To The Parent Whose Child Has Just Been Diagnosed With Autism And Is Struggling

Dear Parent

I wanted to write this letter to you to help you understand the diagnosis you have just received and some of the thoughts and feelings going through your mind at the moment.

When my son was diagnosed with autism, we’d barely had chance to enjoy his early years as we’d many things thrown at us. Joseph was only 3 when he was diagnosed and I know some parents wait a long time to hear the news that they had fought for, for such a long time. That wasn’t the case with us and I struggled to come to terms with it.

I worried for a long time what a diagnosis of autism would mean. He wasn’t talking, he wasn’t toilet trained and I wondered what autism would actually mean for him. I heard so many inspirational stories about autistic people going on to live very successful, independent futures but I couldn’t see that for Joseph given how many challenges he faced daily.

I felt that everything I expected to come from being a parent had been snatched away from me and I was frightened for the future. He is an only child and I often panic about what will happen when I am no longer here. I didn’t want to talk to anyone about it, felt it was a reflection of something I had done wrong in my pregnancy and I felt guilty for everything that Joseph continued to struggle with. I wanted someone to be honest with me, yet also give me hope for the future.

I quickly realised that Joseph would need a huge amount of strength from me to be able to overcome his difficulties and encourage his independence skills. I dedicated a great amount of time, trying to understand as much as I could about anything and everything that would potentially help him.

I know some parents feel very differently to how I feel and what I want you to know is it’s ok to admit that you’re not feeling the same way as everyone else. Some parents are embracing of the diagnosis and some of us take a little longer to get their heads around the fact they’re going on a different journey.

We’re six years post diagnosis now and life is very different for us. Joseph does have language and his communication improves every single day. We challenge each other in ways that I never imagined. We have a great deal of love for one another but equally we drive each other up the wall; he is my child after all!

It’s ok to be fearful of the future. It’s ok to feel overwhelmed by what a diagnosis might mean.

I want to be that person who I so desperately needed after Joseph’s diagnosis. The one who despite not being able to predict the future, could tell me it would be, simply ok.

You’ve got this.

Tina 

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3 Comments Add yours

  1. Laura says:

    Hi Tina! I am an Occupational Therapy student in the U.S. and I am following your blog for one of my classes. I have so enjoyed learning about you and Joseph. Thank you for all of your posts! This one in particular reminded me of the poem Welcome to Holland by Emily Perl Kingsley – I would recommend you check it out!

    1. Hi Laura, thank you for following! Yes I know it well..I wrote my own version if you want to do a search? 😉

      1. Laura says:

        Wow, I love your version! Thank you for being so frank and transparent in your writing. I’m looking forward to continuing to follow your blog!

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