Grieving the Unexpected

Losing someone close to you has to be one of the hardest tragedies we deal with in life. When receiving an autism diagnosis for your child, some parents will experience a different type of grief. While there’s nothing like losing your child, losing all hope of what you thought your child’s future would look like may leave you feeling helpless. 

Grief is one of the most common reported feelings amongst parents when asked what they felt after receiving their child’s autism diagnosis. I remember the day we left our daughter’s 18-month doctor’s appointment. When they had concerns about her development, we were worried. Worried of what this meant for our daughter if she was to be diagnosed. You can’t help but think about all the dreams you had for your child and their future. 

The dance recitals, ballet lessons, cheerleading, watching her get married, and possibly even having her own baby one day. All of that seems impossible now. Will she live with us forever? Will she ever be able to communicate? Will she even get married? Will she be able to work a job? Will we be going to therapy forever? What does this look like now? I admit that there are still moments to this day when I think about the dreams we had for her. I cry at night because of how different our life is. It sometimes takes every bit of me to pull myself out of it. Then I think to myself, “We can’t just sit here and continue to dwell on what we thought her life was going to be like. We have to keep moving forward and work at giving her the best life possible; whatever that might look like.” If there’s anything I learned when dealing with grief during an autism diagnosis, it is that you never know what your child’s future will bring. Whether there is autism involved or not—Anything is possible! Keep your head high and stay focused on the present, because your child’s future depends on it. 

What do you do when you are experiencing grief after receiving that diagnosis? Remember to give yourself time to take it all in. It’s ok to cry. It’s ok to be angry. It’s ok to feel whatever you are feeling in that moment. In fact, there are said to be 5 stages of grief,  as stated in this blog from Stages of Acceptance of Your Child’s Autism Diagnosis | ACES. I like how this blog gives a positive look on the stages of grief and instead they refer to it as “The 5 Stages of Acceptance.” These five stages are denial, anger, bargaining, depression, and acceptance. 

When it comes to my daughter’s diagnosis, I knew I couldn’t be in denial. I knew that she needed me more than ever. The sooner I could set aside any type of denial, the sooner I’d be able to give her the opportunity to succeed. While many parents might struggle with this stage of denial, this could be one of the first steps you might face. If you or your partner are struggling with denial, look for answers from the professionals to help you have clarity. More importantly, understand that this is one of the stages that you need to work through in order to work towards acceptance. 

Anger may be another stage you may face. During this phase be sure you are directing any anger you have away from your family. Find the healthiest ways to expel your anger and understand that it’s another stage in the process. 

Bargaining is something I learned about after my journey with autism. I can remember thinking to myself, “If my daughter learns to talk or develops certain skills, then she won’t be autistic.” I learned that this was a form of bargaining. When your child is diagnosed, autism is who they are. It doesn’t just “go away.” That alone can be a hard thing to swallow. Once you are able to understand that, you can understand how your child sees the world to better help them. 

Depression might be another challenge you face. No one can tell you to stop being depressed. This will be something you will work through on your own time. If you find that you are struggling with depression and all the self-care doesn’t seem to be helping, ASK FOR HELP. Therapy is a great way to work through this. 

Eventually you will come to acceptance. This alone will be a beautiful moment for you and your child. It’s just the beginning of this journey, and you will finally be able to see the light at the end of the tunnel. There will still be challenges, struggles, hard days, difficult choices, and bumps in the road, but you are on your way to helping your child live their best life. Never forget that during your journey.