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Advice for providing grief support to kids on the autism spectrum

Advice for providing grief support to kids on the autism spectrum

For children on the autism spectrum, the many facets of grief can be potentially more confusing and distressing than for a neurotypical individual. Parents may notice behavioral changes--subtle or overt--as well as differences in sensory perception. It is very important to be aware of these changes. Not only is communication and openness critical in providing support, but your child also needs your assistance to stay balanced and healthy. This advice will help you support your child in his or her grief. Through it all, remember that grief is a normal and natural response to the death of someone we love.


Do

Do speak about death in concrete terms

Answer questions in a way that is as concrete as possible and avoid euphemisms for death. Use the words, “dead,” “death,” “dying” and “died” when speaking about the individual’s death. Avoid using euphemisms such as, “passed away” or “we lost Grandpa.” Concrete language means less misunderstanding and confusion for kids.
 

Do assume kids are grieving

Remember that even if your child cannot speak, it doesn’t mean that he or she does not have anything to say. Operate under the assumption that your child is aware, and be sure to treat him or her in this manner. Losing someone close to us is difficult for everyone.

Do have kids participate in rituals

Give your kids the facts, allow them time and space to process the message, and urge them to ask questions. Let them participate in funerals, or other rituals and traditions, with a plan on how to handle their needs. Be sure to have a designated person to help them take breaks or walks. If kids choose not to participate fully, provide someone who can stay with them.
 

Do stick to a set schedule of activities

Kids, teens and many adults on the autism spectrum thrive on a predictable schedule. As grief is one of the most chaotic times in our lives, ensuring a continuation of the daily routine is generally very helpful. Try and stick to their daily schedule and nighttime rituals, such as bath and bedtime stories.
 

Do urge kids to make decisions about their own grief process

Allow your kids to decide whether they would like to see the body, participate in certain aspects of a ritual, cry or not cry, visit the cemetery, and be involved in memorials and other remembrance activities.


Don't

Do not forget to pay attention to food intake and hydration

Most people experience changes in appetite during grief. This is complicated by the fact that many individuals on the autism spectrum already have difficulties with eating and drinking, as well as listening to various body signals, at the best of times. Consequently, it is vital to ensure your kids get plenty of nutritious food and hydration. You may even decide to build healthy snack and meal times into a daily routine or schedule. Older teens and some adults can set alarms on their phones or other devices to remind them to eat properly.

Do not ignore sensory issues

Because it is common for individuals on the autism spectrum to experience sensory processing difficulties, be aware of your child’s sensory needs. Understand that new or previously unseen sensory processing difficulties may emerge as a result of grief. Look for any changes in sensory perception. Communicate with your child about ways to help resolve sensory difficulties and explore these as best you can.

Some ways to help your child include keeping the lights low, avoiding fluorescents, keeping auditory stimulation at a minimum, avoiding large crowds, and making time for exercise or other physical activity. Also consider deep pressure if this is helpful for your child. This pressure can include hugs, squeezing large muscle groups, allowing your child to wrap him or herself in blankets, or wearing clothing that facilitates pressure on certain muscle groups.
 

Do not stop communicating

Encourage consistent communication in whatever way your children communicate best. Frequently ask how they are doing, talk about the loved one who died, draw pictures together and ask questions.

Do not discourage engagement in special interest areas

Individuals on the autism spectrum frequently have clear and defined special interest areas about which they know a great deal. They typically enjoy engaging in these areas, which provides a much-needed respite from difficult experiences, including grief. Encourage new ways of learning and experiencing the world through their special interests, or by forming new interests.

Do not stop the grief process

Encourage your children to mourn by publicly or privately expressing their grief in whatever ways are appropriate for their personality, interests and abilities. Help them find creative ways to remember and honor the person they loved. Make scrapbooks, build a snowman at the gravesite, create a shrine out of legos or develop a violin symphony. Do whatever feels right for your child and for you. Remember that these are ways to help make sense of a very difficult experience and to maintain a bond and relationship with the one who died.


Summary
Jumping cartoon

Grief is a chaotic and difficult time for all of us. It is a normal and natural response to the death of someone we love. Each person mourns and grieves through the lens of their own particular way of being in the world. While it is extremely important to provide structure, support and the freedom to grieve in individual ways, it is also vital to be aware of how individuals on the autism spectrum may experience grief. This understanding can be very helpful in moving your kids through such a difficult time.
 


More expert advice about Kids with Autism Spectrum Disorders (ASD)

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Karla Helbert, LPC

Karla Helbert is a licensed professional counselor (LPC) and owns a private psychotherapy practice in Richmond, Virginia. She specializes in grief and bereavement, anxiety disorders and in providing therapy for people on the autism spectrum. Ka...

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