by Leah McClimans, Ph.D.
The Autism CARES (Collaboration, Accountability, Research, Education and Support) Act is currently up for reauthorization before Congress. Autism CARES is the main source of federal funding for ASD Spectrum Disorder (ASD) research, services, training and monitoring. A version of this Act was signed into law in 2006, and since then over $3.1 billion has been dedicated to ASD research and training. It’s a crucial piece of legislation in part because it aims to help us understand better what interventions and assistive technologies work to support people with ASD and their families. But it turns out that finding answers to “what works” for people with ASD is challenging. Traditional approaches to developing an evidence base to determine “what works” conflicts with the reality of ASD.
ASD is the umbrella term used to group a range of neurological developmental disorders. It’s a spectrum because individuals who present with ASD vary greatly in their behavior and development. Generally, a diagnosis of ASD tracks persistent social, communication and interaction deficits in multiple contexts, and restricted and repetitive patterns of behavior, interests, or activities. Approximately 1 in 59 children are diagnosed with ASD in the US.
Having a child with ASD is expensive. Behavioral therapy, speech and language therapy, and additional therapies for co-morbid conditions tend to carry the biggest price tag ranging from $19,000-$43,000/year for children without an intellectual disability, to twice this price if an intellectual disability is also present (about 31% of children with ASD also have an intellectual disability). Given the cost—which for many families is self-paid—it’s important to know what services are most likely to help. Moreover, therapies are time-consuming, and can also extract an emotional and psychological toll on children with autism, and their family members. Therapies often put children with autism in unfamiliar environments and may ask them to try or do things they find, at first, stressful. Siblings of children with autism are impacted by the time and energy it takes for parents to manage the therapies of their siblings, and parents must find time to organize and support these therapies, and pay for most of them. It’s not uncommon for one adult family member to decrease their working hours so they can coordinate the ASD care and treatment for their child (in fact, parents’ lost wages is the second highest cost of treating ASD in childhood). Compassion, beneficence and prudence call on us as surely as economics to seek answers to what services work best to support children with ASD and their families.
But finding answers to what works for people with ASD is challenging, and traditional evidence-based methods may not always be sufficient. Traditional evidence-based methods tend to favor scientific approaches that are standardized, yield outcomes that are generalizable to the entire population of interest, and impartial. These values aim to create an evidence base that limits bias and increases fairness. Yet ASD, and hence the interventions and technologies that are used to support it, is characterized by individuality, diversity, and relationships—values that challenge the traditional evidence-base world view.
ASD is a broad-spectrum disorder, with many subtypes. This means that it manifests in highly individual ways from one person to the next. The ways that people with ASD learn, think and problem-solve range from highly skilled to severely challenged, and the support they need is also highly individualized. Moreover, ASD often occurs with other problems or disorders, such as intellectual disability, gastrointestinal problems, epilepsy, anxiety, bipolar disorder, disrupted sleep and so on. People with two or more chronic medical conditions are called “multimorbid”. Supporting people with multimorbidity is challenging because the conditions often interrelate—anxiety will affect how ASD manifests, and ASD will affect how anxiety manifests. The presence of multimorbidity increases the diversity of needs that people with ASD have, and further individuates the kinds of support that is required.
Furthermore, unlike, perhaps pharmaceutical drugs which may be effective solely through a biochemical process, the effectiveness of interventions and technologies that support people with ASD typically require family buy-in. Interventions and technologies that support people with ASD work or don’t in part due to the way they are integrated into family and other everyday relationships. Parents in particular have an important role to play in establishing long-term gains from ASD interventions and assistive technologies. Yet family circumstances differ significantly and what works for one family may not work for another. Take an example. Assistance dogs are sometimes used as an assistive technology to support children with autism and their families. But an assistance dog isn’t a viable option for every family: a family member might be allergic to dogs, afraid of dogs, not like dogs or may not bond with this particular dog. Additionally, assistance dogs aren’t pets, they are a form of technology, and they have special needs. For instance, some training schools will not give an assistance dog to a family unless they have someone who can be with the dog all day long.
Despite the funding provided by Autism CARES, the evidence base for ASD is still lacking in important areas such as interventions and assistive technologies for motor skills, cognitive performance, vocational skills and mental health. One practical consequence of this is that ASD support services and assistive technologies are less likely to be included in national health and welfare schemes, and this lack of inclusion means that there is limited access to these services and supports (despite assistive technology being recognized as a human right by The Convention on the Rights of Persons with Disabilities).
The obvious response is that we need better evidence and Autism CARES reauthorization is an important piece of legislation for funding it. But in developing the evidence for what works to support people with ASD and their families, we need to recognize that one-size-fits-all-off-the-shelf approaches may not be appropriate. In coming to this realization, we may have to expand what we mean by “high quality” evidence to include evidence consistent with the values of individuality, diversity and relationships. In response to this problem, the network Integrating Values into Evidence-Based Medicine (INVITE) was established to develop approaches to integrating a range of values into evidence construction.