Autism

To the mom who told me that she hopes my autistic child never forgives me 

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    actuallyautistic bully

The #actuallyautistic movement

I’ve known for a while that there is a community of autistic people who have beliefs about autism that are different than mine. They call themselves #actuallyautistic. They believe that ABA therapy is torturous, only autistic people should be allowed to talk about autism, functioning labels are useless and insulting, and they strongly believe that “autistic person” is superior terminology to “person with autism”.

For the past two years, they’ve come to my Facebook page, Instagram page, and blog to leave nasty comments. I’m usually able to just block them and move on but today someone really pissed me off. “I hope your child never forgives you,” she said. It was in response to a post that you can read here, celebrating Charlie’s first words. She was referring to me sharing Charlie’s autism story online without his consent – Charlie, my nonverbal five-year-old. These people think Charlie will one day read my blog and hate me for revealing his life as a toddler for all to read, and for somehow usurping his identity and speaking for him. To a small extent I understand some of the issues. I didn’t get Charlie’s permission to talk about his autism. That said, I would give anything for Charlie to one day be able to read my blog and feel any way he goddamn wants to about it.

How would I feel if my mom had shared my autism story online?

I thought about this questions a lot. How would I feel if my mom showed me a blog she had written, a blog about what raising a child with high-functioning autism was like for her from her perspective. After really considering this issue I decided that I would be so proud of her for opening up and showing the world that autism is nothing to be ashamed of. We need more voices of people affected in any way by autism. I would have been touched by her sweet words and the love she showed me.

I don’t speak for Charlie, but I share my journey as the mother of a severely autistic child. On my blog, I write about Charlie’s successes, but I also write about the days I feel sad about having never heard his sweet voice call me “mom”. I’m only human, and it hurts. That’s me, it’s honest, it’s my life, and I share the good and the bad, just like with any parenting journey. Not everything is rainbows and unicorns and I’m not the kind of person who pretends it is. Charlie’s autism is a disability. That said, I always stay optimistic and emphasize how much I love Charlie, because I do. 

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Am I allowed to be sad? 

Just because I experience sadness over a specific skill Charlie doesn’t have or that he doesn’t show me love doesn’t mean I don’t love Charlie. My posts are full of love, hope, and pride for Charlie. It is awful that other mothers have guilted me for my feelings about having a nonverbal autistic son. I get messages all the time from parents thanking me for my blog who relate to my life. These parents find solace in my words, and they feel less alone because of how I open myself and my life to them. That’s what makes it worth it for me.

“I hope your autistic child never forgives you”

I included a few representative screenshots to give you a good sense of the situation. There are a lot more. This is real and it is not a rare occurrence. People tell me I’m not autistic and that I couldn’t have autism because I hate autism. Not gonna lie, these particular attacks had me laughing. 

While I don’t share their views on autism, never would I ever insult them as mothers or make them feel less than, yet they do that to me. I’m not going to write much more on this subject but I want readers of my blog to know that I, an autistic adult, do not speak for all of us, and in fact, a fair number of autistic adults apparently hate me. 

From now on, I won’t engage or respond to any of these comments. If you’re #actuallyautistic and reading this, and I know you will, I ask that you please respect me by not commenting on my posts anymore. Just go away. Stop browsing my page and unfollow me. Move on! I know how you feel. Really, I understand – you’ve said it enough times. I bring “shame to the autism community”. Oh, and don’t bother repeating that I’m torturing my son with ABA therapy anymore either. I’ve heard that one enough too. We’re all grown adults and we can agree to disagree without tearing each other apart, or at least you should strive towards that.

 actuallyautistic bully   

harassment actuallyautistic

actuallyautistic bully

  

Thank you for reading my autism blog

On a positive note, thank you to everyone who’s been supporting my blog. Thank you to everyone who celebrated with me when Charlie said his first word. Thank you to everyone who had my back today when these mothers attacked me. Thank you to everyone who follows The Autism Cafe and engages on my posts. Thank you to everyone who takes the time to message. Thank you to the lurkers too (I’m shy too). I appreciate you just for reading this right here right now. Your support means a lot. This blog wouldn’t be the same without all of you. You are my people.

Sincerely,

An autistic mother of an autistic child 

autism actuallyautistic

 

To see more of my autism blog posts, click here

To see more of my mom blog posts, click here

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17 Comments

  • Reply
    Tracy
    2018-03-16 at 1:25 AM

    This pisses me off for you. I know my mom has told a ton of stories about how difficult I was as a child…how hard it was to be a single mother. She’s discussed her frustrations, embarrassments, even shame. Not once did she get my permission. I’m not autistic. But motherhood isn’t easy – no matter what your circumstances are. But it’s easier when we have someone who can relate to what we’re going through. Someone who can tell us, if nothing else, that we’re not alone. I hope comments by people like this woman drive you harder to get your story out there. #womensupportingwomen #motherssupportingmothers

  • Reply
    Kristin H.
    2018-03-16 at 2:45 AM

    You are amazing!! I love reading

  • Reply
    CJ
    2018-03-16 at 4:54 AM

    The fact that mothers bully other mothers, knowing the struggles we all face is just terrible. I’m sorry for the hateful words flung at you today. Charlie is lucky to have a mother as engaged and invested in him as you and he’s thriving and growing because of it.

  • Reply
    Blaison
    2018-03-16 at 5:27 AM

    Je n’ai compris.
    Que se passe t il ?
    Quelle honte.
    Tu es une maman extraordinaire ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️

  • Reply
    Bobbi Elman
    2018-03-16 at 8:59 PM

    Remove my comment you posted from facebook, a subscribed service. You do not Have my explicit authority to use it. You do not have the legal. Right to use it especially as you did not hide the profile photos. I am asking politely.
    Please remove it, I do not want to have to call upon my uk solicitors.

    Thank you

    • Reply
      KLJ
      2018-03-16 at 11:07 PM

      Maybe you should think twice about the nasty comments you leave people. It’s not pleasant being on the receiving end of vitriol, is it?

    • Reply
      Sarah
      2018-03-17 at 9:48 PM

      I’m sure you are ashamed of people knowing what you said. If I said such disgusting, hateful, lies, I would be ashamed too. But I know for me personally, I just don’t play “internet troll” then get mad when someone calls me out. You are clearly an extremely insecure, depressed, hateful, and probably hated individual. But that’s no reason to take it out on an amazing woman. One of the sweetest, most loyal, caring, loving women I have ever had the pleasure of knowing. You, my dear, should STRIVE with every fiber of your being to be more like Eileen Lamb.

    • Reply
      Lynde
      2018-03-18 at 7:58 PM

      Lol when I read this I was in such disbelief being a parent is hard never mind a special needs parent we should all have each other’s back and trying to build each other up not tear each other down . My daughter is not autistic she has a rare syndrome called kabuki syndrome 1 out of every 3200 have it but the symptoms are almost the same with medical issues rolled into one with a great big bow of good and bad times … never judge anyone without being in their shoes and for the record if it was me u did this to u would think twice before bullying someone else’s because we don’t all play nice

    • Reply
      Jen
      2018-03-27 at 10:42 PM

      I genuinely hope you contact your solicitor. And pay to have them laugh in your face. You sent a message and she is free to share what you posted on the internet. That’s how the internet works you terrible excuse of a human being. As a clinical psychologist I find people like you disgusting, as a mother I find you pathetic, as a wife twenty years into a relationship with someone who is high functioning I laugh at you grandiosity to think to speak for my husband, and as a human being I hope someday you understand what a horrible human being you have been and work to do better. Be better.

  • Reply
    Cristina Pulido
    2018-03-17 at 2:12 AM

    It is so hard being a Mom it is harder to be a mom of an autistic child. And there is nothing wrong for being honest about our experiences with autism because it is still very confusing and nobody knows anything concrete about the condition, it is not math. At least this is what I feel. If one day he can read this, he’ll know how you felt and be grateful that you care so much that even wrote about this in a blog. He will be smarter that all of us and read the main message of this blog –>love

  • Reply
    Sarah
    2018-03-17 at 9:52 PM

    Eileen, I know I’ve told you this a million times, but I envy what kind of mother you are. You are simply amazing. Charlie and Jude and so incredibly blessed to have such a loving, caring, dedicated mother. And I, am truly blessed to have such a loving, caring, dedicated, loyal, trustworthy, honest, friend. I value you and our friendship more than I know how to put into words. And I sincerely hope you don’t let these appalling, disgusting, despicable women get you down. They are liers. Not one thing those pathetic “internet trolls” said was true. I know that. You know that. But most importantly- Charlie knows that. Excuse my language…but f*** them. Seriously. They are not worth your time. I love you so much, Eileen. You are THE BEST!

  • Reply
    Alba van Dyk
    2018-03-19 at 7:52 AM

    You have two beautiful boys! Stay blessed x

  • Reply
    Tammy
    2018-03-19 at 10:07 PM

    Eileen, you are awesome! Everyone of our kids come with a unique set of joys and nightmares. Thank you for sharing both. You are not alone in the way you feel, and your entitled to feeling like crap some days! Autism is not a gift, like some people have said to me. Everyday is an adventure, some days its a journey straight to hell. You go girl! Theres more of us with you than against you. Thank you for sharing your journey with us. I’ve been an autism mom almost 23 years, it never gets easy, just different!

  • Reply
    Lori
    2018-03-21 at 7:57 PM

    Beautifully said! Every child and person is different. I am also an autism mom with a blog.

  • Reply
    Sara
    2018-03-24 at 4:44 PM

    Good grief D: If it’s any consolation, I’ve had some of the same comments said to me (mostly by family) about speaking out about my sons sensory processing disorder, possible high functioning autism (we’re on a waiting list for a psych evaluation), and all the ups and downs. Parenting is hard. Regardless of special needs or not, it’s friggin hard. It cracks me up seeing other people be so negative and derogatory with stuff like this. There are days where I literally have to tell my husband that I can’t handle it and he takes over for a couple hours. We trade off a lot to keep us both sane (two boys, one is almost 3, the other just turned 4 in November).
    It’s blatantly clear that you truly love and car for your kiddos, and if other people can’t see that, they’re just plain crazy. As a mom to a really hard kid to parent and step mom to one that’s super easy to parent, I get it. No one functions on everyday being rainbows and sunshine. We all have days where we’re questioning whether or not we can do it. Keep up the awesome work, mama.

  • Reply
    Dorothy
    2018-03-28 at 3:40 PM

    Thank you for sharing! It helps many of us who are raising a child with autism.

  • Reply
    Rosa
    2018-03-30 at 1:08 PM

    We need more messages like this…Not everything is unicorns and rainbows and it’s okay to feel sad, frustrated and want to connect with other people who think the same. It’s okay to have a bad day, a bad week, month and let’s be honest sometimes it’s a tough year, it doesn’t make us bad people or parents…it makes us human. Thank you for sharing the real and celebrating the good! Haters are gonna hate….perfect people should be enjoying their lives and not commenting on other people’s blogs.

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