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.
What 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.
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.
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.
An autistic mother of an autistic child
Tracy2018-03-16 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
Kaylee2022-07-17 at 4:21 PM
If an autistic person is upset by a parent exploiting their autistic kid I get that but I really don’t feel like you’re doing that. I too have an autistic son and the amount of hatred towards autistic parents is horrible. As you said we already feel awful like we are doing it all wrong. Most of us are probably autistic too and just acted normal enough to stay under the radar. The minute my son was labeled autistic I thought that he’d finally get help and be understood. What I actually got us was abandoned by friends and family. So I lost support for both of us and I’m trying to rebuild support from scratch. The prior school used his autism as an excuse to not teach him and allowed him to hurt by other autistic kids.. I’ve moved three times to try and give my entire family a better life and more support. I always feel like we are both swimming against a rushing river. I can tell you this though this goes out to the people who aren’t actually autistic and claim to be because I guess it is trending…. you are actually really hurting the autistic community do not demonize the tiny bit of support they do have claiming to be their knight. It’s really hard enough trying to navigate through sharks we don’t need sharks imitating fish too. It’s hard and exhausting enough for us get a better hobby.
Kristin H.2018-03-16 at 2:45 AM
You are amazing!! I love reading
CJ2018-03-16 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.
Blaison2018-03-16 at 5:27 AM
Je n’ai compris.
Que se passe t il ?
Tu es une maman extraordinaire ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
Bobbi Elman2018-03-16 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.
KLJ2018-03-16 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?
Sarah2018-03-17 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.
Lynde2018-03-18 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
Jen2018-03-27 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.
Cristina Pulido2018-03-17 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
Sarah2018-03-17 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!
Alba van Dyk2018-03-19 at 7:52 AM
You have two beautiful boys! Stay blessed x
Tammy2018-03-19 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!
Lori2018-03-21 at 7:57 PM
Beautifully said! Every child and person is different. I am also an autism mom with a blog.
Sara2018-03-24 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.
Dorothy2018-03-28 at 3:40 PM
Thank you for sharing! It helps many of us who are raising a child with autism.
Rosa2018-03-30 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.
Elanore2019-03-15 at 6:09 AM
Oh wow am I glad I found this article. And I am truly sorry that people have went out of their way to hunt your posts down and talk to you so hatefully! My autistic 4 year old son’s father actually has done this to me. I had made a Facebook post about how our son’s issues with pinching and biting were really getting to me because I was working so hard to take care of him while also having just lost my mom. I just mentioned that I wish I did not have to feel constant physical pain on top of the depression. His dad ridiculed me, saying I should be ashamed for what I said and that if I feel he’s too much to handle, that I should just leave, “It’s not like he needs you.” he said!! All of that coming from a man who hasn’t once taken him to the park or a kids museum and refuses to go anywhere with him unless I’m around because he can’t be bothered to deal with the extra care our son needs. He has plenty of time and money to take his other 3 NT kids he had with his ex to amusement parks, concerts, the movies, yet not has ONCE taken our son out somewhere. Clearly his bashing of me is about his own insecurity. He doesn’t give a damn, really, he just doesn’t like the idea of people knowing he made imperfect offspring. I mean the guy spends an hour just fixing his hair everyday, when I’m lucky to get maybe 1 or 2 15-minute-long showers a WEEK.
Their comments are not at ALL about you. It’s their own insecurities about their selves! Do not forget that.
You are a strong and amazing mom.
Maria2019-03-16 at 6:09 AM
F$&k the internet trolls Enough with the people who thinks they own autism
Careeeesha2022-02-21 at 1:17 AM
We literally do when we’re autistic. Are you that daft?
Nathan2019-03-23 at 7:50 PM
Gosh, I could’ve written this post myself. Even the ages and severity match. Thank you – so so good to know we’re not alone on this.
Martha2019-04-10 at 1:08 PM
The condemnation of hypocrites is the greatest compliment, sugar. Never let a fake person make you feel bad for being real.
Jane2019-04-27 at 3:34 PM
Loving your writing . I am a UK mum to a severely autistic teenage boy. He is thriving at an ABA school – which I speak and campaign about (www.abaa4all.com) so more people can get it funded by the UK state. This of course has made me a target for plenty of anti ABA folk online. It used to really upset me, and I would try and talk to them about how they had the wrong end of the stick about ABA, but it just added fuel to the fire. Now I just use my trusty mute button as I am too old for this shite. I wouldn’t get into a row with a stranger on the bus who volunteered ignorant views on my parenting; so nor do I now on Twitter. Good on you for speaking up, have pre-ordered your book,
Patricia2020-01-24 at 7:08 AM
Thank you for your articles we really get a lot of comfort from your words. Love ❤️ to your family
Jen Mercier2021-01-26 at 9:03 PM
At least one of those posters is right: Your son may well read your blog posts. You are what you say you are, so try to be a little more careful with what you say.
AR2021-07-02 at 12:08 AM
what’s your point? my mom told me on the regular I was a difficult toddler that never listened and was angry all the time. I didn’t grow up into a damaged shell of a person like you clearly are
Alana2021-04-04 at 9:46 AM
As a parent of a non verbal child, I need to read other parents struggles so I don’t feel alone and so I don’t feel like a terrible mother, that someone else is struggling. Thank you for having the strength and courage to share your struggles with us it means the world to mothers like me.
anonymous2022-01-31 at 10:00 PM
I am autistic and it made me feel awful when my mother spoke about me this way as a child. We can’t help it.
Anon2021-05-17 at 7:42 PM
Let me guess, you support Autism Speaks, don’t you?
anonymous2022-01-31 at 9:58 PM
I’m a part of the #actuallyautistic community, leaving horrible comments is no way to get someone to agree with you though. A lot of people who’s hearts are in the right place try their best to support the autistic community, only end up hurting it. This is because there is so much misinformation out there spread by companies such as Autism Speaks. This is not your fault at all.
I beleive that if everyone is open minded and listens to each other, there can be equality between autistics and neurotypicals.
Cafethis2022-02-21 at 1:15 AM
You are wrong to act like you “lost” a child. As an autistic parent to an adutisic child, also a BEREAVED mother I think it’s disgusting how you compare the two. No wonder you get hate.
Tired2022-05-02 at 12:18 PM
I’m also a mother that lost one child and has one autistic one.
I’d rather two lost children. Dealing with the Autism is nothing more than a punishment that I don’t feel like I deserve. It’s FAR more miserable than burying my first, because at least then you can mourn and move on. But dealing with autism every day – there’s no moving on. It’s perpetual misery.
Connect2Care2022-03-18 at 3:35 AM
Inspiring content that every parents who have autistic child can refer through. Thanks for sharing.
Tired2022-05-02 at 12:14 PM
I’m so tired of people giving crap to the caretakers. As if our lives don’t matter anymore and we need to be servants to these awfully behaved children.
Maybe if a condition is considered one of the most stressful to deal with as a parent, and mothers of autistic kids have an EIGHTY PERCENT depression rate, and double the suicides – maybe that should be a wake up call that these children need to be in institutions and not shoved into parents who aren’t equipped to deal with this SEVERE lifelong disability.