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Wednesday 17 January 2024

Receiving an autism diagnosis as a parent

Expecting a diagnosis is different to hearing it said out loud

Recently, our little boy Oscar, who is not yet four, was diagnosed with autism. As many parents with an autistic child will know, it has been a long journey to get to the point of diagnosis, so whilst it was not a shock, hearing the paediatrician say at the end of the assessment, “I am happy to diagnose your son with autism today”, did evoke quite a lot of emotions in me that perhaps I wasn’t expecting.

One of the feelings I had was relief. We have been on this journey for over two years now and at times it has been rocky. Waiting lists are long and services are stretched. We have been told over and over that we need to fight to get Oscar the support that he needs. The system is tricky to navigate and at times we have felt anxiety and despair. Oscar is non-verbal and really needs one-to-one support in order to make progress. Having the diagnosis and an Education Health and Care Plan (EHCP) in place means Oscar should be in a really good place to get one-to-one support over the next year, and hopefully get into a specialist setting when he starts school next year.


Autism is fundamental to who Oscar is

I think I tried to push more negative feelings to the back of my mind, as I have always struggled with feelings of guilt. But on hearing the diagnosis, I also felt sadness. I don’t like it when people say that it’s very sad Oscar is autistic. I know that it comes from a good place, but as my husband once said when we spoke about it, “there’s nothing sad about Oscar”. He is the most joyful, beautiful little soul, and I don’t want people to pity us for having an autistic son. Autism is fundamental to who Oscar is and we would not change him for the world. But some days I have felt sadness. It has taken us quite a long time to come to terms with the fact that we are on a different parenting journey to the one we envisaged. And I think that a part of me still grieves the things that we won’t experience with Oscar — he’s not into Father Christmas, or opening presents, or pretend play. He has no interest in playing with his peers. But that in no way diminishes the immense love we feel for him, and the joy that we get from being his parents.

There is something about hearing the diagnosis from the paediatrician that is very final. There have been so many times over the past couple of years when we have thought, “maybe he’s not autistic”. People have said things like “oh, there’s no way Oscar’s autistic, he’s so affectionate, he’s very social, he doesn’t mind loud noises etc”, and just as we have started to accept that Oscar probably is autistic, we’ve been plunged back into uncertainty, thinking “well maybe he is just delayed then, perhaps he’ll catch up”. It’s been a rollercoaster of emotions.


Feeling many different emotions

I had a chat with the autism outreach lady later that day, and she asked me how I felt about the diagnosis. I said I was feeling happy and relieved to finally have the diagnosis, but she probed me. She said: “It’s okay to feel other things too. You can feel sad. And you can feel differently to how your husband feels too”. I felt myself welling up. She had given me permission to feel the many different emotions I had felt surfacing, but had tried my best to suppress.

I never expected to have a child with autism. We don’t have autism in either of our families, so it just wasn’t something that was on my radar as a possibility. It sounds like a cliche, but it felt quite distant, something I was aware of, but something that definitely only happened to other families. I even remember thinking before having children, “oh gosh it would be so hard to have an autistic child, I don’t know how I would deal with a child that wasn’t able to show me any love”. Every autistic child is different, but it’s safe to say that our experience with Oscar has shattered pretty much every preconception I had about autism, and for that I am so grateful. He has made me more aware, more tolerant, and is teaching me not to be so quick to judge. As my friend with an autistic child said to me last week, “there are definitely more challenges with an autistic child, but then they have this amazing light that shines brighter than most”.


About the author

Amy Noonan is a communications professional living in London with her husband Tony and two sons Oscar and Archie. Her interests include yoga, singing in her local community choir, baking and dogs.