Autism Neurodivergence

Grief After My Child’s Autism Diagnosis

Coping With Grief After My Child’s Autism Diagnosis

My daughter received her autism diagnosis a couple of months before she turned six. For perspective, the first time I went to the GP asking her to be referred for an autism assessment, she was 2, maybe 3. I battled for a long time to get to that point.

Now, from the title of this post alone, you might think that my grief will be along the lines of me being sad that she was ‘officially’ autistic. Or being sad that she might never be ‘normal’. Being sad that she might struggle in life, or miss out on opportunities that might have been available to her if she were neurotypical. But that is not what this is about.

Her Diagnosis Brought Relief

In fact, when I received the phone call to be told she had been diagnosed, all I felt was relief. I wasn’t crazy. I wasn’t imagining things. And – most importantly of all – I hadn’t been the cause of her struggles, no matter what her family, her nursery staff, or her health visitors would like me to believe.

So no. I wasn’t upset. I didn’t grieve her diagnosis. I’d already known for years at this point that she was autistic – even if I was still terrified that the people assessing her would echo the same sentiments I’d heard from others. That I was a bad mother – that my parenting had caused her to struggle.

My grief, mainly, was about how others hadn’t accepted her. How her family wanted to change her. They’d wanted her to get used to things she didn’t enjoy – like hugs, even when it was clear they made her deeply distressed. Similarly, people found a problem with me allowing her to sleep in my bed, when it was clear being close to me was what made her feel safe. It was never a problem for me to let her be herself, or to wait for her to be ready to do things in her own time. But it was always a problem to others. Get her used to doing this or that – because letting her carry on being ‘abnormal’ was obviously not an option, right? I didn’t see it that way. I was always happy to take a child-led approach, and to let her be herself. Whatever made her feel happy and safe was always the path I’d choose.

The Dreaded A-Word

Before she was diagnosed, it was obvious how the people her felt about autism. Any sign of ‘progress’ on her part was treated as a miracle sign that ‘maybe she isn’t autistic, maybe she’s just shy‘. It was as if they thought that I was also desperately clinging to a thread of hope that maybe she isn’t the dreaded A-word.

To me, her diagnosis didn’t make a difference. Not to me, not to her. I mostly sought it out so that people would accept her for her, and stop telling me to try to change her. Failing that, it would at least give me the confidence to stand up to them, the confidence to know that the way I parented was right for her, even if other people didn’t like it.

So yes, my daughter’s autism diagnosis came with grief.

It came with grief for her – that the people who love her were unable to accept her for the wonderful child she is.
Grief that I didn’t have support in those early years of parenting.
Grief that, instead of support, it was constantly insinuated that I was doing it all wrong.
That I wasn’t pushing her hard enough.
That I was raising her to be weak and anxious.
That I was somehow responsible for her struggles and fears.
It broke me down – it made me feel alone. It made me question myself.
It made me start to believe that her struggles were all my fault. On my darkest days, it even made me wonder if she would be better off without me.

But in that grief, there is also power. Yes, people tried to tell me how I parented was wrong. But I knew my girl better than anyone. No matter how bad people tried to make me feel for doing it, I still followed her lead. I still allowed her be herself – and I still don’t know why people had a problem with that.

She’s fantastic just the way she is – because she’s autistic, not in spite of it.

One thought on “Grief After My Child’s Autism Diagnosis

  1. Hi Hazel,

    You mentioned that your daughter doesn’t like hugs and that this caused friction between you and others.

    What were some of the other things people took issue with regarding her behaviors?

    Take care,
    Polly

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