(Grief is a heavy word, but it’s thrown around autism groups constantly. It lead this autistic mom to ask, why do parents grieve their autistic children?)
Grief. Noun. “Deep sorrow, especially that caused by someone’s death.”
It’s a big word. And a heavy topic.
Most of us have dealt with grief at some point in our lives. Typically after the loss of a loved one.
And with my understanding of grief, it took me by surprise when I started seeing the word grief in post after post in autism groups.
And beyond the posts by parents in groups, there are dozens of blog posts and even books all about “grieving” your autistic child.
These aren’t about grieving your autistic child that’s died, but about grieving the very fact that your (healthy and very much alive) child is autistic.
As an autistic person and the parent of an autistic child, it got me wondering… Why do parents “grieve” their autistic children?
(Image description: Sad woman sits on a bench in front of a taupe wall with her face in her hands. White Autistic Mama infinity logo in the top right corner. Teal and coral text reads: “Why do parents ‘grieve’ autistic children?”)
Why Do Parents “Grieve” Their Autistic Children?
Before I jump too far into this post, let me make something very clear: I understand that an autism diagnosis for your child comes with a LOT of big feelings.
The doctors can fill you with paralyzing fear telling you what your child “might never do”.
You might feel dread about telling friends and family and trying to explain to them what autism is.
You might feel guilt and wonder if you caused your child’s autism. (Spoiler alert: you didn’t)
You might even feel a bit relieved because finally someone is giving you some real answers.
And let me tell you, all of those feelings are totally valid, and I respect each and every one of them.
But there’s a major difference between feeling sad or scared and feeling grief.
So through this post I’m going to unpack a few reasons that I feel that normalizing “grief” over living and healthy autistic children is actually harmful.
#1 Autistic Children Are Not Dead
The first and most obvious reason that grieving autistic children doesn’t make sense is that autistic children are not dead.
There’s no other non-autistic version of your child that was killed.
And when you “grieve” your living autistic child, you are perpetuating the idea that your “normal” child died when you got your child’s autism diagnosis.
Not to mention, imagine how hurtful it must be for parents grieving children they’ve lost to hear parents of healthy autistic children comparing it to a child who’s no longer living.
#2 Autistic Children Are Not Broken
Okay, so you agree that your autistic child is not dead, but you still feel like there’s something “wrong”.
Some parents say things like “autism stole my child”, but that looks at autism in entirely the wrong way.
See, people think that an autistic child is a broken version of a typical child.
Like our brains would have been typical, then something went wrong and now we’re autistic.
The fact is, autistic children are born autistic.
Our brains aren’t broken versions of typical brains.
We aren’t broken version of typical people.
There’s no need to grieve the non-autistic version of your child that’s “lost” because there is no non-autistic version of your child.
#3 No Child is “The Child You Expected”
Another reason I hear parents of autistic children grieving is that this “isn’t the child they expected”.
And this is the first thing I could kind of understand and relate to.
Most people don’t become parents thinking they’ll have an autistic child.
In fact, parents spend months reading tons of parenting books and may never give autism a thought until their toddler is showing some signs of autism.
And while parenting an autistic child isn’t worse than parenting a neurotypical child, I can totally acknowledge that it’s different.
I personally don’t handle well when things are different than I expect, so I can understand the struggle, but I wouldn’t classify this as grieving.
Disorienting? Sure. Overwhelming? You bet! But grieving? That just doesn’t apply here.
And the fact is, no child is the child you expected.
You might expect a boy but have a girl. You might expect a nerdy child and get a football player. You might expect a doctor and get an artist.
We really have no control over what child we have, and all we can do is acknowledge that our expectations are our own problem, and there’s nothing wrong if our children don’t meet those expectations.
#4 My Husband Shouldn’t “Grieve” Me
Whenever I talk about how we talk about our autistic children, I have parents who don’t quite understand why it’s such a big deal.
So I always try to put it in a new context that’s easier to understand.
In my case, I learned I was autistic as an adult after I was already a married mom.
Can you imagine if my husband learned that I was autistic and then told everyone he needed time to “grieve” the wife he thought he’d have?
I can tell you right now, if my husband says he’s “grieving” me for any reason outside of my death? He’ll hear more than an earful from me, and from pretty much anyone who loves me.
It would just be disrespectful for him to go on about grieving how I wasn’t the wife he planned for or wanted.
And let’s be clear: I am sure there are MANY things about me that weren’t what my husband planned for or wanted, but for him to publicly “grieve” those things would be asinine.
#5 “Grieving” Your Autistic Child is Harmful to Autistics Everywhere
The bottom line is that grieving your autistic child is harmful to autistics everywhere.
First, imagine being autistic and constantly seeing parents talking about how they’re grieving that their child is like you.
It’s exhausting as an autistic person to hear the message over and over again that parents lives would be better if their child weren’t autistic.
But beyond that, when you say that you’re “grieving”, you tell people that an autism diagnosis is something to grieve.
You’re unintentionally equating autism with death, and that false equivalency can cause a lot of harm.
People who think that autism is as bad as death search for “cures” that can lead to their autistic children being hurt.
People who think that autism is as bad as death sympathize with caregivers who kill their autistic children.
People who think that autism is as bad as death don’t support inclusion or acceptance in their schools or work places.
It’s just not helpful for anyone to have this doom and gloom view of autism.
Now, if you’ve been feeling like you are grieving your autistic child, and you aren’t sure how to get through that feeling and see the positives that come with an autism diagnosis, here’s a few resources for you to check out.
First, here’s 25 awesome things about autism.
Then check out my book, Embracing Autism: The Keys to Understanding, Accepting, and Embracing Autism.
Embracing Autism is your go-to guide for understanding your autistic child, and becoming the autism advocate they need.
Getting an autism diagnosis for your child can be life-changing, but it doesn’t have to be life-ending… With Embracing Autism, you can discover a new way of thinking about autism as you’re guided step by step through your journey from an autism-parent to a true autism advocate.