How can you help someone with autism process grief?

Navigating grief when your loved one has autism

Dealing with grief when a family member has autism spectrum disorder (ASD) can be a challenge. Not only must caregivers process their own emotions, but they also must help their loved one with autism process their grief in a special way. We met with Chris Simpson, Vaya Health intellectual/developmental disability (I/DD) care manager, and Barbara Bellamy, acute response team manager at Vaya, to find out how they helped their child with autism cope after a loss.

Helping a child with autism process the loss of a loved one

Chris’s daughter was diagnosed with ASD when she was six. Around the same time, his mother passed away.

“It was unexpected. And while everybody else expressed ‘normal’ grief, she was blank faced. No emotion. It was a little off-putting – a little disturbing.”

Chris tried to explain to his daughter what had happened, but it was challenging. Explaining death to a young child is hard enough, he said. It’s even more complicated when the child has ASD.

Be straightforward when explaining death to a child with ASD

“We tried to find ways to relate death to her,” Chris said. “It went straight over her head. The simpler and more direct you can be, the better.”

Below are some specific tips for talking to your child about death:

-Be as concrete as possible

-Avoid using softer terms like “passed away” or “is with the angels”

-Use the word “died” and “death”

-Do not compare death to sleep*

*It is very important that you make a clear distinction between death and sleep. You do not want your child being afraid of going to sleep at night.

Expect unexpected emotions

Weeks after Chris’ mother’s death, his daughter began to have intense outbursts of anger.

Her doctor explained that anger can be a common expression of grief for those with ASD. Other common emotions can include:

-Fear, anxiety

-Increased sensory issues

-Decreased frustration tolerance

-Difficulty with focus or concentration

-Difficulty accepting “no”

-Crying spells

-Unexpected, random outbursts

-Symptoms of depression (i.e., decreased motivation, loss of interest in things they used to enjoy)

-Decreased verbal communication (if they are verbal)

-Inability to deal with new people, new situations

-General difficulty doing day-to-day things

And remember that no two people with ASD will react the same. For example, Chris’ son (who also has ASD) grieved very differently from Chris’ daughter during the loss of another family member.

Provide structure and professional support

“The best thing that helped? Her doctor got her into therapy,” Chris said. “I would’ve never guessed that talk therapy would work for her, but it did. That, and time.”

Chris also encourages parents to reach out to their child’s support system. Notify your child’s school of the loss, so teachers can provide support and prepare for potential outbursts.

Finally, Chris emphasized the importance of routine. Change often makes people with autism anxious. Caregivers can help their child by focusing on what hasn’t changed. Remind them that they’ll still go to school or go on their Sunday trips to the park. Maintaining a structured, stable environment can help children with ASD feel secure and safe.

Don’t forget your own emotional needs

Losing someone is tough. Parents, you’re human, too. Your needs and your emotions are important. Give yourself space away from your child or adult child if you need it.

Take time to take care of yourself so that you can be present for your child when they need you. Remember that if your child with autism responds to grief in a hurtful or frustrating way, they are not trying to be cruel. Talk therapy for yourself can help you avoid any growing resentment toward your child.

What about other types of grief?

Grief isn’t always about death. It could be the loss of a relationship, the loss of an opportunity, or the loss of a lifestyle. Barbara personally witnessed how an unexpected medical diagnosis can lead to feelings of loss. When her son was 19, he was diagnosed with type 1 diabetes. He also has autism.

“He was kind of grieving that loss. Having ASD, he has certain outlets for joy. And he really did enjoy drinking his Dr. Peppers, eating his junk food, and being a teenage boy,” Barbara said.

Practicing patience during tough times is key

Helping her son through his diabetes diagnosis was one of the most difficult things Barbara has gone through as a parent. “When he’s frustrated, it puts the rest of the house on edge. Our whole family has had to be more patient,” she said.

Barbara’s son knows what he’s supposed to eat to stay healthy, but he doesn’t always want to follow the rules. But Barbara keeps him on track, even if he’s unhappy about it.

“He had been in the ICU for a couple days when he was diagnosed,” Barbara said. “He thought he was going to die. So, when we’re restricting him from eating things, we just remind him that we love and care for him and want him to be here for a long time. That usually helps him understand and accept it.”

Final advice for navigating grief when your loved one has autism

“Make sure you have support,” Barbara said. “Being a parent of a child with ASD is hard. Losing someone or something can push you over the edge. So, make sure you reach out and ask for help.”

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