(Inside: Dear Autism Moms… Please stop complaining about your autistic children… It’s harmful to your children and the entire autistic community. Everyone has bad days, but this post outlines why to stop complaining about your autistic children and what you can do instead!)
There’s a video circulating on Facebook with a mother in tears.
She tried to take her child to Sesame Street Live and was embarrassed that her 6-year-old autistic child was stimming while meeting Elmo and she saw all the “adorable babies” in line.
She cries in her car, on video for hundreds of thousands of people to see, because her son is autistic and that makes her life hard.
She cries that her son won’t be a doctor. She cries that even though her son is happy and safe, he isn’t the child she thought she’d have.
And she cries because if she dies before he does she doesn’t believe anyone will go to her child’s funeral.
Presumably, because no one would ever love her son enough to grieve when he dies.
This video went VIRAL. So many parents of autistic children have liked, commented on, and shared it…
“YES. THIS IS WHAT MY LIFE IS LIKE”.
And I get it. There’s a severe lack of resources for autistic children and their families. It’s scary to think about the future when your child may need lifetime care.
But I’m going to say something that may be a bit unpopular…
As an autistic person and a parent to an autistic child, I’m begging you.
Please stop complaining about your autistic children.
Please Stop Complaining About Your Autistic Children
Now, before you start throwing things at me, let me clarify.
I understand that autism is not always sunshine and rainbows.
I understand that parenting an autistic child (like any child) can be frustrating, exhausting, overwhelming, and downright scary at times.
I pinky promise I’ll explain what parents should do when feeling such big (and valid) feelings about autism and their child. Just hold tight.
And before anyone says “but you can’t possibly understand because you and your child are ‘high functioning’ which is totally different.”
I’ll ask that you kindly read this post about the harm in functioning labels.
The fact is that autistic advocates from many different ability levels agree… No one should publically complain about their autistic child.
Now that we have that out of the way, let’s get to the meat of it…
Would You Talk About Your Other Children That Way?
This is the first step to know whether what you’re about to share is over the line.
Imagine for a moment that you always wanted a child to become a doctor.
I mean, the whole nine yards. Dreaming about them becoming valedictorian and getting into a great college…
Going to med school… Choosing a specialty… You dreamed it all before your child was even born…
And then your child was born, struggled through school, and they decided that they never wanted to go to college.
Would you publicly shame your child for not being who you thought they’d be?
Would you cry in your car about how your child’s future is terrible because it isn’t what you wanted?
Would you assume that no one besides you would ever care about your child?
I don’t think so. And if you did, the whole world wouldn’t feel sympathy, they’d tell you to stop being so mean and love your child for who they are.
Parents are often careful about what they share online about their children, but for whatever reason, that line of privacy goes out the window when their child is disabled.
Parents share intimate details about their disabled child’s meltdowns, bathroom struggles, medical histories, and more without hesitation.
They talk about how their disabled children are burdens on them and make their life so much harder.
But parents don’t share anything like that about their neurotypical or able-bodied children.
So for your first rule of thumb, don’t post anything publicly about your autistic child that you wouldn’t post about your neurotypical child.
Would Your Spouse Talk About You That Way?
Now the next layer… Would your spouse talk about you that way?
Think about it… If a couple went to a concert, and the wife got overwhelmed and overstimulated, and she had a panic attack…
Then the husband posted a video on Facebook talking about how EMBARASSING his wife was and how hard it made his life…
How no one would love her because she’s different… How frustrating it is that he had to “give up” on his wife and her future…
No one would be on his side.
Many would call him emotionally abusive, and rightfully so…
If we wouldn’t want our spouse talking about us in a certain way, we shouldn’t talk about our child that way. It’s just basic respect.
What If Your Child Reads This?
Can you imagine reading this out loud to your child?
“But my child doesn’t understand”
They might one day, no one knows your autistic child’s future.
And even if they won’t, you honestly think that because they possibly don’t understand what you’ve said that it makes it okay for you to say?
Being non-speaking or intellectually disabled (those are VERY different things, by the way) doesn’t negate that person’s basic right to privacy, dignity, and respect.
The World is Watching You
This is one point that I don’t think many parents consider, but the fact is that the world is watching you.
You may be someone’s only tie to the autism community.
They may have never known any autistic people before knowing your child.
If you’re complaining about your autistic children online for the world to see, that’s the impression that those people have on autism and autistic people in general.
When you say that you don’t think your child will have any friends ever, you’re telling the world that autism makes someone un-loveable.
When you say that autism makes your life so difficult, you’re telling the world that autistic people are more trouble than we’re worth.
When you say that autism ruined your marriage, you’re telling people to fear autistic people.
Do you need to paint autism as rainbows and sunshine? Absolutely not.
But don’t complain about how it’s so terrible to raise an autistic child.
What Should Parents Do When They Need to Vent?
Now, as promised, there are ways to vent without causing harm to your child and other autistic people.
I get it. Sometimes you’re struggling and you really just need to vent or you’re going to explode.
So what do you do if you can’t go vent to the whole internet world?
Here are some ideas:
- Vent to your spouse.
- Vent with your best friend.
- Call your mom and vent over the phone (unless your mom isn’t supportive of autism and your autistic child!)
- Vent in a closed, private Facebook group of other parents who understand.
- Take yourself out for a Starbucks coffee to clear your head.
- Write about your frustrations in a private journal.
- Schedule a session with a therapist.
- Text with another parent of autistic kids you’re friends with.
- Grab lunch with a friend and vent about life.
- Get a babysitter and plan a date night with your spouse.
With any of those suggestions, please make sure your child is out of earshot and that you’re talking to someone safe.
Bottom line, there are plenty of ways for you to talk through your big fears and feelings when you’re frustrated with autism or your autistic child.
Going live from your car while crying about how terrible autism is for you, is not the right way to do it…
So please, stop complaining about your autistic children.
If you agree with this and you want a safe space online where you can learn and grow as an autism advocate, click here to tell me a bit about your situation and join the Embracing Autism Facebook Group!
If you loved this post, you might also enjoy…
- We Need to Chat About Being an Autism Mom…
- 25 Awesome Things About Autism
- Neurodiversity Doesn’t Exclude Your Child… You do.
- 6 Steps on Every Parent of an Autistic Child’s Autism Journey
- How to De-Escalate Your Child’s Meltdown When You’re Triggered
AUTISTIC READERS: The comments section on this post has a lot of hate and ableism, and many comments that are hurtful and/or triggering. Read with caution.
Parenting an autistic child gets easier as they get older. I don’t think parents so much mourn their children’s potential achievements as their potential lack of choices. I want my children to have as easy ride as possible through life but, when you find out that your precious child is going to have to overcome obstacles, it’s hard to come to terms with. Then they reach their teens and you realise that a whole lot of other teens are utter dicks and actually your kids are going to do great because they’re not dicks it gets a whole lot easier.
you say it gets easier, so your the voice of every autistic child, well you got alot to learn then, cause thats is not always the case,, many do not get easier an to say such a thing is completely wrong
Let the woman tell her story.
Don’t censor the woman whose video went viral about her view. Her concerns are real.
You are telling her to “tone it down,” and you are doing nothing to truly help, but making her (and other mothers) feel bad for having an opinion.
Please apologize to this mama (and all the other ones out there) for telling her not to speak her voice. You do not get to be the censor police.
So, all you parents who are reading this one: SPEAK UP ALWAYS!!! Don’t be swayed by this one writer’s POV.
What that mom posted about her kid was abusive. There are many ways to speak out about Autism; tearing your kid apart and shouting to the world that their life has no meaning is not one of them.
She should go to a therapist to work out her antagonistic feelings towards her kid. Not be a spokeswoman as a mother to an Autistic child.
She does NOT speak for me.
I love my kids.
She makes it SO MUCH HARDER for the world to accept my kids as they are.
I have to fight against voices like hers everyday, and it just seems like mother’s like her breed more and more hate for Autism everyday.
Abusive?!? This mother loves her child as any other parent loves theirs. She is sharing her love and concern for her child with the world. We all have concerns and with our autistic children, there are so many more concerns. We all want our children to be loved, to grow and succeed. Autism brings so many questions, so many unknowns. The world cannot see those or understand them unless they know someone going through it. His momma helps provide that. She is NOT complaining about her child. She is NOT abusive. For the love. Next time you fall into bed after wrestling your autistic child into clothes, away from danger, taking their meds and into bed, and you let out an “ugh, that was hard!” Let’s hope the mom-bullies are not around to bash you for complaining!!
Shame on you for trying to shame another autism mum. She shares the good, the bad and the ugly. She shares emotions and feelings that most of us keep buried and are too ashamed to admit to ourselves. She tells HER story. No one else’s. She is blogging about her life. No one else’s. How dare you make out like what she is saying is abusive. She has so much love for her child, you can see it in all her videos. Just because she had a bad day (we all do), and decided to share her story, doesn’t give you the right to bash her and make her out to be a bad person. She is anything but a bad person.
I smell sour grapes.
Yes. I agree with you
Have u actually rwad the complete article?
I believe u may have missed the bottom part
The struggle and frustrations need to be shared and spoken about, but not online for the whole world. Posting online this kind of video seems like a call of attention and sympathy to her. When deseperate and frustrated we need to vent but there’s no point posting online. She could have recorded the video and showed it to a close group of people who really and truly understand and are able to help. Venting and talking about the struggle and frustrations it’s not the issue here. It’s the broadcasting of something private to her and her son.
Im all for people letting the horrible truth of autism hang out. People need to know what a horrible nightmare it is…and how it wrecks lives and marriages. Not all sunshine and rainbows??? are you kiddding me?? understatement of the year!!!!! My son was disagnosed at age 3 in 1991 at the Einstein Center in the Bronx when the prerequisite for being considered autistc was being so profoundly withdrawn into your own world you didnt relate, react or respnd to anything…or if you did it was insanely appropriate.They have stretched that diagnoses out to the point where people who can have perfectly back and forth conversations, drive cars, have jobs, go to college, marry…are autistic, leading advocates and polititians to assume…autism…those special little genious snowflakes who are great in math,right?thats one reason services are so tough to come by.We’re no longer allowed to say….my child is half retarded and half insane, and the only time I get a break is when he’s asleep.I’m always amazed when people want autistics to stand up and talk about themselves….huh????if my son could walk into a room, look you in the eye, smile politely and start in on a coherant conversation I wouldnt consider him autistic.
Loving your child is no guarantee that you’re not abusing them. I’ve known people who have lovingly sexually molested their children, genuinely thinking that they were providing the kid with a positive sexual education. Their kids still have PTSD, no matter how lovingly they were abused.
Not sure when this was posted because I can’t find a date. Obviously the woman was overwhelmed. Amazing that this seems to have been missed. If she were calm and clear headed, she likely wouldn’t have posted it. But to say to someone essentially, ‘don’t be overwhelmed’ OR ‘make good choices’ when you’re overwhelmed, makes little sense to me. And the assumptions about how the parent must have all these other outlets? What’s that based on? Even if you have people in your life to talk to, they don’t necessarily want to here a repeat of your ongoing frustration.
I’m sorry, maybe your autistic kid is manageable. I don’t know. But nobody on here has any right to judge anyone about how they deal with autism. I don’t care if you’re the autistic person or your child is. Every autistic person is different. And I’m not sugar coat this. Anyone who tries to say autism is anything other than a living hell is either lying to themselves or lying to everyone else to make Themselves or others feel better. Raising a child with autism is a nightmare I wouldn’t wish on my worst enemy. It doesn’t just affect the parents and the child. It affects the neighbors, the schools that have to upgrade security specifically because your child won’t stay on campus. At FIVE years old. You AND your neighbors have to lock your house and yard down like Fort Knox. The police department knows your kid. Neighbors warning new neighbors about your kid. I love my son but I am not going to lie and pretend that any of this is pleasant. It’s a living hell and all I can do is pray it gets better. So far my prayers have been answered by the devil. I don’t criticize that woman for trying to take her child to see something she thought he might like. Maybe she didn’t handle it the way you would have but it’s not your kid. You don’t know her life. AND YES HER CHILDS AUTISM DOES MAKE HER LIFE HARD. Maybe Some of you people are fortunate enough to have an autistic kid that doesn’t make yours and everyone around you difficult and at times just plain awful. I’d go on some more but My son decided to smear his poop all over the bathroom wall and floor, so I gotta go clean that up. Hey! Maybe that lady crying in her car about how hard her life is bc of autism had to the same thing everyday for the last week. YOU DONT KNOW. Well, happy judging autism super mom.
My God… are you OK? I am being totally sincere – not at all sarcastic. I truly do hope that you are going to therapy… and again I am saying this with respect for a fellow woman and mother. I know living with an autistic child is hard sometimes- if it’s hard all the time- to the extremes it is with you and your family it’s past time for help. And I don’t mean for him I mean for you and your husband. Not just for your own sanity but for the literal safety and heart& soul of your son. Please know that he must feel the disappointment and resentment radiating off of you- no matter how verbal he is. I can promise you that feeling that off you or anyone else-he is soaking it up and not being able to regulate his emotions it comes out in pretty horrible ways. But the reality of it is that it isn’t his fault. And that’s what you’ve got to understand. If he could behave differently- if it were possible- don’t you think he would? Don’t you think if he could change anything that he would? simply to be liked by own parents? His own family? I don’t doubt your love for your son at all- I’m sure you love him and would die defending him. But that doesn’t equal liking him and you know that deep down. I know it’s true for me. Before I understood there were many times I just didn’t want to hang out with my son. I was so annoyed all the time! And I felt totally justified, too. So did my husband. And then I got it. It clicked and everything has changed. We still have bad days but I’m telling you- it’s night and day. He is. Well… nothing has changed with him. WE changed and because of his environment a lot of bad behaviors just stopped. He felt more understood because he was. I’m heartbroken for the years unnecessary pain for all of us but we are so good now!
PLEASE start talking to autistic adults. Follow on Instagram! Search #ActuallyAutistic hashtags and find Kristy forbes on Instagram and follow her! She will help you so much!! It’s just that you have got to change the way you think or view things. And autistic adults can help show you how…You will be so thankful when you do!!!! Best to you and your family!
That is the most passive aggressive thing I have ever read in my life. How dare you. Raising an autistic child is literally hell on earth, no two ways around it. Clearly you have bought into the sunshine and rainbows bullshit, but those of us out here who keep it real understand that this diagnosis is as good as a death sentence when it comes to your hopes for having a decent life and family dynamic. Do I love my kid? With the force of a thousand suns, but I would do anything… ANYTHING… to cure her.
I haven’t seen this particular video (don’t plan to, either), but I see a lot of this stuff on Facebook, etc. and I wonder if it’s not more a general problem of people seeking attention. I’m not a big “sharer” & try not to post things that are too personal, but that sure seems to be the way of the world nowadays. I didn’t like the sound of this article at first, but the trouble is wording & presentation. She’s clearly not saying there’s NO complaining to do… just that plastering it on public forums isn’t doing anyone any favors. There are lots of gentler ways to tell our stories and deal with our troubles.
Hun. Read her suggestions again. I think you’ve misinterpreted.
No need to apologize for anything there .. Beautifully written!
The author succeeds at protecting a child from an overreacting mother by giving heads up to that Mom where she errored. A video complaining of your child is a bad way to get the attention the mother obviously needs.
The mother had genuine feelings she was sharing- she wasn’t overacting, she has every right to feel frustrated and vent…
I am the mother of a severely autistic child – and this life sucks – I belong to a support group where we share it all. We talk about the things the HIGH functioning authkr.doesnt understand-tell me that if I vent about my son fecal smearing, would it be overreacting to vent and talk about it and share? NO it would NOT be. You and the author should live a day in the life of a SEVERE ASD child – you wouldn’t know what to do. It would be the shock of your lifetime, believe me. I’m a teacher and mother of a severe ASD child – and even as a teacher, I had NEVER seen the severe side until my son, now 5, regressed. The mother making the video had every right to vent and talk it out.
Critizing disgraceful, toxic content is not “censorship”. Censorship would be to try to take it down, removed from wherever it is. If the mother had the nerve to publish that content, she should deal with the consequences!
She’s human with rough life circumstances that broke down and reached out for support in a moment of weakness.
Get off your high horse.
Uhhhh…..Kaylene did not say one thing about “toning it down.” She said, in essence, there is a time and a place to air/vent/ grieve the things that parents of kids with autism have a right to air/vent/ grieve. And doing it openly and publicly on the Internet is neither. There are appropriate forums and the sobbing mom should have used one of them. May I ask….do you parent a child with special needs?
If you’re making excuse for an Autism Parent that clearly hates their child, then you’re a crap excuse for a human being.
Also, criticism is NOT censorship. Learn the difference.
Clearly hates her child?! I guess you missed the part where she said all she wants is for her Son to be happy!! Stop shaming someone for sharing Genuine valid emotions and sharing experiences that she’s finding hard. The moral police don’t get to decide how other people deal with difficult emotions. If sharing experiences and their feelings online helps them find relief so they can keep moving forward and cope better, then so be it! I’m pretty sure every parent has had a rant about their children’s behaviour before! everyone struggles and we all do and say things in the heat of the moment when tired, unhappy or stressed. Does it mean we love our children any less?! Absolutely not.
If you’re not in that persons shoes, don’t assume you understand their life and what they are going through.
Hates her child?
My son is severe ASD and I often need to talk or vent, and I absolutely detest autism, and the things autism does to my son and our family, but in no way does that mean I hate him.
Tell me something…
Do you have any experience with severe autism? And how judgemental of YOU to not listen to the lady, if you had you would have heard how much she LOVED her child and was saddened that he would never have the things average kids will.
If you can’t handle raising an autistic child you need to be able to place them with their forever family through privatized adoption. Anything else is cruel to the child and parent. But definitely not in the child’s best interest. Not every parent can handle it. Everyone is coming from a different perspective.
How could you find a family willing to take your autistic child? Like, there is an out?
There are plenty of loving families out there that can treat an autistic child as a human being instead of a broken toy.
You are actually disgusting
Thank you.
I’m struggling. It’s hard. I want to scream and cry, but these comments make it feel like I can’t.
I also want what’s best for my autistic son. I’m doing handstands trying to parent, and I am so fearful of being judged or shouted down when I meltdown. I’m doing my best, but it is hard. It is different.
Hey, im a teenager with autism and i find this mothers viral video so offensive. If my own mother cried on camera because i was a burden, i would practically want to die. Its humiliating, and shaming your OWN child for being BORN neurodivergent? Most autism mums disgust me. From an autistic child’s perspective, and my other neurodivergent friends, they are delusional and don’t care about what their actual children think, and someones identify shouldnt be ‘my child is autistic.’ as minors, we do not want to be seen as tokens or things for our parents to control. We want to be treated accordingly to our autistic tendencies, but not in a way that disconnects us from the rest of the world. This article is good – that woman that posted that video deserves to be called out for her mistakes.
Thank you. I am an autistic adult, I avoided the Autism world for a long time because I could not cope with how many times I felt hated by some parents. I know I am not easy, I know I am difficult. I know I am inflexible. My family couldn’t cope with me anymore living at home and I now live in supported accommodation. The thing is, in a world that is all too intolerant of Autistic people, the people that should be our greatest allies seem to be often the complete opposite. People don’t seem to understand either that we may not see things in the same way, we may live in very different ways, we may not speak with our mouth parts….but we do know. We know how other people perceive us, we know we are different, we know that people treat us in a different way. People may well read this and say “your not like my child or ‘You’re too high functioning” (both of which are irrelevant, it’s a judgement based on typed words, they don’t know me and even if those things were to be correct, they do not make my words or the other person’s child’s experience any less valid) but some parents need to think about what they say and put out there.
Thank you for writing this. I’m apart of many autism parents FB groups and I’m getting tired of all the parents playing victim to autism and crying on their public pages about how their children are a burden. I really needed to know that I’m not the only parent who feels this way.
Agreed. Your own attitude is half the battle. If you can love and accept your child as he or she is it will show through. Spend some time in their world. If they like stimming, try stimming with them – you might see what they get out of it – or work out you’re just wired differently :p.
Then don’t be a part of those FB parents groups. All your statement tells me is that you don’t have any clue about the life behind severe autism, so you shouldn’t belong to a group for low, or lower, functioning ASD people. If the people in those groups knew how you feel they wouldn’t want, or feel comfortable, having you as a member. So do both a favor – drop out of those groups so those parents can vent and talk and not be judged by the likes of you. And then you won’t feel uncomfortable or have to listen to these people either. Win – win!
Okay, but where else can these people vent? Would you prefer they tell a family-member and have it get back to their kid one day?
It wasn’t that long ago that saying ANYTHING negative about parenting was taboo. If anyone lets on that raising their kids isn’t all rainbows and precious moments and is sometimes downright demoralizing, other people automatically assume that the venting parents are terrible, ungrateful and hate their kids.
People vent about their parents, their spouses, their siblings but no-one judges them harshly for it.
WHY can’t it be acceptable to vent about your children??
Look, having kids makes life harder as much as it makes life fulfilling.
There is something that I can not understand why my autistic child ruin things (e.g., cutting mouse wire, toilet light’s pulled switch, throwing android tablet from third floor flat, peeled laptop’s keypads, smashing laptop’s screen, rip trousers intentionally, etc) and waste things (e.g., squeezing new tube of toothpaste, shampoo, bath-gel out until empty, etc).
This sounds like lack of impulse control (can’t pause to think whether or not things should be done when angry) and seeking sensory input. Ripping fabric is an interesting sensation, so is squeezing out toothpaste or shampoo. You might be able to substitute sensory toys for some of the more valuable items, move all the scissors safely out of reach, and try some therapy to help your child learn the skill of pausing and foreseeing consequences before acting (warning, this may take a long time to be successful for anyone). Hang in there. Try not to feel hurt when it happens; your child likely isn’t trying to cause you distress at all – they just are blind to the consequence of their action.
Every parent has a journey that is uniquely their own. My daughter is highly functioning, ADHD, epileptic and ODD. My ex was totally out of the picture even when we were married cuz it’s easier for him that way. I take offense to the complaining comment by author. Life isn’t all Ozzy and Harriette and going in alone, fighting with LE teachers and school admin. Is hard. There isn’t any manual to child raising. Parents complain about all their kids at any given time, even the ones who don’t have issues. I’ve treated my oldest the same as my youngest and guess what…her counselor said my daughter is learning empathy which is surprising to her. My oldest has her DL and when school thought she couldn’t do it I said she’ll fail like any other child. So I believe in open and honest communication and inclusion vs segregation. My daughter knows she has some hurdles to overcome due to her autism but not coddle them cuz life won’t coddle them and how are you preparing them for when your gone. That’s how this mom of autistic feels and don’t judge cuz we each have a path that’s different from each other’s.
There is nothing wrong about a parent complaining or feeling sorrow for their autistic child. Life is hard. It’s very hard for people who have no issues. The more issues you have (like autism) the harder and more difficult life becomes. Parents want their children to have easier lives than they did growing up. I know I did. Life will chew you up and spit you out and the more issues you personally have the harder it will become to handle life at its worst.
People with autism will have greater struggles in life. Parents dont want that for their children.
And yes, lets be honest here, if you child is severely autistic, then yes they are a burden on the parents. I have two children with autism. One more severe than the other. And yes it is a burden. A burden I have to carry because they are my children and I love them, so I am sacrificing my time, my life, my goals, and my hopes so they can function. If my children were not autistic then that burden would not be there. They would grow to be self-sufficient, self-reliant, and individualized on their own. I would not need to give up my life and my energy for their constant care and well being.
So if you are a parent with an autistic child, and you want to complain …. then go ahead. Don’t let anyone tell you otherwise. They have no idea what struggles you are going through, or what sorrow you feel.
I am a parent of a “severely” autistic adult and HE IS NOT AND NEVER HAS BEEN A BURDEN and I presume competence (as we all should for anyone with serious communication challenges), it would break his heart to hear me say something like that about him.
He is a blessing and my teacher in life, just like my other children.
Wow way to shove it down someone’s throat. Does that make you feel better to use capital letters. If you are adult enough to write this opinionated, suppressed, article, then you can leverage and accept the condition and opinion of others. Walk a mile in someone’s shoes before you start judging
You can express these things without traumatizing your child. See a friend for lunch, hire a disability-friendly sitter and don’t burden your children with this.
Complain if you must, but there’s a time and place for everything. If you’re frustrated with your child, talk about it with a friend, spouse, counselor, support group, etc. Don’t blast it all over a public media space. Stuff posted on public media spaces never goes away, and can come back to haunt someday.
Hear hear!!!
You make money off your child’s Autism, but have the nerve to try and shame another mom. Take a seat.
“Making money off your child’s Autism.”? Surely you jest.
ANY child COSTS his parents a great deal of money [“For a middle-income family to raise a child born in 2015 through the age of 17, the cost of rearing a child has hit $233,610, according to the report.”] But: A child with autism? far more than a typical child. (My son’s therapy just from age 2 to 6 was not reimbursed by insurance and cost us the equivalent of a house or a college education –at Harvard!)
It breaks my heart my son will never take an SOL, SAT, or go to college due to his autism…it is a REAL DISABILITY. Is that “complaining”?
my beloved will never get a driver’s license, marry, father a child, hold a job for pay or live independently or understand history or historical figures like MLK,JFK, FDR…NONE of them. We’ve tried. His reading comprehension is not even at a 1st grade level.
Toddlers talk with more understanding and comprehension than my son does. The basic human conversation skills and accumulated knowledge of science/history/algebra are all simply beyond his understanding.
He is the sweetest boy in the world and I adore him. He is now 6’5″ tall but sees himself as a very small child so he can scare small children, as he is still wanting to play in the sandbox or baby pool and playgrounds . He still loves Elmo. He sleeps with a stuffed animal every night (and I could use one too).
I can think of nothing more painful than a mother of a child with autism hating on/lecturing and judging another mother of a child with autism because SHE has a different ways of coping with life’s challenges. SO this is not that.
You KNOW autism, as WE ALL know, IS A MAJOR CHALLENGE. Especially if your child is severely affected, AND UNABLE TO SELF ADVOCATE, he needs a translator, i.e., his mom, his primary caregiver.
You could choose to cope in the way that helps YOU and your child without hating on another parent and HER CHILD.
We are all just doing our best here.
To be so disrespectful of another’s choices on how she helps educate the world on the MANY FACES of autism, and those who love them… yours, your child’s, my child, Cooper’s mother, me… we all have the right to feel how we feel and share what we feel comfortable sharing as THAT CAN HELP OTHER FAMILIES. People NEED people.
We’re all different. If what you have is “autism” (it does not meet my definition as you are able to write this article, marry, have children)… then that is not in anyway comparable to the kind of autism my son has and Cooper has.
If somehow you are not suffering fears and worries about your child (the one with autism) in the future COMPARED to typical children, then you are both zen and lucky indeed.
But it is wrong to disparage those of us who are not so fortunate, we have very real concerns about the growing epidemic of autism…YES it is an epidemic even the CDC admits it is NOT just “better diagnosis”…. SOMETHING in our environment is hurting our children’s brains and the result is an epidemic of ADHD, autism, allergies. THAT is NOT up for debate.
YOUR brain may be fine just the way it is, but something happened to my healthy, typically developing baby boy and he got seizures and lost words, started toe walking, got a horrible rash, allergies, and regressed into full blown autism… a neurological DISORDER. Not “just another way of being” but something terrible happened to him that hurt his health and his ability to learn
I do not speak for all mothers or autistic individuals, but only for myself. But ALSO for my son, because HE CAN NOT.
And it is hard enough to speak up, to blog, to share our experiences without OTHER MOTHERS and other people with autism ( who are ABLE to speak out for themselves) telling us we should NOT “complain”? Cooper’s mother should keep her feelings to herself?? Autism is suddenly a disqualifier to be a mommy blogger or vlogger?
ALL MOMS “COMPLAIN” . ALL PEOPLE COMPLAIN. It is part of human nature. Just as “behaviors” are. It is an insult to “momsplain” that behavior is communication. We all know that from the moment of birth when crying means hunger, fear, loneliness. No kidding.
Telling a specific mother she is not “allowed” to “complain” is very, very wrong. And mean. Please reread and rethink your comments–incredibly hurtful to mothers who are are already struggling and doing the best they can. Every day. Some days better than others.
WWJD? Pile on? or comfort someone in pain?
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You are proving the author’s point. There is no “epidemic” of autism. You’re just bitter and selfish, thinking your feelings matter more than autistics like me. Just stop it.
Complain out of earshot of your kid who has no way aboiding this on his own. Have you worked on non-verbal communication skills?
I dont agree. Shaming others is always wrong. Shaming other people pain and how they express it is wrong. Let it be.
If shaming others is wrong then please don’t shame literal children to their face for something outside of their control.
This is the most selfish article I’ve ever read. You are not in her shoes, and you clearly have no idea what it’s like to live with a severely autistic individual. If you did, you wouldn’t suggest going to lunch or Starbucks or therapy or on a date. Because parents with severely autistic children don’t get to do those things. You are causing harm publishing ridiculous articles such as this.
This article should be taken down. It is offensive to parents that struggle every day. Obviously she has never had to walk in the same shoes as the other parent but will judge her anyways.
Stop judging others!
Wow, Kaylene, such a great essay! I’m not a complaining mama, but your litmus test for what to share will stick with me long-term. Thank you for such a thoughtful resource and such great ideas. I’m already a member of the FB group and I really value you.
This article could have been written without refering to Kate and finding coopers voice. It would have been a opinion and that is ok. You are saying that she “shames” her son, so what are you doing then? Dont be judgmental to other autism moms, that is just wrong…
Pointing out to an adult what they are doing is harmful is different than unintentionally harming your child repeatedly.
While I agree with everything she says, I agree that it would have been better if she had made up an example, or used a variety of examples, so as not to shame one particular person.
I have not complained for 30 years. But now… I am. I am full of fatigue, no energy, and have lost all joy in my life. I am a dew drop on a leaf… evaporating into thin air. I have given more than my all into the depths I did not know existed. But there is no more…
Wonderful article. Thanks for writing it. I’m really shocked at these replies you’ve gotten. There is this thing called Personal Boundaries, and the mother in the video and all these commenters defending her, don’t understand what that is. It’s unbelievable to me how selfish these women are. I feel like I’m getting a peek into my own mother’s thought processes. Yes, I am someone who was treated as an inconvenience and a burden–for 50 years. Then I went no contact with my mother. And your children will, too, if you continue to publicly talk behind their backs and criticize them. Autistic people are HUMAN BEINGS and deserve to be treated like it! You commenters are nasty, horrid people if you think it’s all right to vent publiclyabout your disabled children. We’re not your pets, we’re people, and we deserve privacy.
You went no contact? Really? Oh you are high functioning like me so you can probably wipe your own ass & pay your own bills?
Guess you don’t have diapers you have to change on your own? Do you put on your own helmet before you start bashing your own head into the floor & put on your own gloves so you don’t bite your hands bloody?
Do you put your own clothes on before you wander outside in below freezing temperatures?
GOOD FOR YOU!! You are not the autistic person mothers grieve for anyway.
“You are not the autistic person mothers grieve for anyway”… What an horrendous person you are, I bet you’re an abusive parent. I feel so sorry for your child(ren).
I am really confused by the attacks and accusations on other parents of children with autism in this article and in some of the comments as “trying to monetize” their child (an abhorrent concept and characterization of one mom trying to help another)… especially when I read this:
*This blog is a participant in the Amazon Services LLC Associates Program, an affiliate advertising program designed to provide a means for us to earn fees by linking to Amazon.com and affiliated sites. Occasionally posts contains other affiliate links as well.
This article should be taken down. It is offensive to parents that struggle every day. Obviously she has never had to walk in the same shoes as the other parent but will judge her anyways.
agree, 100%. Talk about kicking people when they are down. What is even more upsetting than the “article” (not an article, but opinion piece) is that it has been shared 20K times … it is great to support a person w/ autism’s SELF-advocacy, but spreading hate and disinformation that ALL autism isn’t a debilitating condition, is not a medical mystery to be solved ?
That is wrong. She should clarify that this does NOT apply to “level 3” autism, the most severe, as the DSM does.
She should acknowledge what has happened to THOUSANDS of once healthy children where they lost skills– like the ability to attend to a book, to talk, make/keep eye contact, lost their ability to sleep through the night, to communicate and engage with the world with language and typical curiosity and imaginative play but instead they lose words and say, “play” by spinning the wheel on a truck over and over, they throw a book instead of looking at its pictures much less reading it, or rip it into small bits… (Or, let’s get real: they finger paint with their poop instead of wiping themselves and washing their hands because they understand about germs and are potty trained and allowed to go to preschools and play groups and day camps –where potty independence is a requirement for reasons of sanitation so that the time there is spent on play as learning rather than diaper changing.)
The author makes false, broad generalizations and assumptions that shame hard-working, loving parents of “level 3” autism as well as “level 2”, parents who NEED SUPPORT and are only desperately trying to teach their children basic life skills that other, typically developing children naturally learn. Such parents need EMPATHY and UNDERSTANDING and HELP raising our children with special needs and extreme behavioral PROBLEMS (YES, it IS a problem if they hit you so hard it knocks your teeth out… it is “complaining” to want to keep all your bones intact, your teeth rooted? WHERE does such heartless criticism come from?? A LACK of empathy. A common symptom of autism, btw; we’ve spent countless hours trying to TEACH empathy and it is very hard to teach.
I suspect this entire, offensive, tone-deaf piece was published only as click bait.
Yes, in an ideal world it would be edited to reflect that vast differences people with autism can have… but it was not because bigotry is alive and well–even it turns out in a community that should have sympathy and understanding for the many different faces of autism.
ASD is called a spectrum for a reason. But the difference at the two extreme end points hardly look like the same condition. It would be a miracle if my son could learn to express himself as people with Asperger’s do. But my son cannot read nor understand offensive opinion pieces like this nor the “supportive” “great article!” offensive comments that belittle his autism as something not real, something that exists only because I want something to complain about.
I’d give anything, painful as it would be, for him to be able to read even this BS and respond himself as to how messed up it is. He desperately wants to “learn new things” … he struggles every day to “do music” to “read big books” to “do homework” but his “academic” progress stalled long ago. His inability to hold a conversation, to flirt with girls his age, to be a peer rather than a child to girls he has crushes on, to his cousins his age… it is heartbreaking.
I’m not “complaining” about this; I’m broken.BROKEN. And he will outlive me. WHO will love and care for him after his father and I are gone? His sister? It is a full time job and what about her OWN career? Is she not allowed to have one? Will she have to quit her job as I did to care for her brother or will she find an institution or supervised group home where he is happy? Autism IS AN EPIDEMIC and my son is not alone in his need for a lifetime of care. There are thousands like him, being diagnosed every day.
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You say your son will outlive you, and I have to break it to you: that might not be realistic worry for your son. The average lifespan for Autistic people is 36–38 years (Joseph & Guohua, 2017). And it’s shorter for Autistic with intellectual disabilities. One of the leading causes of death in Autistic people is suicide. I will trust that you are right that your son will never read or see the offensive videos and articles the author is condemning. But his cousins probably will. The girls he wants to flirt with. The people who mistreat him will take ammunition from articles and videos talking about the hell of Autism, and that’s all it will take. He doesn’t need to see every word you’ve ever written to get the idea from someone who’s read your work that there’s a part of him you hate and want gone forever. I sincerely hope you are able to shelter him from that, but I need to tell you that it’s not guaranteed, and even if it is for your son, it’s not for every Autistic child. That’s why she’s asking for privacy, because while I hope to god that your son outlives you, statistics say that someone else’s Autistic child won’t.
The first time I was hospitalized for suicide, I was eighteen years old. In the ten years since, I’ve averaged two hospitalizations a year. I know what I’ve talking about with the mortality rate. I haven’t made it to 32 yet, and I’m very lucky to have made it this long.
I see both sides of this. I try to post very little about my son in a negative light, because I don’t want people to view him as a monster or hate him. But last night i posted about how exhausted I was (on my private page) because of being sick and him raging, and I don’t regret it. Several parents messaged me and said they were glad to know others were struggling. It is exhausting living with a full grown man with the IQ of a toddler.
I used to follow the blog of a woman who filmed her son’s rages. Now that I’m dealing with the same, I am so glad she put his struggles out there, because she shared tools that greatly helped my son.
I wish the term autism wasn’t so broad. Your autism is NOTHING like my son’s. There should be separate terms for such extreme ends of the spectrum. There is nothimg wrong with that mom sharing her story. It’s real and it’s raw. There was no hate there, only love. I accept my son fully for his differences, but sharing our stories gives others a glimpse into our life, and can encourage policy makers to fund programs for the disabled. Don’t shame her story.
If it’s something you’d be willing to share about an NT child, sharing it about your autistic child is likely not a problem and not the phenomenon that this article os describing
My son is profoundly autistic and has been through unimaginable struggles. I would NEVER refer to him as a burden. He is my best teacher. I will continue to support him in his journey and do what Mom’s are suppose to do, put my child and HIS FEELINGS first. It would break his heart to hear some of the things these parents are saying about their own children on Social Media and it breaks my heart for all autistics who do see this hate speech. Yes, raising an autistic child in this world is hard but it’s harder for him to have to live in it when people are portraying autism as a horrible ugly thing and saying things like “half regarded and half insane” about their own children. Breaks my heart for those beautiful souls that have to live without unconditional love.
As an autistic woman, I am appalled by the comments defending the public posts about autistic children. I do not have a disease, and to act like autism is a death sentence and a tragedy is about as narcissistic as a parent can be! So your child isn’t going to be a football star or a cheerleader. Big deal. Why don’t you self-righteous, toxic parents support your autistic kids and let them be themselves, rather than complaining about how horrible your life is? Stop whining and grow up.
have you ever met autistic children at the “level 3” end of the spectrum?
it is indeed a “big deal” trying to raise and educate them. And EVEN IF WE COMPLAIN that does not mean we are not “supporting” them 24/7 because WE ARE. Just as your parents supported you. I promise you, they did their share of complaining as ALL parents do, even those with “easy” typically developing children, because I have one of those too and YES, I have complained about her too.
Parenting is hard. That is not “whining” that is a fact.
Melody, your comments are completely lacking in empathy and understanding. That is your autism talking. Do not take this personally, but do stop insulting hard working parents. None of us are perfect but clearly your social media skills need improving because you are trolling the wrong people: advocates for improvement in autism services, education and support…services which you could benefit from if you honestly cannot see how mean and misguided your insults are.
I am an autistic adult (of the drive a car, have a job ilk ;). And I work with all ranges of autistic people. There are a few incorrect assumptions I want to point out from this comment and also from other posters in this thread.
1. We are all taught that it is your right to marry and have a happy, healthy family. The truth is this isn’t always possible. If you choose to have children, you are opening yourself up to having a whole range of children and this really should have been made clear before you start. That way, the “disappointment” wouldn’t be so great.
2. Autistic people are not capable of empathy. A study was done looking at ability to empathise between: Neurotypical- Neurotypical people, Neurotypical-autistic people, and Autistic-autistic people. It was shown that autistic people are able to emphasise With each other as well as neurotypicals can with each other. The only difficulty comes between neurotypicals and autistics. I would suggest that the apparent lack of empathy is simply an autistic person being wired so differently they find it hard to relate to the needs and expectations of a Neurotypical person. Add that to the fact they don’t have an understanding role model – someone who is also autistic helping them through their difficulties- and you end up with someone who appears to have no empathy whatsoever.
3. That being able to string sentences together means the autism is easy (or indeed that it’s not even autism as stated further back in this thread by someone). AS someone who’s autism was so hidden I wasn’t even diagnosed until 31, I can tell you it wasn’t easy for me or my parents. While academically bright, no one could understand how someone could be so socially blind. I was badly bullied and excluded, did not know the difference between someone coming to help me or bully me, and had meltdowns. (I could go on but would rather not expose my life online (thankfully I have that prerogative as my parents have respected my privacy in the matter). I believe it is the reason I am now for the most part estranged from my sister. That said, a lot of these difficulties arose not directly from the autism but because of the lack of understanding and awareness of it. I was excluded for being different, “rude” “annoying” etc.
4. This article is saying you shouldn’t complain, vent etc. Yes, vent, complain etc but not on the internet to strangers.
How would you feel if a parent of a child with cerebral palsy went on the internet and unloaded all the “ills” their child was doing to them. “ I took my child to Disney land and all the other children were running around, while all my child did was slump in his chair and make a whining sound in front of Mickey Mouse!” It’s offensive, right. At the very least, it comes off bad on the parent. The message isn’t “you’re such a bad parent for having these thoughts and needing to say them, but rather a gentle reminder of the power a parent has over their child, and also when representing autism as a whole. If your aim is to show people the ugly with the good, firstly I’d consider if your child is happy for their lives to be on the internet and then I’d make sure to explain in a cut that you were having a though time and that your feelings, while valid, don’t represent everything you experience with your child.
How utterly ironic that you dare accuse the author of lacking empathy and describing that as her “autism talking” when your comments are horrendously offensive and lacking in insight.
For people posting that ‘High-Functioning Autistics are nothing like my kid’- sometimes they are. The inability to communicate, meltdowns, need for structure can look exactly the same even though a person may be able to fake NT from time to time. When a parent has a ‘sometimes NT-ish’ child, they still can’t find a carer capable of managing the needs of their autistic child – because meltdowns happen and sensory and structural needs are still there. NT society blames the child for not keeping NT more often, and the parent suffers scorn for somehow ‘ruining’ the chance their child could be ‘normal.’
Do you need support as a parent of a child with high needs? YES! So much! You are always ‘on’ without many of the so-called rewards of parenting. You very likely need MORE support than I do, and that’s valid! But my child needs to be accepted for what he can and cannot do, for how his brain is wired differently just like yours needs it. And they both need it 100% of the time, not just when they can act NT and not just when they are in a wheelchair or ‘obviously’ disabled.
I both agree and disagree with this article. Autistics should be treated with the dignity of every other person, including speaking about them in a public forum. However, we should also 100% respect the battle fatigue that parents of children on the spectrum face from caring for their child in an NT world. They are shunned by society right along with Autistic people. Parents are suffering, after learning a whole new way of interacting for their child, and fight after fight to advocate to get their child’s needs met. Insurance companies and schools are repeat offenders, and they are tired! If we don’t allow the parents to speak their needs, how will society at large know the damage it’s inflicting on people who are already under stress from adapting to an entirely new way of life? How do we expect autistic children to get the kindness and understanding they need while the world strips the same from the people caring for them?
Sorry as a teacher I have to jump in here. Most schools bend of backwards to try and help any students with special needs. However there are real limitations to what can be done in a classroom with students. When I have 27-33 kids in one room it is basically impossible meet the needs of every student let alone the students with austim. Kids who missed chucks of schooling for different reasons, kids going through family crisis, kids with other learning difficulties. As well as a basic high school classroom ‘typical’ kids range 5-10 years of developmental ability. If you divide my day each student would be entiled to 1.30 mins one on one time. I have never had a student with any kind of special needs which dont take more then their fair share of individual help which does mean other kids do miss out and individual help that they could use too. Often manging some of the austic students I have had takes about a quarter to half of your time/energy in some lessons more. And I have yet to have a single class without a child with austim most have several. The highests I have had is 8 in a mainstream class of 29 students. And several of their parents complained about them not getting enough individual help/support. There is literally only so much time in each day. I do my best but there is only so much I can do. So given that min 25% of ‘typical’ kids have other speical needs. I dont have the time to teach them based on their particular interests. Even if I tired too there is not enough time to plan lesson for every child like that, and some days after having a child have a melt down and everything else you had to do after teaching all day without a break you dont have the mental enegery left to spend hour to spend thinking of how Jonny would do better if I could link this concept to his interests in sea life. This is is why half of all teacher quit within 5 years. Beacuse its impossible to meet everyone’s needs/expectations in the system as it is and we do get frustrated when parents don’t seem to realise that their kid would get more time/support in a special education unit then we can ever give in mainstream class. Esp for some lower functioning kids eg non verbal.
Agreed I work in a school too and you can find yourself fighting to get the support required for the children you work with. The problem here isn’t the teachers, most of whom are going beyond duty for the children. The problem is more system wide (she did say school, not teacher, but it’s likely the problem is broader than that – to encompass the whole of state services)
This was so clearly written by the parent of a high functioning autistic child. It’s so interesting to me that the only people who complain about functioning labels are either high functioning themselves or have a high functioning child. Functioning labels are necessary to differentiate between people on different areas of the spectrum so they can get their needs appropriately met. I am a high functioning autistic woman and I have a high functioning autistic child and a severely autistic learning disabled child. Their needs are vastly different. Forcing their disorders in the same category isn’t helpful to anyone.
If you’ve never raised a severely autistic learning disabled child then you have no right to chastine parents who have. You don’t have the relevant experience.
Amen!
What you are saying but you do not realize yourself, is that autism isn’t the issue. The severe learning disability is the issue. So stop blaming autism when autism itself isn’t the issue.
Signed, an autistic. I don’t work, i don’t drive, i shower once in a blue moon and i’m happy. I need help as all humans do, not the same kind of help as most humans but there is no shame in that. I’m not a burden, i am a valuable part of my family.
Autism is not the issue. Ableism (yes, even from parents…) is the issue.
Co-morbidities ARE THE ISSUE.
This article is a bit ridiculous. While I agree that someone publicly shaming their disabled (or even typical) child is a disgraceful thing, what you are describing sounds more like the mom had a mental breakdown. It sounds like she had a hopeful day planned out for her kid, felt that he was ready, and couldn’t wait to see his happiness, then when it went downhill it really sunk in how bad his disability is and she felt that she had failed him.
This is far different than a mom who makes a public facebook post showing their neuro-typical kid with a shaved head because they flunked a math test or dyed their hair green at a friends house.
Oh and “Just go to a Starbucks” LOL! Ok. You obviously have free babysitters at your disposal who are trained in special needs care. Yeah, I bet.
Right on! My son is 25 now and much more able to do for himself than even a few years ago, but I know that moment of not being able to stand another second of a meltdown from him. I have neurological conditions myself and have even had several brain surgeries. The first six years of my son’s life nearly killed me. My husband disappeared into his work, and I had another child who needed me as well. I would not relive it for anything, but I’m relieved to say that it has become easier since he’s older. He struggles with communication, which leads to most of his meltdowns, but they are rare now, and with his improvements, my health has improved in some ways, too.
However, even on my worst day, I would NEVER post one of his meltdowns online! I have had many “F U, autism!” moments, but I know he’s even more frustrated than I am. He also deals with Chiari Malformation and Red Ear Syndrome. Google them. They’re horrible. While I also have chronic pain, I can’t fathom his. I will always love him from the depths of my soul, and I certainly get the frustration, but yeah, please don’t post meltdowns. Not cool. No matter what, our kids deserve dignity and respect, even in our worst moments.
Although there are some common sense advices in this article, this author clearly doesn’t have a child with severe autism. Her comparison of a neurotypical child that didn’t turn to be a doctor shouldn’t be mourned as much an autistic child not being a doctor is ridiculous and evil. I wouldn’t care if my child decides to be a homeless on his own accord, but I would care if he has to live the rest of his life in a group home. Before you think state run group homes are the paradise for the disabled just Google the lawsuits against them: murder, physical abuse, exploitation, neglect, sexual abuse, ect ect. I”d have to be a bitch not to mourn a future at the mercy of strangers
This is the most ass backwards post I’ve ever read. Yes, any parent would complain about any child and we do! We also complain about our spouses. Suggestions to keep this inside is ridiculous, harmful, unhealthy, crap advice.
If you have something to say to Kate, say it to her instead of bashing her. You must ignore her posts where she cheers on her children and shows her son’s accomplishments since you’re only talking about her being upset.
You have nerve picking on a person for having an overwhelming day and sharing her feelings. Feelings that others relate to and thanked her for sharing so they don’t all feel alone. What makes it so different to talk about it in private versus on social media. Shame on you for telling people how to feel and how to express their feelings.
Whoever wrote this article you’re an idiot. Saying you wouldn’t say these things about your normal child why would you abut the one that is autistic. Well, bitch, because the normal child can do the most basic things in life. He can go to the bathroom on his own and even though he didn’t go to mes school he still has the possibility to think of what he wants his life to be. THE MOST BASIC THINGS IN LIFE. don’t compare. It’s not the same.
Yeah, we don’t deserve equality.
Totally agree.. and @TMDH, if your autistic you definitely don’t fal into the same category as severe since you could type that comment all by yourself and can form words and express them.
Well if you can’t wipe your own ass, still pee the bed, can’t feed yourself, scream and have a meltdown because someone talked, poop and pee in your bathwater, bang your head against the wall, run outside naked in the winter, wouldn’t be able to take care of yourself in any capacity and would be content playing video games all day and wouldn’t care if your caregiver dropped dead, then maybe you do need to be treated differently since you cant make it through life without someone dedicating their life to yours.
Waaa waaa whine. When you are crying and saying stuff like that it means you feel defeated and at a loss and wish things were easier rather than accepting that your child’s differences make them unique. They say they love their kids but it’s conditional. They don’t love their autistic children or else they wouldn’t abuse them with forced ABA therapy. But not too worry. There are tons of autistic groups where non-autistic parents are not allowed and the the kids will finally feel accepted.
I don’t get all you parents who wish your kids were different than how they are. Our little guy is absolutely perfect and exactly how God intended him to be. That’s how we treat him, that’s how we talk about him, and that’s how we expect the world to treat him as well. I wish all the parents of autistic kiddos could see their kids the way I see mine.I wouldn’t change him for the world.
Would you care if he wet the bed and poops in his bathwater, cant talk and doesnt understand what you are trying to express, runs out in traffic, doesnt understand that certain things can hurt him or others, pushes children off jungle gyms?
WOW, so many ableist and abusive comments from “autism moms” who have NO idea what autism actually is. All you know is what you see in others. You have no idea what it is to live it. You think you have the right to speak for autistics because they are non-verbal? WRONG! They can still communicate, you just aren’t listening. Most of the comments here mention things that aren’t even autism-related. You should have SOME idea of what autism is and what it’s not, but it seems like you’re making up your own symptoms because that’s how YOUR child is. Sorry, if your child has an intellectual disability, that’s NOT autism. If your child doesn’t have an intellectual disability, they can understand EVERYTHING you say! Yep, everything. High and low functioning? No such thing. You mean high and low masking. That just means that autistic people have no worth in society unless they can mimic neurotypicals. We’re not allowed to be ourselves because we embarrass YOU. Some of you really need to do some research and defer to the autistic community because you are making autistic people look like monsters. You are the reason we are bullied, treated poorly, dismissed, unable to get appropriate services, unable to get employment, abused, and even shot by police. If you love your children you will change how you see and treat autistic people. Anime you wonder if what you’re saying is appropriate, replace the word autistic with black or gay and see if it still sounds good.
Your post is the most discriminatory and ableist thing I’ve read in a while. Intellectual disability and autism are intrinsically connected, both conditions come from the same pool of autistic genes only that HF autism have dormant intellectual disability genes while severe autism are active. What you’re saying is: “please don’t include retard people in my exclusive spectrum” what the F are you? The legacy of nazy collaborator Hans Asperger? Remember he cherry picked the severely autistic to go die at the gas chamber and keep the HF autistic alive for research? Is that what you want? Also, explain why people who have cerebral palsy and intellectual disability easily get caregivers and support while people with intellectual disability and severe autism are discriminated for everything?
Unfortunately, intellectual disabilities, as well as ADD/ADHD, and seizure disorders are common comorbidities with autism, and all too often, make the autism even worse.
Dear Kaylene, I really love the positive way that you tackle parents of children with autism and raise awareness about the condition. our children already have enough to deal with day and night. Some children may have low self esteem especially when the parents whom they trust in frustration write negative about their own children. we all have to try to make our children’s lived less stressful. we also care for a child diagnosed with autism who have achieved some of the remarkable things for a 14 year old
Or maybe stop telling other parents what to do 🤷♀️
I follow her page, I found that video as I was myself coming to terms with this whole forever scenario, I felt soooo alone, I needed her video. Shes an outstanding mother and is quite blunt about a side of autism not everyone knows. If she’s not for you don’t follow her, don’t watch her videos but making a blog to shame her cause you don’t prefer her style, ew just ew.
I’m autistic. I’m one of the lucky high-functioning ones & even I was a burden to parent.
I KNOW I was. Stop shaming the moms of severely autistic kids. Stop trying to hide them like they used to hide people with mental illness in institutions with physical & chemical restraints.
You are the problem They need help not shame.
Thank you ❤️
I find it interesting that the first thing this article does is shame a mom for her blog. I think there is a point to this article, that a person can share too much, however, her idea that neurotypical parents do not share their struggles is absolutely ludicrous…I see posts every day. My son is nonverbal, aggressive, on meds and not toilet trained at 7. I do not post about this other than to help others in need. But if I find that I need support, I will post on a support thread without hesitation. We just saw a grandmother kill her twin autistic boys recently. If someone needs support, then they should receive it any way they can. I know what Blog you are speaking about and I have to be honest, her blog brought me great comfort knowing I wasn’t alone as a parent. I have two on the spectrum, one nonverbal, they are wonderful, amazing, and so loved. Yes sometimes I see posts and I can’t believe people are sharing them (like poop smearing pics) but at the same time, I think this is a journey for all of us and we need to treat each other with grace.
As an autistic adult I totally agree with some of the things you’re saying. I find it great that the internet creates the possibility for parents of autistic children to support each other. I think sharing about how to deal with parenting issues (regardless of whether the child is ND or NT) is invaluable. I totally understand the need to sometimes vent emotions too. Parenting must be hard at times (again not only parenting an autistic child). I think doing this by responding to a support thread is great. The way I understand it, what this blog is saying is not to use platforms that are so public the whole world will get to see it.
I also totally agree with you that we should treat each other with grace. I think this grace should extend to the autistic child. Just because our neurotype is different, doesn’t mean we don’t need and deserve the same respect. So I think what it comes down to is for parents to ask themselves two things: What are my support needs? And how can I fulfill them while respecting my child and their needs?
Best wishes for you and your children. :)
Ideas for things we can do to instead of crying out to the world for help…. hmmmm.
I was with you until I got to that list.
You get date nights?!
You have a baby sitter?!
You still have a best friend?! (after not being able to hang with anyone friend for decades because of the level of care you are responsible for at home).
You can afford therapy?! (Because y’all can hold down a job?)
And vent to a spouse who is going through the same thing everyday with you, if you are lucky enough to have one?!
Cute list.
Can’t wait to see your list ten years from now, when reality has set in.
I had a blog where I used to write this same kind of thing, all sunshine and farts about raising my autistic brood. You can’t keep it up, there will come a point you have to unload. And even though you’ve said we/you can’t or shouldn’t. Don’t police yourself when the time comes, you’ll break.
I’m not a fan of this article, I find it patronising to say the least.
Whilst I agree we should consider who to and where we share our information and always keep in mind that what we say or do can be seen by our children and how that could potentially make them feel.
At the same time it is nobody’s business to tell someone how to deal with difficult emotions OR where, when and how to share their experiences.
I watched the video that’s being quoted in this article, what I saw was a Mother who was vulnerable, clearly struggling, sharing real, raw and valid emotions with the world. Yes, she said some uncomfortable things but also more importantly said that all she wants is for her child to be HAPPY! I guess you conveniently forgot to leave that part out, because it doesn’t fit your narrative.
On behalf of all the autism parents who could get through about two paragraphs of your article, STOP JUDGING. And shut up. The very last effing thing any of us needs is someone judging us during what is an emotional and upsetting time. We are allowed to feel what we feel and I for one am sick of the puppies and rainbows autism community judging me for venting when my child is having a seriously horrible day. It is time to make the hard parts of autism something that everyone can see. We do not get the services or supports we need because far too many parents paint their child’s autism as a “gift.” People need to see the hard side of autism. I fully believe that is the biggest missing piece of autism awareness. No one gets it, because no one sees it. So many people are so ashamed to show their children behaving so badly. It’s the stupidest reason. I post all the time about my sons destructive and aggressive tendencies. Why? So people can learn what autism is. That it isnnt like that kid on TV who sang the national anthem. Or the kid who makes gorgeous works of art. Those are the exceptional few on the spectrum. That is not what autism really is. Autism can seriously suck. And you know what? You can love your child and hate their autism. That is the reality of it. And there is absolutely nothing wrong with saying so. So just stop. Support ad love instead of judging and pointing fingers. K thanks.
Thank you Faith. We need to expose the lack of support,resources and services for this vulnerable population, hiding them is inmoral , this type of article enables ableism and discrimination. Austitic mama mantra seems to be “Out of sight, out mind”
I actually loved this post! I don’t believe you were shaming me or any other parent all. You even sympathized with us. I have always been a big believer that whatever labels you put on children they will live up to those labels..or rarely, will overcome those labels. Good or bad labels! I have a mod/severe autistic son and a neuro-typical son. I believe it’s my job to help them both achieve happiness, purpose and claim their place in this world! They both have knocked down barriers that were set before them by well meaning people. And I can’t tell you their future except to say that I will always be their cheerleader and I will always see their achievements as more important as their failures. To encourage them to never give up and chase their dreams…whatever that looks like ❤️
It’s hard sometimes but there are also sweet otherworldly moments too ❤️ both my son’s have taught me more than a lifetime of experiences before them ever could. They help me see the world in full color! ❤️
Writer has five kids, I see this supreme patronalizing attitude a lot among the Octomoms. They have a dogpile of kids and suddenly they have the moral authority to trash not only parents of typical kids but as proven here, parents of disabled kids. Breeder moms are the type to call CPS on other moms they deem inferior in their parenting or shame the mom of a disabled child for publicy mourning the future that was robbed from her child like in this article. I’m sure there are good moms with dozens of kids but this writer seems to don’t have a human heart
Octo means 8
Luckily it’s only moms who have feelings. Publicly trashing your autistic kid is fine, since they don’t have feelings anyway. Right?
Well said.
I saw that video too and my first thought was “why is she taking him to this bloody Elmo thing anyway”.He so obviously didn’t want to be there. My heart aches for him. Surely we have to bring it back to the child first and foremost.it made me very sad to watch this child’s needs clearly not being met.
https://www.psychologytoday.com/us/blog/inspectrum/201509/please-stop-whitewashing-autism
The very fact that you wrote this tells me you have NO clue what severe autism is, or what it looks like. You only know the world of high functioning ASD/Aspergers. You’ve never seen the severe side, and the helplessness and despair. You have NO CLUE what severe ASD is…
Here’s a picture:
Fecal matter on walls and furniture, sometimes multiple times a day.
Changing a 5, 10, 15, 20 year olds diapers because they don’t have the ability to be potty trained.
Little to no furniture in your home because it’s been destroyed by your Severe ASD child, so the bedrooms are left with little more than mattresses and blankets, because anything else may be a potential danger.
Special door locks and alarms on every door because the same severe individual can, and will, elope, whenever possible.
Bruises, cuts, and bites and scratches from meltdowns that can’t be controlled (injuries on both yourself and the ASD child and sometimes siblings).
No sleep for days because of severe ASD insomnia (the ASD individuals insomnia which causes family members and caregivers to also have to no sleep).
Forces to quit jobs to stay home with the severe individual, living in near poverty, and always fighting to get your child disability services.
No respite or help.
Solitude.
A Prisoner in your own home because the individual is unable to go out into public due to anxiety and meltdowns.
Dentist appointment at hospitals because they have to sedate the individual to even look in their mouth.
Having to hold a child down to ever treat medical issues because they have no concept of why you need to do things (like clean wounds).
Having to cook special foods because your child will only eat a few types of foods – or worst case, feeding tubes because they won’t eat at all,and they will starve themselves.
Divorces due to the stress breaking down every relationship you have.
Children at the ages of 15 – 20 – 25 – still in strollers because they can’t handle walking in a store or anywhere or they meltdown or elope.
Your 15 – 20 – 25 still in a specialized car seat.
Still dressing and brushing teeth and feeding adult children that have no adaptive skills.
Watching your child headbang, scratch, bite, punch themselves for a reason we can’t explain, and the helpless feeling of watching that without being able to stop it unless using restraints and emergency medications to sedate.
Watching your child in the hospital restrained to a bed because they are severely ill, and have no idea why they need an IV or who the people (doctors and nurses).
Watching your child uncomfortable in their own skin.
Listening to the same sound or word 24 hours a day because that is all they can say.
Never being able to figure out exactly what your child needs, or wants, because they can’t tell you and you can’t read their mind.
Being attacked by your own child.
There is so much you have no idea about.
You dare nudge others while sitting on your throne of high functioning autism.
You had the ability to put pen to paper – or fingers to keyboard – and write this, but our children will never even write or learn anything but basic life skills.
Knowing your child will need 24/7 care the rest of their life, and knowing you will die first, and who then will love them as much and take as good of care as the deserve.
Having to make plans for your own death so your child can be kept safe and secure after it. Watching other kids at things like Elmo concerts and knowing you can’t usually even make it through a family members birthday party much less some special event like that.
These groups in which “Parents share intimate details about their disabled child’s meltdowns, bathroom struggles, medical histories, and more without hesitation.”, are often all that we have for support- the only other people that understand or know what we go through. When your child is severe,it is like nothing you have ever seen. You have NO CLUE what the hell you are talking about, sitting on your high functions autism perch and judging those of us whose lives are only lived to be caregivers to our severe children. You have no idea what it is like to watch your child suffer everyday from self injurious behaviors, uncontrollable stims, anxiety, depression, fear at every new person and sound. The hell you watch them go through because they’ve been thrown into this world alone in their head, us unable to help.
You have no clue what it is too realize, and YES grieve, because your child will never have a comfortable existence, and may never even go to school much less graduate.
You have NO clue.
Support groups are for support. Which means telling one another our worries, asking for advice, or just being able to talk to someone else whose been where you are.
Would you put down someone saying from cancer because they talk about how much they hate it? How much they wish it didn’t exist? How they hope and pray for a cure? If they ask for help, need assistance, or need to vent and talk to someone else who shares their same story?
It’s the same thing.
Our children, and therefore us and all family members, have been thrown into a disease that is painful, is horrible, that is hard to watch someone suffer from.
You want to be a better person? Then get off your throne, stop judging, and write a post/blog entry about severe ASD and the need for finding and help for those individuals and their families. Get off your ass and help, don’t hinder and judge. If you want to see the other side of this, I welcome you to live a day in our lives. Otherwise shut your trap about things you have no experience, or no clue about.
You probably didn’t even read the article. The fact that there are support groups to share experiences and vent is exactly what the author points out. That’s why there’s no need to put those things on YouTube, where everyone can see them. Even people who are just looking for a sentimental video, but don’t have one autistic in their lives themselves.
You should probably take this article down. You are coming off extremely judgmental and rude.
Dear AutisticMama…
You are not wrong, but you said it WRONG.
PLEASE stop blogging about Autism. You have much to learn.
Sincerely,
AutismMamaBear
I am in total agreement with this page, I knew a lady they’re raised in autistic son and we never knew he was autistic, she never let anybody knew no she never complained she got him every Advantage you could possibly get to go forward and be educated she educated herself on it, in this world that we live in people are so quickly to put people down for something they may have they act as if they have a disease and shy away from them, why not act as if nothing is wrong make everything as normally as you can, I believe the only time that you need help is when you feel you cannot cope, the lady in the video what was her hope that she would get free help, that’s what most mothers are hoping for free help welfare. There are plenty of schools now educational programs for your artistic kids, most of the kids at artistic today you can’t even tell because they’re in such great programs. I’ve been to restaurants and I’ve seen autistic kids but they never acted out autistically and if they did the world is forgiving. I totally agree with this whole page a good ride up stop feeling sorry for yourself get tough It’s called tough love buckle up get a life, unless you can’t handle it then it’s okay to go get psychological help but why post it on Facebook because she wanted something free
You don’t even know what you’re talking about. Most kids who are autistic ARE identifiable as autistic . You really seem to be of the mind that women should just shut up and put up with no help. They gave birth to a disabled child so i guess they deserve what they get. What about the fathers? Hmmm? Off to start a new family? Never around? Point is why are they never mentioned?
Autism at the very least requires significantly more support than it currently receives. Higher functioning individuals struggle to keep jobs in our lovely ultra individualistic society. Level 3 individuals are not supported by the society in any way shape or form and neither are their parents. At least everyone else here has direct experience with autism (they have a child with autism or are on the spectrum themselves). You don’t, so just stop. Please
The kind of “mom” who would make one of these namby-pamby videos and have the idiocy to post it has issues beyond her child with autism. Were it not for autism, she would find something/anything else. She gets no sympathy from me.
Having two autistic children (one moderate and one severe) has ruined my life and my wife’s life.
Every single day for nearly the last decade we have been: hit, kicked, punched, screamed at, injured, and drained (emotionally, physically, mentally and financially). Our days consist of never getting a full night of non-interrupted sleep, constant screaming, screeching, tantrums, outbursts of physical violence of every kind, changing diapers and unwillingness to eat. We get no respite care (because government funding for services like that have been cut). We get no breaks. Relatives don’t want to help because they can’t handle the insanity that is our daily life. Doctors and nurses can’t help because there is literally nothing they can do to make it better. No government services. No local services. We are on our own.
It is literal hell.
There isn’t a day that goes by that I don’t lay down to go to sleep at night and wish, really really wish, to wake up and realize it was just a bad dream I was having.
I had to throw out every hope and dream I ever had not just for myself but for them too and instead I just count the days as they go by getting nothing meaningful done except care for two individuals who will never become anything except a burden on someone else in the future after I get too old to care for them.
It’s been so long I don’t even remember what it’s like to have a normal nights sleep or to have a dream.
I have an autistic daughter who has stopped eating and drinking. She is just skin and bones now. On top of this she in stuck to me 24/7. I work 7.30 hrs from home while she is sat on me and sleep on me. She wants me to wear the same thing day and night. If I refuse that’s a meltdown. She doesn’t want me going to the garden. If I do, that’s a meltdown. I have not had a minute to myself for a very long time. We have to force water down just so that she doesn’t get dehydrated and end up in the hospital. With the current situation going to the hospital for any other reason is not the best option. So I really have to say it is unbearable most of the time. I feel suicidal some days. So if I have to complain I will do it because it really is difficult.
Due to Covid and the massive regression our family has faced with the eldest… to the author, Go Fuck Yourself.
You know this – Spectrum, umbrella, some of us have it worse than others… and stop playing the “I’m autistic, too” card as a means to double down that YOU ARE RIGHT, there is no right, there is simply this fucked up reality and everyone has to navigate it differently… some of us got it worse than others.
I dont know what you have to go through day to day but I can sympathize with anyone that has to face these hardships and loses their shit, all of us that are affected by autism live in a waking nightmare. Outside of the internet hardly anyone cares, people in the general public rarely understand, you as the parent are the villain and without resources and constant intervention paired with routine it is Hell.
Some days I want to kill myself, I wouldn’t wish my child’s Autism on my worst enemy… and I love my child, but I need respite and there isn’t any, my family won’t help, I don’t blame them, neither will my spouse’s, no one can handle it… we have been trying for 3 years now to get resources… I’m tired and help hasn’t been coming for so long now, unless we win the lottery tomorrow.
I’m tired of being afraid of my neighbors and onlookers calling CPS because they think I’m abusing my child when they’re having a meltdown, I’m tired of being questioned about bruises from self harm, I’m tired of people telling me the only option I have as a soon to be single parent is give your flesh and blood to state custody, I’m tired of having everyone walk out of my life because there is no normalcy when my child is involved, I’m tired of professionals telling me it will get better and not seeing any progress, I’m tired of crying at the end of the day when my child is finally asleep feeling like no matter what I do I am constantly failing them, I’m tired of being tired…
Here’s one for YOU, please stop Blogging YOUR Bullshit.
This article was laughable. Some objective points, but the majority was a joke.
My son is 15, weighs 175 pounds, and is 6’4″. I had to quit working because there was no one willing to take care of him once he got older. There’s no support, respite, etc., for our family. Life consists of dodging his punches, kicks, slaps, and bites, and changing diapers. No full nights’ sleep. He screams most of the time he’s awake. Screams and slaps are his stims. He has punched holes in the walls of every room in the house. I can’t drive with him because he kicks me in the back of the head and pulls my hair. I’m afraid I’ll hit someone while being distracted by trying to dodge blows. We’ve had to replace the tv three times in the last two months because he’s broken it. One time by biting it. My daughter has a fragile bone disorder and we’re desperate to keep him away from her so that he doesn’t break her bones. Since covid, there is no escape for her into a normal school environment. And, of course, there’s no assistance for our son. We don’t know if he’ll be able to regain the losses he has experienced once he has school again. I don’t complain on social media because I’m off all social media. I’m so sick of parents complaining about the normal teenage antics of their kids. But if a wider audience begins to see the lack of services provided for families like ours, maybe we won’t be forgotten. At least in my state, special education services for those students who functionally can’t understand virtual learning have been ignored completely. This isn’t right, but parents like us are so freaking exhausted just trying to survive, we don’t have the strength to demand fair services for our children.
Selfrighteous fat piece of shit, how dare you. Just because your life is manageable with your perfect authistic kid and 4 normal kids, does not mean it is the same for the rest of us. Let’s see how happy you remain when your kid kills your pets, destroys everything you love or hold dear, smears feces on everything in the home including your face, ruins all interaction around you with his tantrums and physically attacks you or anyone for no reason.
Who the fuck are you to tell us to stop complaining? You probably want to deny your parents the right to complain about you, but you project it on us. And as an authistic, you breed to put more autism in this world? People like you should be shamed mostly.
I don’t care who i upset with this reply either. Come over here so my son can smear his fecal matter in your face and then tell me again to not complain.
Your son smearing fecal matter in your face is communication.
He’s making a pretty clear statement, tbh.
I feel really bad for him, you’re disgusting.
You are the reason your son does those things.
Your child is crying for help and you choose to demonize them.
You’re a fucking cunt. You treat your children like shit and then wonder why they act out like this. If your children had actual decent parents that loved and helped them (rather than demonized them or whined to the internet to get asspats and attention), they wouldn’t act out.
The reason your son acts this was is NOT because of autism, it’s because he has a worthless sake of shit like you for an egg donor.
Please, for your children’s sake, put them up for adoption where they would at least have some chance of being adopted and raised by parents who love and care for them. Besides it’s not like you even want, like/love, or care about your child.
Mediocre gene pool, probably. And well, an apple that falls far from the tree is quite a rare thing… Poor children, and poor pets.
The comments here make me so sad. I know it takes some of us a long time to connect with Actually Autistic community and by then you may have already gone down a path of trying to “fix” your child, and “hating” autism. It can be hard to shift your thinking but if you do you will see how quickly your life and the wellbeing of your child can change. Adult Austistics are the greatest resource we have as parents. Please listen to what this amazing lady has to say and show more respect. She is offering you life changing insight.
Yo, Autism parents. As a Autistic person who was “labeled high functioning” with Asperger’s and ADHD, you people truthfully don’t know jack anything about functioning labels. You know how those of us labeled “high functioning” are just the “stereotypical geniuses” therefore nothing could ever go wrong with us??? Well, I’m 22 years old. Every single last internal concurring issue that isn’t my Autism nor ADHD has been overlooked, therefore slowly, but surely, I’m moving over to the societal “low functioning” scale. I have massive back pain, I have a job, I can drive. But every single one of my internal issues have been overlooked because “there’s nothing wrong with me. I’m too smart to be Autistic. I’m the one manipulating people for the extra support” (when in reality I realized I literally have two separate Dyslexias, and could have used the help in reading and writing by middle school, especially with notes, because I can’t keep up with anybody in that bullshit.)
Y’all need to start treating your “severely Autistic” children with basic human rights, privacy, and respect. I am sick, and I am tired, of seeing people dehumanize their child because they’re “low functioning” and non-verbal or have all the concurring issues at birth. There’s no “hidden” child underneath the Autism. All y’all do is talk over them and don’t listen to their struggles. Full stop y’all.
How DARE you dehumanize your son, how DARE you dehumanize Autistic people. You want to complain so fucking badly about your kid smearing fecal matter to the world? Really? That’s private information, and no parent to a NT child would ever do that. People like YOU should be shamed, not US for trying to educate you on how to actually not dehumanize your child, or US.
I have two autistic children. When my oldest was first diagnosed, I did fall down that rabbit hole of complaining (more about how people were treating my family differently or professionals implying it was my fault). It’s been 4 years since my oldest was diagnosed and almost 2 years since my middle baby was diagnosed, and I’ve better educated myself on how to best accommodate thier needs. In the beginning, I wasn’t recognizing that certain places we went, my daughter was in distress so she would elope or melt down. They are doing well with the exception of some uncertainty towards school but I’m so glad to better educate myself and listen to autistic voices.
I don’t think there’s a right or a wrong here. Ran across this post really desperate and I see both sides. My son’s symptoms are severe. We deal with tantrums every day, to the degree he’s knocked my teeth out of my mouth. When you’re feeling as low as the Mom who posted that video, you’re rock bottom. It’s okay to be rock bottom, and if you don’t have or don’t know how to get resources, it feels like the world is crushing you. So you vent. Likewise, you learn that to vent to certain sources doesn’t help. It’s a very wide playing field with Autism, there’s no ‘right’ or ‘wrong’ way to cope [barring abusive extremes, and no, I don’t think this was abusive, I think this was desperation, and I think this sort of response is what makes many parents feel so alone and silenced, but I also understand why the author wrote this]. Point is…try to take it one day at a time. Forgive yourself and those in your community. No one is perfect.
You think parents of NT kids don’t publicly complain, post videos, etc? Perhaps you only spend time in the autistic community but I see posts in my neighborhood mom groups every day with this stuff. This post is just totally off.
Parents have those worries about any child, but when you have a child with Autism those are much more intense, i cry myself to sleep some nights thinking about it. Its not because of him, i am in awe of bravery and strength, its because of this world…i have fears. Any mother to says i dont think like that, dont think is being truthful,fear and worry come from Love and caring. Now i agree about posting certain stuff online,i myself are private because to me the world does not deserve a front row seat to my family. What actually angers me about this…the word ABUSIVE…that is shocking…perhaps take a trip to social work…and you will better understand the concept of what abuse is,disrespectful to victims of real abuse….
its certainly not an overwhelmed mother crying on a video, The world is judgmental enough, now ASD mums are shaming each other….
Look at yourselves…
My parents are far from perfection, but if they made something like this to me I would publicly shame them back and/or kill myself. Keep it in mind, ableist NT mommies.
Facebook nowadays is a cesspool of narcissistic boomers, sl*ts, anti-vaxxers, white supremacists, conspiracy weirdos and other human trash, so posting a public video shaming your disabled children there means that… you’re not different from them. Not to mention that you could EXPOSE YOUR CHILDREN TO BULLIES AND/OR PAEDOPHILES. Keep in mind this too.
But Facebook has also a good feature: PRIVATE groups of every kind. So you can post your videos there without humiliating your children and yourselves. Nobody ordered you to stop complaining, if you have the martyr syndrome just express it in proper places and possiibly in front of proper watchers/readers/listeners.
Everyone has their right to privacy. EVERYONE.
Ew, neurotypicals.
The fact that this post calls people [of whatever nature] sl*ts and then shames people who are ‘neurotypical’ should tell you exactly where this mentality is coming from. Hate. It’s just prettied up under a thin veneer of platitudes in regards to personal privacy. It looks nice, but it’s not. Compiled with ableist threats of suicide and counter congruent co-shaming it’s basically gaslighting. The right thing to do in situations like this is to talk and gently correct. No ones perfect, this thread sure as heck isn’t. Privacy is one thing, the topic of privacy compiled with suggestions of martyr syndrome and vitriol is a lil nuts.
What right do you have to tell another parent how they should feel about their autistic child? How dare you? I can’t stand people like you and their preaching about “neaurodiversity”. Not every autistic child is the kind you can just take to starbucks or out for lunch! Everyday is a struggle for my and my husband, our child is very difficult, very behind and despite intensive therapy I already can see my future. I grieve! I cry, because this is not what I wanted. Who in the world would want to have this struggle? This is our first child, her therapy is not free or covered we live, we are spending over 90K in CAD per year. I feel sad when we are at the playground and I see other kids who are normal. It hurts a lot. Good for you, you must be soooooo perfect! Nasty woman.
Your kid is like, a kid and you’re already grieving? Damn, you w*men are children.
Click bait-y title but agree with the overall point. Parents need an outlet but it shouldn’t be somewhere the child can Google for later in life.
Its articles like this and people like you thst make it impossible to find anyone or anything genuine about real autism struggles. Fuck you first of all for telling anyone to hold it in and not to speak. Because I fucking do,and its so depressing to read everyone always saying how great it is and you must be a bad mom if its not rain bows and perfect. That’s the shit that makes me cry at night, wondering if I’m a horrible mother because i can’t fid anyone anywhere who speaks truthfully about what its like to raise disabled children. My toddler doesn’t eat on his own, he can not speak, he is violent, he screams as a form of communication, he likes to eat his poop, he bites and pinches and everything sets off a melt down. I run around all day to cater to his every need. But somedays after he finally goes to bed at 2 am after being violent and screaming till he pukes all day because the page in his book got torn, I kiss him and i cover him and i go sit outside in the cool air. And sometimes i fucking cry. I wonder why is this so easy for other moms? Why does it look like they do it like a breeze…. And I research how I can make it better and i take him to therapy and we try this and that… But what I really need some times is to see someone else who struggles too. To re a firm that just because i have break downs and the cold reality of raising a disabled child doesn’t look like the made up fairy tale people try to sell you online, does not mean im a horrible mother or bad person. I do not sugar coat my life and i don’t pretended this is a fairy tale. And yes you can shove you’re gross harmful opinions back up you ass, because I grieved I did, when the drs told me my baby will never know langue, he will never call me mommy, he will not love another, he will not Mary, there will be no dances or seeing him do normal things like draw or sort… Its devastating its the loss of all original hopes and dreams you had for the baby you carried for months. I will give my life for him in a heart beat, this child regardless keeps me motivated and I love him beyond myself. And its still okay for me to break down and have bad days too. And theres nothing shameful about venting it out vrs bottling it up to fester and rot inside you. I want more women who deal with heavy heavy work and problems all day to speak up, I want advice and to hear what they have to say especially on their bad days. Vrs women who lie and say its perfect never a bad never any anger or grife or fear. Because those of us with disabled children fear so fucking much…. What am I gunna do when hes 35 and 6ft 5 and 240 pounds like his dad when hes this violent now? You still gunna tell me to shut my mouth and pretended thats not terrifying? Smh stop living in a pc fantasy world about true disabilities and stop trying to silence those that are raw and real about real life.
No one here said to bottle it up. What she said was 1) there are appropriate, safe places to vent, 2) those are not a public forum, and 3) don’t talk like your child is unlovable. I hear your pain, your fear for your child, how overwhelmed you are. I hurt for you. But let’s say that your son was neurotypical, had insomnia due to early childhood trauma, along with a complete inability to handle the extreme emotions that came with that. Would you share that with the whole world in a way that shamed him or would you find people you trusted to support you and vent to them? If you don’t have a support network, I’m so, so sorry to hear that! Everyone needs one, autistic, neurotypical, living with a mental illness, or not diagnosed. If you don’t have a good support network, I hope you are able to find one.
While I agree that there is a time and place for everything, to say that a parent has no right to express frustration about their child is bogus. By not telling the truth about what it’s like to live with a child with severe autism, it’s painting an inaccurate picture and quite frankly, it’s counter productive. No one wants to talk about the dark side of all this. Sleep deprivation, extensive injury, seizure conditions, and explosive behaviors just to name a few. How about how the baby gets minimal sleep because his sister never sleeps, the melatonin doesn’t work, and doctors refuse to do anything else about it? Or the very real lack of availability for ABA in most states? Or how we traumatize doctors and nurses because it takes 5 people to restrain her just so she can have a basic check up? By NOT expressing these things it makes other parents of autistic children feel like they aren’t good enough, isolated, and like they are flat out bad parents, even though they sacrifice EVERYTHING just to care for them. This article is hogwash. Period.
Well, as an autistic adult who is struggling badly with self-worth and Googling “Am I a Burden?” these abusive, unhinged comments have clearly allowed me to see that it’s actually not me that’s a problem for existing. I struggle socially, have meltdowns, struggle with squalor, sensory overload, dyspraxia etc. Sorry I’m not autistic enough to deserve empathy, folks.
Too many people who lack the empathy, understanding and patience for what seems like even neurotypical kids, let alone autistic kids.
You desperately need more support, care, help, etc.
Some of the comments on here – please relinquish your disabled children to social services or even permanent care – I worry so much for their physical safety, their mental health, their autonomy and just growing up with parents that truly cannot get beyond their own pain to even countenance that this kid has feelings as deep and complex as they do.
The fact you are autistic muddies your POV.
You don’t want to believe the severely autistic even exist let alone cause their parents heartbreak.
She shouldn’t have posted a video about it, but you shouldn’t be judging her.
DUECES.
To be honest? I would have a massive problem with any mom making a video of this sort about ANY child. If it’s such a big deal that your child meets Elmo, then that trip wasn’t for your child at all. It was about you taking your child to see Elmo. If the problem is about the other parents’ reactions, the rest about how no one else cares about your child doesn’t need to be said. There’s venting which needs to be done in an appropriate place, whether the child is neurotypical, autistic, or has ADHD. There’s raising awareness, such as explaining what leads to why behaviors happen and ways to mitigate those circumstances. The two should never be mixed. There’s also asking for advice which, again, shouldn’t be mixed with venting on a public forum. Again, this is the sort of thing that shouldn’t happen with ANY child. It’s not wrong for an autistic child but okay for a neurotypical child. It’s just not okay at all.