Early Identification

 In The Politics of Autism, I discuss evaluation, diagnosis, and early intervention.

Shaw KA, Bilder DA, McArthur D, et al. Early Identification of Autism Spectrum Disorder Among Children Aged 4 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2020. MMWR Surveill Summ 2023;72(No. SS-1):1–15. DOI: http://dx.doi.org/10.15585/mmwr.ss7201a1.

The Abstract:

Description of System: The Autism and Developmental Disabilities Monitoring Network is an active surveillance program that estimates prevalence and characteristics of ASD and monitors timing of ASD identification among children aged 4 and 8 years. In 2020, a total of 11 sites (located in Arizona, Arkansas, California, Georgia, Maryland, Minnesota, Missouri, New Jersey, Tennessee, Utah, and Wisconsin) conducted surveillance of ASD among children aged 4 and 8 years and suspected ASD among children aged 4 years. Surveillance included children who lived in the surveillance area at any time during 2020. Children were classified as having ASD if they ever received 1) an ASD diagnostic statement in an evaluation, 2) a special education classification of autism (eligibility), or 3) an ASD International Classification of Diseases (ICD) code (revisions 9 or 10). Children aged 4 years were classified as having suspected ASD if they did not meet the case definition for ASD but had a documented qualified professional’s statement indicating a suspicion of ASD. This report focuses on children aged 4 years in 2020 compared with children aged 8 years in 2020.

Results: For 2020, ASD prevalence among children aged 4 years varied across sites, from 12.7 per 1,000 children in Utah to 46.4 in California. The overall prevalence was 21.5 and was higher among boys than girls at every site. Compared with non-Hispanic White children, ASD prevalence was 1.8 times as high among Hispanic, 1.6 times as high among non-Hispanic Black, 1.4 times as high among Asian or Pacific Islander, and 1.2 times as high among multiracial children. Among the 58.3% of children aged 4 years with ASD and information on intellectual ability, 48.5% had an IQ score of ≤70 on their most recent IQ test or an examiner’s statement of intellectual disability. Among children with a documented developmental evaluation, 78.0% were evaluated by age 36 months. Children aged 4 years had a higher cumulative incidence of ASD diagnosis or eligibility by age 48 months compared with children aged 8 years at all sites; risk ratios ranged from 1.3 in New Jersey and Utah to 2.0 in Tennessee. In the 6 months before the March 2020 COVID-19 pandemic declaration by the World Health Organization, there were 1,593 more evaluations and 1.89 more ASD identifications per 1,000 children aged 4 years than children aged 8 years received 4 years earlier. After the COVID-19 pandemic declaration, this pattern reversed: in the 6 months after pandemic onset, there were 217 fewer evaluations and 0.26 fewer identifications per 1,000 children aged 4 years than children aged 8 years received 4 years earlier. Patterns of evaluation and identification varied among sites, but there was not recovery to pre-COVID-19 pandemic levels by the end of 2020 at most sites or overall. For 2020, prevalence of suspected ASD ranged from 0.5 (California) to 10.4 (Arkansas) per 1,000 children aged 4 years, with an increase from 2018 at five sites (Arizona, Arkansas, Maryland, New Jersey, and Utah). Demographic and cognitive characteristics of children aged 4 years with suspected ASD were similar to children aged 4 years with ASD.

Interpretation: A wide range of prevalence of ASD by age 4 years was observed, suggesting differences in early ASD identification practices among communities. At all sites, cumulative incidence of ASD by age 48 months among children aged 4 years was higher compared with children aged 8 years in 2020, indicating improvements in early identification of ASD. Higher numbers of evaluations and rates of identification were evident among children aged 4 years until the COVID-19 pandemic onset in 2020. Sustained lower levels of ASD evaluations and identification seen at a majority of sites after the pandemic onset could indicate disruptions in typical practices in evaluations and identification for health service providers and schools through the end of 2020. Sites with more recovery could indicate successful strategies to mitigate service interruption, such as pivoting to telehealth approaches for evaluation.

Public Health Action: From 2016 through February of 2020, ASD evaluation and identification among the cohort of children aged 4 years was outpacing ASD evaluation and identification 4 years earlier (from 2012 until March 2016) among the cohort of children aged 8 years in 2020 . From 2016 to March 2020, ASD evaluation and identification among the cohort of children aged 4 years was outpacing that among children aged 8 years in 2020 from 2012 until March 2016. The disruptions in evaluation that coincided with the start of the COVID-19 pandemic and the increase in prevalence of suspected ASD in 2020 could have led to delays in ASD identification and interventions. Communities could evaluate the impact of these disruptions as children in affected cohorts age and consider strategies to mitigate service disruptions caused by future public health emergencies.

"Evidence-Based"

Uncertainty is a major theme of The Politics of Autism.  In the concluding section, I write:

A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit? How much better off are they as a result of government action? While there are studies of the short-term impact of various therapies, there is surprisingly little research about the long term, which is really what autistic people and their families care about. As we saw in chapter 4, few studies have focused on the educational attainment of autistic youths. For instance, we do not know much about what happens to them in high school, apart from the kinds of classes that they take. One study searched the autism literature from 1950 through 2011 and found just 13 rigorous peer reviewed studies evaluating psychosocial interventions for autistic adults. The effects of were largely positive, though the main finding of the review is that there is a need for further development and evaluation of treatments for adults.

 Giacomo Vivanti has a commentary at Autism Research titled, "What does it mean for an autism intervention to be evidence-based?"

Abstract:

Although there is consensus in the field that individuals on the autism spectrum should receive interventions that are evidence-based, the concept of “evidence-based” is multifaceted and subject to ongoing development and debate. In this commentary, we review historical developments, methodological approaches, as well as areas of controversies and research directions in the establishment of an evidence base for autism intervention.

From the commentary:

A relevant dimension of what is tested in a trial is the distinction between efficacy trials and effectiveness trials. Efficacy studies are designed to determine whether an intervention produces beneficial effects under optimal circumstances, that is, well-controlled settings in which a variety of potential confounds are controlled for. For example, in an efficacy trial the intervention might be delivered by highly trained clinicians, with frequent fidelity checks and corrective feedback/re-training in case of low adherence to intervention protocols, often supported by University-based research grants. Additionally, participants might be selected to be homogenous across multiple dimensions, such as age, IQ, absence of specific comorbidities, availability to receive intervention at home or in a clinic for multiple hours per week, and the intervention might be delivered in research settings on top of the usual care that is normally available through community services. By maximizing homogeneity in standards of intervention delivery, participant features, and intervention features (e.g., duration, intensity), efficacy trials allow for causal inference on the internal validity of an intervention (i.e., they address the question “can the intervention work under ideal circumstances?”). The inherent limitation of efficacy trials is that participants, resources, settings, and interventionists might not resemble those in real-world settings, limiting generalizability of the results.

To address this issue, efficacious interventions should then be subject to tests of effectiveness, which measure the degree to which the beneficial effects documented in efficacy trials are obtained when the same intervention is delivered by non-University-based practitioners within normative “usual care” contexts, for example, community clinical or educational settings, and across the populations that those settings have the mandate to serve, for example, individuals who have multiple diagnoses in addition to autism. In these contexts, it is often unfeasible to assign participants to intervention conditions at random without interfering with regulatory constraints, mandates, and performance standards by which agencies are held accountable. Therefore, especially for interventions previously shown to be efficacious in tightly controlled RCT, effectiveness trials might use a quasi-experimental design (Handley et al., 2018), whereby participants are not randomly assigned to different conditions (e.g., a study comparing outcomes of two preschool programs, using children who have previously enrolled in those programs as participants; Boyd et al., 2014; Vivanti, Prior, et al., 2014; Vivanti, Paynter, et al., 2014). Although the lack of randomization in this type of studies increases the risk of bias (for example, one setting might be only accessible to more resourceful families, introducing a systematic bias), the combination of efficacy and effectiveness trials has the potential to accomplish both indication of internal validity and impact of the intervention in real world settings. Importantly, despite the previously mentioned challenges, there is a small but growing literature of effectiveness studies that use RCT designs (e.g., Kaale et al., 2012; Vivanti et al., 2019).

Zoom Could Hasten Autism Evaluations

In The Politics of Autism, I discuss evaluation and diagnosis.

Sarah D. Sparks at Education Week:

Months of lockdowns have left a massive backlog of children who show the warning signs of autism, waiting for a formal evaluation to get help.

That’s why Megan Roberts hopes to move autism evaluations out of doctors’ offices and onto Zoom conferences, using staff who already work regularly with schools and early learning centers. In the process, she also hopes to clear the entire waiting list of 1,224 children in need of an autism evaluations in Illinois.

Roberts’s project is one of seven projects that have been awarded a share of $14 million grants from the National Center for Special Education Research. All of the funded projects are focused on supporting students with disabilities who have been disproportionately affected by the pandemic.

Roberts, an associate professor for the communication sciences and disorders early-intervention research group at Northwestern University, and her team received a four-year, $3 million grant to develop and validate a telehealth-based protocol to train speech-language pathologists to evaluate students’ risk of autism spectrum disorders. Using speech-language pathologists dramatically widens the pool of evaluators, as most school districts and Early Head Start centers have them, while a 2019 study found 84 percent of U.S. counties have no access to autism medical diagnosticians.

...

About 85 percent of the time, parents of those diagnosed with autism spectrum disorders start to voice concerns about their child’s development well before age 3, according to the National Center on Birth Defects and Developmental Disabilities. But even before the pandemic, the center found only 42 percent received a developmental evaluation to diagnose the disorder by age 3, and 30 percent of children had not yet been formally diagnosed by age 8.

Evaluating ABA

Uncertainty is a major theme of The Politics of Autism.  In the concluding section, I write:

A key question in autism policy evaluation is simple to pose, hard to answer: How do autistic people benefit? How much better off are they as a result of government action? While there are studies of the short-term impact of various therapies, there is surprisingly little research about the long term, which is really what autistic people and their families care about. As we saw in chapter 4, few studies have focused on the educational attainment of autistic youths. For instance, we do not know much about what happens to them in high school, apart from the kinds of classes that they take. One study searched the autism literature from 1950 through 2011 and found just 13 rigorous peer reviewed studies evaluating psychosocial interventions for autistic adults. The effects of were largely positive, though the main finding of the review is that there is a need for further development and evaluation of treatments for adults.

Mojgan Gitimoghaddam, Natalia Chichkine, Laura McArthur, Sarabjit S. Sangha & Vivien Symington have an article at Perspectives on Behavior Science titled "Applied Behavior Analysis in Children and Youth with Autism Spectrum Disorders: A Scoping Review."  The abstract:

This manuscript provides a comprehensive overview of the impact of applied behavior analysis (ABA) on children and youth with autism spectrum disorders (ASD). Seven online databases and identified systematic reviews were searched for published, peer-reviewed, English-language studies examining the impact of ABA on health outcomes. Measured outcomes were classified into eight categories: cognitive, language, social/communication, problem behavior, adaptive behavior, emotional, autism symptoms, and quality of life (QoL) outcomes. Improvements were observed across seven of the eight outcome measures. There were no included studies that measured subject QoL. Moreover, of 770 included study records, only 32 (4%) assessed ABA impact, had a comparison to a control or other intervention, and did not rely on mastery of specific skills to mark improvement. Results reinforce the need for large-scale prospective studies that compare ABA with other non-ABA interventions and include measurements of subject QoL to provide policy makers with valuable information on the impacts of ABA and other existing and emerging interventions.

From the article:

Most of the current literature surrounding ABA-based interventions lacks investigations into the QoL of children with ASD and instead focuses on aberrant behaviors (Reichow et al., 2018; Whitehouse et al., 2020). A recent meta-analysis found that, upon analyzing five articles of higher scientific credence, none conducted investigations into the changes with respect to QoL for the children or parents (Reichow et al., 2018). The present scoping review likewise found no occurrences of subject QoL measures in the sample analyzed. Overall changes in QoL for children living with ASD is of the utmost importance, as QoL is “individuals’ perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns” (WHO, 1997, p. 1). The continued lack of research into long-term effectiveness of ABA treatments is an ongoing concern and should be a focus of future research to help measure QoL (Whitehouse et al., 2020) and also to investigate any possible adverse effects (Rodgers et al., 2020). For example, recent literature investigating adults with ASD who participated in ABA treatments when they were young has shown increases in incidences of posttraumatic stress disorder (PTSD); this is an emerging field of research in adults with ASD and should be further investigated through long-term studies (Kupferstein, 2018).

Evidence-Based Practices and Employment

In The Politics of Autism, I discuss the employment of adults with autism and other developmental disabilities. Many posts have discussed programs to provide them with training and experience.

At Current Psychiatry Reports, Mary J. Baker‑Ericzén, Roxanne ElShamy, and Rebecca R. Kammes have an article titled "Current Status of Evidence‑Based Practices to Enhance Employment Outcomes for Transition Age Youth and Adults on the Autism Spectrum."  Abstract:

Purpose of Review This review provides a highlight of existing evidence-based practices and community support systems that exist to enhance employment outcomes for autistic transition-age youth (TAY) and adults. An update is provided on the current status of these programs and the impact they are having on employment outcomes for this population.

Recent Findings Many programs exist that prove to be efficacious in improving employment outcomes. These programs can be categorized as vocational rehabilitation service system level interventions, provider and consumer level interventions targeting skills related to employment, and consumer level interventions delivered within community vocational rehabilitation or education settings. A more recent increase in programs is consistent with multiple research and policy calls for amplifed programming in this area.

Summary Despite these recent increases, there is still a need to further develop efective programming to support employment outcomes as the growing autistic population age into adulthood. Community-based research and practice should continue to be developed and tested.

From the article:

Although a number of EBPs exist and have been highlighted here, there continues to be a need for new program development for AS adults so that curriculums and programming are in place when the growing AS population age into adulthood and are prepared to ofer longer-term or more comprehensive services. This is consistent with multiple policy and research calls for (1) increased evidence-based interventions; (2) the development of treatment manuals to encourage replication of promising vocational support programs; (3) models for professional development to work with autistic adults in VR; and (4) recommendations to apply efcacious interventions with other populations to inform the advancement of employment approaches for autistic individuals [83•, 84, 85]. Additionally, recent government reports identifed supporting professional development for vocational service providers as a policy priority to improve competitive employment [48–87]. According to the 2020 Federal Youth Transition Plan, two main priorities for adult services research are (1) promoting work-based learning and (2) supporting professional development of service providers [88].

However, for an EBP to be disseminated successfully, the program must be feasible, cost-efective, and acceptable to the end-users, such as VR services, high schools, and vocational training centers [89]. Many of the EBPs described in this review had small sample sizes and often were not delivered within vocational service or pre-employment transition service educational settings. Additionally, many of the skills-based interventions limited their populations to AS individuals without a co-occurring intellectual disability and minimal racial/ethnic diversity, impacting the efectiveness of broad use. To this end, it is critical that future interventions be developed and tested in a way that attends to the needs of the population and service system from the onset, such as using CBPR methods, diverse populations, and testing directly in community settings. Few of the highlighted interventions used such methods. It is also important to be mindful of resources. The interventions that demonstrated positive outcomes with large samples all required signifcant resources such as intensive staf training, large amounts of service hours, and services extending beyond typical service system length which many VR systems are not in a position to ofer with budget and policy constraints. Future studies need to engage a more holistic and systemic approach to services research that includes utilizing dissemination and implementation frameworks, hybrid research designs, and an equity focus to ensure feasibility, accessibility, and scaling up for broad community use. In sum, there is a strong call for further research and funding of community-based, community-involved, EBP development and testing particularly to address autistic individual’s employment and life outcomes.

 

California Autism Professional Training and Information Network (CAPTAIN)

In The Politics of Autism, I discuss the implementation of public policy toward autism at the federal, state, and local levels, involving education and social services.  Implementation needs far more study.

At Autism, Jessica Suhrheinrich and colleagues have an article titled "Practice-driven research for statewide scale up: Implementation outcomes of the California Autism Professional Training and Information Network."  The lay abstract:

Supporting use of evidence-based practice in public service programs for autistic individuals is critical. The California Autism Professional Training and Information Network (CAPTAIN) brings together best practices from intervention and implementation research to support scale up of autism services. The current study was designed to evaluate the impact of CAPTAIN on provider-level outcomes including attitude toward, knowledge, fidelity, and use of autism EBPs and overall classroom quality. Overall, results indicated variability across measures, with some significant differences between CAPTAIN-trained and non-CAPTAIN-trained providers. These preliminary findings show promise for the efficacy of the CAPTAIN model to increase dissemination and implementation of EBP at the classroom level.

From the article:

The use of research-based practices is mandated by IDEA and ESSA and has been linked to best outcomes for students with autism, which highlights effective implementation and scale up of EBPs in schools as a critical priority. The growing literature on factors that support the implementation process indicates key drivers which can be considered targets of implementation interventions to improve implementation outcomes. In this study, we explored implementation outcomes at the direct service provider level and evaluated differences between CAPTAIN-trained and non-CAPTAIN-trained providers using one of the first large-scale statewide examinations across multiple levels of the special education service system. Overall outcomes indicate CAPTAIN-trained providers and teachers report more favorable attitudes toward EBP, better implementation outcomes related to data collection, and use with students, higher knowledge of their primary EBP, and better ratings of learning environment. These findings show great promise for CAPTAIN as a model to support statewide scale up if EBP for autism and are discussed in more detail below

 

Special Education and Inequality in NYC

In The Politics of Autism, I write about the experiences of different economic, ethnic and racial groups.   Inequality is a big part of the story. Affluent states and school districts have more resources than poor ones.  Educated professionals are better able to protect their children's interests than poor people who never went to college.

A November 1 release from Advocates for Children of New York:

Today, Kim Sweet, Executive Director of Advocates for Children of New York (AFC), issued the following statement in response to the release of the New York City Department of Education’s special education data report for the 2018-19 school year:

New York City continues to fall short when it comes to educating its students with disabilities. While the percentage of City students fully receiving their recommended special education instruction continued to trend in the right direction in 2018-19, we are nevertheless dismayed that more than 15 percent of students with disabilities—a total 28,960 children, more than the total enrollment of the Yonkers public schools—still did not fully receive the instruction to which they are legally entitled.

...
 The modest decrease in the timeliness of evaluations in 2018-19 is a clear signal that the City must invest in additional school psychologists, as a delay in evaluating a student inevitably means a delay in providing appropriate services if that student is found eligible. For more than one in four students who were evaluated for special education for the first time last year, more than two months passed before an IEP meeting was held to determine what learning support should be put in place, in large part because current staff are burdened by unmanageable caseloads. Two months can feel like a lifetime to a child who is struggling in school, falling behind their peers, and rapidly losing confidence in their own abilities. The special education process can be a lengthy one, even when all timelines are followed; these additional delays in getting students the help they need are simply unacceptable.

Yoav Gonen and Alex Zimmerman at Chalkbeat:

The information gap between evaluations provided by the city compared to those done privately — which typically cost over $5,000 — is not unique to Jorge. Interviews with more than two dozen advocates, parents, and experts revealed a flawed two-tiered evaluation system that leaves many students’ needs unaddressed.

Like many aspects of the city’s public school system, the evaluation process is complicated for parents to navigate — and savvy families who can pay for private evaluations have a big advantage.

School psychologists, who are responsible for conducting special education evaluations, work under heavy caseloads, which can make it challenging to conduct quality evaluations. The assessments themselves are often delayed, leaving students without vital services for months.

Meanwhile, families who can afford neuropsychological evaluations, often not covered by insurance, can get a clearer sense of their child’s disabilities — along with pages of recommendations that spell out what services are needed.

By contrast, the city’s evaluations don’t offer specific diagnoses, like dyslexia or attention deficit disorder.

Outcomes-Based Financing

In The Politics of Autism, I write about special education and the Individuals with Disabilities Education Act.

Christina Samuels at Education Week:

Many school-focused "pay for success" funding models—a term for private investment in public programs with the prospect of financial gains—have to date focused on reducing a school district's special education costs.

For example, investors may pay for preschool programs aimed at children from low-income families, who have a higher likelihood of being identified with disabilities. The fewer children who are identified, the more a district "saves"—and a portion of those unspent funds is returned to investors.

But is holding down special education enrollment the only goal that pay-for-success programs, also called social impact bonds, should aim for?

Rather than envisioning special education solely as a placement to avoid, pay-for-success models offer an opportunity to support special education in other ways, says a brief from the Institute for Child Success, a South Carolina-based research and policy organization.

From Megan Carolan and Bryan Boroughs, "Opportunities for Special Education and Early Intervention in Pay for Success," Institute for Child Success, March 2018:

For example, Learning Experiences and Alternative Program for Preschoolers and Their Parents (LEAP) has been found to have positive impacts for students with autism as well as their peers who do not have autism. This model, which enrolls preschoolers with autism in inclusive classrooms, utilizes several unique adjustments to meet the needs of its students. Typically-developing peers receive training on communicating and interacting with their classrooms who are on the autism spectrum. Teachers receive written materials and in-person training to collect data on children’s generalized behavioral changes, adjusting the intervention based on what is indicated. Families of children who are on the autism spectrum receive training in strategies to teach behaviors.40 The rigorous research conducted on this intervention makes it an intriguing candidate for consideration in a PFS project. When compared to “business as usual” classrooms, LEAP is linked with a reduction in autistic symptoms after two years of the intervention, as well as progress on intellectual and language measures; typically  developing children also benefit in terms of improved social skills and reduced disruptive behaviors, and experience no negative outcomes from the program.41 Maintaining a student’s enrollment in an inclusive classroom may itself be worth considering as an outcome, as it is less expensive than separate classrooms and it is linked to academic and social benefits for students who may otherwise be placed in separate classrooms. Participating families also benefit, as adults show fewer signs of significant stress and depression following the program. While the program has not currently been considered for feasibility as a PFS project, it is one promising example of how outcomes-based financing can be used to expand programs that work for children with disabilities – not just to look at outcomes.

40. U.S. Department of Education, Institute of Education Sciences, What Works Clearinghouse. (2012). WWC review of the report: Randomized, controlled trial of the LEAP model of early intervention for young children with autism spectrum disorders. Retrieved from http://whatworks.ed.gov.
41. Strain, P.S. & Bovey, E.H. II. (2011). Randomized, controlled trial of the LEAP model of early intervention for young children with autism spectrum disorders. Topics in Early Childhood Special Education, 31(3) 133–154. Retrieved from: http://journals.sagepub.com/doi/abs/10.1177/0271121411408740?journalCode=teca

Special Ed in GA

The Atlanta Journal-Constitution reports:

Georgia's Department of Education is pouring millions into a program for the most emotionally disturbed students, but there is little evidence the special attention is helping, according to a state audit.

The state spent $64 million last year on the Georgia Network for Educational and Therapeutic Support, a special education program that serves students age 3-21 who have severe emotional or behavioral problems. Across the state, the program's 24 branches offer instruction in special classrooms at select schools or at off-site locations.

In a new report, state auditors raise concerns about the way the Department of Education is running the program. They say more needs to be done to track how these students – about 5,500 statewide – are progressing academically. And they want more accountability over how taxpayer money is spent on the 40-year-old program.

State education officials say the program is monitored in several ways and point out that federal and state laws as well as testing regulations apply to all special needs students, including those in the program. The branches are also overseen by local agencies, which help set the budgets and staffing.

“The program has made great strides in serving these students academically,” said Debbie Gay, who oversees the program for the Department of Education. “The highest priority is to help these kids reach graduation, to keep them in school and to provide that level of therapeutic support that allows them access to education.”

Among the audit’s findings:

• Students in the program had lower graduation rates and were less likely to go on to post-secondary education compared to the overall population of students with disabilities. Ten percent of high school students served by the program in 2004-05 graduated with a regular diploma by 2009.

• Auditors anticipated test results from this hard-to-teach population would be lower than the general population. They said, however, it is difficult to put scores into context, since the state didn’t collect test data from the program until 2009-2010. Their own research for test scores for 2008-2009 found that students in the program scored lower on state standardized tests in every subject compared to the overall population of students with disabilities.

• Several sites did not have psychologists and social workers, despite being allocated state funds for these positions. Ten program directors earned more than $100,000 a year, though the state provides only $50,336 for that position.