Stories about ASD

The Mystery of SB93

ASD Roadmap

More than Rocket Science

There is little relevant research and fewer experienced leaders for surprisingly complex projects like those envisioned through SB93

September 19, 2019


So let's say you have not found much information that offers real insights into a project's process or progress. What other factors that should "investors" take into account before making any recommendations? They should be made aware of three almost universal and always misplaced assumptions about the development of new programs of services and training in the community, especially those with statewide goals: (1) It is not rocket science; (2) There is research to guide these kind of work, and; (3) It is easy to identify leaders with the training and experience to undertake these kind of projects. These misplaced assumptions can lead both funders and advocates to underestimate the effort needed and overestimate the progress expected.

The gap in leadership

Let's begin with number 3, because that is where most projects begin to stumble.  In the case of SB93, the search for a program director has continued for 2 1/2 years. As I described in a separate series of essays about why so many programs fail to launch, there is no natural pipeline of new leaders of community-based programs that aspire to be innovative. Why? There are certainly very few relevant programs of training, and the length of time required to develop new programs means that relevant experience takes many years to accumulate.  And my recent review of research on improving ASD identification practices reveals a third factor: none of the principal investigators of these research grants had meaningful clinical - let alone program leadership - experience outside of research settings.  And so traditional university pipelines run dry.

Developing successful programs of services and research requires a range of skills; not only direct clinical and community experience, but also a deep understanding of the latest research, a familiarity with policy issues, and the potential to build alliances across agencies and sectors. And all of this in addition to good generic project management and communication skills. Maybe you can close these gaps by creating a steering committee composed of experienced and committed program leaders, but more often than not, any available leaders may face parallel challenges within their own agencies.

Nonetheless, there are still many ways to move forward even without the ideal leader.  One strategy for a successful launch is to build the position - if not the program itself - around the kinds of emerging leaders who might reasonably be discovered through a search. In the case of SB93, this could include an initially narrow focus on one or two areas (to take advantage of the more specific and established expertise some candidates might bring), or bringing in other supports (an experienced assistant to offload some responsibilities, or a consultant to provide mentoring or in developing a specific area of strategic focus, and so on).  Bundling the position with a faculty appointment can help to build bridges with university faculty and perhaps attract a broader range of candidates.

The gap in relevant research and scholarship

The simple fact is that there is remarkably little scholarship or research about how to design and implement programs of ASD services or training, or even just to incorporate new evidence-based practices into established programs. In fact, it was this gap in information about statewide programs that led to my second book, which remains one of only a handful of publications relevant to this topic to outline specific strategies.  Little has changed in the years since its publication, except for the emergence of an annual meeting of state ASD leaders, the National Autism Leadership Collaborative. This continued gap in scholarship is why I have begin to offer pro bono consultation to programs like those created through SB93, in exchange for the opportunity to document successes and challenges.

A similar scholarship gap  is also evident with respect to the kind of day-to-day practices used in typical settings that statewide programs would seek to capitalize upon. Despite the significant investments in ASD research since 2008, relatively little research appears to have actually been intended to directly improve community practice; my analyses of research conducted between 2008 and 2015 to ostensibly improve ASD identification suggest that this constituted only 1 out of every 7 dollars allocated. The bottom line: there is simply very little formal research or traditional academic scholarship available to guide leaders interested in developing such programs.

Statewide program development is not rocket science... it is harder!

Those with little or no experience in delivering services or training are especially prone to another misplaced assumption: that such programs are easy to design and to deliver. They are quick to blame incompetent management or inadequate funding when progress appears to have stalled. In fact, developing a statewide program is a complex, multiyear undertaking.

Identifying the right leader is certainly helpful, but it is also rarely enough. Program development is often an iterative process that depends emerging research, local partnerships, and shifting resources and priorities. Even an experienced leader, with well-documented examples of successful programs to emulate, must work to discover what kind of programs of services or training can build on the partnerships, priorities, and resources specific to the region or the state.

There are several  steps and strategies that program developers can draw upon, under these circumstances Perhaps the first step is to decide whether to aim for expansion or to expect true innovation.  There are clear, immediate, and often overlooked benefits to expanding existing services, whether this involves an increase in existing capacity, an extension of existing services to new populations or sectors, or the addition of new methods, and so on. But too often, those proposing a project aspire to innovate, whether to please a boss or entice a funder.  Nonetheless, there are a range of options available for programs seeking to expand or innovate in school, in university, and in hospital-based settings. Each of these options can target specific and important gaps in services and training common to these particular settings.

One important set of strategies involves breaking a project up into phases.  Planning for a multi-year roll-out can help to discover the local priorities and resources, nurture the partnerships and expertise, and then slowly build up the capacity needed to begin the stumble towards system change. In the case of SB93, for example, an initial focus on school-based training could be extended in a second phase to health and community settings: this would take advantage of the greater resources and oversight within the education sector. A first phase could focus on a limited range of pivotal topics carefully selected to leverage existing agency training and promote cross-agency coordination, as described in more detail in my 2013 book. A second phase could also include a shift beyond training to policy recommendations, once gaps have been identified that training alone will not close.

Conceptualizing projects around different phases brings other benefits. In the case of SB93, for example developing 2 to 3 year cycles around training for a specific topic could help to build the in-house expertise essential to long-term sustainability. Later phases might involve extending training activities to address other related populations, a key strategy to bring other advocacy groups on board who might otherwise balk at (yet another) initiative focusing on ASD.

This kind of strategic approach towards building capacity and local expertise is especially important for programs of training. Most professionals begin their careers with little specialized training in ASD, and many programs of services offer little in the way of ongoing professional development. In this environment, any program of training will be enthusiastically welcomed because it fills an important gap. The risk here is that training quickly becomes a black hole; time and resources are drawn into series of isolated and poorly defined topics, delivered to one set of professionals, one agency, or one sector at a time.  Individual training events that might be initially well-received will have little impact on outcomes without a clear strategy for the medium- to long-term - growing capacity across multiple sites, nurturing local experts, developing program guidelines and policies, building consensus and coordination across agencies towards shared priorities, and so on,

A long-term, strategic focus towards specific sets of goals is equally critical  for initiatives related to direct services. For example, collective impact can help agencies to identify shared goals in pivotal areas where their services often overlap, like identification, case coordination, and behavior problems. This provides immediate opportunities to improve services without significant investments of shared resources, at first by avoiding duplication, and later by active coordination.  Ultimately, this can lead agencies to braid funding and resources, at least with respect to training if not services themselves.



The logo is adapted from Joaquim Alves Gaspar's drawing of Pedro Reinel's compass rose.