Family and Friends

What is Grief?

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The suggestions below are intended to be a quick reference as you communicate with and support an autistic adult after someone’s death. Each person, situation, and grief response is unique. Please tailor the tips to meet the needs of the individual and refer to other sections of this portal for further information and guidance.

Immediately After a Death

Communicate Clearly and Honestly

  • Communicate news of the death in a safe space with trusted people and allow time for processing the information.
  • Use concrete terms. Do not use familiar abstract phrases like “passed away” or “went to be with angels” or “is in a better place.”
  • For those with high support needs, social stories that help describe situations visually may be the best way to communicate concepts related to the death.
  • Be prepared to address anxiety and concerns about how the individual’s life could change as a result of the death. Provide as much reassurance as possible; encourage use of the strategies and coping techniques that have been helpful to the person in previous stressful situations.

Provide Support

  • Give the person space to grieve in their own way. Keep in mind that there could be a range of reactions, including no reaction, outbursts, laughter, repetitious vocalization, sensory overload, pacing, physical symptoms, and other self-soothing or regressive behaviors.
  • If there is an absence of response or if behavior seems contrary to societal expectations regarding grief, do not assume that the individual is not grieving.
  • Provide support in ways that have been previously comforting for the individual, such as structured routines, and avoid discomforting experiences. If the individual does not like to be comforted physically through hugs, for example, honor that preference.
  • If the person is agreeable, involve family, friends, and other existing support networks—including any relevant faith community—to help provide support. This may be especially helpful if you are also grieving.

Planning for Events Memorializing the Deceased

Communicate and Provide Options

  • Keep the autistic individual informed and involved with post-death ritual preparations and planning to the degree possible.
  • If death rituals, such as a wake, sitting shiva, a funeral, or a memorial service occur, offer ways for them to be involved.
  • Share information about attendance, photos of the places they may choose to go, and a timeline of events.
  • Social stories can help communicate the situations they may encounter and can supply information that may help them feel more comfortable about the event.
  • Communicate about the people who will attend and what will happen at each event. Be especially aware of sensory issues that may present a problem. Suggest ways to alleviate those problems, such as a comforting object to hold, earphones, or a smart phone.
  • Do not force someone to attend an event. Other options such as online participation or a private ceremony may be possible.

Plan and Prepare

  • Create a list or calendar that includes important dates, times, and places, if that has been helpful for an individual in the past.
  • Prepare them for what to expect using photos from websites; visiting locations such as a funeral home, place of worship, or cemetery beforehand; or using social stories.
  • Prepare the individual about how to respond to others who may be displaying outward emotions or who may want to hug or talk with them.
  • Identify a trusted support person who can provide companionship during events if necessary; it may be helpful to identify someone who is not intimately involved with the events.
  • Develop an exit strategy for the autistic individual that they can use if they need breaks or want to leave the event early.

In the Months Following the Loss

Be Patient

  • Understand that grief does not follow a prescriptive path. There are no stages or timetables for grief.
  • As with anyone who is bereaved, understand that there will be good and bad days, which can feel like a rollercoaster.
  • Be sensitive to signs of grief and provide support if grief surges occur months or even years after the death.

Continue Support

  • Being aware of previous losses experienced by the person and how they coped and adjusted to those losses may help provide a road map for supporting them in the current loss.
  • Help the person maintain memories of the deceased by visiting places special to the deceased person, with photographs, or through expressive arts.
  • If the person cannot return to their previous level of functioning six months after the loss, seek professional help from a trained grief counselor who is familiar with autism and sensitive to autistic needs.