Practical Value

The Politics of Autism explains that autism services can be complicated, creating difficulties for autistic people and their families.  Uncertainty another major theme of the  book.  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.

Kevin D. Arnold at Psychology Today:

When your child is diagnosed with autism, and you begin an applied behavior analysis (ABA) program, a question quickly follows: How do I know this is actually working?

It is a reasonable question—and it turns out the field of applied behavior analysis answered it more than 50 years ago. In 1968, Donald Baer and his colleagues published the paper that defined what ABA is and what it requires. One sentence has stood as the standard ever since:

“If the application of behavioral techniques does not produce large enough effects for practical value, then the application has failed.” (Baer, Wolf, & Risley, 1968)

...

If you take one thing from this post, let it be this: Ask your child’s BCBA to show you data from outside the clinic. Data that reflects how your child is doing in the situations that matter most to your family. If that data exists and shows meaningful progress, your program is working. If it doesn’t exist, you now know what to ask for.

Practical value. It has been the standard since 1968. You have every right to hold your program to it. Your child doesn’t have the time to waste on a program that doesn’t emphasize practical value

References

Baer, D. M., Wolf, M. M., & Risley, T. R. (1968). Some current dimensions of applied behavior analysis. Journal of Applied Behavior Analysis, 1(1), 91–97. https://doi.org/10.1901/jaba.1968.1-91

Cooper, J. O., Heron, T. E., & Heward, W. L. (2020). Applied Behavior Analysis (3rd ed.). Pearson.

Implementation and Autism Intervention Research

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

Lee, J. D., Terol, A. K., Tschida, J. E., Pomales-Ramos, A., McEathron, S., Wallisch, A., & A Boyd, B. (2025). Examining the use of implementation science in autism intervention research: A scoping review. Autism, 0(0). https://doi.org/10.1177/13623613251351344

Lay abstract:

This study looks at ways to improve how autism support programs are used in everyday community settings like schools and clinics. These programs are approaches that research has shown can help autistic individuals develop important skills, such as communication, social interaction, and managing behavior. Many of these are psychosocial programs, which means they focus on emotional, social, and behavioral support rather than medication or medical treatment. However, there is a challenge in implementing these interventions in real-world settings, especially in marginalized communities where services are often lacking or lower in quality. The field of implementation science helps bridge this gap by guiding and encouraging the use of evidence-based practices in community settings, aiming to reduce disparities. To better understand this, we did a scoping review that included 13 studies that used implementation science to support autism interventions. We looked at what types of strategies were used, how success was measured, and how well the programs fit into the communities where they were used. Most of the studies took place in schools and involved teachers, school staff, or caregivers of autistic children—altogether including data from 3488 participants. These studies tested different programs to improve outcomes of autistic individuals, such as social skills, communication, and behavior in schools.

From the article:

While school is a place where most autistic children receive services, these findings indicate the need for more efforts focused on examining various implementation phases across different settings to meet diverse needs of autistic children. Other community-based settings, such as daycare, clinics, therapy centers, recreational programs, vocational programs, and faith-based organizations, also provide services to autistic individuals, and it is therefore important to examine how EBPs may be delivered in such settings. These settings may have different structural and operational dynamics compared to schools, which may affect how EBPs are implemented. For example, community-based mental health clinics serving autistic individuals may have different resource constraints or other competing priorities compared to schools (Brookman-Frazee et al., 2010). Therefore, it is imperative to first carefully examine unique determinants (e.g. barriers, facilitators) that exist in different settings and carefully select implementation strategies that map onto these determinants (Balis & Houghtaling, 2023; Wensing & Grol, 2019). Using this intentional and careful process will allow us to avoid the pitfalls such as relying on a “one-size-fits-all” approach or choosing strategies that have little association with the identified determinants (Squires et al., 2014). Thus, it is important to not only recognize these determinants but also understand how these determinants would influence the appropriateness of implementation strategies within a specific context (Wensing & Grol, 2019). Moreover, the current political uncertainties in the United States have introduced increasing threats to publicly funded services, including special education and disability supports, which may disproportionately affect autistic individuals and their families. In this context, implementation research plays a critical role not only in bridging the research-to-practice gap but also in ensuring that effective, equitable, and sustainable interventions are embedded into systems of care, especially during times of policy uncertainty and resource instability.

 

Poor Oversight in Minnesota

 In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.   Scams plague the world of autism. Some involve shady or abusive providers.

James Walsh at The Minneapolis Star-Tribune:

To care providers, advocates and parents of children with autism, the development of the Early Intensive Developmental and Behavioral Intervention (EIDBI) health care program in Minnesota is so promising and so long-awaited, it’s no wonder its growth has been explosive.

But because of that surge of interest in the program, which serves people younger than 21 with autism spectrum disorder, and the lack of oversight, advocates and providers weren’t completely surprised by the revelations last week that the FBI is investigating alleged fraud at two — and possibly more — EIDBI centers.

“The state was interested in providing access to needed services [and] equity-based access to long-underserved communities,” said Eric Larsson, executive director of clinical services at Lovaas Institute Midwest in Minneapolis. “And, if everyone follows the rules, there’s no problem. Not everyone followed the rules.”

The program is funded by the state and federal government. Since 2017, the state reported nearly $700 million in Medicaid EIDBI reimbursements. That includes nearly $229 million in 2024 payments through Nov. 27. At the same time, the number of EIDBI providers who diagnose and treat people with autism spectrum disorder has increased from 41 in 2018 to 328 last year.

Last week, the FBI raided St. Cloud and Minneapolis autism centers as part of an investigation it said revealed “substantial evidence” of millions of dollars in fraudulent Medicaid claims. No charges have been filed yet.

Employment and Autistic Adults: The Need for Better Data

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.

Marjorie Solomon and colleagues have a commentary at Autism Research titled "The challenges and promises of competitively employing autistic adults in the United States." 

An estimated 5.4 million autistic adults ages 18–65 years lived in the US in 2020 (https://www.cdc.gov/ncbddd/autism/features/adults-living-with-autism-spectrum-disorder.html.) As described above, given that current unemployment rate estimates are based on Department of Education reports of 864,000 children who received services under the autism code (https://nces.ed.gov/fastfacts/display.asp?id=64), 111,400 autistic adults nationwide who received services in the DD system for 2014 (Roux et al., 2017), plus the 1400 persons employed by Neurodiversity@Work companies – a total of 976,800 individuals – most of what we know is based on approximately 18% of US autistic adults of working age. To understand the true and comprehensive autism employment picture, we need to “find” the remaining 82% and better understand their employment status. This may further illuminate us about what does (if they are happily employed) and does not work (if they are sitting at home on their couches), and what might lie between these (e.g., otherwise developing skills and find purpose through internships or volunteer work).

We then need to understand their characteristics with respect to service and support needs, ages/developmental levels, cognitive strengths and challenges, autism symptoms, vocational aptitudes, prior work experience, and work preferences. Research is then needed that illuminates how these factors are associated with successes and challenges in diverse jobs. This holds the potential to help us to better identify, adapt, and carve different jobs to optimize the work success of autistic persons. Industrial Organizational Psychologists might be good research partners in such targeted “precision” vocational planning efforts. Randomized clinical trials and other research that continues to advance what is known about the efficacy of interventions and services favored by autistic individuals and their families, as well as research about interventions and services that help employers and co-workeers to understand and work well with autistic persons.

As outlined above, there have been multiple small trials of employment interventions to help autistic adults, however, they either are administered in clinic or school settings which have highly trained staffs and clear referral streams [e.g., (Oswald et al., 2018; Wehman et al., 2014; Wehman et al., 2017)], exclude individuals with mental health issues, rely on lengthy training without the promise of a job, and/or do not incorporate consumer or other stakeholder perspectives in job design, placement, and follow-on support. Furthermore, there is not a clear pipeline of teen interventions that prepare autistic individuals for adult life including employment. Finally, although there have been promising adjuvants that can be used in employment, they have not been well integrated with existing interventions. In sum, the autism field still lacks a scalable, stakeholder-centered, and empirically-validated supported employment model that can serve the wide range of autistic adults and even pre-adults. To date, there remain very few well-validated interventions and services to train employers and co-workers, although some resources exist (e.g. https://www.ocali.org/project/employee_with_asd).

Hurricane Season in New Orleans

In The Politics of Autism, I discuss the day-to-day challenges facing autistic people and their families.  Those challenges get far more intense during disasters.

Emily Woodruff at NOLA.com:

The special needs registry was started in 2013. Over the next few years, the city went door-to-door in low-income apartments to find vulnerable people. Officials also used Medicare data to pinpoint how many people might need help powering life-sustaining medical devices.

But what started with good intentions has become unmanageable. The list grew from 750 to 4,800 people by the time Ida rolled through, according to Meredith McInturff, the city’s public health emergency coordinator.

“It kind of became this tool that was being promoted by all city leadership as, if you need any sort of assistance during a hurricane, you should get signed up for it,” she said in a presentation to advocates.

But the system didn’t have the organization or workforce to follow through on that.

It set up an “unrealistic expectation,” said McInturff, “that every single person signed up would be evacuated out during a storm.”

Although special needs registries have caught on in disaster-prone states like Florida, Texas and California, they rarely work, said June Kailes, a disability policy researcher.

“Nobody can keep it updated,” said Kailes. “People who need it don’t register anyway. There’s no data that says it works.”

In that sense, the Smart911 system, a communication platform that allows residents to create profiles detailing everything from whether they have a COVID infection to needs like medical equipment and ventilators, is an improvement.

The city can also use the system for other purposes, such as alerting emergency responders that the person calling may be hard of hearing or pregnant. It allows an entire household to sign up, and tech-savvy family members can assist others in the process, said McInturff.

But advocates say the changes are not enough to address the thousands who need extra help in disasters. Smart911 offers an easy way to text or contact registrants, but it requires them to renew every six months. Participants need a smart phone to download the app or have the ability to register on a clunky interface on a computer.

“It almost is no change,” said Claire Tibbetts, the administrative manager of Autism Society of Greater New Orleans. “Instead of trying to fix the problems, they were just gonna eliminate the registry and dial back to only the thing that they were willing to provide in the first place.”

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

 

Implementation Research

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

Brian A. Boyd and colleagues have an article at Autism titled 'It’s time to close the research to practice gap in autism: The need for implementation science."

Over 15 years ago, Lord and colleagues (2005) identified the challenges of evaluating interventions for autism, and Smith and colleagues (2007) subsequently proposed guidelines to generate empirical evidence for behavioral and psychosocial interventions. Since then, intervention research has proliferated (Steinbrenner et al., 2020), but the gap between research and practice remains wide (Dingfelder & Mandell, 2011; Odom et al., 2020). Implementation science has emerged as a field to promote the use and sustainment of evidence-based practices (EBPs) in routine care and practice. In this commentary, we challenge autism researchers to take the next steps on this journey that Lord, Smith, and colleagues began. In this commentary, we briefly describe (a) the history of intervention research for autistic children and youth, (b) key features of implementation science, and (c) a framework to support the use of implementation science in autism intervention research.

A basic requirement for implementation science is that there should be a clearly operationalized, conceptually sound, EBP to implement. In the last two decades, autism intervention science has accelerated rapidly, providing evidence-based comprehensive program models (e.g. the Early Start Denver Model, Pivotal Response Treatment, and the Lovaas Model), and focused intervention practices (e.g. reinforcement, prompting, and naturalistic strategies). Continued attention to discovering and validating practices that support autistic individuals will always be important. However, the variety of evidence-based intervention approaches and outcomes produced, as documented by systematic reviews and meta-analyses (Hume et al., 2021; Sandbank et al., 2020), suggests that the field is ready to move from solely a science of intervention efficacy, so well articulated by Smith et al., to a science of intervention implementation and sustainment.

Implementation science is “the scientific study of methods to promote the systematic uptake of clinical research findings and other EBPs into routine practice.” (Ogden & Fixsen, 2014, p. 4). Efforts to close the research-to-practice gap lie along a continuum from passive knowledge transfer to more active supports. At the passive end is diffusion, or the expectation that community practitioners will find EBPs on their own. Dissemination comprises more active communication about the innovation (e.g. public health smoking cessation campaigns; Learn the Signs, Act Early). Implementation is an active process that involves activities designed to motivate users and increase their ability to use an innovation (Dearing et al., 2018). Although they are important steps, diffusion and dissemination alone often do not lead to successful use of EBP. Implementation science identifies the change mechanisms (e.g. infrastructure of support, Odom et al., 2013; collaborative research culture, Stahmer et al., 2017) needed to ensure high-quality use of an innovation in practice.