As the population of people on the autism spectrum grows, the industry of autism service provision burgeons. This is both the good news and the bad news. Lack of opportunities and options—especially for adults with ASD—means that many families are desperate for support. An increase in attention to our population’s needs will undoubtedly mean that more people can be served and helped. But it can also mean that the industry expands quickly and without responsible standards of practice.
It is incumbent on families of adults with autism to engage in dialogue about best practice and to hold service providers accountable for meeting our population’s needs well and responsibly. We need service providers who understand the intricacies of working with adults with autism and who understand the complexities of interacting with their families. We must insist that companies that seek our dollars—either privately or as taxpayers—actually deliver the goods, not just lip service. These dollars are very dear, and must last.
Adults with autism and their families are vulnerable as consumers, precisely because there are so few services available. Marketing staffs know this. They know what to say to us to tempt us to sign on. The most enticing promise is that of potential employment. Acquisition of independent living skills is another big sell, as is the ability to self-advocate. We yearn not only for increased independence for our children, but normalization for our families. And so service providers fill their brochures and websites with glossy pictures of smiling adults at work, with friends, in the community. We imagine our adult children in those snapshots.
Pretty pictures aren’t enough, however. There must be something behind the spin. We need to ask service providers to talk in terms of program methodology, efficacy, efficiency and outcome. In the article, “Researchers report Wanh, Wanh, Wanh, Wuh-Wahn, Waaahn” by Sophia Colamarino, we focused on how to evaluate science reports regarding autism. The same principles outlined there can be applied when it comes to service provision. It is not unreasonable to expect service providers to know and report on their rate of success in what they do. And it is not unreasonable to expect these companies to gather and report this information responsibly. If a provider purports to develop employability, for example, consumers need to ask how many of the clients who’ve passed through the program have obtained and maintained jobs. Be wary of the “data” which provides statistics without information on how the study was conducted. In other words, let’s say 100 adults with autism have exited a program. It is not meaningful to contact 10 of them—especially if they are not randomly chosen—find five people who have held some type of job and report that “50% of former clients surveyed are employed” without also describing the sample size and how the participants were chosen. If examining the acquisition of independent living skills, it is important to understand how these skills were measured at intake, and how they are being measured now. Parents sometimes assume that an adult with ASD has limited skills because they’ve never pushed for demonstration of those skills. If skill assessment is based on parent report, the “baseline” of existing skills can be inaccurate and the success of the service provider can be exaggerated.
As a community, we need to be focusing on the development of affordable services of quality. We need to feel sufficiently empowered as consumers to ask for real, meaningful outcome data. When the Individuals with Disabilities Education Act (IDEA) was created and reauthorized, it was mandated that IEPs contain goals that are measurable. We should expect adult services to measure progress as well. Yes, it’s difficult. Yes, if a provider has only been around for a few years, data will be limited. But a service provider worth its salt will quickly turn its attention to self-evaluation. Not only to provide consumers with accurate information, but to ensure that its model is functioning as intended.
At AA16 we view it as central to our mission to search out, analyze, and report on innovative, responsible service providers. We’re interested in specific companies, but we’re more interested in models of service delivery that work. We want to understand how the stand-out companies do what they do and how families across the country can access or replicate those models. We need many more services for adults with autism. But we can’t afford for these services to be ineffective or wasteful. As individual families, and as a country, we must insist that this infant industry grow up strong.