ) and were then broadened for patients with schizophrenia ( 14 , 15 ); and adapted further for patients with anorexia nervosa (AN); ( 11 ). CR interventions have demonstrated significant improvements in neuropsychological tests of set-shifting ( 16 , 17 ).

To date, four randomized control trials (RCTs) have been conducted on the use of CR interventions and ASC. The findings from these trials indicate that CR interventions can be effective in improving cognitive flexibility, social cognition and heterogeneity of executive function ( 10 , 18 – 20 ). However, the translation of the empirical study findings to further clinical work in this field is hampered by methodological limitations such as heterogeneity in participants clinical presentations, variability in outcome measures used and small sample sizes. Additionally, it is possible that standard CR interventions developed for other populations may benefit from adaptations for ASC populations, an area of research relevant to the successful clinical implementation of these interventions in this field.

Therefore, this systematic review aims to contribute to the field of ASC interventions by presenting a narrative synthesise of all peer-reviewed published studies of CR approaches in this area. To our knowledge, this is the first paper to review the literature specifically for CR interventions and ASC. Hence, the paper aims to add to the field by providing a chronological outline of the current literature and to discuss the implications of these findings for future work in this area.

Review and Search Strategy

The review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta‐analysis (PRISMA) statement ( 21 ). The literature was reviewed using the PubMed, PsycINFO, Web of Science, Scopus and Embase from inception to 1st April 2020. The search terms used were autis*—Asperger* and cognit* with remed*—or train*–neuropsychology—cognitive remediation therap*. These terms allowed for multiple spellings, plurals and combinations.

Inclusion Criteria

The pre-determined inclusion criteria were [1] only published, peer-reviewed English language journals; [2] studies of any design (quantitative or qualitative) focusing on CR interventions and ASC [3] empirical studies that include either adolescents or adults [4] studies using any modality of treatment e.g. individual sessions or group sessions.

The definition of CR interventions used for this review was not restricted to cognitive remediation therapy (CRT) but included other CR approaches such as cognitive enhancement therapy, social cognition remediation programs, brain training tasks, flexibility training, or CR interventions that had been adapted for other populations and used for those with ASC. Additionally, the review included studies examining CR approaches in relation to autistic traits, as well as in populations with diagnosed ASC. Furthermore, no limitations were set regarding age or measure of neuropsychological characteristics. This allowed for a wider search.

Exclusion Criteria

Non-English language publications ( 22 ) and empirical studies that were not published in peer-reviewed journals were excluded. Secondary systematic or narrative reviews on the wider topic of CR interventions in mental health were also excluded ( 23 – 26 ). However, the first author (YD) and principal author (KT) did hand search the reference list of the reviews for studies relevant to ASC populations to ensure that all empirical studies were included in the final analysis for the review.

Study Selection and Data Extraction

The database searches and study selection were undertaken by five authors. Figure 1 provides the PRISMA flow diagram ( 21 ) of the studies retrieved for the review. The PubMed yielded 478 publications, PsycINFO 619 publications, Web of Science 137 publications, Scopus 239 publications and Embase 30 publications. Together the five searches yielded 1,503 publications. Publication titles and abstracts were screened initially, and eligibility was established by reading the full texts. Duplicates and those that did not meet the inclusion criteria outlined below were removed. A manual reference search by exploring the reference list of the eligible publications was also conducted by the first author (YD) and principal author (KT) to identify additional papers of relevance. A total of 13 papers were then concluded as being relevant.

Figure 1 PRISMA flow diagram of the studies retrieved for the review.

Data Analysis

Due to the significant heterogeneity between participant characteristics and outcome measures used, it was not feasible to pool the data and undertake a meta-analysis. Therefore, a narrative method of analysis was undertaken.

Study Selection

Table 1 summarizes information about the studies included in the systematic review based on the inclusion criteria. Publications are stratified according to publication type and chronological order, giving insight into how research in this area has developed from case series to RCTs. This paper restricts itself to summarizing the findings narratively. CR interventions and ASC was examined in 13 studies; four RCTs ( 10 , 18 – 20 ); two non-randomized control trials ( 27 , 28 ); four case series ( 30 – 32 , 34 ); two feasibility studies ( 29 , 33 ) and one case study ( 35 ). Table 1 includes a summary of limitations associated with each study that may impact interpretation.

Table 1 Characteristics of the included studies.

Interventions

All of the interventions used in these studies were originally developed for use in other populations, rather than specifically designed for autistic people. The majority of the studies ( n = 7) identified in the systematic review evaluated Cognitive Remediation Therapy (CRT) interventions, originally designed for use in people with schizophrenia ( 78 ). Three studies utilized this original program, which included modules targeting cognitive flexibility, memory, and planning ( 20 , 30 , 32 ). More recently CRT has been adapted for use in people with AN, a manualized approach focusing on cognitive flexibility and additions were made to address central coherence—meaning that the adapted manual for eating disorders added cognitive exercises supporting participants in “bigger picture” thinking ( 11 ). This intervention was used in four studies ( 31 , 33 – 35 ).

Two studies investigated Cognitive Enhancement Therapy ( 19 , 29 ). CET is a manualized CR approach originally developed for people with schizophrenia that integrates computer-based neurocognitive training with group-based training in social cognition ( 39 ). Other interventions focusing on social cognition remediation include the Social Cognition and Interaction Training (SCIT); ( 79 ), which is a group intervention that was initially developed for adults with psychotic disorders. One study used SCIT modified for autism ( 28 ). SCIT targets various components of social cognition, including theory of mind, emotion recognition, and attributions as well as social interaction skills.

The use of social cognition remediation interventions using computer-based protocols to improve the theory of mind in autistic people was also used in a further two studies ( 18 , 27 ). This included the Mind Reading intervention ( 80 ) which is a computer-based program on emotions and mental states. It is aimed for children and adults to improve their ability to recognize emotions in others. The three main sections in the program include the Emotions Library (allows people to browse through different emotions and emotion groups), the Learning Centre (utilizes lessons and quizzes to teach emotions in a structured and directive way) and the Games Zone (comprises of educational games while studying about emotions). Finally, one study ( 10 ) utilized the cognitive flexibility and working memory modules of a computerized executive functioning training program designed for children with Attention Deficit Hyperactivity Disorder (ADHD) known as ‘Braingame Brian’ ( 81 ).

Randomized Control Trials

The first RCT study on the social cognition remediation effects on ASC provided a preliminary evaluation of the use of social cognition remediation, using a computer-based program they designed to test and to teach the recognition of facial affect and improve theory of mind in autistic adults ( 18 ). Five of the participants were randomly assigned to receive the computer treatment and five were in the control group ( n = 10). The results indicated a statistically significant improvement in facial affect ( p < 0.05, d = 3.59) in the intervention group post the computer-based program.

Cognitive remediation effects on ASC were then explored through working memory and cognitive flexibility-training for autistic children using computerized cognitive training ( 10 ). The final sample included 121 children who were randomly assigned to an adaptive cognitive flexibility training, an adaptive working memory training or non-adaptive training. ‘Braingame Brian’ ( 81 ) a computerized executive function training with game elements was used. They reported no significant change in neurocognitive and psychosocial outcomes and disorder-related symptoms ( p >.05) with a small effect size (η p 2 = 0.01–\0.06). A marginal effect of improvement in working memory, cognitive flexibility, and in disorder-related symptoms was also highlighted.

The following RCT investigated the effects of CRT using the frontal/executive program (FEP) for ASC compared to treatment as usual (normal supportive psychotherapy), ( 20 ). The final sample of 14 autistic adults were randomly assigned to one of the groups. Of the initial 15 adults, seven (three males and four females) were assigned to the intervention group, seven (five males and two females) were assigned to the control group and one person dropped out. After completion in the FEP program they reported the intervention group significantly improved in cognitive functioning ( p = 0.018) working memory ( p = 0.018), verbal fluency (p = 0.008) and planning ( p = 0.012) with a large effect size ( d = 2.73).

To date, the final RCT then examined the efficacy of Cognitive enhancement therapy (CET); ( 39 ) in an 18-month CR intervention for improving the core cognitive and employment outcomes in 54 autistic adults ( 19 ). Participants were randomly allocated to either the CET intervention which incorporates computerized neurocognitive and social-cognitive remediation or an active Enriched Supportive Therapy (EST); ( 82 ) comparison focused on psychoeducation and condition management. Participants included 32 adults and seven adolescents. The results indicated that CET significantly ( p <.05) increased neurocognitive function in comparison to EST ( p = 0.13) and there was a medium effect size ( d = 0.46). Although EST was linked to social cognitive improvements, CET demonstrated a larger improvement in social cognition ( p = .020) with a medium effect size ( d = 0.58).

Non-Randomized Control Trials

The first non-randomized control trial utilized social cognition remediation interventions, which concentrated on improving the theory of mind in autistic adults ( 27 ). This systematic review will focus on experiment two they reported in their study where the outcome focused on social cognition. The authors used the Mind Reading intervention ( 80 ) for autistic adults with weekly support of a tutor for the intervention group. This group was then matched to a control group of autistic adults attending social skills training then another general population control group. 13 adults were included in each group ( n = 39). Improvement of emotion recognition skills was the target outcome measure. Participants were included through two support organizations and two colleges for autistic people. Autistic participants had all been diagnosed using the established criteria ( 83 ). Self-reported autistic traits were then assessed using the Autism Quotient (AQ); ( 84 ) and the parent version of the AQ ( 85 ). The authors found significant improvements on measures of face and voice recognition in the intervention group ( p < 0.001, d = 0.14).

A subsequent non-randomized control trial then aimed to evaluate the efficacy of social cognition remediation to improve social-cognitive functioning in high functioning autistic adults ( 28 ). The authors investigated the impact of group-based Social Cognition and Interaction Training (SCIT); ( 79 ) modified for autism to treatment as usual in a pilot study using a non-randomized control trial. The sample included 11 participants. Six adults received SCIT for autism and five received treatment as usual. They reported that participants who received the intervention showed significant improvement in theory of mind skills and trend level improvement in social communication skills ( p < 0.05). The within-group effect size also indicated a large treatment effect ( d = 0.94).

Case Series and Case Study

Two different types of case series were identified: studies focusing on pre and post CR assessments in single or multiple case series and feasibility studies. The first case series in this area was a feasibility study ( 29 ), in which authors examined the feasibility of Cognitive enhancement therapy (CET); ( 82 ) for autistic adults. Participants included ( n = 14) young adults (12 males and two females). They were recruited to participate in an uncontrolled, 18-month trial of CET adapted for autistic adults. The authors reported that CET made a statistically significant ( p < 0.001) improvement in cognitive performance, social behavior and social cognition and social functioning proved to be the largest domains of improvement within this study with a large effect size ( d = 1.40–2.29).

A cross-sectional study then investigated whether a CRT intervention developed for adults with schizophrenia ( 78 ) improved cognitive function in autistic children ( 30 ). 16 children referred to the children and adolescent Psychiatric Department in Tunisia completed the modified version of CRT adapted for children. The main outcome measures; clinical symptoms, executive function and school performance was calculated at baseline and one week after completing the CRT intervention. CRT showed significant positive effects on clinical symptoms ( p = 0.001) and working memory ( p = 0.006) for autistic children.

The treatment response of group CRT for people with AN ( 11 ) was then examined in patients with AN and high or low autistic traits ( 31 ). Participants included 35 adults with a diagnosis of AN by a consultant psychiatrist based on the Diagnostic and statistical manual of mental disorders, fifth edition (DSM-IV); ( 1 ) with high or low autistic traits ( 40 ) on an inpatient eating disorder unit. All participants completed self-report questionnaires on motivation and thinking styles before CRT and then after CRT. The results indicated that patients with high autistic traits showed no statistically significant ( p >.05) improvements and negligible effect sizes in the self-reported outcome measures for CRT ( d = 0.10).

In another cross-sectional study, CRT ( 78 ) adapted for autistic children and adolescents was used to evaluate the effectiveness on executive functions, clinical symptoms and school performance ( 32 ). The final sample included 16 young people. Participants were evaluated pre-CRT intervention and post-CRT intervention. The results supported that after CRT, the young autistic people showed significant improvements in intellectual abilities, phonemic flexibility, working memory, school results and clinical symptoms ( p < 0.05) with a small effect size (r 2 = 0.95).

Two more recent case series have examined the use of a CRT intervention for people with AN in both autistic people, and people with high autistic traits ( 11 ). A small prospective pilot study in Japan ( 33 ) then aimed to investigate the effectiveness and feasibility of CRT for anorexia nervosa ( 11 ) for ASC individuals. 19 patients diagnosed with ASC were included in the study. Outcome measures were given to participants pre-CRT, post-CRT and at 3-month follow-up. Results demonstrated an increase in the patient’s central coherence following CRT. However, these results were not statistically significant ( p >.05) although the magnitude of the effect was large ( d = 0.80).

Furthermore, a preliminary study aimed to examine the difference in the effects of individual CRT treatment for adult female’s diagnosed with anorexia nervosa with either high or low ASC characteristics ( 34 ). In total 99 inpatients on an eating disorder unit were initially included in the intervention. Out of the 99 inpatients, 59 patients met the threshold for high autistic traits using the 10-Item Autism Spectrum Quotient (AQ‐10); ( 40 ). However, there was only complete data for 25 (41%) of the patients that scored with high autistic features. The results indicate that participants with high autistic features showed significant improvements in cognitive flexibility ( p < 0.001) after CRT with a large effect size ( d = 0.77). However, scores did not show a statistically significant improvement in central coherence ( p >.05), although there was a larger mean difference of −0.15 (0.38).

The clinical implementation of CRT for AN in ASC populations was investigated in more detail in a single case study ( 35 ). To the authors’ knowledge, this is the only case study in this area. They investigated the feasibility of individual CRT adapted for AN ( 11 ) for a complex single case study of a 21-year-old inpatient female diagnosed with anorexia nervosa and ASC. The paper reflects on possible adaptations to enhance the efficacy of CRT for this population. The results suggested improvements in central coherence and cognitive flexibility following CRT. The authors argue that this study provides preliminary support of the efficacy of individual CRT, before proceeding to more complex psychological work, such as cognitive behavioral therapy.

Summary of Main Findings

This systematic review aimed to contribute to the field of ASC by presenting a narrative synthesis of all studies of CR interventions and ASC. Thirteen studies met the pre-determined inclusion criteria. However, several methodological challenges made it difficult to appraise the empirical studies comprehensively. Overall, the results suggest CR interventions are potentially effective in improving social cognition and cognitive functioning in ASC. The review findings are broadly consistent with an earlier review that focused on the current status of CR for psychiatric disorders ( 26 ). However, the review only included two RCTs on CR interventions and ASC ( 10 , 20 ).

The four RCTs presented in this paper, although varying in terms of study design, aims and sample characteristic, depict how CR interventions are currently being implemented in diverse settings for ASC. The first RCT study on the social cognition remediation effects on ASC ( 18 ) found an improvement in social functioning and theory of mind in autistic people. Though, limitations of this study included its small sample size, which affected power and limited the generalizability of the findings and its gender bias by only including male participants. Two further studies ( 10 , 20 ) then supported the efficacy of CR interventions in improving working memory. One of these studies reported that a CRT intervention using the frontal/executive program is effective in improving executive functioning in ASC patients, and in particular to those with impaired frontal lobe function ( 20 ). However, the limitations of this RCT included its small sample size. There was also no follow-up investigation to determine the persistence of effect. A following RCT then found that CET increased neurocognition function and improved non-social and social cognition for ASC individuals in comparison to the control group ( 19 ). However, the small sample size affected power and the treatment conditions were also not matched in terms of the hours of treatment received.

Despite the limitations of the RCTs, three of the studies ( 18 – 20 ) support the feasibility and potentially effective treatment of CR interventions for core cognitive and social cognition domains in autistic adults. However, one of the RCTs found that the computerized executive training with game elements ‘Braingame Brian’ ( 81 ) at present will not be feasible for autistic children due to the absence of a clear effect and high attrition rate ( 10 ).

The two non-randomized control studies included in this review utilized computer-based social cognition remediation to improve the theory of mind in autistic people ( 27 , 28 ). Both their results showed an improvement in social cognition for autistic people following the interventions. However, it is important to note that while there is an increasing trend in the use of computer-based interventions and approaches, at present there is no research evidence supporting that they are more effective than non-computer-based interventions. Although computer-based interventions can provide controlled and structured assessments, they can be different to real-life. For instance, in one of the studies, participants reported that they found it easier to recognize emotions and mental states on the computer instead of in real-life social situations ( 27 ). Hence, the interpretation of findings from computer-based programs to real-life functioning should be interpreted with caution.

Studies identified were predominantly case series and have supported the feasibility and acceptability of individual CR interventions with positive feedback from participants ( 29 , 30 , 32 – 34 ). However, the case series identified had small sample sizes which resulted in a lack of power to detect statistical differences and limits the generalizability of the findings. The design of these studies also cannot draw causal conclusions about the effect of CR interventions. Additionally, one cross-sectional study examined group CRT for those with high autistic traits and found no improvements following the intervention ( 31 ). The intervention used was CRT for anorexia nervosa ( 11 ) that may have needed to be adapted further for ASC participants. In particular, the group environment may have presented additional difficulties for participants on the spectrum.

Notwithstanding the findings from the studies included in the review, caution is apt in concluding the current evidence for several other reasons. Some participants in the studies on AN populations did not have a full ASC diagnosis and were only assessed using ASC screening tools and self-report questionnaires ( 31 , 34 ). However, people with AN on the spectrum are often undiagnosed, and these screening tools are used clinically to inform diagnostic referrals ( 86 ).

Furthermore, the studies in this review used various CR programs for a diverse range of age groups, with a variety in intensity, duration, measurement tools and target of the cognitive domain. Thus, this diversity may contribute to inconsistent findings and effect sizes as evident in Table 1 . In addition, the potential role of other variables is unclear from the present research. For example, the training each facilitator may have had for delivering CR interventions may have also differed, and the results may have been affected by participants learning effect. Finally, ASC research typically focuses on males which are also evident in some of the studies included in this review. Compared to males, females are at elevated risk of their ASC going undiagnosed as their difficulties are frequently mislabeled or missed entirely ( 87 ). This may be a result of the “female phenotype” of ASC characteristics, with females showing fewer repetitive and restricted behaviors than males and prone to “camouflage” their social difficulties ( 6 , 88 ). This review suggests that the field of eating disorders is leading on the inclusion of females with autistic traits in this field of research, with the highest population of female participants self-reporting autistic traits in this review included from this population ( 31 , 34 ).

It is notable that all of the interventions identified in this systematic review were originally developed for use in other clinical populations (brain injury, schizophrenia, AN, ADHD). Previous research on psychological interventions suggests that they may need to be adapted for ASC populations ( 89 ). While larger studies are needed, the single case study presented in this review explored adapting CRT on an individual level, highlighting potential adaptations that can be useful for the ASC population ( 35 ). There is a no ‘one-size-fits-all’ approach as each autistic person is unique, however, possible modifications to CR interventions can include clarifying sensory sensitives, accommodating certain routines and rituals, providing clear examples using a didactic style, reducing the number of skills taught and checking understanding. Other adaptations included the individuals wider social network and using colorful visual materials. One of the case series included in this review also made adaptations to CRT for young autistic people by making the tasks simpler and “funnier” ( 32 ). Furthermore, the CET intervention was also adapted, by including psychoeducation about ASC, providing greater support with the interventions, and adapting the computer program to eliminate sounds that might be uncomfortable for participants with sensory difficulties ( 29 ).

Although some of the studies were limited, they are informative and have useful implications when considering future developments in clinical practice and service provision. Early intervention program for ASC are increasingly being held to the matching standards as traditional medical trials. Thus, the practical and collaborative nature of CR interventions can be appealing for the ASC population as an early intervention. The findings also indicate that clinicians delivering CRT interventions for conditions, particularly eating disorders, should be mindful of the possibility of patients presenting with ASC, or high autistic traits, as this may impact outcomes. Collecting information on ASC characteristics such as social and communication difficulties, restricted and repetitive behaviors, and differences in neuropsychological functioning can assist clinicians in making suitable modifications to meet individual needs.

Implications for research include further rigorous studies with large sample sizes such as RCTs that help to better understand the mediating and moderating factors for CR interventions in ASC, as well as the effectiveness and acceptability of CR interventions. Moreover, it is important to increase research into establishing reliable and valid outcome measures through developing measures tailored to the specific needs of individuals with ASC and determining normative thresholds for this population.

Limitations

This systematic review has several limitations that should be noted. First, although we undertook the search using several databases, we excluded non-English language publications. Second, while we searched the published literature systematically, the potential publication bias could not be eliminated, for instance, retrospectively searching trial registers for any potentially unpublished studies. Finally, the various interventions and outcome measures used in the identified studies prevented a meta-analysis, limiting our ability to draw conclusions around efficacy or to assess the risk of bias.

Conclusions

To our knowledge, this is the first paper that presents a narrative synthesis of all studies of CR interventions in ASC, and the first paper delineating its research development from single case studies to RCTs. The review findings indicate that CR interventions are potentially effective in improving social cognition and cognitive functioning in ASC. However, the generalizability of the included empirical studies was hampered by several methodological limitations. To further strengthen our understanding of the effectiveness of CR interventions for ASC, future studies should focus on [1] developing the evidence base about the mediating and moderating mechanisms of CR interventions in ASC, [2] exploring the long-term effects of the treatment, [3] integrating treatment approaches that target both non-social and social cognition difficulties, [4] devising further large scale RCTs exploring the effectiveness of CR interventions in both adolescent and adult populations using age-appropriate valid and reliable outcome measures, and taking into account the heterogeneity in neuropsychological functioning in ASC.

Data Availability Statement

The original contributions presented in the study are included in the article/supplementary material; further inquiries can be directed to the corresponding author.

Author Contributions

All authors contributed to the literature search (YD, KS, EK, CT, and KT). KT was the principal investigator and supervisor of the study. YD drafted the manuscript, interpreted the main findings, assembled and analyzed the data, and wrote the first paper. All authors contributed to the article and approved the submitted version.

This work was supported by the Health Foundation, (Ref: AIMS ID: 1115447) and by a grant from the Maudsley Charity.

Conflict of Interest

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Acknowledgements

The authors would like to sincerely thank the Health Foundation, an independent charity committed to bringing better health care for people in the United Kingdom (reference AIMS ID: 1115447), and the Maudsley Charity for their support. Maudsley Charity is an independent NHS mental health charity which works in partnership with patients and families, clinical care teams and researchers at South London and Maudsley NHS Foundation Trust, the Institute of Psychiatry, Psychology and Neuroscience, King’s College London, and community organizations, with a common goal of improving mental health, to support innovation, research and service improvement.

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Keywords: autism, cognitive remediation, interventions, therapy, cognitive training, social cognition, adolescents, adults

Citation: Dandil Y, Smith K, Kinnaird E, Toloza C and Tchanturia K (2020) Cognitive Remediation Interventions in Autism Spectrum Condition: A Systematic Review. Front. Psychiatry 11:722. doi: 10.3389/fpsyt.2020.00722

Received: 27 April 2020; Accepted: 09 July 2020; Published: 24 July 2020.

Reviewed by:

Copyright © 2020 Dandil, Smith, Kinnaird, Toloza and Tchanturia. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY) . The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

*Correspondence: Kate Tchanturia, [email protected]

Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.

• Open access
• Published: 26 March 2020

Introduction and methods of the evidence-based guidelines for the diagnosis and management of autism spectrum disorder by the Italian National Institute of Health

• Gian Paolo Morgano 1 ,
• Francesca Fulceri 2 ,
• Franco Nardocci 2 ,
• Corrado Barbui 3 ,
• Giovanni Ostuzzi 3 ,
• Davide Papola 3 , 4 ,
• Laura Maria Fatta 2 ,
• Alice Josephine Fauci 5 ,
• Daniela Coclite 5 ,
• Antonello Napoletano 5 ,
• Franco De Crescenzo 6 , 7 ,
• Gian Loreto D’Alò 6 , 8 ,
• Laura Amato 6 ,
• Michela Cinquini 9 ,
• Primiano Iannone 5 ,
• Holger Jens Schünemann 1 , 10   na1 &
• Maria Luisa Scattoni 2   na1

on behalf of the Italian National Institute of Health guideline working group on Autism Spectrum Disorder

Health and Quality of Life Outcomes volume  18 , Article number:  81 ( 2020 ) Cite this article

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Autism Spectrum Disorder (ASD) is a neuro-developmental disorder that affects communication and behavior with a prevalence of approximately 1% worldwide. Health outcomes of interventions for ASD are largely Participant Reported Outcomes (PROs). Specific guidelines can help support the best care for people with ASD to optimize these health outcomes but they have to adhere to standards for their development to be trustworthy.

The goal of this article is to describe the new methodological standards of the Italian National Institute of Health and novel aspects of this guideline development process. This article will serve as a reference standard for future guideline development in the Italian setting.

We applied the new standards of the Italian National Institute of Health to the two guidelines on diagnosis and management of children/adolescents and adults with ASD, with a focus on the scoping, panel composition, management of conflict of interest, generation and prioritization of research questions, early stakeholders’ involvement, and PROs. Recommendations are based on the Grading of Recommendations Assessment, Development and Evaluation (GRADE) Evidence-to-Decision frameworks.

Following a public application process, the ISS established two multidisciplinary panels including people with ASD and/or their caregivers. Seventy-nine research questions were identified as potentially relevant for the guideline on children and adolescents with ASD and 31 for the one on adults with ASD. Questions deemed to have the highest priority were selected for inclusion in the guidelines. Other stakeholders valued their early involvement in the process which will largely focus on PROs. The panels then successfully piloted the development of recommendations using the methodological standards and process set by the ISS with a focus on PROs.

Conclusions

In this article, we describe the development of practice guidelines that focus on PROs for the diagnosis and management of ASD based on novel methods for question prioritization and stakeholder involvement. The recommendations allow for the adoption or adaptation to international settings.

Introduction

Clinical Practice Guidelines (CPGs) are statements containing recommendations for clinical practice or public health policy. A recommendation describes, for the intended end-user of the guideline, what he or she can or should do in specific situations to achieve the best health outcomes possible, individually or collectively [ 1 ]. Besides their primary objective to improve health outcomes through the promotion of evidence-based care and clinical pathways, CPGs also serve as a resource for patients, caregivers, policy-makers, researchers and regulatory bodies.

Clinical practice guidelines in Italy

Following novel national regulations on responsibilities of healthcare professionals [ 2 ], the Italian National Institute of Health (Istituto Superiore di Sanità, ISS) through the recently instituted Centre for Clinical Excellence, Quality and Safety of Care (Centro Nazionale per l’Eccellenza Clinica, la Qualità e la Sicurezza delle Cure, CNEC), is responsible for the governance of the Italian guidelines production process [ 3 ]. In this framework, the new Italian National Guidelines System (Sistema Nazionale Linee Guida, SNLG) was established as the pivotal instrument to promote an efficient production mechanism of good quality national guidelines, and the methodological standards recommended for the development and evaluation of CPGs were set. Based on international standards such as the Guidelines International Network (GIN) - McMaster guideline development checklist tool, rigorous methods, combined with systematic and transparent processes, are required by the ISS in its recently published methodological manual for CPGs development [ 4 , 5 , 6 ]. These regulations have not been previously applied in Italian national guidelines but are now a requirement in any CPG developed by ISS and, thus, in these two new ISS guidelines for managing ASD.

Autism spectrum disorder and current guidelines on its diagnosis and treatment in context

The essential behavioral features of ASD are persistent impairment in reciprocal social communication and social interaction and restricted, repetitive patterns of behavior, interests, or activities. These core symptoms are present from early childhood and limit or impair everyday functioning [ 7 ], are extremely heterogeneous both in terms of complexity and severity and vary over time. Recent systematic review and large observational research reported a prevalence of ASD in adults ranging from 0.7 to 1.1% [ 8 , 9 ], while a recent study performed by the National Observatory for ASD (coordinated by ISS and the Ministry of Health) revealed that approximately 1.3% of children in the age range 7 to 9 have been diagnosed with ASD in Italy [ 10 ]. People with ASD frequently present co-occurring neurological, psychiatric and medical disorders that must be considered for the organization of the appropriate interventions. Outcomes related to interventions, both from tests and management strategies, are typically reported by people with ASD or caregivers. A considerable number of different approaches to diagnose and manage ASD have been proposed over the last 50 years. This reflects the complexity of this condition, which requires a balance between medical, psychological, social, educational and even ethical and existential needs. Many of these approaches have been object of academic and public debate, often with overt disagreement between researchers, clinicians, people with ASD, family and caregivers, and other stakeholders [ 11 , 12 ].

These factors represent challenges for the development of evidence-based guidelines in this field. In 2011, the ISS published the first Italian Guideline on ASD entitled ‘The treatment of children and adolescents with ASD’ . [ 13 ] The published recommendations have been very controversially debated by professionals, institutions and parents’ associations [ 14 ]. In 2015, a new law demanded an update of these guidelines and the Italian Ministry of Health appointed the ISS to coordinate the development of national guidelines on management of ASD throughout the lifespan. As opposed to the previous version, these new guidelines will also include diagnostic questions and provide, separately, recommendations for the population of children and adolescents with ASD and for adults with ASD. Furthermore, these guidelines will have to adhere to new methods outlined by CNEC within the framework of the new SNLG and comply with its innovations such as a policy for the disclosure and management of Conflict Of Interest (COI), transparent stakeholder involvement and adoption of the GRADE approach [ 15 , 16 ]. Yet, these methods have not been tested in real guideline development in this new legal framework.

Objectives of this article

This article introduces the methods and approach to guideline development at the ISS, laying out its innovative methods using the example of evidence-based guidelines for the diagnosis and management of ASD with a focus on PROs.

The guideline development process was guided by the ISS methodological manual [ 4 ] and derived from the GIN-McMaster Guideline Development Checklist [ 6 ] ( https://cebgrade.mcmaster.ca/guidelinechecklistonline.html ). It was intended to meet recommendations for trustworthy guidelines by the National Academy of Medicine (U.S.), formerly known as the Institute of Medicine, the World Health Organization and the GIN [ 5 , 17 , 18 ].

Scope of the guideline

The Italian national law ‘Provisions on prevention, treatment, and rehabilitation of people with autism spectrum disorders, and assistance to families’ (Law 134, approved by the Italian Government on August 2015) intends to ensure the health, the improvement of living conditions and the inclusion in social and working environments of individuals with ASD. The two guidelines described here will be developed in observance of the law 134. Their scope includes the diagnosis and management of ASD and requires describing the perspective, objectives, target population, and target audience.

Participants in the process

The guideline working group benefits from the contribution of several teams. We describe their roles and responsibilities here.

The ISS Steering Committee (SC) leads and oversees the development of the guideline, it defines the groups involved (chairs, developers, panel, evidence review team) and supports their productive interaction and it is responsible for the development process including budgeting, the definition of a timeline, and the management of COI. The SC, coordinated by a principal investigator and supported by scientific and technical secretariat, selected two chairs for each guideline: one content expert and one methodological expert. The chairs are included in the SC together with a quality assurance team that ensures the compliance of the development process with the ISS methods and regulations.

The guideline group or panel is responsible for prioritization of questions for the guideline, participation in group meetings and teleconferences, providing input on evidence and contextual factors, reviewing evidence summaries, making judgments and formulating recommendations in final panel meetings, reviewing and writing of final guideline report and support for dissemination [ 19 ]. Two separate panels have been selected, each focusing on one of the ASD populations of interest: children/adolescents and adults. Considering that the management of ASD, from diagnosis to the delivery of comprehensive care, involves a heterogeneous group of professionals and competencies, the two panels were designed to be multidisciplinary and geographically representative of the entire Italian territory. Through a public process [ 20 ], we invited representatives of fields relevant to the guideline’s scope with at least five years of experience and working for the Italian national healthcare system (either in the local health units or in the university/research hospitals) to voluntarily participate in the guidelines. The invitation included representativeness of people with ASD and/or their caregivers. Based on the analysis of their curriculum vitae, cover letter and years of personal or professional experience in the ASD field, sixteen panel members have been selected. All panel members have been invited to sign a declaration of commitment and confidentiality and fill in the COI form. The guideline methodologists or developers, trained in the GRADE approach and the use of the GRADEpro Guideline Development Tool (GRADEpro, https://gradepro.org ), work closely with the guideline panel in prioritizing the relevant questions and outcomes, prepare background documents for the guideline panel and stakeholders, coordinate teleconferences and online voting processes, review comments.

The Evidence Review Team (ERT) searches the literature and produces syntheses of the evidence. Following the GRADE approach, the ERT rates the certainty in the evidence, prepares the GRADE evidence tables and Evidence-to-Decision (EtD) frameworks that the panels use in formulating recommendations.

Management of conflict of interest

The ISS policy on the management of COI follows the GIN principles for disclosure of interests and management of COI in guidelines [ 18 ] and it is described in the ISS manual [ 4 ]. According to this policy, those involved in the guideline development, including panel members, the ERT, guideline developers and external referees, had to declare all financial, non-financial, personal and institutional interests relevant to the scope of the guidelines completing a standardized form. The SC evaluated each individual interest based on its nature and type, specificity with respect to the scope of guideline, financial value, period and duration. If a declared interest was deemed to represent a conflict, the following measures for the management of COI were applied: full participation, with public disclosure of interest; partial exclusion (e.g. exclusion from the works related to the declared interest and from the relevant decision-making process); total exclusion. We applied the policy throughout the entire process, including during panel members selection, generation and prioritization of research questions, and participation in the formulation of recommendations. We regularly monitored and updated declarations of COI.

Opening meeting and training of the guideline panel

The working group met for the first time in a two-day meeting held at the ISS headquarter. The following activities took place: the SC outlined the scope of the guideline; guideline developers presented the existing guidelines on ASD; the working group discussed the resources and time available and agreed to produce recommendations on 16 research questions for each of the two ASD identified populations over an 18-month time period. The guideline quality assurance team presented the ISS policy on COI and collected COI disclosure forms from participants. The ERT introduced the GRADE methodology in two presentations. The first presentation served as introduction to the GRADE constructs of certainty in the evidence and strength of recommendations [ 21 , 22 ]. The second focused on GRADE evidence tables, GRADE EtD frameworks and the importance of people’s values and preferences in decision-making processes [ 23 , 24 , 25 , 26 ]. We shared links to training material, including the ISS manual and online resources on the GRADE approach to rating the certainty of evidence and the EtD frameworks to meeting participants. The meeting served for the members of the working group to get to know each other and to commence collaboration.

Selection of guideline questions

We implemented a two-step approach that allowed panels to identify and agree on the questions to be addressed in the guidelines using the module in GRADEpro that allows for the generation and prioritization of questions and health outcomes [ 27 ].

Generation of questions

Guideline developers drafted a list of strategies and interventions addressed in existing CPGs on the diagnosis and management of ASD [ 28 , 29 , 30 , 31 ]. We discussed the list during the opening meeting and invited panel members to identify items missing or deemed not applicable to the Italian context. Based on the output of the meeting, subgroups including guideline developers and members of the panel with specific expertise (content experts) generated a list of candidate questions framed using the PICO format (population, intervention, comparator, and outcomes) [ 32 ]. To streamline the initial list, questions were organized by category (e.g. questions pertaining to the diagnosis, pharmacological, or psychosocial interventions) and, where appropriate, grouped together. The grouping was applied when interventions were assumed to share similar functioning or having similar effects on health outcomes (e.g. medications belonging to the same drug class) and for similar diagnostic instruments. We presented the list of candidate questions to the groups during two-hour recorded web-based conferences.

Prioritisation of questions

Once the list of candidate questions was finalized, we asked panels to rate the priority of questions on a 1 to 9 scale. We used surveys electronically generated in GRADEpro (Fig.  1 ) and applied the following criteria: rating of 7 to 9, high priority question - should be addressed in the guideline; rating of 4 to 6, priority question but not of high priority - should be listed as priority in the guideline; rating of 1 to 3, not a priority question - it is acceptable to neither include nor mention it in the guideline.

Rating question importance using GRADEpro. GRADEpro interface. Panel members rate the importance of candidate guideline questions on a 1 to 9 scale. Lower ratings are indicative of lower importance

We invited panel members to consider a brief list of factors that typically influence whether a question is relevant in the context of a CPG (Table  1 ).

We also provided supplementary materials including a glossary of the acronyms used to formulate the questions and articles related to the underpinning theoretical frameworks considered to organize the questions into categories. Following the rating exercise, we presented the results (means, median, minimum and maximum) to the groups in separate two-hour teleconferences using the mean rating score as a ranking criterion. We invited the groups to critically appraise the list and to evaluate its harmony. In particular, we asked to verify if any of the top-rated questions for inclusion could not be considered as exhaustively informative to the reader if not paired with another question that was not rated for inclusion. To achieve harmony, we also organized questions in sensible units, consisting of the smallest recommendation sets that would be informative or required for readers to avoid gaps and achieve rapid dissemination [ 33 ]. We used the sensible units to streamline the production and dissemination of recommendations and to create working sub-groups for each, also known as the PICO Responsible Unit (PRU), consisting of content experts and members of the ERT [ 34 ].

Generation of outcomes

To determine the people-important outcomes to be addressed in the syntheses of the evidence, we first engaged the PRUs in drafting descriptions of potentially relevant desirable and undesirable outcomes. We created written definitions of outcomes, known also as health outcome descriptors , to reduce the risk of introducing error that could result when panel members have different understanding of the same outcomes. We then sent GRADEpro surveys asking to add, for each question separately, potentially relevant people-important outcomes that were not yet included in the list drafted by the PRUs (Fig.  2 ).

Generation of outcomes using GRADEpro. GRADEpro interface. Panel members suggest, separately for each question, any people-important outcomes that should be considered during the rating of the relative importance of outcomes

Prioritisation of outcomes

We elicited ratings of the relative importance of outcomes on a 1 to 9 scale (Fig.  3 ) in the corresponding GRADEpro module. We asked the panels to rate outcomes separately for each question using the following criteria: a rating of 7 to 9, the outcome is critical for decision-making; 4 to 6, the outcome is important but not critical for decision-making; 1 to 3, the outcome is of low importance for decision-making [ 35 ].

Rating relative importance of outcomes using GRADEpro. GRADEpro interface. Panel members rate the importance of people-important outcomes on a 1 to 9 scale. Lower ratings are indicative of lower importance

Similar to the question prioritization step, we provided guidance materials on the task and its underpinning concepts, available in additional file  1 . We discussed the results of the rating exercise (means, minimum and maximum) in a face-to-face meeting using the mean rating score as the ranking criterion and considered only outcomes rated as critical or important for inclusion in systematic reviews and decision-making during formulation of recommendations. Once the list of outcomes was prioritized, we reached consensus on the final list of questions as described above.

Stakeholders’ involvement

Public involvement in the development of ISS CPGs is guaranteed through the participation of lay members in the panel as well as also through a public consultation on two key outputs of the process: draft list of guideline questions and draft recommendations. As for the former, we made the list of prioritized questions available for comments by stakeholders who met eligibility criteria. [ 36 ] The stakeholders were organized in six categories: scientific societies and health professions associations; family associations and advocacy organizations; national and regional public institutions (e.g. public universities); private institutions (e.g. foundations, private health facilities, private universities); industry (e.g. pharmaceutical companies); public and private research institutes.

Guideline panel members reviewed the comments that were collected electronically using a structured questionnaire ( https://piattaformasnlg.iss.it ) over a four-week period. Example of questions used in the questionnaire are available in Additional file  2 . This early involvement aims at increasing transparency and stakeholder engagement. Similarly, we will invite stakeholders to review and provide comments on the draft recommendations once they will become available. Our dissemination also includes a website ( www.osservatorionazionaleautismo.it ) where recommendations and the underlying evidence will be available for different user profiles, similar to those of the European Commission Breast Guidelines [ 34 ].

Piloting of the development of recommendations

With the goal to allow the working group to gain experience with the process of making a recommendation and to familiarize with the dynamics typical of guideline panels, we identified two pilot research questions. The ERT conducted systematic reviews and shared the following materials in advance of panel discussion: GRADE Evidence Profiles and a Summary of Findings tables [ 25 , 26 ] summarizing the effects of the interventions, an EtD framework with structured summaries of the evidence to address each criterion, the list of included and excluded studies, and forest plots where applicable. We piloted the decision-making process using both the in-person and the online approach. In the former, panels met in a meeting room equipped with a u-shaped table, microphones and a recording system. A projector was used by the ERT to present the synthesis of the evidence on a large screen and by the chairs to facilitate discussion and navigate through the various criteria of the EtD. Simultaneously, we also streamed the meeting online using Webex (Cisco Webex, https://www.webex.com/ ), to allow off-site participation and visualization of content on the screen of panel members’ devices while discussion it. To pilot the online approach, we used the PanelVoice module of GRADEpro ( https://gradepro.org/panel-voice/ ). Through electronic surveys that are integrated in the EtDs, PanelVoice enables guideline developers to facilitate the decision-making process electronically. The process starts with the collection of panel judgments on the EtD criteria (Fig.  4 ).

Collection of EtD judgments using PanelVoice. PanelVoice/GRADEpro interface. Judgments on the EtD criteria submitted by panel members are visible to guideline developers and can be used to facilitate the decision-making process online

Results of the PanelVoice are reported and agreement reached through email interaction or other necessary. The panel is then asked to decide and agree on the direction and strength of the recommendation and to formulate the statements to be reported in the EtD conclusions section (e.g. justification, implementation considerations, research priorities etc.) (Fig.  5 ).

Collection of votes on the strength and direction of recommendations using the GRADEpro/PanelVoice interface. Voting results for the direction and strength of the recommendation are visible to guideline developers and can be used to reach online agreement about the final recommendation

Composition of the guideline panels

Between June and July 2018, the steering committee received 158 applications for the two multidisciplinary and multi-professional panels of independent experts. Twenty-six applicants were not eligible because employed in private healthcare facilities or universities, had undocumented declared professional competences, their professional profile was not requested in the public selection announcement, or they applied after the submission deadline. Among the 138 who met the requirements, the SC selected 16 applicants per panel on the basis of their professional and personal experience, expertise, healthcare setting (primary, secondary and tertiary care), and geographical representation. Table  2 shows the compositions of the two panels.

Management of Conflict of interest

The SC reviewed the detailed declarations of interest of all the 158 candidate panelists. None of them was prevented from participating in the panel because of relevant COI, since all the interests declared were considered as manageable through measures such as partial exclusion or public disclosure. Afterwards, the SC evaluated the panelists’ declared and non-declared interests, the latter identified through surveillance of research projects or training activities in which experts are engaged. The SC did not identify any relevant COI that would have prevented guideline panelists from participating in the generation and selection of the research questions addressed.

Guideline questions

We abstracted interventions and management strategies from previous guidelines into 7 macro-areas to create an initial list: diagnosis and assessment of ASD core-symptoms, diagnosis and assessment of ASD associated features, comorbidities, differential diagnosis, pharmacological interventions, psychosocial interventions, other non-pharmacological interventions. Strategies within the same macro-area were categorized and grouped together by the PRU where applicable. Categorization was based on the target population (e.g. people with ASD versus their caregivers) and on the theory underpinning the interventions. Due to the availability of multiple theoretical frameworks related to non-pharmacological interventions for ASD, the latter categorization presented challenges that we solved through discussion. As for the population of children and adolescents with ASD, the process resulted in a list of 79 questions of which 27 were high-priority, 46 questions important, and 6 questions not important. As for adults, we generated a list of 31 questions of which 21 were high-priority and 10 questions important. For each population, we will develop recommendations to answer 16 research questions whereas all other questions will be mentioned as not prioritized in the guideline. Tables  3 and 4 lists the questions prioritized for inclusion in the guidelines. The lists of all generated questions and their priority ratings are available in Additional file  3 .

The panel responsible for children and adolescents with ASD rated ASD core-symptoms as critical outcomes for all research questions. Impairments in social interaction and communication, and restricted and repetitive behaviors were considered as distinct core-symptoms of ASD and rated separately. Other critical and important outcomes included quality of life, adaptive functioning skills, and parenting stress. The panel responsible for adults with ASD prioritized outcomes related to quality of life and outcomes such as social inclusion, level of independency from the caregivers, overall functioning and professional competencies. Other important outcomes included core-symptoms, behavioral disturbances, psychotic symptoms and treatments’ side effects. All outcomes were PROs.

Stakeholders’ consultation on the research questions

Of the 129 stakeholders that requested to comment on the list of questions identified for inclusion in the guideline, 115 met the eligibility criteria. We excluded stakeholders for the following reasons: the application process was not completed or the relationship with healthcare industries was not declared. Figure  6 shows the distribution of registered stakeholders.

Distribution of registered stakeholders. Pie chart reporting affiliations of the stakeholders participating in the public consultation

The majority of comments pertained to potentially relevant subgroups and outcomes that were not considered in the prioritized guideline questions. Many stakeholders requested clarification regarding the meaning of “standard of care” which was used to phrase some of the questions. Based on the feedback received, we reviewed the comments and improved the wording of research questions and added new sub-groups, where necessary.

The questions identified for piloting the process focused on the impact of polyunsaturated fatty acids on PROs in children and adolescents with ASD. The body of evidence consisted of Randomized Controlled Trials (RCTs) and the overall certainty in the estimated effects was rated as very low owing to serious indirectness and very serious imprecision. Based on the very low certainty in the evidence of effects and uncertainty in other judgments on EtD criteria, the panel made conditional recommendations. Further details on the pilot questions, including the EtD framework with panel judgments, are available in Additional file  4 .

We have described the methods and processes for guideline development at the ISS using the diagnosis and management of people with ASD as an example. It is the first guideline that follows the new ISS standards and has posed a number of methodological challenges that we addressed using novel guideline development approaches [ 4 ]. A challenge particularly relevant to ASD is its focus on PROs in people living in the ASD spectrum and their caregivers.

Challenges encountered during the development process

The heterogenous composition of the panels, which includes health professionals and stakeholders across a broad spectrum, reflects the complexity of the condition being addressed. The management of such large guideline groups, which encompass different professionals and potentially heterogeneous viewpoints, requires particular ability by chairpersons to conduct effective meetings. Given the broad interest in this guideline by many and diverse stakeholder groups, the process requires maximum possible transparency and we tackled this challenge through the use of GRADE EtDs, the early involvement of key stakeholders and press releases. Applying the ISS COI policy revealed the need for a cultural change. In fact, experts are often not aware that having published on the topic of interest or carried out research or professional activities in the field constitute an interest to be declared. This is important not only for disclosure purposes but also for allowing an assessment of potential conflicts and for determining measures to manage them. We provided guidance to experts in this process to enable them to recognize and declare any circumstance in which a secondary interest could interfere with the impartial performance of their duties, functions and tasks.

Strengths and innovations of this guideline development process

We created a large multidisciplinary panel which include people with ASD and their caregivers and operate under a transparent policy on COI. Our process for prioritization, using a structured and transparent approach, granted equal voices to panel members and focused on PROs. Our process is supported by independent systematic reviews by the ERT which include an assessment of the certainty in the evidence according to the GRADE approach. We used health outcome descriptors to minimize the bias and improve the overall transparency of the process. Using the GRADE EtD framework, criteria and judgments that yield recommendations are transparent and allow targeting to different user profiles [ 34 ]. Through training and piloting exercises, we allowed the panel acquired familiarity with the GRADE approach, the use of the EtD framework, and the summaries of evidence provided to make informed judgments and reach recommendations.

We used information technology to streamline the development process and improve efficiency. Indeed, web-based decision-making and communication tools such as of GRADEpro, StarLeaf, and Webex facilitated work logistics and decreased costs associated with in-person meetings while increasing panel members’ involvement. We promoted stakeholders’ involvement from early stages of the process. The ISS SNLG web platform ensured a transparent and participative process in which stakeholders are empowered to provide valuable feedback in several phases of the process.

Limitations of this guideline development process

Guideline development requires advanced methodological skills and understanding of evidence. Although panel members are not formally required to know the details of methodology, they must get acquainted with the relevant principles in order to understand the process flow; an ability which demands appropriate training. Human and time resources to develop the syntheses of the evidence that are used to inform the guideline are a very relevant component of the development process but these resources are small compared to the cost of treatment and primary research in this area.

We have described the new Italian national guideline development process during its first application in recommendations about the diagnosis and management of ASD. The process seems feasible and acceptable to key stakeholders, including guideline panel members, those synthesizing the evidence and the public. The guideline working group is now developing recommendations that will be disseminated and adopted in Italy. This guideline aims to serve as a reference standard for future guideline development in the Italian setting, and it will allow the adoption or adaptation to various settings, including international jurisdictions.

Availability of data and materials

Data sharing is not applicable to this article as no datasets were generated or analyzed during the current study.

Abbreviations

Autism Spectrum Disorder

Participant Reported Outcomes

Grading of Recommendations Assessment, Development and Evaluation

Clinical Practice Guidelines

Istituto Superiore di Sanità (Italian National Institute of Health)

Centro Nazionale per l’Eccellenza Clinica, la Qualità e la Sicurezza delle Cure (Centre for Clinical Excellence, Quality and Safety of Care)

Sistema Nazionale Linee Guida (Italian National Guidelines System)

Conflict of Interest

Guidelines International Network

GRADEpro Guideline Development Tool

Evidence Review Team

Evidence-to-Decision

population, intervention, comparator, outcomes

PICO Responsible Unit

Randomized Controlled Trial

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Acknowledgements

Collaborating authors of the Italian National Institute of Health guideline working group on Autism Spectrum Disorder: Members of the panel on children and adolescents with ASD: Maurizio Arduino, Cristina Bellosio, Sandra Biasci, Serafino Buono, Corrado Cappa, Concetta Cordò, Emanuela Di Tommaso, Clelia Maria Duff, Claudia Felici, Angelo Massagli, Massimo Molteni, Franco Nardocci, Laura Reali, Holger J. Schünemann, Raffaella Tancredi, Giovanni Valeri, Lorella Venturini, Alessandro Zuddas. Members of the panel on adults with ASD: Mauro Andreoli, Corrado Barbui, Consuelo Bergamin, Marco Bertelli, Danilo Catania, Roberto Cavagnola, Pietro Cirrincione, Serafino Corti, Marusca Crognale, Raffaella Faggioli, Anna Maria Giogoli, Serenella Grittani, Roberto Keller, Pasqualina Pace, Pierluigi Politi, Holger J. Schünemann, Fabrizio Starace, Marco Valenti. Members of the Evidence Review Team: Laura Amato, Sara Balduzzi, Michele Basile, Michela Cinquini, Fabio Cruciani, Gian Loreto D’Alò, Roberto D’Amico, Marina Davoli, Franco De Crescenzo, Marien Gonzalez Lorenzo, Silvia Minozzi, Zuzana Mitrova, Ivan Moschetti, Vanna Pistotti, Rosella Saulle, Simona Vecchi.

The authors would like to thank Wojtek Wiercioch (McMaster University, Canada) for his critical review of this manuscript, and Giulia Galati (Italian National Institute of Health) for her administrative assistance.

Italian Ministry of Health Project ‘I disturbi dello spettro autistico: attività previste dal decreto ministeriale del 30.12.2016 – capitolo 4395 ( articolo 1, comma 401, legge 28 dicembre 2015, n. 208, recante “Disposizioni per la formazione del bilancio annuale e pluriennale dello Stato (legge di stabilità 2016 )”.

Author information

Holger Jens Schünemann and Maria Luisa Scattoni contributed equally to this work.

Authors and Affiliations

Michael G DeGroote Cochrane Canada Centre and McMaster GRADE Centres, Department of Health Research Methods, Evidence and Impact (formerly Clinical Epidemiology and Biostatistics), McMaster University, 1280 Main Street West, Hamilton, Canada

Gian Paolo Morgano & Holger Jens Schünemann

Research Coordination and Support Service, Istituto Superiore di Sanità, Viale Regina Elena 299, 00161, Rome, Italy

Francesca Fulceri, Franco Nardocci, Laura Maria Fatta & Maria Luisa Scattoni

WHO Collaborating Centre for Research and Training in Mental Health and Service Evaluation, Department of Neuroscience, Biomedicine and Movement Sciences, Section of Psychiatry, University of Verona, Verona, Italy

Corrado Barbui, Giovanni Ostuzzi & Davide Papola

Department of Clinical, Neuro and Developmental Psychology; Faculty of Behavioural and Movement Sciences, Vrije Universiteit, Amsterdam, The Netherlands

Davide Papola

Centro Eccellenza Clinica, Qualità e Sicurezza delle Cure, Istituto Superiore di Sanità, Viale Regina Elena 299, 00161, Rome, Italy

Alice Josephine Fauci, Daniela Coclite, Antonello Napoletano & Primiano Iannone

Department of Epidemiology, Lazio Regional Health Service, Via Cristoforo Colombo, 112, 00154, Rome, Italy

Franco De Crescenzo, Gian Loreto D’Alò & Laura Amato

Department of Psychiatry, University of Oxford, Oxford, UK

Franco De Crescenzo

School of Hygiene and Preventive Medicine, University of Rome Tor Vergata, Rome, Italy

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Mario Negri Institute for Pharmacological Research IRCCS, Via Giuseppe La Masa 19, 20156, Milan, Italy

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Department of Medicine, McMaster University, Hamilton, Canada

Holger Jens Schünemann

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GPM and HJS outlined the manuscript content. GPM drafted the initial manuscript. HJS and MLS helped developing subsequent drafts, contributing equally to its production. FN, CB, AF and FF critically reviewed it and provided important input. LA, FDC, GLD produced the synthesys of the evidence that were used to pilot the process of making a recommendation. DP, GO, LF, PI, DC, AN, and MC reviewed the manuscript and provided important intellectual contributions leading to the finalization of the manuscript. The members of the guideline working group contributed to various parts of the work that allowed the development of the guideline. All authors read and approved the final manuscript.

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Correspondence to Holger Jens Schünemann or Maria Luisa Scattoni .

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Members of the GDG do not receive financial compensation for their work on the panel but receive payment or reimbursement by the ISS for travel related expenses for the guideline meetings. GPM, MC, and LA are members and HJS is co-chair of the GRADE working group.

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Interpretation of ratings for research questions and outcomes.

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Example of questions included in the questionnaire for stakeholders.

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Ratings of research questions for the ISS ASD guidelines.

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EtD for the research question used to pilot the process in-person.

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Morgano, G.P., Fulceri, F., Nardocci, F. et al. Introduction and methods of the evidence-based guidelines for the diagnosis and management of autism spectrum disorder by the Italian National Institute of Health. Health Qual Life Outcomes 18 , 81 (2020). https://doi.org/10.1186/s12955-020-01320-4

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Diagnosing and managing autism spectrum disorder

Psychologists can play an important role diagnosing autism spectrum disorder and helping people cope with and manage the associated challenges.

• Autism Spectrum Disorder
• Testing, Assessment, and Measurement

Autism spectrum disorder (ASD) is a complex neurodevelopmental disorder that affects behavior, communication, and social functioning.

Psychologists can play an important role diagnosing ASD and helping people cope with and manage the challenges associated with the disorder.

Understanding autism

As the term “spectrum” suggests, ASD symptoms exist along a continuum. Some people with the disorder are able to succeed in traditional schools, hold jobs, and perform functions of daily living with varying levels of support. Others have significant intellectual impairments and will need extensive support and assistance throughout their lives.

While ASD is a diverse disorder, the condition is commonly characterized by certain repetitive behaviors and difficulties with social interaction and communication.

Some common signs and symptoms include:

• Failure to engage in typical babbling or pointing in infancy
• Failure to make eye contact beginning in infancy
• Failure to respond to one’s own name
• Loss of previously acquired language or social skills, usually during the second year of life
• Unusual responses to sensory input
• Unusual movements such as rocking, twirling, or flapping arms
• Difficulty playing with or interacting with peers
• Difficulty talking about feelings
• Difficulty understanding tone of voice, body language, and gestures
• Obsessive interest in a particular topic
• Difficulty breaking from routine

[ Related: Helping people with autism reach their true potential ]

Diagnosing ASD

Although ASD can be diagnosed as early as 15 to 18 months of age, the average age of diagnosis is about 4.5 years, and some people are not diagnosed until adulthood. That’s unfortunate, as prompt diagnosis is important for early intervention. Research has shown that intensive early intervention can make a big difference in the outcomes for people with ASD. If you suspect your child shows signs of the disorder, don’t put off testing.

ASD is a neurodevelopmental disorder, and it is thought to have a strong genetic component. However, medical tests such as blood tests or brain scans cannot currently be used to diagnose ASD. Instead, health care providers diagnose the condition based on the patient’s history and behaviors.

Various experts can make this diagnosis, including some psychologists, pediatricians, and neurologists. Psychologists (including neuropsychologists, who specialize in the relationship between the brain and human cognitive, behavioral, and emotional functioning) are often involved in the diagnostic process. It is important that the expert making the diagnosis has extensive experience working with the wide range of symptoms associated with ASD.

To make a diagnosis of ASD, psychologists draw on a number of sources of information:

• Patient interviews
• Observations of the patient’s behavior
• Tests of cognitive and language abilities
• Medical tests to rule out other conditions
• Interviews with parents, teachers, or other adults who can answer questions about the patient’s social, emotional, and behavioral development

Treatment and support

Given the complex nature of the disease, children with ASD benefit from interdisciplinary treatment teams made up of experts from various fields. Those teams typically include physicians, educators, speech therapists, and occupational therapists, in addition to psychologists.

Several interventions have been developed to treat children with ASD. Some of the more common approaches include:

• Applied behavior analysis (ABA). ABA is a method that uses evidence-based teaching techniques to increase helpful behaviors and reduce behaviors that are harmful or interfere with learning. ABA therapy has been shown to improve communication, social, and vocational skills.
• Developmental individual-difference relationship-based model (DIR) . In the DIR model, also known as floor time therapy, parents and therapists follow the child’s lead in playing together while also directing the child to engage in increasingly complex interactions.
• TEACCH Autism Program. The TEACCH framework promotes engagement in activities, flexibility, independence, and self-efficacy through strategies based on the learning strengths and difficulties of people with ASD.

It’s important to have your child evaluated by a provider trained in diagnosing and treating autism, so that they can recommend the most appropriate interventions. Such interventions can be administered by psychologists, as well as by educators and board-certified behavior analysts.

Psychologists also play an important role in helping children of all ages as well as adults with ASD manage specific challenges associated with the disorder.

[ Related: How to navigate adulthood on the autism spectrum ]

Seeing a psychologist about ASD

When psychologists diagnose ASD or meet with a patient with ASD for the first time, they typically perform a comprehensive evaluation. That evaluation acts as a roadmap that identifies the patient’s strengths and areas of need to help guide treatment.

Each person with ASD is different and has a range of strengths and challenges. Psychologists can make recommendations based on an individual’s cognitive, behavioral, emotional, and academic needs. Those treatment plans can help ABA therapists, educators, and others capitalize on the individual’s strengths and accommodate any challenges.

ASD is a condition that lasts a lifetime. As patients grow, psychologists create new treatment plans to help patients and their families succeed at key transition points such as starting school, entering adolescence, or moving into adulthood.

Psychologists can also help with specific challenges that arise for people with ASD and their families. Such services include:

• Treatments to help people with ASD manage anxiety or mood disorders such as depression. This often includes modified cognitive behavioral therapy, a method that helps individuals change negative thoughts and behaviors.
• Treatments to help manage sleeping and feeding problems that often coincide with ASD.
• Social skills groups to help people with ASD improve conversational skills, nonverbal communication, and play.
• Individual psychotherapy to help adults with autism improve marital and other family relationships and improve life skills necessary for employment.
• For people with more severe cognitive impairments, interventions to decrease aggression and self-injury and improve compliance.

The goal of psychotherapy may not be to cure ASD, but to help people with ASD function at their best and cope with challenges.

APA gratefully acknowledges Latha Soorya, PhD, Laura Arnstein Carpenter, PhD, and Nabil Hassan El-Ghoroury, PhD, for contributing to this article.

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Home » Autism Diagnosis » How Important is Early Intervention in Autism Spectrum Disorder?

How Important is Early Intervention in Autism Spectrum Disorder?

By   Donnesa McPherson, AAS

June 18, 2024

Your child has been showing signs of autism , yet there’s a part of you that thinks it’s too early to intervene. You’ve read about various management strategies, but how important is early intervention in autism?

Early intervention services for autistic children have been shown to have a lasting impact on their development. Although there can be a time of growth and regression , it is important to note that this occurs in all children of differing and typical development.

When parents and caregivers start noticing changes in behavior and questioning whether their child is exhibiting developmental delays, it would be recommended that they talk to the child’s doctor. This article will explore the importance of early intervention and what you can do to help your little one.

If you’d like to learn more about different therapies and solutions for autism management, you can download your free guide here:

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Autism Therapies and Solutions

What is the Importance of Early Intervention in Autism? 

The American Academy of Pediatrics recommends early intervention and detection for the best outcomes in their article. They also stated that during the controlled trial that the article is based on, early intervention in autism can help support and possibly improve both cognitive and flexible or adaptive thinking and behavior.

Children with autism can be diagnosed as early as two years old. If they receive early intervention services, they are at a significant advantage for longer-term effects from their therapy and services.

An early intervention program may include :

• parent and caregiver education and training
• speech therapy
• services for hearing difficulties and impairments
• physical and occupational therapy
• health and nutrition therapy and services

The earlier an autistic child can receive services, the better outcomes they may have. Young children have higher brain plasticity, which means that their brain is better able to absorb and change with the treatments. 

As a result,  they have a higher likelihood of effectiveness for longer and have a greater chance of reaching their goals and potential at an earlier age, according to the U.S. Department of Health and Human Services National Institute of Health .

What are the Benefits of Early Intervention? 

Since young children with autism can have developmental delays, the younger they start receiving effective therapies, the more positive outcomes and progress they may experience like:

• higher cognitive skills and abilities
• improvement with social interactions, development, and emotional skills
• better expression and understanding of communication with others
• improved fine, gross motor, and other physical abilities

According to the Centers for Disease Control and Prevention (CDC) , early intervention services can help children with autism as young as three years old, some even younger, depending on their diagnosis. These services revolve around therapies to help with speech, movement, and social and emotional skill-building.

Parents need to talk to their child’s doctor as soon as they are concerned with their child’s development, the possibility of autism, or other developmental disorders. The Individuals with Disabilities Education Act (IDEA) allows younger children with autism to receive services and support sooner through early intervention services and other state or territory support.

Children who have not received an official diagnosis can receive treatment and services sooner, such as:

• occupational therapy
• physical therapy
• educational interventions (Individualized Education Plan (IEP), or 504 plan)

This is not an exhaustive list; parents and caregivers can start conversations with their child’s doctor or other practitioner. Early interventions greatly help the overall outcome for children, even without the formal autism spectrum disorder diagnosis.

In the United States, parents don’t need to have their child diagnosed through a doctor. They can contact their local school district. Even if the child is not school age, the parent just needs to ask to talk to someone who can help with their child’s diagnosis. This is called a “Child Find” evaluation.

How Can Parents Spot Autism Early On? 

Parents are generally the first to notice when something may seem different with their child. If a parent or caregiver starts noticing that their child may be experiencing developmental delays, doesn’t maintain eye contact like other children their age, or has different behaviors like hand flapping , turning in circles, or other behaviors that concern them, they can start by talking to their child’s doctor.

The child’s doctor should have information and be able to start with an assessment. If not, they should be able to refer the child to a specialist that can help. Parents can also contact their local school system and request an evaluation.

The earlier children with autism are diagnosed, the sooner they can receive early interventions and services.

Early intervention in Autism Spectrum Disorder (ASD) is paramount, as it can significantly improve the quality of life for individuals with ASD and their families. The evidence overwhelmingly supports the notion that starting intervention services as early as possible can lead to better communication, social skills , behavior, and overall development outcomes.

Q: Why is early intervention critical in Autism Spectrum Disorder (ASD)?

A: Early intervention is crucial in autism because it takes advantage of the brain’s high plasticity during early development, providing the best opportunity to improve core deficits in communication, social interaction, and behavior.

Q: What common signs might warrant early intervention for autism?

A: Early signs that may indicate a need for intervention include delayed speech and language development, difficulty with social interactions, repetitive behaviors, and sensory sensitivities. However, it’s important to remember that ASD is a spectrum, and the signs vary widely.

Q: At what age should early intervention for ASD begin?

A: Early intervention can start as early as a few months of age if developmental concerns are present. However, intervention can be beneficial at any age, so it’s never too late to seek support for a child with autism.

Q: What therapies or interventions are typically included in early intervention for ASD?

A: Early intervention programs often involve speech therapy, occupational therapy, applied behavior analysis ( ABA ), and developmental therapies. The specific therapies chosen depend on the child’s needs and can vary widely.

Q: How can families access early intervention services for a child with ASD?

A: Families can access early intervention services by contacting their local early intervention program, which can be found through their state or regional government resources. Pediatricians and child development specialists can also provide referrals and guidance on accessing appropriate services.

Early Intervention for Autism https://www.nichd.nih.gov/health/topics/autism/conditioninfo/treatments/early-intervention#:~:text=Early%20intervention%20programs,Nutrition%20services

Mechanisms of learning and plasticity in childhood and adolescence https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7013153/

Efficacy of very early interventions on neurodevelopmental outcomes for infants and toddlers at increased likelihood of or diagnosed with autism: A systematic review and meta-analysis https://pubmed.ncbi.nlm.nih.gov/37036800/

American Academy of Pediatrics. (2010). Randomized, Controlled Trial of an Intervention for Toddlers With Autism: The Early Start Denver Model. https://publications.aap.org/pediatrics/article-abstract/125/1/e17/29731/Randomized-Controlled-Trial-of-an-Intervention-for?autologincheck=redirected

Center for Disease Control and Prevention. (2022). Accessing Services for Autism Spectrum Disorder.

U.S. Department of Health and Human Services National Institute of Health. (2021). Early Intervention for Autism. https://www.nichd.nih.gov/health/topics/autism/conditioninfo/treatments/early-intervention

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Clinical impact of early diagnosis of autism on the prognosis and parent–child relationships

Jennifer harrison elder.

1 Department of Family and Community Health Nursing Science

Consuelo Maun Kreider

2 Department of Occupational Therapy, University of Florida, Gainesville, FL

Susan N Brasher

3 Nell Hodgson Woodruff School of Nursing, Emory University, Atlanta, GA

Margaret Ansell

4 Health Science Center Libraries, University of Florida, Gainesville, FL, USA

Autism spectrum disorder (ASD) refers to a lifelong condition that usually appears in late infancy or early childhood, and is characterized by social and communication deficits that impede optimal functioning. Despite widespread research and greater public awareness, ASD has an unclear etiology and no known cure, making it difficult to acquire accurate and timely diagnoses. In addition, once an ASD diagnosis is made, parents find it challenging to navigate the healthcare system and determine which interventions are most effective and appropriate for their child. A growing body of evidence supports the value of early diagnosis and treatment with evidence-based interventions, which can significantly improve the quality of life of individuals with ASD as well as of their carers and families. Particularly noteworthy are early interventions that occur in natural surroundings and can be modified to address age-related goals throughout the lifespan. Therefore, the purpose of this review is to: 1) provide readers with a brief background related to ASD; 2) describe commonly used screening instruments and tools for early diagnosis; 3) describe early interventions that have empirical support; and 4) discuss how the parent–child and family relationships can be affected through this process. This information can provide professionals with information they can use to assist families who make critical and potentially life-changing decisions for children with ASD.

Video abstract

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Introduction

Autism spectrum disorder (ASD) refers to a group of neurodevelopmental conditions characterized by a wide range of symptoms, skills, and levels of disability. First described in the 1940s by Leo Kanner, 1 autism was once considered to be a rare condition. Despite the consensus that ASD diagnoses occur more frequently today, researchers continue to debate whether this is a result of new cases or simply the availability of better diagnostic measures, or even a combination of both. Regardless, one cannot dismiss the fact that the Centers for Disease Control and Prevention (CDC) notes that ASD is a prevalent condition, with 1 in 68 children identified with some form of ASD. 2 Symptoms appear in the first 2 years of life and affect the individual’s ability to function socially, at school, at work, or in other areas of life. Although current treatments vary, most interventions focus on managing behavior and improving social and communication skills to enable optimal social functioning and independence. 3 – 8

When determining the presence of ASD, clinician appraisal of ASD symptoms remains the current standard for diagnosis. Diagnostic criteria were revised in 2013 with the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), which delineates two core ASD symptoms: persistent social and communication deficits and the presence of restricted, repetitive patterns of behaviors and/or interests, and sensory differences. 9 Additionally, ASD severity, which categorizes the impact of symptoms on the individual’s adaptive functioning, is now considered in the diagnostic process. 9 Advances in ASD science challenge traditional conceptualizations of ASD as a discrete phenotype 10 and, instead, posit that ASD exists along a continuum of neurodiversity. 11 Indeed, multiple studies have applied quantitative measurements to ASD symptoms and traits and demonstrated the continuous distribution of ASD traits across human populations. 12 – 14 As a result, some researchers now support the use of standardized, percentile-based descriptions of ASD symptom manifestation. 15 , 16 These percentile-based methods have been used successfully in the characterization of other quantifiable clinical conditions, such as anorexia nervosa and hypertension. 16 At present, expert clinical judgment is required to evaluate the presence of significant impairment in the core symptom areas, thus determining the presence (or absence) of ASD.

Some individuals with ASD are mildly impaired by their symptoms, whereas others are profoundly impaired. 9 , 17 Although the heterogeneity in ASD is well-accepted, the range of ASD symptoms can be classified into broad categories of core symptoms and secondary symptoms. Secondary symptoms can include conditions such as intellectual impairment, which occurs in approximately 50% of patients with ASD, 18 self-injury, aggressiveness toward others, sleeping disorders, eating disturbances, and seizures. Additionally, for individuals with ASD, symptom manifestation can change throughout the lifespan. For instance, language difficulties and hyperactivity that is often seen in younger children can shift to relational problems, mood dysregulation, and hypoactivity in adolescence and young adulthood. 19 – 21 In summary, characterizing ASD can be challenging, but progress has been made in refining diagnostic processes that can be addressed over the lifespan.

Search methodology

In recognition of how rapidly the field of ASD has changed, a state-of-the-art science review was conducted, as described by Grant and Booth, 22 whereby the purpose is to provide broad and up-to-date information related to the early diagnosis and treatment of ASD. This included a PubMed search for literature related to three major concepts: parent–child relationships, autism, and diagnosis. The search for the parent–child relationships concept was conducted using the exploded major MeSH term “Parent-Child Relations” or any one of these phrases in the title or abstract: “parent-child relationship”, “mother-child relationship”, or “father-child relationship”. Similarly, we searched for the autism concept using the MeSH terms “Autistic Disorder” or “Autism Spectrum Disorder”, or the presence of the truncated word autis* in the title. Finally, the concept of diagnosis was searched for very broadly with the term “diagnosis” in the title, abstract, or MeSH terms. In order to ensure a thorough review of the literature, a secondary search was also run; in this search, 1) the criteria for the parent–child relationships concept was broadened to include non-major MeSH terms, and 2) emphasis was placed on early diagnosis and interventions, which led to searches for the terms “early” and “diagnosis” in the title, abstract, or MeSH terms of the records.

The search was conducted on March 16, 2017, with a narrower scope for early diagnosis and then a broader scope for parent–child relationship. This yielded an initial result set of 53 records, which was narrowed down to 31 after a review of the title/abstract. The second search, which included broader search terms related to diagnosis, but narrower terms related to the parent–child relationship, retrieved 98 records, 60 of which were included after a review of the title/abstract. No filters were used in either search strategy. Inclusion criteria used to conduct the title/abstract review were: 1) English-language observational or interventional studies, 2) examining children with ASD, 3) including data/information about time/age of diagnosis, and 4) including data/information about the quality of the parent–child relationship. Studies that focused on the well-being of parents of children with ASD or examined parent–child relationships as the cause of specific ASD characteristics were excluded. The following discussion and concluding recommendations are based on results of this search.

The ASD screening and diagnostic instruments described in Table 1 were selected from an extensive search of ASD screening literature. The most recent search for screening/diagnostic instruments for ASDs was performed on May 15, 2017. The authors searched PubMed for literature related to the concepts of autism, diagnosis, and survey instruments. The autism concept was searched for using the MeSH terms “Autistic Disorder” or “Autism Spectrum Disorder”, or the presence of the truncated word autis* in the title. The concept of diagnosis was searched for very broadly using the MeSH term “Diagnosis”, the term “screening”, or the truncated word diagnos* in the title, abstract, or MeSH terms of the records. The survey instruments concept was searched using the exploded MeSH term “Surveys and Questionnaires” or the truncated word instrument* or the word tool in the title or abstract.

Examples of commonly used ASD screening and diagnostic instruments

Abbreviation: ASD, autism spectrum disorder.

No date restrictions were used. The search was intentionally broad, with a high number of irrelevant results, in order to capture as many unique screening instruments as possible: the initial result set included 970 records; 125 records remained after title/abstract review. As this was an instrument search, the inclusion criterion was simply the presence of a unique instrument used for diagnosis/screening of ASDs. Preference was given to studies that included a complete description or full text of the instrument, such as validation studies. Furthermore, literature reviews related to autism screening were included for full-text review. From these results, the authors created a list of ASD screening and diagnostic instruments, which were then assessed for their relevance and quality. The final list of screening instruments includes high-quality, validated instruments that are commonly used today.

Impact of early diagnosis on ASD prognosis

The importance of receiving an early diagnosis of ASD and subsequent early intervention is well-established in the literature. 3 , 23 , 24 However, in surveying 1,420 parents of children with ASD, Oswald et al found that, despite early parental concerns, children in the ASD group were diagnosed later than children in the developmentally delayed group. 25 Late diagnosis is associated with increased parental stress and delays early intervention, which is critical to positive outcomes over time. 26 , 27 This is particularly important because studies have found that interventions implemented before age 4 (eg, 12–48 months) are associated with significant gains in cognition, language, and adaptive behavior. 28 , 29 Similarly, researchers have linked the implementation of early interventions in ASD with improvements in daily living skills and social behavior. 30 Collectively, this evidence suggests that early diagnosis and intervention are imperative in the long-term trajectories and quality of life for children with ASD.

Barriers to early diagnosis

Although some parents report a suspicion of ASD in the first 12 months, 31 , 32 many are told by healthcare providers to “not worry about” common features, such as slow language development or isolative behavior, that can be misinterpreted as shyness. 5 However, clinicians are able to recognize the subtler signs of ASD (eg, language deficits, impaired social relatedness, gaze aversion) and know that a reliable diagnosis can be made by age 2. 33 , 34 In fact, ASD can be detected before age 2 using standard screening methods for ASD, such as the Modified Checklist for Autism in Toddlers (MCHAT), 35 and later confirmed using gold standard diagnostic methods, such as the Autism Diagnostic Interview – Revised and Autism Diagnostic Observational Schedule-2. 17 , 32 Despite the availability of reliable methods for early diagnosis, the average age at which a child receives a diagnosis of ASD is currently between 4 and 5 years. 27 Thus, there is a great need to minimize the time between when children can receive a diagnosis of ASD and when they are actually diagnosed. Indeed, reducing this gap is vital to improving long-term outcomes related to cognition, language, adaptive behavior, daily living skills, and social behavior.

Empirically validated screening and assessment

To facilitate early diagnosis, it is important to raise provider awareness of the current best practice recommendations, which calls for all children to be screened using ASD-sensitive and -specific tools. 36 Table 1 includes screening and diagnostic tools that are well-known in the ASD field and have established sensitivity and specificity; conversely, the table excludes tools that are primarily for treatment planning (eg, the Social Responsive Scale, 37 Vineland Adaptive Behavior, 38 Differential Ability Scale, 39 Mullen Scales of Early Learning 40 ).

In summary, early identification of ASD is critical to ensuring that children with ASD are able to access evidence-based interventions that mitigate their levels of disability. 4 , 27 , 28 , 50 Furthermore, providers must be aware of, and trained to use, tools that can accurately detect and diagnose ASD. Additional information regarding ASD instruments can be found in other reviews published from 2014 to 2016. 36 , 51 – 53 It is important for providers to have a strong understanding of ASD in order to appropriately diagnose and link families to appropriate services. 54 , 55

Parental role in ASD interventions and shifts with development

Although interventions for preschool age children are common, researchers in the field of ASD need to develop interventions that target the unique needs of infants and children younger than 24 months of age. 56 Currently, interventions for children under 2 years teach parents specific procedures and strategies to use during daily routines to enrich the child’s experiences and interactions. 56 Similarly, interventions for infants under 12 months of age focus on parent skills and responsiveness 6 , 57 , 58 in order to enhance the young child’s first relationships (ie, interactions) with others. Emerging evidence shows that very early interventions may exert a strong positive effect on the developmental trajectories of infants at high-risk of ASD, 59 as well as provide benefit for the parents. 56 An expert panel convened by the American Academy of Pediatrics recommends that clinicians refer infants or children at risk for ASD as early as possible so that they can benefit from early interventions. 60 Children at risk for ASD may have a family history of ASD (eg, sibling with ASD), experience unusual medical events (eg, seizures, gastrointestinal [GI] concerns, sleep problems), and/or exhibit behavioral risk factors that inspire the concern of parents or physicians. 61 Recommendation for early intervention to occur even before a definitive diagnosis of ASD is made speaks to the urgency of the need for further development of interventions for infants and children with ASD.

Building social and communication abilities

For children who receive early childhood ASD services, intervention focuses heavily on building and fostering social–relational and communication abilities. An additional cornerstone of childhood ASD interventions includes developmental or habilitative therapies. 60 , 61 These therapies not only aim to minimize any existing delays in communication and social–relational abilities, but also work to enhance developmental skill progression across the broad developmental domains of communication, adaptive functioning (eg, toileting), gross-and fine-motor skills, and cognitive–perceptual abilities ( Table 2 ). After developmental delays are minimized, efforts can be shifted to focus on optimizing developmental trajectories. Therapies begun early can also focus heavily on shaping development of desired daily routines, such as learning how to engage with the family at mealtime. For children with difficult behaviors, undesired behaviors are often easier to physically redirect in younger, smaller children. Thus, current best practice recommendations call for combined developmental and behavioral early intervention approaches for young children with suspected and confirmed ASD. 60 , 61

Skills and behaviors targeted in early intervention and childhood ASD therapies

Abbreviations: ASD, autism spectrum disorder; LEAP, Learning Experiences and Alternative Program for Preschoolers and their Parents.

Interventional setting

Whether the intervention offered is comprehensive (ie, addresses multiple developmental areas and/or multiple core ASD features), or has a specific focus (eg, relational, communication, behavioral), one common setting is the naturalistic setting, which is the child’s day-to-day environment such as the home, daycare, or preschool. 62 Interventions within naturalistic settings provide the child with ASD multiple contexts and opportunities for learning and practicing targeted skills, behaviors, and routines. 62 Naturalistic settings, moreover, enable the interventionist to harness parental skills while optimizing parent–child interactions within the context of the child’s daily routines. 62 For example, consider the scenario of a young child who is identified at risk of developing ASD with excessive irritability and hyper-reactivity to sounds or busy environments. For this child, the interventionist could work with the parents to identify overstimulating situations or routines within the child’s natural environments and then teach the parent ways to prevent overstimulation and facilitate the child’s recovery from irritating stimuli. Similarly, clinicians can train parents at home to ameliorate symptoms and promote the child’s communication skills, social development, sensory processing abilities, and/or behavioral control within the child’s everyday life situations. 63 , 64 Indeed, current practice recommendations regarding interventions for children younger than 3 years include active parental, caregiver, and family involvement to achieve optimal functioning of the affected child. 60 , 61

Addressing comorbidities

Regardless of the child’s age, ASD interventions should address related difficulties 60 and challenges brought about or exacerbated by existing comorbid conditions, such as emotional dysregulation, GI disturbances, 65 attention-deficit hyperactivity disorder, 66 learning disability, 67 anxiety and depression, 68 , 69 sleep disturbances, 65 sensory sensitivities, 21 and motor difficulties. 70 Moreover, interventions may need to address the child’s challenging behaviors that can be aggravated by the presence of inflexible behaviors and/or thinking. The impacts of co-occurring conditions and behavioral difficulties may increase the stress of both the child and families, especially as the child grows older and is expected to engage with others within the classroom and community (eg, sports leagues, clubs).

Tailoring interventions over the life course

Because ASD is a neurobiological disorder, symptoms persist and change throughout the life span. In order to effectively address these changes, the focus of interventions shifts over time. For example, interventions for young children focus on developmental skill enhancement, whereas interventions for adolescents focus on the attainment of, and engagement in, functional activities such as regularly cleaning their living space and living independently. With progression into young adulthood, the focus of interventions again shifts toward engagement in young adult social roles and attainment of independence, such as participating in post-secondary educational or work settings. 71 As a result, roles of parents and families in facilitating and engaging within the interventions also change over time. For example, when the child is very young, parents play a central role in implementing recommended therapeutic strategies. However, as the child matures through adolescence and adulthood, parents shift to facilitating the youths’ and young adults’ strategic use of supportive environments, routines, and services. Clinical providers can better help families anticipate and prepare for these shifts when they adopt a life-course perspective for treatment of ASD.

Effects of ASD on the parent–child relationship and implications of early diagnosis

Sources of stress.

Reports indicate that parents and family members without adequate support and direction can experience extreme stress, especially around the tumultuous time of diagnosis. 5 Research has shown that families of children with ASD report more stress than families of children with other disabilities, 80 perhaps because hallmarks of ASD – unpredictable behavior, disinterest in affection, and aloofness – present unique challenges to parents. Parents may feel ill-equipped to deal with these challenges, and may not know where to turn for support. In addition, treatment costs are high, and many parents may drop out of the workforce to care full-time for their child with ASD, leading to a significant financial burden on families. To date, there have been few evidence-based options for parents and families to alleviate the stress related to having a child with ASD.

Value of the parent–professional relationship

However, there is some evidence that a good parent–professional relationship can help mitigate this stress. 81 For example, in a qualitative study of 10 Chinese families, Ho et al 82 found that the quality of the parent–professional partnership determined how well families reacted to a diagnosis of ASD. Similar findings about the importance of the parent–professional relationship were noted in an earlier Scottish study, 83 where 126 participants responded to a “questionnaire package”, as well as in an exploratory Dutch study of 77 parents who completed a Reaction to Diagnosis Interview. 84 Collectively, these findings suggest that, while acquiring and accepting an ASD diagnosis can be difficult for families, a key to successfully navigating through this time is a positive parent–professional relationship.

Navigators and acquiring social support

Another way that parents may relieve stress related to caring for a child with ASD is to find a “navigator” who can assist them from the time of diagnosis until they secure appropriate services for their child. This concept was a dominant theme in the authors’ recently conducted focus groups with families of individuals with ASD. 5 Indeed, one mother reported experiencing significant stress because she expended a considerable amount of time and money on treatments that had no positive effect on her child with ASD. She stated that an informed navigator along with centralized, dependable resources would have helped her through this stressful phase and toward the use of evidence-based interventions with her child.

The literature provides evidence that social support is vital to helping families relieve stress associated with caregiving for a child with ASD. Indeed, Ingersoll and Hambrick 85 note that acquiring informal social support is especially important at the time of diagnosis. Brobst et al report that both fathers and mothers of children with ASD are affected by stress, especially if the child exhibits severe behaviors (eg, tantrums, aggression), and that this stress can negatively affect the marital relationship. 86 To counteract this stress, Twoy et al 87 recommend “external family coping strategies”, including community, social, and spiritual support, as well as the informal support and respite care provided by friends and family. In 2007, Mandell and Salzer 88 found that two-thirds of a group of 1,005 caregivers of children with ASD had participated in support groups and, in 2013, Clifford and Minnes 89 reported similar results in their study of 149 parents of children with ASD. In both of these studies, there was evidence that parents who currently attended support groups had more adaptive coping strategies than non-attenders. Currently, online support groups are gaining popularity, perhaps because they are more practical than in-person meetings for families with demanding schedules.

Addressing differences in stress reactions

Intervening early with children at risk for ASD and tailoring interventions to parents and families are critical ways to protect child and family wellbeing. Intervening professionals may find it helpful to examine how parents react to receiving and accepting an ASD diagnosis. Although there appear to be some patterns in how families react to a diagnosis, there are some individual variations. For example, some parents express relief at finally receiving a conclusive diagnosis after prolonged periods of uncertainty. 81 In other cases, parents experience the well-documented grieving process: denial, anger, depression, and acceptance. 55 , 90 Eventually, parents must accept that, although their child appears similar to other children in many respects, he/she has limitations that may require revised expectations and future plans. For example, a parent may have envisioned his/her child as a famous orator but realizes that goals may need to be adapted due to the ASD features. Parents may also express anger and ask, “Why us? Why our child?”, and this anger may be intensified if professionals have been inattentive to their concerns. Although parental anger may be challenging for service providers to handle, these professionals should recognize that anger is part of the grieving process and try to empathize with parents to ensure healthy coping and adaptation. 26

Clinicians should note, however, that once parents have accepted a diagnosis, it is common for them to set out frantically in search of “a cure”. 5 During this phase, parents and families are particularly vulnerable and can fall prey to false claims of “cures” from a variety of sources, many of which are on the Internet. Service providers must recognize this potential danger, and direct families to credible information sources while correcting inaccurate information and “myths” of a cure. 26 , 80

Helping families adapt

Familial perceptions of the ASD diagnosis play an important role in how they ultimately adapt as a family unit. For example, Cappe et al 91 found that perceiving experiences as a loss or threat significantly predicts poor adaptation, whereas Ekas et al 54 assert that optimism and the maintenance of hope improve adaptation. While some families are naturally more optimistic than others, such an outlook can be cultivated by supportive professionals.

Studies have also shown that successful families are creative, flexible, and willing to try new things. 92 For example, in the first author’s experience, one family developed a creative means of promoting appropriate eye contact by rewarding the young girl when she could recall the color of visitors’ eyes after they had been in the home. Research also shows that knowledgeable professionals can improve adaptation to diagnosis, which can lead to stronger family units and feelings of hope for the future. 26

Limitations

The field of ASD research is rapidly changing with the addition of many new diagnostic and screening instruments and interventions. This review describes commonly used instruments that are, to date, frequently cited in the literature. We sought to illustrate a broad range of ASD symptoms and experiences that are reflective of the heterogeneity in both ASD symptomatology and co-occurring conditions. We highlighted a limited range of skills and behaviors that are targeted in ASD early intervention and, thus, narrowed our focus on a sample of behavioral, educational/developmental, and psychosocial ASD approaches. However, it is important to note that ASD interventions can also include pharmacological, medical, dietary, and technological options, which were not included in this review. Furthermore, it is noteworthy that, within the range of ASD interventions and approaches in our review, several can be used to address multiple symptoms and/or targeted behaviors and skills. For example, behavioral interventions are not restricted to the treatment of problem behaviors; they can also be used to target communication and/or adaptive functioning. There are other instruments and interventions being developed with much potential for improving outcomes for individuals with ASD and their families.

This article highlights the importance of early diagnosis and intervention as well as family support for individuals with ASD. While major advances have been made in the field, it is clear that more provider education is needed, together with timely, empathetic, and ongoing support to families of children with ASD. As previously mentioned, ASD is a lifelong condition and families must learn to shift their focus on therapies as their child grows into adulthood. Effective communication between providers and families is the key to building supportive relationships that can positively affect not only the individual with ASD but also the family over a lifetime.

Acknowledgments

The authors thank Debra McDonald, MA, UF College of Nursing, for her editorial assistance. This work was supported in part by the National Institutes of Health – National Center for Medical and Rehabilitation Research (NICHD) and National Institute for Neurological Disorders & Stroke (grant no. K12 HD055929). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Author contributions

All authors contributed toward data analysis, drafting and critically revising the paper and agree to be accountable for all aspects of the work.

The authors report no conflicts of interest in this work.

A Critical Review of Social Narratives

• REVIEW ARTICLE
• Published: 16 July 2019
• Volume 32 , pages 241–256, ( 2020 )

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• Justin B. Leaf 1 , 2 ,
• Julia L. Ferguson 1 ,
• Joseph H. Cihon 1 , 2 ,
• Christine M. Milne 1 , 2 ,
• Ronald Leaf 1 &
• John McEachin 1  

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Social narratives, or story-based interventions, are defined as stories that describe social situations, appropriate social behaviors to display, and when to display the specified behaviors. Social narratives are a commonly implemented and empirically evaluated procedure used to improve social behavior and decrease the probability of aberrant behavior for individuals diagnosed with autism spectrum disorder. Although social narratives are a commonly implemented and evaluated procedure, recommendations about their use and effectiveness is conflicting. This paper reviews six interventions that fit the definition of social narratives (i.e., Social Stories™/social stories, social scripts, cartooning, comic strip conversations, power cards, and social autopsies). Fifteen articles were analyzed across multiple methodological dimensions to determine the level of evidence (i.e., convincing, partial, or not convincing). Results of the analysis indicated that the majority of social narrative studies did not demonstrate convincing evidence. Recommendations for clinicians and future research are discussed based on the results of the literature review.

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Leaf, J.B., Ferguson, J.L., Cihon, J.H. et al. A Critical Review of Social Narratives. J Dev Phys Disabil 32 , 241–256 (2020). https://doi.org/10.1007/s10882-019-09692-2

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