The 5 Stages of Diagnosis

 I don’t suffer from depression. I tend to think of myself as a generally happy person overall. A glass half-full, things always work out the way they are supposed to sort of person. Don’t get me wrong, I stress plenty, even over the little things, but that doesn’t seem to affect my state of content as a whole. Then, I went through something I had never planned on in my life; finding out my son had autism. I’m not going to lie, getting my son’s formal autism diagnosis was hard for me, full 5 stages of grief kind of hard. I went through them all and to be honest, I still find myself from time to time going back from the state of acceptance to depression. I think there is a possibility I will float somewhere between those two for the remainder of time.

Don’t get me wrong, I knew he was likely on the spectrum even before he was officially diagnosed. But the diagnosis gave it a sort of an absoluteness that was hard to swallow. I guess somewhere deep down I was just clinging to a bit of hope that we would go to the appointment, they would evaluate him, and tell me that my worries were no big deal. Tell me that the stuff that we were concerned about now was just a phase and he would grow out of it and go on to live a normal life or something to that effect. But reality set in as I heard the words coming straight out of the psychologist’s mouth.

I have talked to other people in similar situations (pre-diagnosis or very shortly after being diagnosed) and I find some in the same state that I was in, while when I ask others they seem at ease. The at ease parents state something to the effect of “Oh, it doesn’t matter if he gets diagnosed, we will love him all the same regardless”. The phrase often reminds me of parents that are about to have a child and everyone is asking them what they want the sex to be, to which their response is “just a healthy baby”. Almost as if they think the person asking will think less of them for saying something different or will assume somehow, they love their child less if it is not the gender they were originally hoping for. Of course, I assume you will love your child regardless, but to insinuate that knowing that they are autistic doesn’t matter is a hard statement for me to take at face value.

I contemplate the state of a person that does not have a hard time with this. I assume that they are likely just saying that because they just don’t want to be open about their real feelings, maybe they are in denial still themselves, or maybe they just don’t grasp the weight of what something like that means. Then again, maybe they think that I am crazy for feeling the way I do as well. I mean, I have this beautiful, loving, happy child that just happens to be autistic. It’s not like I have lost a child, why would I be so sad. And they’re right, I have not lost a child, but that doesn’t mean I didn’t lose something.

When you have a child, you not only dream of your life anymore, but you dream of the life you wish them to have as well. I always pictured a happy life for my child. The hopes that they would find a career they enjoyed, someone that they would love and marry, the kids they would have and so on. I’m not saying that children on the spectrum can’t have some of this, or all of this. But I am a realist at heart and probably have a unique perspective as I have grown up my whole life with an older, very high functioning, autistic brother who himself was not able to reach those goals. I know the general stats, and I know that the odds of most of those things are not in his favor. Times are better than they used to be, and I will do everything I can to help him get off to the best start, but the road ahead for either of us will never be as easy as I pictured and even trying our hardest, he may never get to the place I have dreamed for him to be.  

“and even trying our hardest, he may never get to the place I have dreamed for him to be”

I am grateful every day for this wonderful child that God has blessed me with. And I hope by the sadness I describe above you don’t think otherwise. My Damion is a wonderful boy, caring and smart and funny with a smile that lights up a room, and I can’t imagine my life without him. I know to some it may seem counterintuitive to say that I am grateful and sad all at the same time but after living through it I know it isn’t. I know because I feel that way all the time. And maybe I am wrong about those other parents. Maybe they have just reached a level of acceptance that I will never have. But for those parents that feel the same way I do; I just want you to know that it is ok to be sad. I know it doesn’t mean that you love your sweet child any less. For now, I will dream for the smaller things for him that I hope to be in reach. I dream of the day that I can have a real conversation with him. The day when he can tell me his favorite thing and I don’t have to just guess. I know I will still find great happiness in those milestones as well, the ones that I never thought we’d have to work so hard for. My life will continue on in this limbo state between happy and sad, as I thank god every day for this wonderful boy, and still deep down, mourn the loss of the life I had dreamed for him that he may never get to have.