Adults with Autism Grieve, Too

In recent years, a lot of attention has been paid to the difficulties of children on the autism spectrum. Less thought has focused on the issues that these children may face as they enter adulthood.

Even with children with autism, there has been little emphasis on supporting these children when they experience loss. Thus, the issue of how autistic adults handle the inevitable losses they will experience is little studied or discussed.

Yet it remains an important concern. It is generally believed that 1 in 45 adults in the United States are on the autism spectrum. And a spectrum it is—ranging from those who are non-speaking or have severe communication deficits to those with some degree of intellectual or developmental disabilities to the remainder who can function with little or no assistance (Dietz, Rose, McArthur, & Maenner, 2020).

While the severity of symptoms may vary across the spectrum, autism generally includes such characteristics as difficulties in understanding others' thoughts or feelings, trouble following social rules, anxiety in social situations, difficulties in identifying or communicating feelings, and interpreting language very literally. Often, persons with autism¹ find solace in routine. They may also avoid eye contact and focus on small details such as smells or sounds that neurotypical individuals may ignore. In short, autistic adults tend to have difficulties in expressing emotion and in seeking and cultivating support.

Naturally, these characteristics can complicate the experience of grief. After a death, in some cases, there might be little outward expression of sadness—which may lead others to think that the autistic individual didn’t understand the loss or is unaffected by it. Yet these external appearances do not mean that the adult with autism is not grieving.

Other autistic adults may experience regressive behaviors, such as sleep disturbances or nighttime enuresis, or engage in self-soothing behaviors such as rocking or pacing. The death may also cause profound anxiety; the autistic individual may struggle to know how they should react, feel nervous about the death rituals, or worry about how the death might change their lives.

Certainly, the individual with autism may have responses also found in neurotypical populations, such as ruminating about the death, as well as all the physical, cognitive, emotional, and spiritual manifestations typically experienced in grief. In fact, given the fact that many persons with autism find it difficult to express or describe their emotions, they may perhaps be more likely to experience physical reactions such as pain and aches, nausea, or headaches.

No matter their response, adults with autism do grieve and need support. As with any group, they need to be treated with respect. Supportive others should address them directly and find suitable ways to communicate—especially with those who are non-verbal. It is best to use direct and literal language when communicating, rather than using euphemisms such as “lost.”

Most importantly, treat them as the adults they are. Listen carefully to their concerns. Since these deaths can be very traumatic, using a trauma-informed lens in grief counseling can be very helpful. Most importantly, respect the individuality of everyone with autism. As Dr. Stephen Shore, a professor of special education at Adelphi University and an autistic adult, reminds us: “When you have met one person with autism, you have met one person with autism.”²