The increased prevalence of autism spectrum disorders (ASD), with associated societal and clinical impacts, calls for a broad community-based dialogue on treatment related ethical and social issues. The Stony Brook Guidelines, based on a community dialogue process with affected individuals, families and professionals, identify and discuss the following topics: treatment goals and happiness, distributive justice, managing the hopes for a cure, sibling responsibilities, intimacy and sex, diagnostic ethics, and research ethics. Our guidelines, based not on “top-down” imposition of professional expertise but rather on “bottom-up” grass roots attention to the voices of affected individuals and families speaking from experience, can inform clinical practice and are also meaningful for the wider social conversation emerging over the treatment of individuals with ASD.Parts of the Stony Brook Guidelines deal directly with public policy:
Ultimately, treatment and access to care for individuals with an ASD should not be a chance consequence of geography, local politics, community resources, health insurance, birth or the ability of parents to advocate effectively, though this set of circumstances is hardly unique to autism. The concern raised by our group members that is specific to autism is the window of opportunity for early interventions that might substantially improve intellectual, social, and emotional functioning across a lifetime. A sense and practice of fairness needs to be developed such that all children with disabilities are provided with services appropriate to their need, with an understanding that the autism community should consider joining with larger movements in advocating for access to educational and medical services. This requires the ability to establish reliable measures of severity of disability and an appropriate range of services that would address each individual‘s needs. Setting mandates for evaluation and service is obviously a contentious issue but such a model could begin to address the need for fairness as well as justice. Ideally parents would not need to be advocating so intensively for their own child‘s needs if they were assured that services were provided on a reasoned and logical basis across all settings.
To reach these goals our group recommends a much fuller listing and description of evidence-based medical requirements for evaluation and treatment of individuals with autism. To establish a fair and measurable system would be complex. An imperfect but fairer service model has been developed in the Early Intervention (zero to three years) Assessment and Treatment programs in New York state. This program does not employ diagnosis-driven interventions (except in some regions for Autism) but assesses five areas of development (speech, cognition, sensory, motor, emotional/behavioral), establishing degree of delay in development of each functional area and allowing specialists to treat those delays which are of clear significance. Without further discussion it can be seen that there could be a structured model for assessment and treatment of autism that incorporates measurable function and defined goals but will have to adapt to great variation in clinical presentation and outcome. Equally such a model would have to evaluate need across a community with regard to costs and resources and has the potential for difficult decisions in relation to where to place resources. For example, some might argue paradoxically that programs need to be more intense for children who have characteristics that might predict better outcome, as is done in fields like stroke rehabilitation. We need to define the concrete treatment needs of this population as well as how to most efficiently and most effectively provide the services required to meet them. Clearer standards are needed to be explicitly and fully stated across the spectrum and the life span.
A number of our core group expressed a need to discuss the issues for individuals with ASD in the institutional justice system of the law. For those working in clinical service, most will be aware of young adults who come into contact with the law because of poor social awareness and judgment, social and communication deficits, association with and exploitation by inappropriate peers, potentially dangerous public emotional outbursts, inappropriate behaviors driven by their internal preoccupations (e.g., impersonating railway employee to gain access to his fixation on trains), or highly inappropriate sexual behavior due to naiveté or inability to relate appropriately. The community reaction is highly variable but there is a need to educate all within the legal system about this group of disorders. The role of the clinician is commonly to provide this education, to strongly advocate for treatment (not incarceration), and establish that the behaviors presented are features of a clinical disorder. One difficulty that commonly arises, because of the nature of the individual‘s presentation, is the belief of some members of the legal system that even if he or she does have a ASD that this does not excuse their actions nor exclude facing the consequences. Community education is needed, including for police.