What do you feel when you realize your child has Autism?

I’m going to veer away from writing discussions today and focus on something that’s affecting my life in a huge way, and that’s the realization that one of my children has autism. We’re still going through the diagnosis process, but last week the school doctor confirmed what we sort of already knew, that my daughter has Autism Spectrum Disorder, and now we’ve had a few days to come to grips with it. Yesterday, I sent a message to a friend to attempt to pin down a date for a dinner we’ve been trying to plan for weeks. I took the opportunity to explain why things are a bit crazy right now. She said not to worry and then she asked how I felt. The generic answer, the one we’ve been programmed to respond with, is anything vague and brave, like, ‘Oh, we’re a little shocked, but we’re good. Learning all we can!’ Or something. Unfortunately, that doesn’t even come close to what I feel.

So how do I feel?

The short answer is like a big, complicated mess. Let me explain: 

  • I feel the assessment is accurate.
  • I feel worried about her future.
  • I’m also worried about how little I know.
  • I feel a little more understood when I explain how tired I am to other parents.
  • And yet, I feel other parents who do not have a child on the spectrum will never understand.
  • I feel relieved there is a group of parents out there who understand, and once I find them, I’m going to feel even better.
  • I feel happy about all the extra stuff we did along the way, hoping to make a difference even when we didn’t know what was going on, like the schedule charts, and turn-taking chart for movie night.
  • At the same time, I feel guilt for all the times I yelled at my daughter when I didn’t get it, or when I was too tired, or had zero patience left.
  • I feel tired when I think of all the extra stuff we’ll have to continue to do for a long time.
  • I feel scared.
  • I feel like I understand my daughter better than I ever have, especially the more I read.
  • I feel sad beyond words when I know my daughter is five feet away from me and yet there are times I can’t reach her.
  • I feel lost when I look at my other child and can’t find the words to explain in a way that he can understand.
  • I feel worried he’ll get lost in this process, or even come to resent his sister.
  • I feel worried he might have his own diagnosis and I wonder if we have the strength to handle both of them.
  • I feel a little jealous when I look at the other moms who don’t have a child on the spectrum and I wonder what that would have been like. Not all the time, just a little tiny bit.
  • Then I feel ashamed.
  • I feel a little angry because sometimes I want to be selfish and do something for me, but I can’t because I’ve had to put everything on hold for so long.
  • I feel grateful that I’m in a position to put everything on hold so I can be there for my daughter!
  • I feel confused searching for answers in a country where all the information and resources available to me are in a different language, so I have to work twice as hard to find help.
  • I feel drained when I listen to the nurse or doctor speak in a different language, and I hope I’ve followed along with everything they’ve said.
  • I feel lost because I don’t know where to start looking for answers.
  • I feel like I don’t even know what all the questions are, or at least, which ones are important.
  • I feel grateful to have access to so much free information on the internet, in whatever language I want =).
  • I feel alone without any family of my own to support me and that feels horrible.
  • I feel confused because I don’t know when to tell people and when it doesn’t matter.
  • I feel angry at her old school because they said they were performing an evaluation when they weren’t and we’ve lost so much time trying to get her help.
  • I feel like a whirlwind of thoughts fly around me all day long and I don’t know which things to focus on, and which things to let go. When do we keep her home from school? Why can’t she eat meatballs in her room? What can we do to prevent a meltdown every time she puts socks on?
  • I feel sad because the one thing that helps her calm down is to rock/swing and we don’t have a swing and I don’t know how to get one in our tiny apartment.
  • I feel stretched thin doing a dozen things a day to prevent meltdowns before they happen, and working through them once they show up anyway.
  • I feel more empowered knowing what things are important in life, and which things are so unimportant, like the color of coffee cups.
  • I feel proud of my daughter because she is beautiful, and smart, and so very brave. She has the world in front of her, if only we can help her see that and work through the challenges.
  • I feel excited to support her intense interests and to find ways to connect with her through them.
  • I feel overwhelmed when I consider trying to teach her self-esteem in a confusing world that will make fun of her and will let her down over and over and over again.
  • I feel heartbroken when I hold my daughter on my lap in a school hallway because she couldn’t handle school that day and listen to the other kids walk by and tell me how ‘strange’ my daughter is and how all she does is sit there and cry.
  • I feel on the verge of tears when I hold her hand and, as we leave, I hear her one friend, the one she was so happy to find, tell her he can’t be friends with her anymore because she disturbs him with her crying.
  • I feel like my world has been turned upside down and all I want to know is where is the ground beneath my feet.
  • I feel like it’s going to be a long, tough road.

But you know what? I feel like it’s going to be okay.

Most of the time.

Published by casblomberg

Cas Blomberg is a native-English speaking writer who lives in Stockholm, Sweden.

13 thoughts on “What do you feel when you realize your child has Autism?

  1. One of my children is somewhere on the spectrum. I and his mother knew he was different but never were aware of this ‘spectrum’ and its implications until he was well into adulthood. It may not have been a causative factor, but he took himself out of my life 20 years ago. If I had known during his youngest days what you now know and will learn about, I might still have a loving relationship with him. This doesn’t help your anguish, but perhaps there is reason to see an upside.

    1. Thanks Ron for your message. I can only hope the more I learn, the more I hope to reach my daughter. That’s the goal anyway =). I’m sorry to hear about your son. Maybe it’s not too late to reconnect?

  2. I’m not a parent, but several of my friends have children with autism and my adult brother-in-law has a diagnosed spectrum disorder. Although their children’s conditions can make their lives more complicated, with understanding they are happy families with ups and downs like any other. Unless their case is very severe, people with autism can lead very functional and full adult lives. My brother-in-law is very intelligent with an edict memory; if placed in a situation where there isn’t a lot of social interaction with new people all the time he does great.

    All the same, strength to you and your family as you make what is certainly a big adjustment.

    1. Thanks for the support and kind words! We believe she’s smart and brave and can handle anything life throws at her, like your brother-in-law, as long as we all make it through the adjustment period =). I think as long as we give her that, support, and belief, and love, and understanding, she’s going to do great things.

  3. You feel free to dump on all of us whenever you feel the need to. Heaven knows, I’ve done it. And in doing so, you will help better educate some of us.

    And it may well be okay – most of the time.

    Regardless, we’re here reading. You are never truly alone. Please remember that.

  4. Cas, what an amazing and heartfelt post. Like Sara, I don’t know what you’re going through but I can relate to the emotions and to the ‘overwhelm’ mode they throw us into when such things drop down out of the sky.

    Just reading your post tells me that it IS going to be all right. As a fellow writer, I think you’ve done the best thing you can at the moment: you’ve written about it, reached out, pondered the situation and, in every bullet point, shared your love for your children. Good for you.

    We haven’t met but I’m working up to it via Catherine of SWG and Cassie’s activities. I’ve been away dealing with an elderly parent (two, actually) situation — or we might have by now.

    Please know that you’ll be in my thoughts.

    1. Hi Cynthia, thank you. I think it is going to be all right, too =). And on the days when it isn’t, maybe it’s a great excuse to set up more girl’s night out evenings.

      I hope whatever situations you are going through are resolved soon, because I would love to meet you =).

  5. The honesty in this post is so amazing it breaks my heart. I don’t know what you’re going through, but I can relate to the overwhelming emotions. The good part is you’re not alone in this. Like you say, there are other parents going through the same thing. Find those people, and I’m sure it will be tremendously helpful.

    As for her fondness for rocking/swinging, would a rocking chair work? Or maybe you could hang a hammock from the ceiling? Something like this, perhaps: http://www.brasommarmobler.se/hanggunga-gra-vit.html

    Anyway, take care. I know we don’t know each other extraordinarily well, but if you ever want to vent at me, then you’re welcome to do so. *hugs*

    1. Thanks, Sara, for your message and for the swing tip! We found something like a cushion swing at IKEA, but I haven’t seen the kind you posted before.

  6. I consider myself new to this ,my son was diagnosed last year but everyday is a new day we learn about him and from him .Yes I still shout at him and cry to sleep because I’m so guilty.You are not alone

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