Are Autism and a Parent’s Grief Connected?

It’s not uncommon for parents of a child with autism to experience grief. An expert from ChildFirst Behavior Therapy offers suggestions for coping with this experience.

When parents learn their child has autism, they may experience feelings of loss, at least to some extent. Whether you immediately recognize the connection between your child’s autism and grief — or that reckoning takes months or years — it’s important to acknowledge and respect this process, says Board Certified Behavior Analyst Ashley Musial, M.Ed, owner of ChildFirst Behavior Therapy, an Applied Behavior Analysis (ABA) therapy provider in Arlington Heights.

As the mother of six boys, one with autism spectrum disorder, Musial has experienced these feelings of grief firsthand. In her work as a Licensed Behavior Analyst (LBA), she supports families in therapeutic ways to help children build communication and social skills and find success in their daily functioning. This blend of experiences makes Musial a formidable resource for families wrestling with autism and the grief that can arise.

Her overall message is you can overcome grief — or learn to sit with it — and still be a wonderful, effective and loving parent to your child with autism. Here, Musial shares a couple of inspirational ways to approach your grief.

Reframe it

“Parents tend to experience grief for who you thought your child was going to be,” Musial says. “It’s a loss and it’s important to allow yourself to grieve.”

When parents can eventually learn to reframe that grief, perhaps after a period of sitting with some very difficult feelings, they may be able to emerge to a wholly different perspective, she says.

“Parents can say to themselves that they thought their child was going to develop this certain way but that now it’s different. This can empower them to spend some time reformulating their thoughts and celebrating who their children are,” she says.

By recognizing who they are, you can redefine your expectations. “They’re still an amazing person who may or may not laugh at what you expect them to or when you expect them to,” Musial says. Her own son has given her a new appreciation for Metra trains, for instance, she says.

“Before I had my son, all I thought about Metra trains was that they would make me late for work or bring me into the city to shop at the Christmas market. But Metra trains brighten my son’s life and hook his imagination and make him very excited, so I learned to celebrate that excitement and recognize that my child does have the same emotions I have.”

Kids could love Metra trains and not be on the autism spectrum, Musial points out. This perspective is something that Musial talks about with the parents she serves. “Autism or not, these (passions) are differences we see across the spectrum of all children, not just children with autism,” she explains.

Still, it’s a common experience for parents of a child who doesn’t verbalize or interact with them to suffer deep grief, even feelings of guilt. “You might ask yourself what it means and what effect it has on his future and even if it is your fault. You ask yourself these questions and there is a period of grieving a loss of the child you expected to have,” she says.

While parents aren’t saying they don’t love their children, it’s healthy to give yourself space to have a range of emotions about your child. It’s possible for worry and optimism to coexist.

“I could be excited when he does new things and be sad that he is not doing more. I can feel both things. It doesn’t have to be one or the other,” Musial says.

But how can parents get to that point where they can sit with all the feelings they have? The experience is different for each parent, but Musial finds power in vocalizing her thoughts.

Speak it

There is value in learning how to talk about your feelings and experiences. By turning feelings into words, you can begin to process them.

“Language is so powerful,” she says. “When we can speak out loud about how we feel, we irrigate and flesh out our experiences.”

When Musial’s son was young, she knew no other parents with children on the autism spectrum and admits to feeling out of her element when she visited therapy centers with her son. She saw all that the children could do and achieve — and how everyone seemed to know what to do.

“Their kids were making progress and we had just started and I really wondered if we would get there, or if it would never happen,” she says, adding that it’s natural to compare.

“As parents, we are always comparing ourselves against others, for better or worse. Learn to use this inclination to step back and say, ‘this is where I find myself now.’ Put words to those feelings and let people around you help you flesh out your ideas,” Musial suggests. This may even help you learn to label your feelings — and recognize how difficult it is to raise a child, autism or not.

“It’s OK that it’s hard. It’s OK that things don’t always go the way I expect, but I can still make it work for me. That reflection is so important,” she says.

Speaking with a trusted individual who knows how to listen without offering solutions can help “irrigate your experiences” and cope with your grief, Musial says. “Find a confidante who can validate your thinking and feeling or start the habit of journaling. Go back to that journal and see if it helps you flesh out your feelings in time.”

Learn more about ChildFirst Behavior Therapy in Arlington Heights at childfirstbehaviortherapy.com.

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