A few weeks ago, a friend confided in me that her preschool-aged daughter was diagnosed with autism. Since she knows my teenage son has autism, she reached out to me for advice.

She recounted all the research she had done and the plans she was making to help her daughter. In telling me her story, she briefly and guiltily admitted feeling sad, devastated even, about the diagnosis. She was disappointed in herself for missing the signs and worried for her child’s future. Although she mostly spoke of her research and her plan, what I heard loud and clear were the feelings she glossed over.

She asked me, “Where do I start? What’s should I do first?”

I told her to start with her feelings.

If you recently received an autism diagnosis for your child, that’s what I’m telling you, too. Start with your feelings. Let yourself feel sad, apprehensive, worried, or disappointed.

It’s OK to grieve the autism diagnosis. It doesn’t make you a bad parent. It doesn’t mean you don’t love your child. It doesn’t mean you don’t accept your child.

What it does mean is you are normal. You are feeling things almost all autism parents I know felt when they received an autism diagnosis. Your path has shifted. You have been thrown into a world you never thought you would be a part of.

I, too, grieved when my son was diagnosed at age six. I was frustrated with myself for missing the signs, worried we found out too late to implement real help, concerned that he would be teased, scared he’d have trouble making friends, anxious about what friends and family would say, wondered how and when I would tell him about his diagnosis, and uncertain what this diagnosis would mean for his future.

I felt guilty about feeling these things so in an effort to avoid them, I threw myself into learning everything I could about autism. I sat with clenched jaw night after night in front of the computer absorbing studies, reading about therapies, researching the laws protecting special needs children.

But avoiding these uncomfortable feelings didn’t make them go away.

My son started therapies and our world went on, pretty much the same as it was before, only now with an amazing team of people to help my son. At this point, I finally had time to sit in those feelings. I let them wash over me. I felt all the emotions seep in: disappointment, guilt, worry, sadness, overwhelm. They filled me from head to toe, then one by one, found their way out.

See, that’s the thing. These initial feelings leave. They are replaced with acceptance.

My son is the same person he was before he received this diagnosis. A word on a piece of paper does not change who he is. It only helps me understand his brain. I no longer feared the word autism. I let go of my fairy tale plans for my son’s future and began to see a real future for him, a future that allows him to be who he was always meant to be.     

Making peace with your feelings on your child’s diagnosis makes all the next steps easier. It’s easier to read all the books and websites about autism when you are not pushing against the word, easier to meet with teachers and therapists to come up with a plan when you aren’t trying to make your child into something that he is not, easier to focus on all your child’s strengths because you aren’t only focusing on his weaknesses, easier to tackle this new world step by step when you are no longer forecasting a dim future.  

This probably isn’t the life you expected for your child. Allow yourself to take time to let go of your original expectations so that you can see a new future for your child. Give yourself permission to grieve so that you can find your way through to acceptance. Most importantly, know you are not alone in this process.  

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