About Autism & Grief

Professionals in a range of roles and disciplines have a high probability of interacting with someone on the autism spectrum, in their professional capacities and/or in their personal lives.

The Centers for Disease Control and Prevention estimates that one in 45 adults in the United States is autistic (CDC, May 2020). Autism is a disorder that may affect an individual’s behavior, communication, and cognition. Autism is not limited to one presentation, symptom, or gene and is referred to as a “spectrum” due to its high degree of variability.

Autistic individuals have a range of support needs; some may appear to need little or no assistance, while others may clearly require a great deal of support. Some people with autism live independently and may have little to no network of family and friends; others live with family or in other supportive environments for most of their adult lives.

Historically, many people on the spectrum have been misunderstood, misdiagnosed, and forced to live in overly or inappropriately restrictive environments. These histories may engender distrust when interacting with others, particularly with professionals.

Because symptoms of autism first appear in childhood, most new diagnoses today are pediatric. However, autism is a lifelong disorder, and autistic children grow up to become autistic adults. The statistic that one in 45 adults in the United States is autistic means there are currently 5.4 million adults with autism in the U.S. (CDC, May 2020). By 2027, about a million more children and teenagers currently diagnosed with autism will become adults (Autism Speaks, 2017).

While children and young adults are much more likely to be diagnosed today, many older adults—due to an earlier lack of knowledge in the medical community or lack of healthcare access—may have never received a formal autism diagnosis. Some have diagnosed themselves based on extensive research, and others may navigate the world for their whole lives without an accurate diagnosis.

Grief may cause emotional, behavioral, physical, and cognitive responses in autistic adults that are similar to those seen in the neurotypical population. Responses to grief can be affected by one’s understanding and ability to communicate. For some people with autism, coping with the abstract nature of death can be difficult. As many individuals on the spectrum are very concrete thinkers, it may be possible to grasp that a person is gone but more difficult to identify and express feelings about the absence. Some autistic adults may experience a delayed emotional reaction to loss.

Grief for a person with autism may result in:

• No outward change in behavior or a lack of affect can be characteristic of autism, with or without a loss. In both autistic and neurotypical grievers this response should not be mistaken for a lack of understanding or sadness.

• Regression, anxiety, and stress resulting in a feeling of disconnection from their own emotions and/or not feeling what they think others expect them to feel.

• Increased self-soothing behaviors; food refusal; sensory overload; loss of clarity in verbal communication, increased argumentativeness, or oppositional speech; increased emotional outbursts, meltdowns, or sustained crying; no crying; or general agitation.

• Rumination about a death or circumstances surrounding the death, causing the person to feel “stuck.” Rumination is a common characteristic of autism, and an experience of a loss may magnify that tendency. For example—especially in cases of sudden or violent death—an autistic individual might imagine the situation surrounding the death playing repeatedly, like a constant loop in their thought processes. (This is also not uncommon for traumatized neurotypical grievers.)

• Increased echolalia, a term that describes “echoing” or repeating a word or phrase spoken by someone else.

As a professional, it is important to meet each person “where they are.” This includes people with autism. Even if one is uncomfortable or unfamiliar with an individual, professional etiquette must be maintained. Autistic adults should be granted the same level of respect granted to any adult.

Here are a few basic guidelines to remember when speaking to and supporting a grieving person with autism.

• Do not talk about anyone in the third person in their presence (unless that is their preference) or speak to others as though the person was not there.

• Communicate directly with the individual—not to their family, direct support professional, or others around them. If you are unsure about the best method of communication, ask.

• Asking simple, straightforward questions that require straightforward answers may be helpful; provide ample time for the person to respond. Be aware that behaviors also serve as a form of communication.

• Individuals with autism may use communication methods that are visual, but this does not mean that individual is hearing impaired. Do not speak in a raised voice unless you know they are deaf, or if it is necessary due to a noisy environment.

• Autistic adults are adults. Do not talk “down” to them or use a childish voice. Speak clearly at their level of understanding and avoid euphemisms when speaking about death and grief. For example, saying “I’m sorry for your loss” may not be understood, because they may be confused by what you are sorry about when you were not responsible for the person’s death. Or there may be confusion about something being “lost;” someone died, they are not lost. A good rule of thumb is to be “straightforward, but not childish.”

• Do not be offended by, or attempt to correct, behavior you find out of place such as pacing, repetitive movements (also known as stimming), laughing at what you perceive as a sad situation, or echoing of your words. These behaviors may signal distress.

• Always assume an individual can hear and understand everything that is said, even if they cannot or do not respond at length, or respond in a way that seems unusual, inappropriate, or unexpected.

• Be aware of potential causes of sensory overload unique to each person. Sensory overload can affect a person’s ability to communicate and can interfere with the grieving process.

• If you can, try to learn something about an autistic griever’s family, living situation, and any support network they may have. These are the people who know them best and will be the greatest resources for you and the person throughout their grief journey.

Some people find social stories helpful. Click here for three social stories about grief, including one on “Remembering My Loved One” that you can download to read, print, or share.

Cassie is a 21-year-old autistic woman who lived with her grandmother for her entire life. Following the recent death of that grandmother, Cassie was moved from California to Virginia to live with her Aunt Chrissy. While Cassie has a good relationship with her aunt, she reacts strongly to the myriad changes happening all at once: the death of her beloved grandmother, moving across the country, working with new providers, and having to develop a new routine. Initially, Cassie would repeat “Grandma’s coming back” over and over and would cry when Aunt Chrissy reminded her that Grandma had died. This pattern persisted for nearly a month until Cassie became fixated on watching the recorded livestream of the funeral. She became quieter and more withdrawn. Her appetite diminished and Aunt Chrissy could hear her watching television late into the night. Recently a new direct support professional named Kim began working with Cassie. Kim had observed similar reactions to death in previous clients and gently encouraged Cassie to complete her daily tasks, even if she didn’t feel like it. Kim and Cassie often walked near the pond close to Aunt Chrissy’s home, and Cassie grew to love watching the ducks feed each evening. One evening, Cassie admitted that being able to watch the ducks at the pond reminded her of her grandma, who had also loved bird watching. Little by little, Cassie’s appetite returned and she was able to sleep more easily at night.

Reflection Questions

• Name three manifestations of Cassie’s grief.
• Describe Kim’s approach to working with Cassie.
• What might be a next step for Cassie?

Laurel is 23 years old and lives in a facility for adults with developmental disabilities. She attends occupational therapy and is working to achieve greater independence in tasks of daily living. She is highly attached to her father, but he lives two hours away had been visiting less and less frequently. Recently he stopped visiting altogether and instead calls Laurel every few days. Due to the shifting rotation of care providers, Laurel frequently asks when her father will visit, even though she was already told that he is unable to come anymore due to failing eyesight that limits his ability to drive at night. She calms down when staff tell her that he will be there “soon.” Unfortunately, when she asks a different person and is told her father isn’t coming anytime soon, she becomes argumentative and aggressive and slams doors and tips over chairs in frustration.

Reflection Questions

• What strategies might you use to help Laurel when she experiences frustration?
• How might you work with staff for greater continuity of care, and to help the staff understand that Laurel may be expressing loss and grief even though her father is alive?
• How could a care plan be developed with the goal of better connecting Laurel and her father?