Apr 2, 2011

Autism and grief after diagnosis

 As part of world autism awareness day.

I’m here today to talk about something personal I rarely share my experience of and that is the grief that came along with a diagnosis of autism for my son. I do talk about autism and my son very openly but there is a certain amount of unwarranted shame associated with grieving the loss of a child who is still living and physically healthy. 

I was a single parent back then, although I did have the support of a close family. The process of assessment took a long time — over two years, and those were years that I lived with the sliver of hope that my instincts were wrong. You see, when my son was born and even before that, I imagined what his life would be. I imagined all his firsts, words, hugs, day at school, girlfriend. I worried about the first time he would drink and what college he would choose. I pictured him having a family of his own one day and bringing my grandchildren to visit me. 

The first day I heard the words “official diagnosis of autism” that was all wiped out. For all intents and purposes the child I imagined was taken from me and replaced with this other little person who I didn’t know at all. A child whose future was so uncertain that there was no guarantee he would reach any of the normal milestones or live independently.

I was quite literally devastated, partly for myself but mostly for him as I wondered if there was something I did that caused this to happen. A close friend warned me I should pray, because it was a punishment for something I did. I couldn’t and still can’t grasp this mentality, why would anyone believe autism is a punishment? Others I knew treated the news as if he had caught the flu and would get over it. I cried to my friends because I wondered how anyone could ever love this little boy who was so alien to me when I struggled to love him and yet the idea of no-one loving him broke my heart further. I didn’t realize at the time that it wasn’t as simple as that.

He was a doppelganger, a changeling who had replaced the son I had spent 4 years raising. I made deals with God. I offered my life in exchange him being ‘normal’ and was bitterly jealous of my brother’s daughter who was born a few months later. I asked over and over why my son?
Tragedy struck two weeks later. I received a phone call from my brother telling me that I needed to get to the hospital. When I got there I was given the news that my mum had passed away suddenly. 

The morning of my mother’s funeral I had to go to the shop. A friend who was taking my son for the day came along with me. Eric was sitting on some mats that had been laid out on the floor. When I was ready to go to the till I called to him, not surprisingly he didn’t come. So, I called him again. I was only a few feet away but I may as well have been the other side of the moon. He refused to acknowledge me. I refused to accept he couldn’t because I wasn’t in his world. For Eric the world was something that happened the other side of a thick glass wall. He was removed from it. 
There was a man watching this exchange and decided to take it upon himself to point out that ill-behaved children were a product of bad parenting. I picked up my son and this man followed me the length of the shop calling my son a brat. I got angry and after several deep breaths informed him that my son was not badly behaved, that he had a disorder called autism and it meant he didn’t understand the world around him. The man was suitably mortified due to his rants drawing the attention of several shoppers. He didn’t apologize. 

I walked out of the shop with my head held high and told my friend what had happened. I realized that day I had to be a champion for Eric, I also realized that I would have done anything at all for the little boy on the mat because he was the little boy I had all along. He hadn’t suddenly changed with the diagnosis. I had to let go of the other child. 

I became conscious of something else too. It was the denial, hoping I was wrong. It was the same thing I did on the way to the hospital after receiving that call from my brother. I ignored my gut and made deals, I got depressed and angry. I saw the similarities between the two situations and began to understand what I was actually doing was grieving for my lost child. Once I understood it became easier. It wasn’t until much later I was given a leaflet on grieving and got to know that many parents went through the same process with their autistic child.  

I have learned to live in the reality instead of the dream. But, the reality brings it’s own rewards. There have been many firsts and many milestones reached, and I’m sure there will be many more. Each goal reached is the equivalent of climbing a mountain and feels just as good. Eric is a bright, social, friendly boy with interests in music and writing. He’s 15 now and it is unlikely he will ever live independently but he is no longer trapped behind the thick glass wall. He has found places where the glass is so thin we are almost in the same world on my side of the glass for a little while. He has found ways to bring a select few into his world on his terms, through his love of football and foreign cultures, cinema and music. 

I still think about that other son. Sometimes I look at Eric and imagine what he could have been. I still feel ridiculously resentful when I see a young boy or girl throw away their potential when they have opportunities Eric never will. They don’t understand the amazing gift they have been given by simply being able to communicate to the world around them. It’s heart-breaking. Then I have to stop myself and appreciate every little achievement with Eric and focus on all the things we do have instead of what we don’t.


  1. carol, this is a beautiful post, a must read for all of us so we can understand more about people like Eric.
    my only experience of autism was a child my cousin cared for.I met him just after he was diagnosed.He played like other kids but when he wanted a fridge magnet he put his hands up to be lifted but i realised he saw me as a means to an end and had no interest in me at all.
    first i thought this was sad and lonely but then i realised here was something very special in this little guy, honesty. this is his beauty. maybe this is the balance our friends with autism bring to this world.
    thanks for your honesty too. k

  2. Thank you for sharing. I can identify with everything you wrote. We found out right before my second son was born that our non-verbal 3 year old had PDD-NOS. I suspected something but not that! My world crumbled (and I turned to writing). The A word is up there with cancer. Bless your heart and thanks for your story! Hugs to Eric!

  3. I always enjoy reading what you write about yourself and Eric. You always describe so eloquently those turning points/moments in your life that you recognized as being so significant for both of you.