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Not all parents will experience disenfranchised grief following an autism diagnosis. And for those of us that do experience it, we don’t always talk about it. But I think we should. In fact, I would encourage you to talk about it. I would encourage you to acknowledge it. It’s there and it’s real. This is parental grief and the autism diagnosis. And there’s no shame in acknowledging that it happens. For me, it was part of dealing with the initial autism diagnosis.

Is It Normal to Feel Parental Grief Over Autism?

Honestly, I think this all depends on the individual. Some parents will experience grief and some won’t. And, for that matter, some of us will acknowledge it. Some of us won’t. For me, personally? Acknowledging that I was grieving over my daughter’s diagnosis was the first step. I felt, at the time, that I didn’t have the right to grieve. 

She was still alive, after all.

She hadn’t died.

She was still very much alive.

And healthy.

Just now, she had a diagnosis of autism. 

I’ve also learned, over time, that I shouldn’t have to feel guilty about how I feel. 

And I’ll also say this- you don’t have to understand why I felt grief. 

It may not make sense to you- and that’s okay.

So let’s address it.

Let’s talk about it.

Disenfranchised Grief and the Autism Diagnosis

For starters, let’s break down disenfranchised grief. 

The term was originally coined by Kenneth J. Doka, professor of Gerontology at the College of New Rochelle, and is described as:

Grief that cannot be openly expressed because the death or other loss cannot be publicly acknowledged.

In some instances, society doesn’t acknowledge the loss and in other cases, it’s unacceptable for you to be disappointed by the situation. You may fear judgement or backlash from others because you aren’t supposed to grieve this sort of thing.

I’ve seen the arguments from both sides in the community and it’s just as heated or as personal when it comes to person first or disability first language. And believe me, I’m one of those people who will more than likely use both in the same sentence. 

And while I can’t speak for all parents of autistic children, I can speak for myself.

After my daughter’s diagnosis, I grieved. It wasn’t her that I was grieving, but the loss of dreams. The loss of expectations and the loss of the future that I had planned in my head.

Looking back, obviously, I know it wasn’t the end. 

I also know now, and wish I could have told my younger self; hold on to the hope. Pick yourself up and move on. 

Yes, allow yourself the time to acknowledge the things that you are feeling. Don’t bottle those up. Deal with them as you need to deal with them, but then there comes a point that you move on.

Should I Feel Grief Over My Child’s Diagnosis?

Again, I can’t speak for all parents. Only for myself.

If you feel grief, acknowledge that you are grieving. 

Allow yourself to process these things. 

Allow yourself the time to heal.

Allow yourself to come to terms with the diagnosis. 

And then, move on.

And above all else? Remember that your child is still your child. With or without their autism diagnosis, they are still your child. That has not and will not ever change. 

Don’t judge another parent for their lack of grief.

Don’t tell another parent that they shouldn’t grieve. 

Don’t tell another parent that they should (or shouldn’t) be acting a certain way after their child’s diagnosis. 

We all process things on different levels and in different ways.

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Digital Product Creator at Kori at Home
Kori is a late diagnosed autistic/ADHD mom. She is currently located in Albany, NY where she is raising a neurodiverse family. Her older daughter is non-speaking autistic (and also has ADHD and Anxiety) and her youngest daughter is HSP/Gifted. A blogger, podcaster, writer, product creator, and coach; Kori shares autism family life- the highs, lows, messy, and real. Kori brings her own life experiences as an autistic woman combined with her adventures in momming to bring you the day-to-day of her life at home. Kori is on a mission to empower moms of autistic children to make informed parenting decisions with confidence and conviction.

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