After receiving an autism diagnosis for your child, you may experience many things. Some, for that matter, you may feel over and over again. Or long after the initial diagnosis.
But why do we, as parents, grieve their child’s autism diagnosis? For that matter, is grief an appropriate reaction? Honestly, that all depends on the individual. I’m not going to tell you that there’s a right way or a wrong way to react.
Because on one hand you have a diagnosis and that’s a great starting point. On the other hand, this newfound diagnosis brings about a whole new world that you may just be unprepared for.
What I felt after my daughter’s autism diagnosis was disenfranchised grief along with a whole heap of parental guilt.
I’m not going to go into great detail in terms of the stages, but instead relate each stage to my own personal experience. Mainly this deals with the five stages of grief following the diagnosis of autism.
The stages of grief are: Denial & Isolation, Anger, Depression, Bargaining, and Acceptance. I won’t necessarily be going in that order because there really is no set order as to how someone experiences the five stages. Likewise, there isn’t a set amount of time that someone experiences a stage.
From an autistic autism mom to you
The Autism Family Guide is your shortcut to autism parenting.
How do I know?
Because friend, the resources in this guide are lifechanging.
Create routines with ease, calming strategies at your fingertips, and more.
Stage One: Anger
This stage and depression hit me the hardest following my daughter’s initial diagnosis.
I was angry at myself, my daughter’s father, the diagnosing pediatrician, my ob/gyn, the world, God.. anyone and everyone that I could be angry at, I was angry with. I was looking for some sort of blame, some sort of outlet, and some sort of anything to get what I felt out of me. I would scream, and then I would cry, or I would punch pillows and then lay down.
I would write furiously in a journal and then tear out the page because I would look at what I wrote. I just needed something to get that anger out. I even took to exercising, though that was pretty fruitless considering my lack of proper diet. But, I’ll try to address that later.
I was also angry at the diagnosis.
I know that might seem difficult to comprehend, but I was. I was so angry at the word, autism. I didn’t want to hear it, see it, say it, or have anything to do with it. For a while, even hearing the word filled me with loathing and hate.
I hated the word because it changed my life and because of what it was doing to my daughter. I realize, of course, that it’s just a word. But it’s word that carries so much impact and weight behind it.
The only person that I was never angry at, was my daughter. I couldn’t be because she was innocent, only a child that hadn’t even reached three years of age. How could I possibly be angry at her? Simply put, I couldn’t.
But I could be angry at myself, her father, and God.
And I was.
I’m usually a pretty even-tempered, down to earth, kind of person. But, when my temper starts to flare, my anger can get very ugly. I don’t like that side of me, but I’ve also come to accept it. It’s part of who I am and though I can’t get rid of that, I can definitely control it.
And I’m getting better, much better actually. I’m not quite as angry with autism as I used to be. I’m angry at the lack of acceptance and resources available. But that’s about it these days.
Stage Two: Denial and Isolation
Having a child with special needs, especially after receiving the first diagnosis might send you reeling.
I know it did for me.
It was in 2003 that my daughter received her official diagnosis. Though we had suspected that there was something wrong with her, our suspicions were confirmed with the three word diagnosis from her developmental pediatrician: autism spectrum disorder.
Those three words changed my life forever and sent my head spinning.
I already felt isolated enough, being a stay at home mom, but now being a mom of a child with autism? I couldn’t quite wrap my head around it. And while I knew I had support systems, at that very moment I never felt more alone in the world. It was just me, my daughter, and her father.
Us against the world, so to speak, but I felt more responsibility for her. I can’t exactly explain why, maybe it’s just that mother bear instinct rising, but that’s how I felt. She was home with me, after all, why couldn’t I have noticed something sooner?
Generally speaking, I’m able to accept things that happen in life.
Yes, I do have selective denial issues, but for the most part I try not to do that because it makes dealing with the issue that much harder.
I think, this is one of the stages that I skipped or at least went through mildly. Accepting her diagnosis, though incredibly difficult, was something that I was able to arrive to quickly. Or at least quicker than others.
From then on, where it concerned my daughter and milestones, I became a pessimistic realist. No longer was the world sunshine and flowers, but black and white. I had crashed off of my rainbow and I was firmly in the lap of reality. And it sucked. Never knowing if my daughter would talk, if I would ever hear her say ‘mom’ or ‘I love you’ and all of the uncertainty that surrounded her future.
I embraced this reality head on because it was what I needed to do. If I had gone into denial, I don’t think I would have been doing myself or my family any favors.
Stage Three: Bargaining
Through my anger and my guilt (another post entirely that also needs to be addressed) and in the midst of depression (the next stage); I asked God a lot of questions.
Well, now that I look back on it, they were more like demands.
But, in the middle of those demands and questions, I would make trades. Of course, I knew that those trades were impossible to complete but that didn’t stop me from making them.
I would suffer anything that God felt necessary if my daughter could only be like every other child her age. I just wanted her to have the best possible future that the world had to offer and I felt that, with her diagnosis being what it was, her future was bleak.
But if God would take that away from her, I would do anything that He asked. I knew then that my efforts were fruitless, but that didn’t stop me from making them anyway.
From an autistic autism mom to you
The Autism Family Guide is your shortcut to autism parenting.
How do I know?
Because friend, the resources in this guide are lifechanging.
Create routines with ease, calming strategies at your fingertips, and more.
Stage Four: Depression
This stage definitely hit me the hardest.
Though, it’s also because I’m susceptible to depression having been diagnosed with clinical depression when I was younger. Still, to that point in my life, I had managed to cope and deal with my symptoms as needed in order to function in society and as a mother.
However, after receiving my daughter’s diagnosis, I spiraled right back down. Inside I was a mess, though outside I tried to maintain some semblance of strength. Most days, I think I was coping well.
And some days, I wasn’t.
I didn’t want to leave the house, deal with people, or eat. I survived on coffee and cigarettes most days because I was battling my appetite. More often than not, I would pick at a meal, but I wouldn’t finish it or I’d leave it for later.
I also cried a lot. Most of the time I’d cry by myself, or I would cry with my daughter in my lap. She would play with my hair and I would kiss her cheek or cry into her hair.
Some days, I wonder how I made it through. I wasn’t suicidal, nor did I ever lose the desire to live. I still had someone to live for, after all. My daughter needed me. She kept me going during my darkest days, even though it was because of her diagnosis that I had hit rock bottom.
Looking back, I can say that I survived and I fought through it. Some days I don’t know how I did it, but I’m glad I did.
Stage Five: Acceptance
Between myself and her father, I accepted B’s diagnosis easier.
I say this with full confidence, though I will also say that it did take me some time. Looking back on it now, I could accept what she was but I couldn’t accept who she would become.
That part, after all, was still uncertain as we didn’t know the severity of her autism and how worse it could get.
There were aspects that I came to terms with, such as the possibility of her never speaking again. That was a very bitter pill to swallow, but the sooner I accepted that the better. I still hold to that feeling, and if she does defy the odds and talk; I’ll rejoice in that.
But, if she doesn’t, that doesn’t mean I’m going to love her any less.
And I think that was the key, not just acceptance as a whole, but acceptance of parts of her diagnosis before I could accept everything. And, I’ll be the first to admit, I couldn’t accept everything at first. I was far too overwhelmed. I loved her, do love her, unconditionally.
And I wouldn’t change her for anything. She’s my daughter. She’ll always be my daughter. It just so happened that after we got her diagnosis, she came with a few new labels to explain her habits, quirks, and traits. I’m okay with that, not because I have to be and not because I want to be, but because I just am.
Granted, once her younger sister arrived, I almost started this whole process over again and there are still days that I struggle with guilt. But I’m doing my best to break free from that as well.
I was going to try and gather helpful links and resources, but the best advice that I can possibly offer is to generate a strong support network if you don’t have one already. This could include family members, religious organizations, internet groups, etc.
Even though I may have avoided other parents with autistic children in the past, now I seek them out- because they understand.
They understand in a way that no one else can. And when you’re just receiving this diagnosis or have been on this road for awhile, having that support and understanding is crucial. I’m fortunate enough to have a strong support network, and that keeps me from relapsing to depression.
Though I still struggle with guilt, again another post that I feel needs to be addressed, I have my depression under control.
Navigating this new world, especially at the beginning, is overwhelming and it seems never ending.
While yes, it is never ending because autism is a lifelong disability, it will only be as overwhelming as you let it become.
I’m not saying this to placate, I say this because it applied to me. But, it does get better. Some days, it may not seem like it and some days, yes- there will be setbacks. But take that in stride. The good and the bad, the ugly and the beautiful; take it all in stride.
Celebrate the joyful moments but don’t let the difficult ones bring you all the way down.
Autism and grief is about allowing yourself the time to grieve and acknowledging that it is okay to grieve. Your child is still your child and of course you love them without question.
But that doesn’t mean you should marginalize your own emotions and feelings.
And while it may not seem like it, this is also a good time to work on some coping skills so you aren’t overwhelmed by your feelings.
This post was featured at the Manic Mondays Blog Hop
Kori
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This is such a great post. Neither of my kids have been diagnosed and this makes it a bit easier to understand what parents go through when they get the diagnosis 🙂
🙂 It can be hard to explain to moms/parents who don’t have a kid with special needs. There’s a future post related to this one that I’m trying to get together.
It’s hard to see our children suffer. I think these stages can be said for many other diagnosis and hardships.
what a good post I’ve been very lucky and thankful my son is healthy with no major problems. I can’t even my heart goes out to those parents who have special need children you guys are my heros.
Thank you. Having children with special needs helps me keep everything in perspective. Because, even when I think it might be bad, it could be so much worse.
Thank you for sharing. Although I don’t know anyone with kids that suffer from Autism, you have most certainly made me more knowledgeable of what parents go through when they get the diagnosis.
This is a very informative post for parents who have autistic children, I think it would really help someone cope and understand that they are not alone in their feelings. My middle boy was diagnosed with perceptual motor difficulty and it basically effects everything he does, its hard because we as parents feel for our child and we feel guilty for their health. What really helped us was reading Gut and Psychology Syndrome, thanks for sharing this blog post.
Thanks for sharing this post. I know it’s hard for parent with autistic children but I think this is a helpful post to let them know that what they are feeling is perfectly normal and there are a lot of other people going through the same things.
What a brave and important post. I know you will help so many parents by sharing this.
As a parent we only want the best for our kids. I can’t imagine how you must have felt in those first few moments of learning that your baby has autism.
My mind was going in so many directions. But, at the end of the day, she’s still my child and I only want to do what’s best for her.
A dear friend of mine was just told that her son is on the Autism Spectrum. It is a lot to take in as a parent and this is some great information for learning to cope.
Yeah, I wish I had something similar.. or that I had reached out to other parents when my daughter got her diagnosis.
I have a friend that his daughter was diagnosed with down syndrome, I loved the day he came in after getting the results and when asked how it went his response “my heart grew and I love her even more, I did not think that was possible”. I can remember their struggles in the beginning though and learning to parent in a whole new way.
Oh that is absolutely lovely. It took me a little while and I wouldn’t change her for anything. She’s taught me so much.
Luckily I have not had to experience this but Im sure its very hard to deal with
It is.. though I remind myself that it could always be worse.
What a beautiful post. Thanks for sharing all that with us. My little nephew was diagnosed with severe autism, and he is the same age as one of our little guys. This helps me to know more about what the parents went through, though they didn’t talk much about it. Strength to you and your family as you continue this journey!!
Thank you. I didn’t want to talk about it much either, it made it more real.. if that makes any sense? Though now I’m more willing to talk about it, especially the early years/first few years after her diagnosis.
Although I do not have a child with Autism, I do have friends and family that do. I have seen these stages, not only related to autism, but in many different situations. This is great information for those dealing with similar situations to know they are not alone.
Wow! This is such a good article. I can’t imagine how I would handle such a diagnosis. Thank you for sharing such words of wisdom!
🙂 Thank you. I took a class on disenfranchised grief when I was completing my associates degree, so that helped with writing this.
My nephew has autism and my brother and SIL went through all of these. He is 19 now just graduated high school, has a good job and is going to college. It can be done. Kudos to you for finding the answers you need. I can’t imagine the pain.
That’s awesome, congratulations to him!
Your post relates honestly what so many parents feel. As someone who has had the pleasure of watching my clients with autism grow I can honestly say that their future can be bright and the journey full of wonder and joy. One of my “kids” wrote a book How to be Human about her journey through autism. She spent the summer chilling with her friends and preparing her college applications. Any parent would wish for a daughter like her.
That is a wonderful story and I’m so happy for her 🙂 And yes, I’ve watched my daughter grow so much since her diagnosis. Part of her future is still uncertain, but it’s been amazing to watch her over the years.
Wow. The power in this post has left me speechless. I just wanted to give you a hug through your whole post. Thank you for sharing this and giving a real view of parenting a child with autism. I never fully thought or understood what parents of autistic children go through after the diagnosis. Thank you.
Thank you 🙂 Each parent experiences it differently, but I at least wanted to share my story.
Beautiful post. Thank you!!
🙂 Thank you!
I shared this post everywhere. Thank you for this post – it’s so powerful and so important to share this message! My daughter was diagnosed with PDD-NOS 6 years ago and I struggled with so many things – emotions being top of the list!
Thank you for the shares, I do appreciate it. And yes, it’s hard to explain and/or put into words what we go through after a diagnosis like that.
What a great post to share! I’m sure some people think that they don’t have the right to grieve when something like this happens, but they do, and it’s great to see someone putting it out there for them, I’m sure this post will reach someone in need and really help them cope!
Yes, absolutely.. I think the term is disenfranchised grief so it’s not readily/easily accepted by society.
YOu are obviously not “just another mom” – you are a very special mom, because with this article, you have definitely touched some hearts and helped people out in a life-saving way.
Thank you so much, that means a lot to me.
Thank you for sharing this very personal experience. I will pass it along.
this is so very powerful and helpful!
I hope all parents of children with disabilities get to the acceptance part fast so you can focus on the bright future of the kids!
Yes, I admit- some aspects took me longer than others but with acceptance you can move forward. And I think that’s what really helped me.
Thank you so much for sharing this. This was such an open and honest post. My son is not Autistic, but has been a little slower than others in some areas of development. I do have friends with autistic children and I know that it isn’t always easy. Thanks for sharing.
Thank you 🙂 I think being able to share our story has also been helpful with dealing with my daughter’s autism in the long term. Plus, being able to talk about it and hoping that it helps, also helps me.
It’s not, but it could always be worse and I recognize this daily. And yes, as with anything, one day at a time.
As a respite worker, I saw many families go through these stages. Thank you for helping others realize it is okay to feel all these emotions.
And thank you for all of the help that you have provided to families.
I think it’s important to recognize these emotions. I don’t have any autistic children, but I have a friend who has four children all of whom are autistic. She has a very healthy attitude. She is proactive and honestly one of my biggest inspirations to be a better mom.
Loved your post!
Thank you 🙂
And yes, it’s definitely important to recognize what you’re going through and acknowledge that it’s happening.
Thanks for this great information. We have a family friend who has a son with autism and he is an incredibly special kid but can be difficult to deal with at times. xoxo
Yeah, it’s not always easy but they are worth it 🙂
What a revealing, honest post! I could picture the anger you felt at the diagnosis when I was reading this particular section, and I think sharing your experiences will help people going through the same thing how to better cope, or at least know that they are not alone in the many different emotions and phases they are going through.
Thanks for sharing these feelings. I can only hope that these parents are able to find peace!
I would have not realized it was so many stages.. but i can see how they all fit in together.. very nice post and a lesson to be learned.
I applaud you for having the courage to write this. I’m sure many people reading it can relate to the many emotions you felt over your daughter’s diagnosis.
Thank you. It is my hope that this can touch at least one person.
I’ve seen people struggle when it comes to autism, It doesn’t look easy to deal with.
Wow what an amazing post, I can’t imagine what it must be life having to go through all of that. x
It can definitely be overwhelming, very overwhelming but it’s also a matter of coping and handling the stress. And then taking it all day by day.
I have a close friend who’s Son is Autistic, I will be passing this along to her. Thank you!
Thank you 🙂 I hope that it can be of some use.
This is such a deep post! Thank you for sharing your heart. I definitely think you grieve to a certain extent for any illness, but especially when it’s one like autism and it’s your child.
Yeah, any life changing event can trigger grief- whether we realize it or not.
There is a lot of issues to handle with any child but even more so when your child has a disability. I am glad to hear that it gets a bit easier as time goes on and that there are networks out there to help parents cope and find solutions to specific problems.
Yes, absolutely. It just takes time, like all things tend to.
This is great info for any parent to know, thanks for sharing this
🙂 If it can touch or help at least one person, then I feel even more accomplished.
Amazing post. I’ve never dealt with autism or really known anyone who has, but this is amazing.
Thank you. This topic is near and dear to me, and this post was something of importance.
From the very start of this post, you had me completely taken with your every word. What a beautifully candid, insightful, inspirational process you went through. I can only imagine what you went through and continue to go through, but found this to be relatable at the same time. What a gift you’ve given any parent struggling with a diagnosis in writing this. God bless, and thank you for this!
Thank you for your kind words. It is my hope and prayer that this post can be of use to a parent.
Very nice. This can be said for parents with any special needs child. Thanks for putting it into words.
I think this should be required reading for anyone who knows someone touched by autism. How appropriate that they are the same stages of grief one goes through when mourning a loved one. These parents are mourning the *idea* of the child they were expecting and they get so much less support and understanding than a parent who physically loses a child.
The term, I think, is disenfranchised grief so it’s not easily recognized by society. But it is very real and learning how to support or at least be there for a parent is a huge thing.
Wow, yeah I can see where you would go through those different stages. So hard.
People can go through the Elizabeth Kubbler Ross stages of grief when there has been a major life change. I think it’s healthy. I went through major grief after my daughter was severely brain damaged after being shaken & slammed. On top of that, I ended up having PTSD.
Lots of hugs. I think this can definitely be appropriate for anybody- losing a limb, an autism diagnosis, being raped, etc.
This open dialogue is gonna help someone in in their Autism journey.
That is is my hope, that it can help at least one person.
Thank you for sharing this. I am going to pass this along to some co-workers if you don’t mind.
Beautiful piece from an educator of kids with all kinds of needs, and sister of an autistic adult! Shared this on my FB page, because I think it’s honest, and beautifully written. (https://www.facebook.com/thatsmashedup)
Thank you, that means a lot to me! And thank you for being an educator, the world would be bleak without you!
I think it’s actually a good thing that parents go through the stages of grief. You don’t want to be stuck at anger forever. Acceptance is something that’ll help both parents & child alike!
Yes, absolutely. It’s not good for anyone if someone gets stuck.
Thank you for sharing this. I have a friend and a cousin who both have children with autism. This helps me better understand what they are going through.
I’m glad that it could be of some use 🙂
Great post. Dealing with disabilities is hard on everyone. It takes a lot of strength.
Yes. Strength and patience