Invisible Loss

The loss we experience as Autism Moms is an Invisible Loss.

Unseen and often unrecognized by others, but deeply felt by each one of us. 

I was reminded of this during a recent call with my son’s extended care team, when his clinician referred to me as a “grieving mother.”

The remark stopped me dead in my tracks.

Was I a grieving mother?

I had never really considered it.

I thought grief was for people whose children had been recently diagnosed and had not yet accepted that Autism was here to stay.

One thing led to another, and a couple of books, online articles and research papers later I was convinced of one thing:

The grief literature does not address the Invisible Loss experienced by parents of children with autism.

Our loss stands apart from death, divorce, mental illness, substance abuse and Alzheimer’s because we are not mourning a person who is no longer here, physically and/or emotionally.

We are grieving:

The loss of the child we expected/hoped to have.

The loss of the parenting experience we hoped to have.

The loss of relationships between and among ourselves, our child and friends, family, and the community.

All while loving our child unconditionally AND fighting like hell for their best possible outcome.

NO, the grief literature does not address these complexities.  

But, just because you can’t Google it, doesn’t mean it’s not real.  

The loss your feel when:

Your child can’t tell you what is wrong.

You need to leave a family event early because of sensory overwhelm.

Your neurotypical child wants nothing to do with their ASD sibling because he thinks she is mean.

You are listening to your friends talk about travel sports schedules, play dates and colleges applications.

This loss is as real as it gets.

And the fact that no one else can see it or is even aware of it, does not diminish it. 

It makes it more painful.

This is because loss without a name is often ignored and minimized, even by the people who are experiencing it.

So name it.  You can call it Invisible, Ambiguous, Lingering, Complex, Unique – whatever you like.  By doing this, you can begin to recognize and validate your own experience, even if no one is sending sympathy cards or casseroles. 

P.S. Check out the latest episode of the podcast HERE, where I dig deeper into the topic of Ambiguous Loss. 

P.P.S  Feeling like no one in your life understands the pain you are in?  I get it.  If you want to feel seen and heard in your experience of loss while learning how to find joy in your life, let’s talk. You can get started by booking a complimentary consultation call here for my 1:1 program. During the call, we will talk about what is standing in your way of enjoying your parenting experience and whether it makes sense for us to work together.