Are You Struggling to Accept Your Child’s Autism Diagnosis? You Need to Read This
5. Read “Don’t Mourn for Us”
Written by Jim Sinclair in 1993, “Don’t Mourn for Us” is a fantastic resource to help grieving autism parents put their child’s diagnosis into perspective. Sinclair is a man with autism who originally presented this work as a speech in the 1993 International Conference on Autism in Toronto. He tells you that autism is an integral and pervasive part of your child, gives advice for reaching out and relating to your child, and further counsels you on how you can address the loss you’ve experienced through your child’s diagnosis. It’s not long, so I strongly recommend you read the whole thing if you’re ready for something that will open your eyes and challenge you in an amazing way.
It’s so full of great material that it’s hard to single out one fantastic quote. But here’s a section about autism parents I love:
“We need you. We need your help and your understanding. Your world is not very open to us, and we won’t make it without your strong support. Yes, there is tragedy that comes with autism: not because of what we are, but because of the things that happen to us. Be sad about that, if you want to be sad about something. Better than being sad about it, though, get mad about it–and then do something about it. The tragedy is not that we’re here, but that your world has no place for us to be.”
4. “Dream new dreams, rejoice in new goals”
I also love this piece of advice that comes from Dr. Cindy Ariel. As you grieve the diagnosis, you are grieving the child that you were expecting to have. You are letting go of the hopes and dreams and ideas you had for your little one. But that doesn’t have to be the end of the story; now you can dream up some new dreams—realistic dreams that your child will be more likely to achieve—and celebrate them when they do come and do happen. Cherish and relish those moments that will mean the world to you—the rare hugs, the bright smiles, any moments of meaningful eye contact, or hearing them utter their first words. This will help you focus on and appreciate the wonderful child that is in your life, rather than longing for the child that could have been.
3. Grieve away from your child
This one may go without saying, but it’s still an incredibly important reminder. Children do not have the capacity to reason things out like adults do; if they hear their name when their parents are fighting, they figure it’s their fault their parents are experiencing the discord in the first place. In the same way, it would be devastating for a child to learn that their parents are grieving over their autism diagnosis. It was not their choice to be on the spectrum, and they do not deserve to bear the burden of guilt over something they can’t control. So grieve—yes, please do—but don’t do it around your child.
2. Know that it’s okay if you go through cycles of grief
Everyone’s experience is a little different. Some don’t go through any sort of grieving process; others go through a grieving process yet quickly overcome it; and still others may cycle through periods of grief and acceptance throughout their child’s life. If the last one ends up pertaining to you, that’s okay. Remember: there’s nothing inherently wrong about how you feel. It’s about what you do with that feeling that counts. So if you do repeat the grief cycle sometime in the future, do the same thing: let yourself feel it, find support, and do what you need to do to overcome it.
1. Remember you are not alone
It’s worth repeating. You are not the first person to have gone through this grieving process, and you certainly won’t be the last. Remember that whenever the night feels dark and the tears feel like they will never stop.
You can do this.
You are strong.
You are a fantastic parent.
You are a wonderful person.
You will get through this.
