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.
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.
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.
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.
Want more help and advice? Grab my New Autism Diagnosis toolkit!
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