In our modules, caregiver refers to anybody involved in caring for an autistic child. This could mean biological parents, adoptive parents, foster parents, aunts and uncles, grandparents, or other adults who care for the child and make choices to support the child’s development.

Early Intervention (EI): a program that funds a variety of support services for young children with disabilities (typically from birth to 3 years old) and their families. It is federally-mandated under Part C of the Individuals with Disabilities Education Act (2004). This program provides free evaluations and services, such as speech and occupational therapy, to children with disabilities.

• Early Intervention is the term used to describe this program and research that investigates ways to support children and families served by this program. *We do not use the term “intervention” to imply that autism is a disease or disorder requiring “intervention” to prevent or cure autism characteristics from developing.

Autistic adult/child: an adult or child who meets the criteria for a diagnosis of autism. Some people prefer this term because it shows that autism is an important, essential part of their identity. Surveys have shown that most adults prefer the term “autistic” instead of other identity terms, and this term is growing in popularity with the neurodiversity movement. We will use this “identity-first” terminology throughout our modules, but we understand that this is not a universal preference.

Person/child with autism: Some people prefer this term because it shows that autism is just one part of their identity. Surveys have shown that many non-autistic parents of autistic children prefer the phrase “child with autism.”  This is known as “person-first” terminology.

A “community member” is a person who is directly impacted by the research in question. For early childhood autism therapy research, this can mean autistic children, autistic adults, caregivers (both autistic and non-autistic), clinicians, and EI policy-makers. We will focus on autistic adults and caregivers (both autistic and non-autistic) as our primary “community members” in these modules.

When we mention the “autistic community,” this refers to individuals who are actually autistic. When we mention the “autism community,” this refers to other people who care about (and for) autistic people, such as caregivers and family members.

Patient-Centered Outcomes Research (PCOR) is a kind of research that investigates things that are important to community members. PCOR investigates therapies and supports that matter to community members, and look at their impact on goals and outcomes that are important. It answers questions that the community cares about! For this reason, PCOR is very important for the future of early childhood autism therapies and supports.

The word “patient” is not used to indicate that autistic people have a medical disorder that needs to be cured, but this type of research was created in medical settings, which is why “patient” is used. However, it can be applied to autism research as well.

Comparative Effectiveness Research (CER) is research that compares the benefits and harms of different therapy approaches. This type of research is important for knowing the best ways to support autistic people and caregivers, and even how different approaches might work better for different people! CER can also be done in a “patient-centered” way. The therapy approaches and benefits/harms the researchers investigate in a patient-centered CER study can be chosen based on what’s important to community members.

When CER is done in a patient-centered way, it can also be called “PCOR/CER”.

Here is a link to the glossary of all terms we will define in these modules. You can find more information about these terms within the module presentations!