Monday, October 26, 2015

I'm no longer using the word "Grief" when talking about Autism. Here's why.

Ever have a life event that kind of smacks you upside the head and makes you realize you were REALLY wrong about a certain way you viewed something?  Two months ago I attended a wake for a child.  I still think about that little girl and her family daily.  The experience taught me in a way I didn't expect about how I view autism.

I can no longer say I know grief.  I do not.  Not by a long shot.  I know I have written about finding out your child's autism is a grieving process.  I know I have read similar posts talking about mourning the child you thought you had only to discover autism "took the life you thought you had away".  No it didn't.  Not at all.  I know this because although my child is autistic, he is here. He is making a mess.  He is playing with toys. He is singing the flipping "Bird is the Word" song for the 739 time today.

He will need several prompts to finish chewing his food fully so he doesn't gag.  He will need reminding to not tease the dogs. He will be scared if he sees me so much as open the kitchen cabinet with the blender in it.
But he is here.  I can laugh and sing with him.  I can high five him passing in the hall.  I can sneak into his room at night after coming home from a funeral home and kiss the top of his head as he sleeps.

So yeah, life isn't what I had planned but no life is.  Seriously, the life you see others living.  The one you envy, even to them it's not what they expected.  Both good and bad.  Maybe what I feel at times is self pity, frustration or disappointment.   Perhaps a grand combination of all of the above.  For myself,  I know it is NOT grief.  I choose to not use that word anymore in regards to autism and accepting my child's diagnosis.  It's not a grieving process. It's an acceptance process.

It's an insult to compare it to losing a child.  One I won't do anymore.  Or "mourning" because he is still here.  Yes, it's more work on my plate than I ever expected or even wanted.  I am grateful for it because some parents do not have that luxury of complaining because they are actually lost and buried a child.  They are the ones that have the right to grieve, to mourn for a life they can no longer watch and help develop.

I am not saying this anymore.  I'm not asking or declaring you to do the same. All I am asking you to do is hear me out.  Is your child still here?  Then you currently have more riches in your life than others do.  I'm not telling you NOT to be sad or angry or frustrated with your situation.  It would be utter madness for me to even suggest it.  Hell, you don't even have to like it sometimes.  I just know what I felt when I hugged a mother recently who had been preparing herself to accept a lifetime of medical challenges for her daughter only to now greeting us at her child's wake at a funeral home.

I'm not declaring a right or wrong for anyone but me.  Maybe you'll agree or maybe you won't.  I just feel it's important to acknowledge when I was wrong and how I plan to change it.


  1. I relate directly to both things. Having lost a child in infancy, and now having a child with autism. You could not have said it better.

  2. I can understand the process of acceptance being thought of in terms of a grief of a kind ..... But I have seven children 3 are on the spectrum 2 u
    Are under assessment my grandson is also ASD ..... There is a time of self pity and why me? .... There's frustration beyond description .... But I have also lost children 4 to miscarriage .... 1 my beautiful Autistic 10 year old son ..... I would give anything to have him here to meltdown.... To struggle to sit still ... To blow up at his annoying siblings.... To hug me and squeeze so hard I can't breathe ... Just one more time even .... I appreciate your recognition that it doesn't compare the acceptance process to the grief journey thank you ... That took guts to say especially as you wrote a book about it under that specific label.

  3. Such a great perspective Thank you for introducing a new thought on this. I am with you.

  4. I understand this. My son has autism, and I think he's fabulous. I love how blunt he is. I wish I could be that way. Sure he struggles, but don't we all in some way?

  5. I both agree and disagree here. I think the word grief has come to mean the loss of a person when it used to also mean intense suffering. Sometimes due to a death and sometimes due to other factors. I allowed myself to grieve the life I had hoped for but I don't live with grief. I believe that's the difference. Yes you can say I'm being picky with my dictionary definitions of it but I honestly felt that way early on in the process. I don't see anything wrong with stating it. But I also don't feel I can say I live with grief. I grieved for a loss and moved on. That is not something one does after the loss of a person. I think it's one of those long winded personal opinion things that can go either way and I can't fully explain what I mean here. I fully appreciate your view and in some ways agree. Thank you for sharing.

  6. A wonderful lesson in being grateful.

  7. Well said and what a great reminder to everyone! We lost our middle son when he was only a few days old..a year and a half later we welcomed our youngest son into the the age of 3 1/2 we received the Autism diagnosis and while we processed what this meant...for him...for us...all the while we count our blessings...he is here...atllnd he has his guardian angel, his big brother is by his side every day...we can do this $

  8. Thanks for all the comments, and of course, the post... I use the word grief frequently to describe my feelings around my son’s autism; my last blog post, in fact, referred to the ongoing grief. My son is 23 now, and today, I am mostly mourning all that autism has cost him, all that he has lost. When he was quite young, a neighbor with Downs syndrome died abruptly, a friend of my daughter’s. I, too, attended a funeral and saw first-hand a mother's true grief. Months later I castigated myself for not handling my own “grief” better, compared to the parents who actually lost their child. My then-new husband noted that parents with a profoundly disabled child must grieve for “the child they had expected,” yet continue to deal on a daily, relentless basis with the enormous ramifications of the disability, the ongoing, grueling demands autism presents. That helped me forgive myself, and understand that there are many, many forms of grief. My attitudes have changed over the years, and I have sometimes felt ashamed that I couldn’t “accept” my son’s fate as easily as other parents seemed to do. Each of us has our own journey, and none of them are easy. The dreams I harbored for my son when he was a boy and teen have not materialized... he will never live independently, fall in love, pursue a career... And yes, I grieve these losses every day. Yet I have him with me... Thank you for this thoughtful post.