(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.
I recently read a great article about the difference between autistic mothers and neurotypical mothers that sheds some light on this. I never felt grief either, and probably because I”m autistic. No, not because of a lack of theory of mind and I don’t feel empathy, but because of the way I view my role as a parent. Here is the article. https://www.theguardian.com/lifeandstyle/2017/apr/15/women-autistic-mothers-undiagnosed-children?CMP=share_btn_fb&fbclid=IwAR2WXrY9VDeISNgSsKEhg6Fsb57EpUYuOC0S2xdGAFOurNxxdl86MqC8tH8
While I understand why you say its harmful to grieve and the message it can send, I’m not sure it’s fair to deny a neurotypical the right to grieve, as its part of their neurotype to do so, any more than you can expect an autistic parent to grieve.
katherine anderson recently posted…FNAF Animatronic Toy Plush Jump Scare | Guiding Autism Family Vlog
Thank you so much for sharing your thoughts, Katherine. That is an interesting perspective, that grieving is a part of their neurotype. There is such a fine line between allowing neurotypical parents to feel their authentic feelings in whatever way they may feel them while protecting the autistic community from the harm those feelings may cause. So glad you commented, you’ve given me a lot to think about!
There are many different types of grief. Grief is felt when a person encounters a loss. And there are many levels and forms of grief. We received our childs autism diagnosis at 17. At the same when other kids her age were hitting 17yo milestones like getting ready to graduate high school and move on to college or jobs or, just adult life. Our daughter is not ready for these milestones. She is not ready to get a job, a license, graduate from high school, or go to college. And she surely isn’t ready to be an adult. Will she be later in in life? We believe so, but don’t know when and if those will happen for her and therefore don’t know what her future will hold. Autism isn’t curable. We all agree on that. But it also isn’t a death sentence which is what it sounds like you are suggesting a parent is saying if they feel grief. So, whether others like it or not, parents do grieve the loss of the future they envisioned for their child when the diagnosis is received.
It’s not an insult to the autistic person. And it’s not just a NT response.
There are five stages of grief, denial, anger, bargaining, depression and acceptance. Please don’t diminish a parent because they may feel grief when given an ASD diagnosis or any diagnosis for that matter, and are not yet at the acceptance stage. Be thankful you didn’t go through it and be supportive and uplifting to those who do.
When I read about grief in any context one caveat is always that we all grieve in our own way. Our grandson is autistic but highly functional, very handsome, sweet, smart and funny. But he struggles with life nearly daily in ways that NT kids usually don’t, or at least not as often. He’s five and a half by the way.
I do grieve him but I’d never tell him that nor do I often even let it show in the mildest of ways. But this world of climate change will be an extreme challenge for all of us, let alone an autistic person unless their life turns out surprisingly well. We, the grandparents and his moms are doing all that we can to help and guide him. But that cannot mean that it’s wrong for me to grieve. Not because he’s not NT and I’m hurt, but because of the struggles and confusions that he faces and will face. Yes, it absolutely could be worse and I’m grateful for this wonderful child.
I absolutely agree with Mike. It’s not about grieving because of the autism, it’s about the pain of the prospect of any pain my son may experience as a result of his autism. He’s about to turn 18 and, although sweet, kind, hilarious and clever, he also experiences massive anxiety and confusion about the world around him. He is just so vulnerable and my grief is really a fear of how I protect him as I prepare to try and give him more independence and who ensures his safety when I am gone (I have to fight for services daily…services which are constantly under threat from budget cuts-so who fights for him when I’m no longer here?). I love him completely and unconditionally. My grief I guess is a fear and protectiveness. He was diagnosed 16 years ago and I am struggling very hard to come to terms with my grief-it seems as infinite as the amount I love him.
I’m sorry but I think this advice is harmful and lacks empathy for parents who feel alone in their grief. It’s liked you’ve linked grief directly to death and that’s just incorrect according to the definition.
I am a mom of an autistic boy who I love more than I realized was possible but I am not ashamed to admit our journey has brought me great sorrow. I have experienced a legitimate loss and it must be grieved.
I watched my little boy lose abilities, become less and less connected to me and others. Because he changed right in front of my face, in a way I feel like I did lose him. He lost communication skills and became labeled non-verbal, stopped going on the potty, and my happy boy became aggressive towards himself and others due to his inability to communicate any emotion. I’ve never felt a pain so deep. Why? Because of how deeply I love him, how I’ve watched him struggle and because my heart longs to know him more.
I am his biggest advocate. Because of my experience I’m currently working on launching a special needs ministry at my church to be more inclusive. Your writing makes it sound like grieving parents just give up on their children, but I’ve seen the opposite and I’m doing my best to allow God to redeem my pain.
Thank you, Andrea!! There is no doubt how much we love our kiddos but there is a grieving process. My biggest sorrow and where most of my grief comes from is what happens to my child after I am gone. Who will take care of him if he’s unable to take care of himself? Will people try to take advantage of him ? It’s an undeniable heart crushing grief for me.