An Open Letter to Autism

An Open Letter to Autism

Dear autism,

It’s been a year today since you let your presence known and changed our lives forever. I won’t lie, getting the verdict was a tremendous shock and it didn’t get easier when we realized, soon after, that not only did JA have autism but also his younger brother, V. For days we were in complete denial and disbelief. For weeks we were devastated, grieving the loss of our sons’ future we had imagined. We didn’t give you the warmest welcome – rather the opposite. We were angry with you for choosing our boys as targets. We hated your presence and for a long time, we had nothing but negative feelings towards you. I think it’s safe to say that we were not prepared for your appearance but I guess it has something to do with your bad reputation. Fortunately, we’ve come to learn that your reputation is grossly exaggerated.

I am not saying that you are not challenging or heartbreaking at times, because you are. And what has surprised me the most in retrospect is how long it takes to get over you as a constant in our lives. We got over the initial shock but that doesn’t mean that we don’t have relapses every now and then where the despair threatens to take over. And sometimes we let the darkness encompass us and drown ourselves in self-pity. But only temporarily. What doesn’t break you makes you stronger and we certainly haven’t broken yet. I guess that means that we’ve grown stronger. Our crust is thicker because of you.

Despite the difficulties that are certainly there, it’s not all bad. Far from it. You’ll never be welcome, I’m afraid. No one wishes for their child to have autism. But once I learned to accept that you are present, that you’ve been there all along, and that you’ll always be there, it became easier to forgive you for choosing my kids. You see, I love them unconditionally and since you are an integrated part of them, it’s difficult to hate on you. What I mean is that you are part of them and I don’t know where to separate you from them. And since I love them, I guess that means that, in a certain way, I love you too. What a bizarre realization!

What a tricky phenomenon you are. You are hard to understand and affect those you touch in so many different ways that it’s almost hard to keep up. You can be intimidating, isolating and so so limiting in many ways. It’s so easy to dislike you and yet, there is something intriguing. You can be quirky and mind-blowing in your brilliance. You can foster weirdos and geniuses but all I want from you is that you go easy on my boys. Whatever that means, please just let them be happy.


Autism: the light of rainbows

As always thank you for reading. Sharing the post and/or commenting is always appreciated. ~Ragga

20 responses »

  1. Pingback: An Open Letter to Autism « traumama

  2. Hi Ragga, This is beautifully written and a very good description of how I feel about my boys.
    When the dark days come you have to remember that it will get better after, it does get easier as time passes, but it never stops and I think it never will.
    Have a good weekend, Louise

    • Thank you Louise. Yes, I think you are right, it will never stop altogether. That’s definitely been a learning curve for me and I’m without a doubt stronger after. Good weekend to you too.
      ~ Ragga

  3. Dear Ragga, this is an absolutely great post. Your boys must have been diagnosed at the exactly same time as Egill, its been a year now for us too.

    I have been having thought about this lately, that is thoughts about my feelings are towards my sons autism and it was such a revelation reading your post. Thank you!

    • Thank you Margrét. How interesting that it’s the same time frame for us in terms of our sons getting diagnosed. Has it been a similar roller coaster for you as it has been for me?

      Of course it was nothing but darkness in the beginning but then you get over it. Or so you think until your knocked down again. You manage to stand up again and some time passes and you think think: “well, NOW I’m over it”. And then you get knocked down once again. It always amazes me how the tiniest things can affect me. But it gets longer in between the knockdowns so maybe eventually, it will get more stable. I don’t know.

      Thanks so much for your comment.
      Best, Ragga

      • That is exactly how I have been for the past months. I usually am very happy and can see how happy my son is but then I suddenly start crying on the train or in the grocery store (hopefully without people noticing). This is usually when I start thinking of the future. Will my son have friends, a girlfriend, will his classmates tease him, etc. I guess the trick is to stay more in the present. I don´t know.

        • Yes Margrét, I think you’re right. I sometimes think of an amazing saying from Kung Fu Panda when I start thinking forward too much that I love:

          Yesterday is history, tomorrow is mystery, today is a gift. That is why they call it present.

          It reminds me of what’s important – the now. There’s no use in thinking of the future too much. We never know anyways what happens so we better enjoy what we have while we can. But I, like you, sometimes can’t stop myself so I know it’s not easy.

          xx Ragga

  4. Great post and one which I’m sure many can relate to. In some ways though what it brings you is a more positive relationship with the simple things in life – those with no problems to overcome and battles to fight often miss the beauty of what’s under their noses! :)

    • Ann, I think you make a great point. Sure, it’s a struggle and sure, it’s sometimes a bleak one, but we also learn to appreciate the small victories even more due to it. Great comment, thank you.

  5. Do you know Ragga, you always seem to write exactly how I feel (especially at this current moment). I am. Struggling with the anger and why which is causing me terrible anxiety and stress, which I have been able to hide incredibly. Whilst writing this my little I is say spinning her ankles and flapping her hands listening to a NOW albumn on my IPod, something which I never though of trying before.
    As always a pleasure to read you blog and I look forward to the next.
    All the best


    • Thanks so much Freyja. I hope it helps you to read about someone else who is going through the same emotions and struggles as you are. It sure has helped me. Enjoy the music! ;)

  6. Funny how, in writing we uncover what we think. I bet you never thought you would tell autism that you loved it! I still have days (like yesterday) when I curse it. Good to hear from you!

    • So nice to hear from you too! :) And yes! I did not expect that I would declare my love for autism when I started writing this blog post! It came out of know where but made so much sense once I’d made the connection. However, you are far from alone in cursing autism on a regular basis. I’m with you there! So I guess it’s kind of a love/hate relationship, huh? ;)

  7. Dear Ragga. Imagine it’s been a year since you realized autism was going to be a part of your lives. I belive in those early dark days you would belived you would never see the sun again. But you all have survived and your blogg shows me that you are adjusting. After the rain the sun will shine and although it will rain again the sun will finally get through. I can’t wait to get you guys home and looking forward to be able to hug you all. Bjadda

  8. Ég var eiginlega bara klökk af því að lesa þetta. Ótrúlega fallega skrifað hjá þér Ragga mín. Þið standið ykkur ótrúlega vel og ég er að springa úr stolti af ykkur!!! Xxx

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