Glossary of Autism & Grief Terms
Glossary of Autism & Grief Terms
Anticipatory grief experienced when a person expects a death; for example, when an individual develops a terminal illness. Anticipatory grief also can be experienced by patients, families, and healthcare and social service personnel. Researchers originally hypothesized that persons associated with the dying person who experienced anticipatory grief would have better outcomes following the actual death, but this hypothesis was not supported by research. Anticipatory grief has been further defined by Dr. Therese Rando as anticipatory mourning, the response to many tangible and intangible losses that the dying person and those in their intimate network encounter during a terminal illness.
Asperger syndrome (AS) is a legacy term referring to a specific subtype of autism spectrum disorder that includes many challenges characteristic of autism, typically without intellectual disability or obvious verbal impairment. AS no longer exists as a formal diagnosis defined by the medical and psychiatric community, which subsumed it under autism spectrum disorder in the 2013 edition of the Diagnostic and Statistical Manual (DSM-5). Some use the term Asperger profile to identify those who previously could have been diagnosed with AS. Many with an Asperger profile can leverage their cognitive and other abilities to compensate for the challenges that they face. As an Asperger profile can profoundly impact people throughout their lives, many still benefit from a variety of supports. Because of their atypical combination of significant strengths and challenges, people with an Asperger profile are often misunderstood, and their challenges either go unrecognized or they are misdiagnosed. Aspie is often used to describe someone with an Asperger profile, generally in a spirit of affection and affirmation.
Augmentative and Alternative Communication
Augmentative and Alternative Communication (AAC) is an area of clinical practice that supplements or compensates for impairments in speech-language production. People with varying degrees of speech or language challenges may rely on AAC to supplement or replace non-functional speech to solve everyday communicative challenges. Falling under the umbrella of assistive technology, AAC includes multiple methods of communication used to express an individual’s thoughts, feelings, needs, and ideas. AAC uses the individual’s existing abilities to make communication as efficient and effective as possible when speech alone does not work. AAC encompasses a range of activities which includes facial expression, eye pointing, gesture, signing, symbols, spelling out a message on a letter board or computer, electronic speech output aids, etc. There are two main categories of AAC systems: unaided and aided. Unaided AAC includes methods of communication that do not involve a piece of additional or external equipment. Aided AAC includes methods of communication which do involve additional equipment.
Autism or Autism Spectrum Disorder (ASD)
Autism, or autism spectrum disorder (ASD), refers to a broad range of conditions characterized by challenges with social skills, repetitive behaviors, speech, and non-verbal communication. According to the U.S. Centers for Disease Control and Prevention, autism affects an estimated 1 in 44 children in the U.S. today. There is not one autism but many subtypes, most influenced by a combination of genetic and environmental factors. Because autism is a spectrum disorder each person with autism has a distinct set of strengths and challenges. Autism may or may not include an intellectual disability; just over half of autistics are diagnosed with significant or borderline intellectual disability. 40% of autistics are nonspeaking or minimally speaking, although verbal ability does not necessarily correlate with intellectual ability. The ways in which autistics learn, think, and problem solve can range from highly skilled to severely challenged. Some people with ASD require significant daily support on a lifelong basis, while others need less support and in some cases can live independently.
Bereavement is an objective state of loss. A widow is a bereaved spouse.
Casket or coffin
A casket and coffin are both containers in which the body of a dead person is buried. The terms are sometimes used interchangeably, but there are differences. Caskets have a hinged lid and are typically metal or wood and rectangular in shape. Coffins are usually six-sided and wooden, with a top that is removeable and not hinged.
Chronic health conditions
Chronic health conditions are defined broadly as conditions that last one year or more and require ongoing medical attention or limit activities of daily living or both. According to the U.S. Centers for Disease Control and Prevention, 6 in 10 U.S. adults live with a chronic health condition.
A columbarium is a building, often within the grounds of a cemetery, where urns are kept. Urns contain the cremains of the deceased after cremation.
Cremains are the remains from a deceased, cremated body. People who work at a funeral home or crematory use a special machine that gets very hot. The heat removes the water from the body; what remains of the body after the process is similar in composition and appearance to sand or ash.
Cremation is the processing of the deceased’s body to cremains.
A crematory is a place where a dead person’s body is cremated; a crematorium.
Disenfranchised grief is grief that is not openly acknowledged, socially sanctioned, or publicly mourned.
Diagnostic and Statistical Manual (DSM)
The American Psychiatric Association’s Diagnostic and Statistical Manual (DSM) is a professional reference that provides a common language and standardized criteria to help diagnose autism as well as other developmental and psychiatric conditions. The most current version was published in 2015 and is the 5th edition, often referred to as the DSM-5.
A fidget tool is small, handheld object, the manipulation of which can contribute to focus, calming, and self-regulation. Also known as fidgets, they come in all different shapes, sizes, and textures. Stress balls, spinners, and putty are common examples of fidget tools that can help focus anxious energy and provide calming tactile input.
A funeral home is a place where the dead are prepared for burial or cremation. Funeral and/or memorial services are often held at a funeral home.
A grief assessment is an evaluation of the ways that a person is responding to a loss.
Headstones are slabs of stone at the heads of graves at a cemetery. The stones often have the name of the person who died, their birth and death dates, and may include words that honor the person. Also called a marker.
A hearse is a vehicle used for transporting the deceased to a funeral home, funeral or memorial service, or burial site.
Hospice care is medical care that helps someone with a terminal illness live as well as possible for as long as possible, increasing quality of life. Hospice addresses symptom management, coordination of care, communication and decision making, clarification of goals of care, and quality of life. Hospice care is provided by an interdisciplinary team of professionals who address physical, psychosocial, and spiritual distress focused on both the dying person and their family and/or intimate network.
Intellectual and developmental disabilities (IDDs)
Intellectual and developmental disabilities (IDDs) are developmental differences typically present at birth that uniquely affect the trajectory of an individual’s physical, intellectual, and/or emotional development. Many of these conditions affect multiple body parts or systems, including nervous, sensory, and metabolic systems. An intellectual disability can be identified any time before a child turns 18 and is characterized by differences with both intellectual functioning (including the ability to learn, reason, or problem solve) and adaptive behavior (including everyday social and life skills). Developmental disabilities are a broader category of often lifelong challenges that can be intellectual, physical, or both. Many specific conditions present at birth such as Down syndrome, cerebral palsy, and autism are considered developmental disabilities by the medical and psychiatric communities.
A loss inventory refers to a variety of assessment tools, such as questionnaires, that review the history of losses an individual has experienced.
A mausoleum is an above-ground building where caskets and urns are housed.
A meltdown results from a state of being overwhelmed, and can include behaviors such as crying, vocalizing, fleeing from safe spaces, physical demonstrations of anger, and psychological fragility. A meltdown is a reaction to a high level of anxiety and distress which an individual feels they cannot escape. A meltdown is not a ‘temper tantrum;’ it is a self-protective reaction to a highly distressing or overstimulating situation and is physically and emotionally draining for the individual who experiences it.
A morgue is a place where a deceased body is safely stored until it is ready to be moved to a funeral home or crematory.
A nasal cannula is a medical device used to deliver oxygen to a person with low oxygen supply. The device is placed just below the nose and delivers air through two prongs that enter the nostrils.
Neurodiverse is a term adopted by many in the autism community to frame autistic neurological profiles as differences rather than deficits. The goal of the neurodiversity movement is to increase acceptance and inclusion of people with all kinds of neurological profiles, emphasizing that there is no one “right” way of thinking, learning, and behaving.
Neurotypical (NT) is a term coined by individuals with neurodiverse profiles to describe the majority of people who experience the world in a more prevalent way and implies the absence of neurological differences.
Palliative care is medical care focused on managing symptoms, often of a serious or chronic illness.
Picture Exchange Communication System (PECS)
The Picture Exchange Communication System (PECS) is a unique picture-based form of augmentative and alternative communication used by children and adults of all ages to express their needs, interests, and preferences.
Stimming is any repetitive self-stimulating behavior undertaken to increase physical and/or emotional regulation; examples include bouncing, rocking, hair twirling, pacing, vocalizations, tapping, and hand flapping. Stimming is an important self-soothing/coping mechanism that is common among autistics and as such should be accepted rather than discouraged or suppressed.
An urn is a container used for storing the ashes of a cremated person.
Sounds that are not words: examples of vocalizations include laughter, screeches, tongue clicks, or humming.