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Navigating Grief When Your Loved One Has Autism Spectrum Disorder

Cardinal Innovations Healthcare — August 12, 2020 — 6 min read
Losing someone you love is hard. Grief can disrupt households, cause emotional instability, and affect every family member differently.

Dealing with grief when a family member has Autism Spectrum Disorder can be a challenge. Not only must caregivers and parents process their own emotions, but they also must help their child or loved one with autism process their grief in a special way. We met with peer advisor and psychologist Dr. LaTanya Sobczak to find out the best ways you can help your child with autism understand grief.

Dealing with an Unexpected Death When Your Child Has Autism

Dr. Sobczak answered some of the most commonly asked questions from parents and caregivers.

During the initial shock of losing a loved one, what should you do if you have a child or adult on the autism spectrum in the house?

“It depends on the circumstances,” Dr. Sobczak said. “There may be lots of things you can’t control. For example, if someone dies out of the blue the death may be more difficult to process. You may not be able to control your own response in the moment.”

It may be best to find some privacy if you feel like you are having an intense emotional reaction. Your child may be scared of or may not understand what you’re going through.

Parents and caregivers, it’s important to plan ahead for the possibility of a loved one dying. Designate another person—staff or a family member—in advance to provide support. You will need space to deal with your own emotions, and you may not be able to provide the security or emotional stability that you usually would provide your child during a crisis.

Should I Hide the Death of a Loved One From My Child With Autism?

“No, you shouldn’t. Kids can be very tuned-in to their parents’ emotions. Children with autism have a tendency to always scan for a threat. Then, they look to their caregivers to know if there is something going on that may harm them. If they sense that you are upset but don’t know why, this can be very frightening for them,” Dr. Sobczak said.

Especially if the person was a part of their routine, parents should not hide the death. Many children or adults on the spectrum may interpret their absence in a negative way. They may believe that the person who died “left” them or “chose” to not be in their life anymore. They might wonder what they did to make them leave and start to worry about others in their life leaving them.

By explaining that their loved one died (and what death means) to your child, you can help your child understand that the they did not choose to leave them.
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How to Tell Your Child With Autism About Death

Speaking about death with your child can be difficult. Dr. Sobczak offered parents some answers.

How should parents first approach speaking to their family member with autism about a death?

It’s important for parents to think about their child’s cognitive level. Ask yourself: What does my child already know about death? There are a lot of resources available depending on each cognitive level.

For those with autism, everything is often very black and white. Here are some tips for talking to your child:
  • 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.

Example of What to Say When Explaining Death to Your Child with Autism

If you’re having trouble coming up with the right words, consider saying this:

“Death is when someone’s body stops working. They don’t need to eat or sleep, and they don’t get cold or hot anymore. You will not see them again in this body and on this planet. Death is very different from going to sleep.”

It is okay to talk about religious beliefs and what happens after death after the physical transition of death has been made clear.

How to Support Your Child With Autism as You Both Grieve

Build the support around yourself and your child.
This is an opportunity to show your child how we take care of ourselves when something sad happens that we cannot change. Explain to your child that you both can talk about the death and their grief anytime they want. Tell your child that grief is normal and that it’s okay to be sad.

Share your favorite memories about your loved one.
You may come up with a way you want to remember them, like planting a tree in their memory or making an art project. This also means that you can share with your child if you’re feeling sad, too.

Focus on what hasn’t changed.
However, change—like the absence of someone in their routine—often makes people with autism anxious. Dr. Sobczak suggested that parents “guide the conversation toward things (parts of their routine or things they look forward to) that haven’t changed after a death. They will still go to Day Program on Monday or their cousin’s house this weekend.”

Don’t push the topic for too long.
Dr. Sobczak said, “Explain to your child that their needs will always be taken care of, and then leave it there if they don’t have further questions. There’s a point where the person with autism may be done and not want to keep talking about it. They may need space to process what they have been told, so don’t push if they are done for now.”

How Might My Child With Autism Grieve a Person’s Death?

Again, this all depends on your child and their cognitive level. Some people with autism may need more daily activities—some might need less. You must understand your child or loved one and look out for what they seem to be asking for.

Here are some ways your family member with autism may react to a loved one’s death:
  • Fear
  • Anxiety
  • Increased sensory issues
  • Decreased frustration tolerance
  • Difficulty with focus or concentration
  • Losing patience more quickly
  • 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
For those with both autism and obsessive-compulsive disorder (OCD) or obsessive-compulsive tendencies, they may respond by getting “stuck” on a certain topics (including death and people leaving) more often.

It’s also normal for someone with autism to not have a response at all. They may not have a reaction until weeks, months, or even years later. It can take time for them to process what has happened.

Final Tips for Parents of Those With Autism That Are Handling Grief

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. Do your best to avoid sitting in resentment toward them.

Dr. Sobczak’s Message to Parents of Those With Autism During Times of Grief

“Everyone’s different. Even though grief can be painful, it’s an opportunity for growth for the individual with autism. Setbacks may happen. But, with the right supports in place, this won’t break them. Our folks are resilient. You can survive it together.”
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