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(originally written & published on January 20, 2012)
“I wouldn’t change him for the world.”
Not a day goes by where somebody doesn’t write that phrase on my Autism Daddy Facebook Page. They basically write something horrible or bizarre or annoying that their ASD kid just did, something that most typical kids would never do, and then after telling you this bizarre/ horrible/ annoying thing they’ll say, “but I wouldn’t change him for the world.”
To that I politely, and with all due respect say BULLS&*T!! You can’t be serious!
I kinda covered this topic in a previous blog post called “The Autism Daddy Manifesto” but that was more about religion and my other 2 least favorite phrase “Autism is a gift from God” and “God only gives you what you can handle.”
But today’s blog post isn’t focusing on religion. Today’s blog post is focusing on that little 7 word phrase…
“I wouldn’t change him for the world.”
Come on, really?! Your kid sleeps less than 2 hours a night because of his autism. You wouldn’t want to change that?! Your kid doesn’t talk because of his autism. You wouldn’t want to change that?! Your kid bangs his head against the window because of the big A. You wouldn’t want to change that?! Your kid smears his feces against the walls. You wouldn’t want to change that?! Your kid recites the same phrase from Dora The Explorer all day long. You wouldn’t want to change that?!
I could maybe see parents of some of the higher functioning kids saying that phrase. But even then, for our higher functioning friends, your kid has a hard time making friends and is the recipient of bullying due to his aspergers. You wouldn’t want to change that?! Your kid is so stuck to his routine that any teeny tiny diversion and he has a meltdown. Your kid will only eat chicken mcnuggets from McDonald’s, nothing else will do. You wouldn’t want to change that?!
Now admitting that you HATE your kid’s autism doesn’t mean you don’t LOVE your kid. I LOVE my son. But I HATE the disorder that he’s been stricken with that will make him dependent on mom & dad for the rest of our lives and beyond.
I would change him in a heartbeat! I would sell my soul to the devil to get rid of his autism. I want him to have the exact personality he has now minus the autism.
So why do so many autism parents throw this phrase around?
“I wouldn’t change him for the world.”
Do parents of kids with cancer or diabetes say that? No, of course not those are life threatening diseases. Do parents of blind or deaf kids say that? I’d be curious. Do kids with down syndrome or cerebral palsy say that? I don’t know, but I doubt it.
So why are all the autism parents throwing that phrase around? Why do we feel like we have to be ok with it.
“I wouldn’t change him for the world.”
Then why are you raising money for autism organizations? Then why did you try the GFCF diet? Why did you try neurofeedback or vitamin supplements? Why are you fighting for more ABA therapy?
You know why? Because you want to change him. You want him to progress. You want him to be more typical.
It’s ok to admit it. I swear. Try saying it out loud. “I’m as mad as hell and I’m not gonna take it anymore! I hate my kid’s autism and I want to change him!”
There doesn’t that feel better?
🙂
added 12/26/12
you can tell by some of the comments below that some people took my “i wouldn’t change him for the world” literally, and replied with things like “i want to change the world for him”, etc, etc…
that’s not what i was going for… i just meant the phrase “i wouldn’t change him for the world” to be synonymous with those parents that say, “i wouldn’t change a thing about him”… yeah, that’s it… i wish i could change the title of this blog post to
To The Parents That Say “I Wouldn’t Change A Thing About My Kid”, I Say Bulls–t!!
I wrote a follow up post the very next day further explaining my stance you can find that by clicking HERE.
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Thank you. I know many parents in your exact same boat. I might have them myself but mine are grown and escaped. You are exactly right. BS.
I have to say I wouldn't change my daughter. I love her as she is the child I have is the child I want. This doesn't make me better than a parent that wants a cure.
It just means my daughters quality of life is very high while we still have issues, that must be managed. She will be going to college,and get a job she also has boyfriend and will grow up and get married.
People who want a cure have no such hope of even half that because their child's autism is so profound to say to such parents hate their children is to shame them for wanting those children to be able to grow up and function independently.
It is not so simple as love your child and accept their disability, when in some cases that disability is so severe they are out of control, unable potty train, can not care for themselves as a basic level AND NEVER WILL .
It's not hating your child to want them to be able to function!
I guess I got lucky, my autistic 5 year olds behaviors aren't that bad. he's clean and he sleeps great. he even says "ewww, yuk, gross" when he sees poo. Yes he gets mad if i change or move something but we are able to overcome it in a few tries.., yes he has language delay, and yes he used to run from me…but his art and drawing ability is astounding, also spacial intelligence…. it was never so bad I even thought about him not having it because it seems integral to his personality? you are dealing with classic autism and sounds truly back breaking to deal with. my heart goes out to all of you afflicted with classic autism. i think those of us with higher functioning autistic kids can't fathom how hard it is for you, and yes it's harder for us, but doable.
Well, to be fair, I think those parents say "I wouldn't change my kid for the world!" are saying that to keep from going completely insane. Think about it, if that were your child and everyday you woke up saying "I wish he didn't have severe autism," you'd drive yourself nuts! You would have to stay completely positive and accept him the way he is to keep sane. After all, the child is going to be that way for the rest of his life, and you will be taking care of him for the rest of your life. My other theory is that the parents who say that have a child who is much milder on the autism spectrum, or have a related disorder like Asperger's. Sure, if your kid is high-functioning, has a few quirks here and there and will go on to live and work independently as an adult, I could see how you wouldn't want to change him. Heck, I've even met autistic kids who are so high-functioning that I don't know they have autism until their parents have said something. I don't have a child with autism, I'm just giving my two cents.
I have high functioning autism. I cannot imagine what it is like to raise a child with more severe autism. I know my mother struggled, and still struggles, with me, and more severe autism is likely many times harder on the family. Usually I am confident in who i am, and what my struggles are, I like myself. However, I can understand why people hate it, and why they want to get rid of it.
But it also hurts to see things like this, regardless of how logical or illogical my response may be. I do see autism as part of who I am, not all of me, but a large part. When I see people right that they hate autism, it is though they are saying they hate me. It also makes me feel guilty. Guilty that I made my parents lives harder, guilty that I am not like my "normal" sister. It makes me feel like a burden and a disappointment.
Everyone has a right to their emotions, and those expressed here make a lot of sense. I think it is important though, to remember that words can hurt people.
To everyone who is yelping to get rid of the Autism – you are advocating the murder of your child. That's pathetic. They are Autistic and they are human as well. Stop making lazy excuses and stop hating Autism. You don't have to love it of course – just tolerate it a whole lot. If you're not willing to do that then you fail as a parent.
Hey, religious idiots are stupid, but so are you! ASSHOLE! I HAVE ASPERGER'S SYNDROME! I DON'T WANT TO CHANGE! I LOVE FICTIONAL CHARACTERS, AND THERE'S NOTHING WRONG WITH THAT! HOW DARE YOU! I WOULD'VE KILLED MYSELF IF MY MOM TOLD MY TEACHERS, HER COWORKERS, SHE'D CHANGE ME WEARING SHORTS, FLIP-FLOPS, AND CHARACTER SHIRTS! OR ME LIKING SPAWN, GODZILLA, PREDATOR, BEAST WARS, TRANSFORMERS, TMNT ECT! GUESS WHAT, I RAN A PETITION TO HAVE A BOY WITH AS TRIED AS A JUVENILE! THAT ISN'T A SINGLE THING TO BE ANNOYED WITH!
I see these two pieces as a bit sensationalist to be honest – more a question of expression (perhaps intended to gain a reaction?). Do you really want to change your child (and therefore have a different child) or do you want to change that your child has autism/cancer/any other condition that is incredibly difficult and exhausting both physically and mentally to deal with – probably for the rest of your life? A person is not their condition/disorder/disease/etc and I think that the author is well aware of this.
I think most of the behaviors people find objectionable are normal responses to unmet needs. Some children are more sensitive to environmental issues than others. Some children need to eat different foods. Some children need cleaner air. Some children have very sensitive skin or hearing.
No wonder your wife does not want you saying stuff on FB. You are a douche and should be ashamed of your self oh wait it is only your child that you are ashamed of. I for one would not change my child. Call me a liar or what ever you want but I have accepted and embraced the autism and in turn he will as well. Thanks to your attitude how can your child grow up doing anything but hating himself due to the autism. Autism Daddy LOL how about Autism ass, Autism hater I feel sorry for your child
I have Aspergers and although I value my intelligence and my honesty/directness, not a day goes by that I don't wish I were normal. I think the first time I contemplated and attempted suicide I was 8 years old. I'm now 25 and despite having a few degrees, graduating each course with a 4.0, and having learned 3 languages, I'm one strike away from being fired from my job at a 7-11 because of misinterpreted nuances, becoming overwhelmed, and executive functioning issues. I have no friends, my husband and I basically ignore each other at this point to avoid the inevitable conflicts my lack of theory of mind seem to cause, and I want to break down everytime I interact with my 2 sons who I realize are responding and acting just like me. I know firsthand their intelligence and noteworthy skills will do them no good in a world based upon human interaction and social graces. I want to die everyday and keep going hoping that someday the therapy and work I'm doing to try and change myself will just click, but I know that won't happen. Do I hate Autism? Yes! And sorry Aspie parents, but the reality is that unless they are really high functioning and find a niche in something soon after college, they likely will work dead end job after dead end job, struggle on relationships,and live a life far below their intellectual potentials because after school, no one gives a shit about how intelligent you are, but how well you can play the corporate game of manipulation to enhance profits.
I agree why would anyone want to keep a problem that causes their child so much life long pain.
I want to say.. a diagnosis is What they have, not Who they are.
I have four children. Two Autistic children, One Nuerotypical child, and one child with Downs syndrome. My boys are moderate to high functioning, yet they still struggle daily. My younger son has a lot of sensory overload triggers that make it difficult to take him places. He needs sensory distraction which can sometimes be difficult. He stimms nearly all the time. He is mostly nonverbal and with a lack of communication he has meltdowns a lot. Neither have a relation between danger and self safety, with the addition of them having a tendency to wander. My oldest son regresses in potty training. He is socially behind with behavioral issues. My daughter due to her Down Syndrome is developmentally behind in gross and fine motor skills. She doesn't say the words a fifteen month old should be saying by now. She can combat crawl, but nothing beyond that. She has two heart defects repaired, but Chronic lung disease because of those heart defects. Which lands her in the PICU nearly every time she contracts a cold.
All of my children are beautiful, wonderful, happy, loving, and the best! I love them through and through. But I would be lying if I said I didn't want them all to be typical. If I didn't want to kick Autism and Downs Syndrome to the curb because of the struggles they cause. I would be lying if I said "I wouldn't change what they have" .. I would. They aren't their diagnosis, they have a diagnosis and I would take that diagnosis and get rid of it.
In a new york heartbeat, I would take away the autism. Why would any parent want their child's life to be one huge gigantic PITA struggle for the simplest things?
There are two types of parent – the ones that accept the autism and admit that its no picnic and the others that try to make themselves feel better by saying they wouldn't change them. My son is severely autistic and I would literally give my life if it meant he could have a normal one.
any more autistic people wanna come on here with me to oppose this article? most of the people who want that "change" on here are not even autistic.
I have a 22 year old with Autism and I love him . But if I could change him and make this all go away I would. I know how hard this is on him, and today ..and this week.. have been great. but who knows what next week will be like? Today he drove to see a personal trainer<– (exercise)is a great way to help control the anger they can get when they get older) Tonight he will cook his own dinner. a few years ago they wanted to lock him away in a group home. He has had good years and bad. But what kind of parent would I be if I did not wish better for him.
I’m a 35 year old single mom with an autistic daughter and, I guess, I could say and think…. I wish life wasn't so difficult for her. I wish she had her exact personality without her inability to control her impulses and fury, awkwardness and ticks. However, the way I see it, is why focus on any of that at all? What's the point? I understand and can appreciate being mad, upset, frustrated and at a loss over this condition and wanting the best possible life for your child but this going away is not going to happen. It is what it is. You got what you got in life. It isn't a gift or a punishment it just is. The circumstances aren’t negative or positive it is what you make of it.
For me to say I wish for her life to be different and change seems futile and self-deprecating. Why would I do that to myself? Why would I choose to make this a negative experience? I can't change it so what value is it for me to wish it to be different except to spark anger, resentment, sadness and a sense of futility?
I choose to see the blessings even when it is disparaging. Her struggles are my struggles.
Having her as my daughter has allowed me to see the world in a different light, to be more accepting of differences and eccentricities, to observe and understand where the true value of a person's worth lies, to have my own self-respect and independence so I can set a good example for her and to set myself free of societal, religious and cultural confines of judgment, righteousness and expectations.
Her autism has and continues to teach my son about compassion and forgiveness. Having her in our lives reminds us not to dwell in the past or worry about the future; the bad will pass and cling onto the good while it’s present.
The perspective she has brought into my life is the most valuable experience I could have ever imagined.
How many "normal" or "typically developed" people suffer and lead heartless, disparaging lives; whose worlds are so small they are intolerant and emotionally destitute? Those people that haven’t had the privilege to see life through the eyes or a child with a condition, disease, handicap or disability don’t observe the extraordinary level of resilience they possess nor do they have the capacity to truly appreciate the daring freedom of non-conformity.
Why would I utter either "I wouldn't change her for the world" or "I would sell my soul to have her live a 'normal' life?" I don’t live in a sci-fi fantasy world. It just is and I just have to accept it; choose to find that ray of light especially when things are at their darkest. That’s just what works for me and it is a conscious effort every single day.
I’d also like to add that I don’t criticize a parent who would utter either of those phrases above, because life is a very personal experience and everyone is valid in how they feel about their situation.
Ifelt I raised a cuckold in my nest.. all my love attention and compassion to teach my child empathy sensitivity consideration…..he does ok he is well taught but he doesnt feel it… ANd under pressure hell it is all out the window. Iam so sick to death of the self defeating demeaning patronising Bull ……oh autism is ok but schizophrenia isn't???? Imagina carer of a schizophrenic saying gee wouldnt change him…. well you see we all accept that is it a shit disorder and can be helped with medication….but while there is no medication for autism we all have to pretend it is OK????? what the hell. IT IS NOT OK> Of course a change would be better yes a different person but gee if we could cure autism then they would be adaptive and probably enjoy the change!
Amen brother! You got it right! I am a Christian who believes God helps us or some of us would have probably killed ourselves and the kid as well lol. Seriously, I'm glad to see someone finally telling it like it is and yes I would change all those autism torments if I could. All I can do is struggle to have the faith that one day we will get a breakthrough. Prayers going out to all victims of this illness!
You're all right. Every one of you. Now then, let others be right, too. Choose the thinking that serves the life you want to live (amidst the life you have), and allow others the same. I personally don't see the value in considering the question more than once or twice. It is what it is, they are who they are.
Honestly? I don't know anymore, Alex my son is happy, will not have to worry about material things like Money, where the next meal is coming from. He doesn't have any prejudices and is generally loving and helpful and still loves hugs and being tactile at the age of 21. He has a character all of his own and as much as he has caused us sleepless nights and stressed us to breaking point when he was younger, my life is richer because of him. If I had not known him as he is, I would obviously still love him, but would we be as close and would he have a better life? I really cannot answer that anymore.
i understand how you feel, but even if they're in diapers, they can still do extrordinary things. i for one was still using a plastic potty at 5 and i could memorize many of the end logos that came on after the credits of the cartoons that i watched, and i would write them on the kindergarten marker board.
i'm probably one of the only autistics commenting on here, and i have to say to AD and these curist parents: how are you to judge how your kid feels about their autism? you can't POSSIBLY know without asking them, and if they can't respond, you don't just assume "well I want things my way so I'll just say he's not anywhere good right now and I should change who he is". Just because I may be an aspie doesn't mean I have no value in saying that no one should cure autism, ever.
I have a son with CDLS. im not fighting to make my son more typical, just fighting to take some of the symptoms away to make him healthier and more comfortable (kinda like you would with a regular kid with eczema).
im also not trying to make him more typical to the outside world, but trying to make people learn to love him cdls and all. ive always maintained that whilst his syndrome doesn't define him, its sure as hell a massive part of him. without I don't think id know my son anymore…hed be a stranger.
but this is just my personal view.
no one is allowed to tell anyone else how they are allowed to feel about their own childs condition, so this is not me telling you are wrong. its just that my own personal experience hasn't led me to the same conclusion! 🙂
I have been lucky. I have said for years that would change it for my son's sake but not for mine. I have had an absolute ball raising my 22 yr old son. I just worry that he will suffer without me or become unhappy with his life. But being broke, listening to the same stuff over and over…etc….I truly enjoyed/loved raising him …I had fun. I also never wanted kids at all so my expectations were real low about parenthood. It must have been some sort of perfect storm that made this horrible situation turn into something that makes me smile every time I think about my years with him. Nothing special about me or him just blind luck. But….I have to say that parents should not be made to feel bad for hating this condition…I mean…..what parent WANTS their child to be impaired? Everyone's life is different so shame on ppl judging or making parents feel like they have to hide their stress.
In a heart beat I would take away my Grandson's ASD. To watch him and his family struggle day after day is so heartbreaking, and he is one of the "lucky" ones, very high functioning. I would not only take it away for him, I would take it away so his non ASD sister does not have to suffer, too. She doesn't get the attention she deserves because so much time and energy needs to be spent on him. She doesn't deserve to have him agressing on her, screaming at her, not being able to do things because of how he will act. Yep, I'd sell my soul to the devil, too, to take away the ASD…………..
I would love to take the autism away, but since I can't I go with plan B of using whatever means to help my son learn coping skills, be successful and learn to live and function in our neuro-typical world. Unfortunately the world isn't going to rapidly change to accept him and his uniqueness so he must learn to the best of his abilities to fit in and thrive.
I WOULD say I would hope to change certain behaviors. But I would NEVER say "I hate autism", because that is part of my child's identity. But foremost, this isn't a simple issue and can't be defined in simple (or profane) terms.
I was just thinking about this the other day. I just looked at my 10 yr.old son and just thought what if he didn't have this at all.What kind of kid would he be. I had all this plans and dreams for him and me. Would he be good in school, play sports, be a nerd or a jock. And ask girls out on dates and get married have kids. I love him a lot but hate autism so much. My son is non-verbal I have no idea if he will talk wont hear I love you mom. Makes me cry just wanting to hear that. But he has the most beautiful smiles the best hugs and kisses. He does tease his little sister a lot just like any other brother would and loves her in his own way. He has taught me things too. He never gives up on anything he taught me that and just to be in aww of things he loves to be outside and just soak up the world. Katie
Amen to that. I love my son dearly but I hate autism with a passion – he would still be the loving cute child that he is without autism, but he would also get less frustrated, our daughter could have some of our time, he would have friends, we would be able to go to restaurants and eat a normal meal as a family, we could possibly have a babysitter and go on a "childfree" night out, the list goes on and on. Thank you for blogging your TRUE feelings! xxx
I wouldn't. I have 1 severe and 1 moderate. My kids are not broken, they are not sick and they don't need a cure, and it's not bullsh*t… if you ask my daughter who is 19 and has moderate autism, she is fine with who she is, and she is highly offended when people feel she should want to be NT… why the hell should she? she likes who she is, and we are fine with who she is and her autism. She is who she is, and just the very idea that anyone would say I am full of sh*t for agreeing with my daughter, is full of it… She has autism, so I take my lead from her. You don't get to decided that she is broken, and because you want your child to be NT, that means I must want the same thing too. And no I am not afraid of change. I really don't understand all the crap parents like me get, for our beliefs. If you want to change your child/ or wish your child wasn't autistic, then great, go for it, but as I said, I have 2, one severe and one moderate. And don't think they need a cure, need to be fixed or need to change, for anyone. As for my son who is 18 and is severe, well hell, if he is fine and healthy, then why should i wish him not to be who he is. I have a NT child, my eldest. And he is fine the way he is too. This is exactly why there is so much division in the autism community… because people can't accept that every parent and child must walk the road that is best for them. and if they don't walk your road, then you must mind your own and not judge them.
I totally agree autism daddy, my favourite saying is "its just as well that your cute" I love my son so much but I hate that at almost 4yrs old he still can't talk, still wears nappies, lashes out when frustrated. He is a beautiful, loving(sometimes too loving) happy boy but his 3 big sisters get less attention and know to stay out of his way if he kicks off, it scares me for the future if the violence continues. I do my best to keep a positive attitude but reading this post and some of the comments today it is a relief to be able to say "you know what, yeah I do hate autism"
and btw, my son with severe autism also has sdcp, so no it is not an easy road, but children never are… and I don't raise $$$ for autism awareness, I don't walk, march, or any of that other stuff, I am too busy enjoying life with my kids, loving them, and all that we have. Life is hard, but i don't cry about it. I do what I can, and we just be… agree with me or not, honestly it doesn't matter, because we are fine the way we are.
I think it's really important to be honest about how we feel, even if we have to keep plugging along. I went to a conference for parents who had adopted orphans from Romania, most of whom had severe disorders including autism. The keynote speaker told the story of a mother who called her and said, "Every day I cross a bridge over the Mississippi River to take my son to therapy, and sometimes I get the impulse to just swerve into the barricade and go over the edge into the water. What should I do?" The keynote speaker replied to the mother, "If you tell me the exact time you cross, I'll have ten parents lined up behind you, waiting to go over next." Everybody laughed, but we also understood where that mother was coming from.
IMO, I really wish the autism community would change to a mindset of getting rid of the PROBLEMS associated with autism rather than the mindset of "eliminating autism." I was diagnosed Aspergers at 27, and I don't have kids, so I know I don't have the experience of the "autism parents" out there. That said, if I did have a child I would do everything I could to make sure that child could communicate, manage life skills, and was happy and healthy. That mindset wouldn't change if the child was non-verbal and autistic, or "high-functioning" autism, or neurotypical, or if they had any other disability. I, personally, like being autistic. I know I'm on the "high functioning" end of the spectrum, but I wouldn't want to eliminate autism from myself. That said, I feel that autism is such a complicated mixture of traits that you can't eliminate "autism" without eliminating the person who lives inside it. I wouldn't want a cure for autism. I would LOVE to see a cure for not being able to communicate, or not being able to self-toilet, or a cure for any of the other PROBLEMS that tend to come with autism. Please, though, don't cure autism — too many people are happy living with it. For a lot of people, autism comes with positives. Just focus on changing the negatives.
YES YES YES! I HATE it! I hate AUTISM! I wish my son didn't have every day. Every. Single. Day.
Oh my God! You hit the nail on the head. I would do anything to rid my son of Autism!
I agree, my son has severe autism, and I don't love his autism, love him not autism. Maybe it's when you are on the severe end of the spectrum you really don't love autism.
Thank you for saying it out loud, I feel this way daily, thank you
http://twinsplusonemummy.blogspot.co.uk/
I have read many of your blogs and also the comments regarding this post. I am an Autism mommy of a 20 year old severely Autistic boy. My son is non verbal, has the mental IQ of a 2 1/2 year old, gross motor and fine motor skills of maybe 5 years old. (He is also ADHD, Bi Polar and battles PICA) After long hard debate my ex husband and I put him in a group home for Children with Autism when he was 13. We did not make this choice for our selves but because it was the right thing for our child. He has thrived in his home and has reached milestones that we only dreamed about. (such as being potty trained, shaving, brushing his teeth, tying his shoes, to the extreme of teaching him NOT to eat his clothing, carpet fibers, sand and rocks.) Do I hate Autism? YES!! Did this decision to place him in a home about KILL me? YES!! Do I still have guilt because I feel my "normal" daughter was robbed of a normal childhood? YES!! But I do love my boy just the way he is! He is happy now and is comfortable in his surroundings – he has as much independence as he will ever have. He is not aware he is different and he does not care what others say or do or if they talk about him. He is content in his own little world. At this point I think I can say – I would not change him (because why say it – it can't be changed now). He has been this way for 20 years. I have accepted this Autism in my life and he is happy being who he is. I do and can relate to the many days, minutes and seconds of the past 20 years when I did feel like I could not go on. Life was hell. I won't lie it was. But I can't change" him" – it's not possible – But I have learned to accept him for who he is "My Boy" and I do love him just the way he is!!
Dear Autism Daddy…you likely wont read this and that's ok. I need to say this here if no where else. I have four kids, My oldest is PDD and old enough to vote now. My middle son is undiagnosed but in treatment for massive problems, my twins are my youngest and one has CP and one has full blown autism. I HATE Autism! I HATE CP, I hate disorders that make it hard for my kids to have the experiences I had as a kid. Instead, I have to fort knox my house, put up security cams to prevent my babes from hurting each other while I'm sleeping, deal with eating issues, chewed shirts, violence from my older kid…I live in a nightmare…My kids live in worse…Anyone who says they wouldn't change their kids, don't have MY autism, don't have my nightmares…It kills me to have no friends and family because they don't know how to deal with us. Autism has taken so much from me, but it takes far more from my kids…ALL handicapps do.
When we have children, all parents would want for their kid is a chance. With Autism there are no chance. Your chance of wanting to be a normal dad has been taken away. Your dream of throwing ball or go to the game with your son has taken away. Autism suck and we all know it. People try to spin it in a positive way to make acceptance a little easier like the saying that "when life gives you lemon make lemonade". The fact is it just doesn't get any easier. We have no other choice but to accept, but yes I would give everything and anything if I could take away my son's autism. I just want him to have a chance in life like everyone else. I'm not in those other parents' shoes so I may not understand but sometimes I wish if my son had some sort of cancer or terminal illness that can't be saved and he passed away. That might make it a little easier than Autism. To me, it would be devastated if our kid died but then the pain will lessen as time goes by and our lives will eventually become normal again. Is it selfish? Maybe, but with Autism, it's like a life sentence (not death). We have to live in constant reminder that this is Autism and it's not getting any better, just harder. It's one thing to control a 3 years old kid who's tantruming but how do you do that when he's 18? Do I have to wash my son's butt and poop for the rest of my life? What happen after I died? If you say Autism is a gift then it's a gift that will keep on giving because it'll never end and the suffering will always be a constant reminder of it. All I want for my kid is a chance, a chance to compete with other normal kids. A chance to be an independent person and contributing member of this society. Not sucking money out of it for therapy. Autism suck. No way to sugarcoat it.
My son has Cerebral Palsy, My three youngests all sit on the spectrum in different places.
I would take away the things that make them hurt, that makes others hurt them needlessly, that makes their lives so much harder than the typical struggles people face.
When people say "everyone has problems" it is true BUT autism and the other disorders make it so much hard to overcome those same typical issues "everyone" has.
My son has mild autism and is high-functioning, but I would give anything to make him normal. It breaks my heart to watch him struggle with making friends, not being affectionate, breaking routines, being deliberately mean to his older sister, not sleeping, malnutrition, slurred speech, playing with plastic coat hangers all day instead of toys, screaming meltdowns that sound like he is being murdered, eating only 5 foods, breaking every toy he and his sister have, and many other daily hindering behaviors. I would absolutely take all of this away because there are times when his medicine makes him seem more content and normal and I know that he is happier when this happens and that this is who he could be without the Autism. I love my son more than life itself and I am literally crying as I type this. There is hope, though. Certain activities force him to sideline and control his Autism. We have been taking him rollerskating and it forces him to deal with loud noises, crowds and people being around him, his attention span, and his control over what his body is doing. He loves skating and I believe there are other activities like this that can help our children self-cure.
I wrote just about the same thing on a FB post that "The Thinking Person's Guide to Autism" had regarding Autism Speaks and it's founders. And I also shared this on the page I co-admin. Talk about backlash on the post from TTPGTA! And on the page I admin it was crickets, one comment out of 2000 people.
I am astonished and flabbergasted that so many people have taken this stance. Accusing those who feel this way of not "accepting" their child or making it out like Im some sort of pathetic person for saying it. WHAT?! Who *wouldnt* want things to be easier for their child I say? To me it seems like either a)denial or b)sick and twisted thinking. Is it possible people enjoy the attention their child and themselves get? This viewpoint is so crazy to me!!
You are entitled to vent your feelings. Yes Autism Sucks!!!!. When a person says " I wouldn't change my child for the world" I think "would you like some more sever Autisic behavior to go with that?" I didn't think so. We all want the best for our children – Autism it isn't it.
Here's idea, how about you not tell other parents how THEY feel about THEIR child, some of you would change your kid yes and some of us wouldn't. What gives you the right to call BS on us and think you know how we feel?
Because, if everyone was perfectly fine with everything about autism like they say they are no one would get their children therapy, or IEP's, or take them to the neurologist, etc. Its hypocritical bullshit.
I did a lot of soul-searching and read through these comments. Lots of good thinkers here. I wrote a response on my blog, Dmitry Laughs, entitled:
What I Would Change About My Son
I'll admit that I have it somewhat compared to most parents of a child diagnosed with classic autism. But I hope I can help some fathers make sense of their feelings, too.
Give it a read, if you like, and thank you Autism Daddy.
http://dmitrylaughs.wordpress.com/2013/10/25/what-i-would-change-about-my-son/
**somewhat easy
Anyone who has a problem with what was said has no idea how hard it is or if you do have an autistic child u feel the same way and just don't want to admit it. It FUCKIN SUCKS, i'd love to give her away to some home so I can have a break from the non stop chaos that I endure all day everyday. But can't because I love her so much and know that she wouldn't be properly loved and I worry of abuse, But the thought crosses my mind daily because I need a break but never get it. I can just imagine how she feels being trapped in herself with Autism 🙁 she can't make friends or tell me about her day or about something she likes or wants to do. She can't tell me if her tummy aches or feels sick, she only gets to scream and yell and cry. She will never have sleep overs or go to sleep overs with friends from school or have that boy she crushes on at school ask her to hang out, list goes on and on. We feel exhausted and we feel angered about the unfairness and have no answers and go through our daily lives feeling lost and hopeless and sad that our child has to endure this terrible life.
I have a child with Autism, she yells she scrams spills everything out in the sink or floor, shits everywhere, spreads shit and continuously hurts her little sister and destroys my house. I HATE AUTISM…..I'm exhausted and isolated by her autism, we cant go for dinner or visit friends or do anything that family's with "normal" kids do. I'm depressed and running out of steam. I love my daughter yes but she drives me insane and I just want it to stop. I'd do anything to rid her of Autism.
A Hidden World
this poem in no way reflects my opinions on my life or family, I just feel the need to stick up for those autistic who have tragic lives.
When your forced to a corner enough times in your life,
You have no choice but to think in your own time and space,
Yet you judge too selfish and pragmatic,
As if its okay then to use that to your advantage
Since I'm autistic all my personality traits are laid out on the table,
examined and either trivialized, debated are forced to change,
Let me say one thing to you, you bastard deceivers, you cannot love and hate at the same time, you cannot love an autistic child but hate their autism,
but we are forced to be blown by strange wind, like a vessel on the most stormy seas,
We are forced to take whatever mood you give us and be happy,
that you haven't killed us yet,
Count your blessings, you weren't randomly tazed,
your parents don't openly hate you because for now your pleasantly strange
When things are never open in your direction, no conversation, no passion directed toward your frame, you take care of yourself, if you can,
You keep every less than judgemental stare as the holy grail and even though its a passerby, in your heart they gain a sacred place
and then you go home to the people who hold your world
and realize, they've given up on you long ago
They don't see a darling child,
They see an alien,
You get tucked in tight with vehement,
walk, talk, sleep, retreat, repeat.
copyright2013@Erik Estabrook
I can't agree with any of your pet peeves. I wouldn't change my daughter, Edith for anything in the world, despite the stress that her autism has added to our lives. If I did, she would cease to be Edith. She would cease to be the little girl who teaches me so much about life that I, in my "neuro-typical" state fails to see.
And I do believe that God only gives you what you can handle, to believe otherwise is misalign the rest of us parent who struggle with autism.
Autism Daddy, that you would prefer to solve your "problem child" disturbs me and speaks to the limits of your personal character to live with the cards you've been dealt.
The fact that you pretend that daddies like me aren't authentic is insulting, which is your 1rst Amendment right to say. But you don't have a constitutional right to my respect. All I can say is shame on you!
My second job is as an ABA therapist and for the near past 2 years I have worked with a variety of different clients on the spectrum. Thank God I don't approach these clients with your attitude.
I would suggest you revisit your, "Autism Daddy Manifesto" and do some serious re-thinking of it. The cure for autism, at this juncture is a pipe dream that is far off, so acceptance is a much better path to walk down. The numbers between those without autism and those with autism keep shrinking. Time to embrace this population, not complain about them or seek some kind of "cure". I am disappointed in you. I can only hope that this post is not characteristic of you.
I don't think the parents would be saying those things if their kid could read. Comments like this are why parents of HF kids don't 'get it'
All these parents saying how awful their kid is and how they would change them… how would you child feel if they read that? Do you think about them or is it all about you?
I don't think that he is telling you that you are not authentic, I think that he is saying that it is OK to be ticked off about it. I've spent many thousands of dollars with ABA and every other therapy available including a DAN doctor with his Oxygen therapy etc. Nothing has worked for my son and it is nice to hear a parent speak honestly about this issue.
You are the man! I tried to go to some Autism parent meetings and that's all it was about "I wouldn't change a thing" I thought bull crap and got the heck out of there. I get sick to my stomach sometimes wishing my son wasn't the kid in the restaurant flapping like crazy and going wild. I tried the "This is what God gave me crap" and it doesn't work. I love my little guy, but if someone told me there was a cure, all he had to do was whatever, I would be the first in line! I have conversations with my son but it's the same conversation over and over. He asks the same questions and I give the same answers day after day. I'm tired of the awareness stuff and let's get to a figuring this out and cure it stuff. Thank you for this, I don't feel like such a jerk for my thoughts anymore.
http://www.youtube.com/watch?v=ouUenJpWc2Q
I would give anything to have a conversation with my son. A real conversation. I want to know that when he says I love you he is really saying it. I would give anything to change him. Anything.
I would change him. I would toilet train him. I would give him a voice. I would teach him to read. I would take him to Yellowstone National Park. I would sign him up for soccer. I would help him to understand right touches from wrong touches. The most important thing I could never teach him – to love. He knows it, it's inherent in him, he has never not known it. He has taught me to do it. It's so hard, but I'm learning it and he's teaching me all the time. But autism — it really frickin' sucks and I would trade it, trade places with him in a New York minute.
Autism Daddy
I totally agree with you. I know every parent of Autistic child at one time or another hates that thier child has Autism (if they are honest with themselve). Thanks to Autism I'll never see my son graduate from a normal school, Ill never see my son get married and I'll never get to hold my grandchild. Hell yes if I could change Autism I would. I love my child and would do anything in world for him. I agree I'm mad as hell that my son doesn't get a normal life. Keep on writing because this Autism Mommy know where your coming from
I gotta say I stumbled across this site the other night and I think it's pretty cool. You seriously do need to vent. I was having a similar conversation with one of my best friends last year whose little brother has severe autism, or should I say profound autism. I've known him all my life. He's 17 and is not potty trained, non-verbal, and has to have three people working with him with protective gear at all times…we all wish we could just get inside his head and figure out what he wants, thinks and feels. But when I talked to her, and we have never discussed this because i always got the feeling she didn't want to, she said she really wouldn't change him. It didn't make sense to me, but I don't have a brother with autism, so I can't speak to it at all. Maybe it's because he's her brother and not her son and she doesn't have that whole "want what's best for him" parental instinct. She just can't imagine him any differently because she's grown up with him. I just thought it was an interesting perspective from a neurotypical sibling of a person with autism which it sounds like is the case for a lot of you folks. Maybe you should vent with them too, you may be surprised how the feel…
-mary
well said
Bull !!! I would change having to change the diaper of a 14yr old. How do I get upset with others for not wanting to deal with him when I don't like to deal with him most of the time. I hate ASD with all my heart but according to most I should love it, if only I could be honest without being judge.
My son has Aspergers and P.D.A., until he was around 13 his behaviour was continually very challenging. Things have calmed down now he is 20 but life is so hard for him which in turn makes my life tough too. I would sell my soul to rid him of this blight.It makes me constantly sick to the stomach that he has to cope with this for the rest of his life
Awesome!!! My first blog post, ever, was yesterday for Awareness Day and followed the same thoughts. http://movingtowardsareallife.blogspot.com/2013/04/world-autism-awareness-day-or-why-am-i.html?m=1
My son is High Functioning, but I hate Autism and I would take every bit of it out of him!!!
Hello. Before reading all of the comments, I want to tell you about me.
When I was a young child, my mom told me that I said things that would upset her, and that she was going to start smacking me every time I was inappropriate (this was the early 70s). I was not saying anything intentionally wrong (and it definitely had no bad words or anything – often it was even questions). Some time later – not sure how many months or even if it might have been longer – she reached to adjust a barrette in my hair and I flinched away from her. Her face went sad because she realized she made her little girl afraid of her.
When my dad remarried, my stepmother was a teacher and getting her master's degree in psychology. She described me as 'emotionally retarded,' because I could not make friends or interact 'age appropriately' with other people. I rarely had friends and found people confusing and frightening – they never followed the rules and didn't act right.
Years later I went to counseling. The psychologist insisted on a 'full' IQ test. When the results came back, the psychologist explained to me that parts of my IQ test couldn't be measured because I got them all right. Other parts of the IQ test I tested as retarded. He explained that I felt so alone and like I was a watcher from somewhere else because my brain doesn't work like most people's (normal people, I guess) and that all his tests showed that. I think this was long before Asperger's was commonly diagnosed, though, or maybe he just wrote down that diagnosis and explained it rather than telling me that he diagnosed me with it.
I can tell you, obviously, that even though I was good at getting my school work done, sometimes perfectly, it is very obvious when observing those whose job it was to 'raise' me that they very much wanted to change me. They wanted me to be like everyone else and normal.
I don't know if I ever wanted to be normal as much as I just wanted to understand why everyone was different from me. I wanted to know how other people were so I could predict what they would do, and so I would know how to act and what to say so they wouldn't give me strange looks, call me names, or just get quiet or walk away snickering.
Now I am a parent, and as a parent, I agree – there is no parent in this world who doesn't want their child to have the very best, happiest, most wonderful life, and a life outside of 'neurotypical' doesn't necessarily give you one that looks all that satisfying from the outside. However, when you get old enough to be comfortable in your skin and you have people who can love you as you are, life, even if you are not neurotypical, doesn't have to be bad.
It is fine to let it be different.
Lisa B, not typical, but fine with it
God Bless you for speaking the truth. Not one minute in every day do I not WISH I could change the Autism and Epilepsy that my 6 year old suffers from. And I do mean SUFFERS FROM. We all get to suffer from it…because it does not only effect him, but it effects our entire family. Autism and epilepsy (combined) is a night-mare, that leaves you feeling HELPLESS and unless you get to live it, other people have no right to judge.
No. No no no no. You cannot hate and love the same thing. You cannot hate the very thing that makes you child who he is. You cannot want him to have the same personality, but without the autism. The autism MAKES his personality. Without the autism, he would not be the same. He would not BE "Kyle".
My son is autistic. He is non verbal, and he is very much disabled. But I LOVE him, unconditionally with no barriers. I have NO hate for any part of him, even the bad parts. We go to therapy to help teach him ways to live in his world without feeling like he needs to bang his head. That's not CHANGING him, that's giving him the tools to succeed, just as you do with ANY child. Autistic kids just need DIFFERENT tools, and we go to therapy to learn how to help him learn.
Hate and love cannot exist together. Any hate you have toward your child, takes away from the love. Period.
Yes. Absolutely. Thank you.
Hate is an understatement for how i feel about this body snatching disorder! I will NEVER say i wouldnt change my son because i know if it were up to MY SON he wouldnt want this! HE would change it! HE would speak! HE would tell me he loves me and call me mama! HE would tell me whats wrong, what hes hungry for, why hes crying! HE would want to bond with his baby brother and actualy understand that is his brother! HE would have a voice! So to anybody that is saying they wouldnt change their child that is beyond a selfish statement! Not only does this kill me but it kills him too every child deserves to grow up and be able to play sports, go to a public school among functioning children, make friends, go on dates, go to college, have a career, get married and have children of their own! So many autistic children will never get to experience this! And that is what KILLS me imagining my sons future it shatters my heart FOR HIM. I would suffer the worst pain a million times over for my baby to be cured! I gave birth to a GORGEOUS intelligent babyboy and lost him after the MMR vaccine! And yes i say lost him, i lost the child that was speaking that understood words that called me mama. I have an extremely hard time coping and i always will ill never be whole again or ok until my son is ok and if he never is well neither am i! This is the truth of it! I LOVE my son i HATE autism!! And i hate myself for trusting a doctor and letting them vaccinate my son ill never forgive myself for that!
Fuck your life and minivan look like a living hell. Why didn't you find someone with better genes, or hey, just not reproduce and this wouldn't have happened. Wow, I wouldn't be celebrating my life, i'd be hanging myself, or running far far away
-Hayley
Nice job "Hayley" making fun of parents of kids with autism. Go get a life and stop reading my blog asshole!
I am a single mother of two autistic children,I really hate autism..Don't get me wrong I love my kids very much with every fiber in my body.My whole entire life is revolved around them,i have never been on a date because my kids don't handle sitter's well.We never go to family get together's because my family has made it clear they don't want us around. If I could take away my children's autism there would be no second guessing it at all.
I have two sons with autism. One is severe and the other is mild. One with mild autism is much easier to deal with compared to the severe one.
You wouldn`t change him for the world? You would change your thought right away if you had a severe case child. Please,don't say that in front of me.
That's why I quit my "support group." The group's founder kept saying that autism made her son special, made him think in a special way. Oh, really? For someone who thinks autism is a special gift, you sure have tried hard to get rid of it! I would change so much… I'm glad some of us still have the common sense to know the difference between good and bad "gifts." My husband keeps reminding me that one day, we will see our son perfectly whole in body and mind. I believe his spirit is already whole. I wrestle with God, but I still believe. (Syd)
I put it this way the other day: My kid doesn't suck, but sometimes his autism does.
When his meds are working, and he's his quirky but lovable self, it doesn't suck so much. Sure, it would be nice if, at age 15, he could safely cross a busy street by himself, and take some mainstream classes at his high school, but he loves school and enjoys his special interests. Not that his special interests make up for his social and intellectual deficits. Impressionist art? Sure. (Too bad he dropped that one.) Dental floss? Cash register receipts? Corporate logos? Not so much.
When his meds aren't working, and he's sleeping less than four hours a night, and screaming and pounding on the walls and trying to hurt himself and others, when he physically attacks every member of the family every day for a month or more, saying, "I'm going to kill you!" and meaning it, it sucks to be him, and it sucks to live with him.
The other thing that sucks is the general public expecting him to have some savant skill, and certain autistic celebrities encouraging this idea. They credit autism with their brilliance. Can we also blame it for his meltdowns? Some people's autism sucks worse than others'.
If I could change anything about my son's Autism, it would be how the world sees him.
Autism sucks! It has stolen the life of my 17 year old son. He's reaching adulthood and what the hell is he going to do? How many low level jobs are there these days? Oh yeah, and the college applications arrive on a weekly basis.(just turn the knife.)I adore my son, but autism really pisses me off. Thanks so much for a place to vent. It doesn't change anything, of course, but sometimes I just need say how I really feel.
As an individual, autism or no, I want to change myself. I don't want to be the same person I was when I was 10 or 20 or 30. I want to grow, learn and evolve and those things mean change. And I want those same things for my children. I want their lives to improve just as mine has over the years.
Luckily we've had a lot of success! When I got custody of my kids almost 2 years ago now, all 3 of them were 1-2 years behind in school. They were undisciplined, they were depressed, they had no structure or self-confidence. (They were dealing with a serious problem with their mother who was developing Alzheimer's disease and in her deteriorating condition she didn't have the ability to keep them fed and clothed, etc.)
Within the first year we've managed to get them to a place where they're all caught-up, mostly A-B students in school now, they have confidence and they're happy! That's a good change!
I think this is a stupid debate. No one can prove that your child would not be the unique individual that you love with out autism!!! There are lots of unique typical kids and whats to say with out autism your child would not be the same only typical. My daughter has very very mild asd and is also a very bright and I see her struggle everyday because she can not communicate the world as she sees it. She struggles to be heard and is often frustrated by the fact she can not express herself the way she wants to. I think it is silly to think children with autism dont want to speak and communicate and tell there parents how much they love them and how the world looks to them. I think that saying you want to take away autism for your self is being selfish because most kids would like to express themselves in ways that the world around them can understand. It is almost becoming a fab among asd parents to feel that their child would not be the same without this difference but I say they probably would be the same. They may be able to express themselves and the way they see the world around them with out the frustration they feel from the sensory issues/inability to deal with emotions and frustrations. Do any of you know what unpleasant sensations feel like to an asd child? It is like a physical pain or discomfort. Why would you want your child to feel pain because they hear/see/smell/ or feel to much? Do you know what it feels like to not be able to deal with your emotions? That can also be an almost physical pain and to say that the kids should continue to suffer through those issue is ridiculous. Say you love them for their unique quirkiness but dont condemn them to all the pain and frustration that comes from the over sensitivity and inability to deal with emotions. Its like telling someone who is schizophrenic to enjoy the voices, when they know that they are not real!
Yes, Hating autism doesn't mean you hate your autistic kid. Well said mate.
Thank you! Last year when my sons were diagnosed, I reached out on the internet to find support and was faced with this very thing. It hurt me so badly because I was still so raw and grieving. I'm still reluctant to reach out to anyone now. This is why A is so different from many childhood diseases… this particular controversy, not to mention the vaccination/cause controversy. It's sad that we can't just support one another instead of judging and fighting with others. Thanks again.
I'd take away the Autism in an instant!!
as a mother of a daughter with Down Syndrome, ASD, OCD, ODD, hearing and speach impaired, Moya Moya, and desorders from stroke to name afew! I so understand this i love her to death BUT if i could just get rid of some of her issuse i'd be very happy more for her. things like being able to where her hearing aids with out a fight.. sensory issuse. having to hid the razor's because she shaves her toung. get her to "speak out if she has been hurt by some one" the tv and stero fullball at the same time playing the same thing over and over. being able to go shopping without her sitting in the middle of isle, or get to the shop and her refuseing to get out of the car. for her to cope with going to get her hair done not haveing "a bad 2 days" just the little things that would help be safe in this world… don't get me wrong i love her the way she is i just wish life was easier for her every day i hear parent say "i wouldn't change them for the world" i ask why? my answer is well why say "you need help with….." or is this because your comforable with you child this way and it excuse you from doing things! i wish i could remove as much as i could, why for her…. for her to be able to be more comforable in her skin, so thing don't upset her so much, for her to understand life more, for her to stand up and say someone or something is hurting her but most of all for her to happy and not have the fear of every thing around her
so to all the parent that say i would change anything about thier child with a disability, i say you are full of shit! other wise you would have done it from birth with no help at all that includes having the dinosed with what ever, then getting "support". because every time you hand them that toy to play with or pen to draw with, you are trying to teach them some thing new "YOU ARE CHANGING THEM" and if a parent say other wise they are the one's that just sit around and doing nothing the child!
sorry i ment "i wouldn't change a thing" not i would change a thing
Yes, I hear this all the time from parents with kiddos with every kind of disability. I have a son with cerebral palsy and I would change him in a second! I would not change the things I have learned about who I am as a woman, a wife and a mother but if I could Chang him from this moment on OF COURSE I would. I feel you are incredibly selfish human being if you wouldn't want to make your child's life better. No, no honey I love watching you struggle to tell me how you feel, I love watching you long to play with other children and run around at the park but you can't because your body doesn't work right. ARE YOU INSANE…if you had the choice (any parent who says that statement) to help your child not be locked in their own body or mind your would not help them!! So if you (lady in previous comment) ever get in to a serious accident and have a spinal or brain injury and there is a way to help you than I think the doctors should just dangle the cure in front of your eyes and say…"this is what God wanted for you…He also made us smart enough to help you but we would rather watch you suffer because this is what God wanted for you". Just so you know I am a Christian and I think it's insane that you think this is what God would truly desire for any child. God sends his help in many ways and if you would choose to ignore Him, you are the selfish ignorant one.
Sorry for the rant but people are truly insane!! Like you said, wanting better for your child does not mean you don't love your child it means quite the opposite. If your child was born into poverty I'm sure you wouldn't encourage them to stay in poverty because you think that's where God wanted them or they wouldn't have been born there. Uggg
Amazingly awesome post…thank you!
I'M ONE OF THOSE PEOPLE I WOULDN'T CHANGE BRIAN FOR THE WORLD BECAUSE IF I DID HE WOULD BE SOMEONE ELSE AND SOMETHING ELSE AND THAT'S NOT WHO HE IS. AND YES TOMORROW HE WILL SAY "SWIPER NO SWIPING" 100 TIMES, HE WILL PROBABLY POOP ON THE RUG, HE WILL PLAY WITH THE SAME BUS ALL DAY LONG, HE WILL IGNORE HIS LITTLE BROTHER, HE WILL ASK TO GO TO GRAMPA'S HOUSE 100 TIMES EVEN THOUGH GRANDPA IS NO LONGER WITH US, HE WILL HAVE 1 OR 2 MILD OR MORE THAN MILD MELTDOWNS ETC ETC ETC AND TO ALL OF THIS I SAY "I WOULD NOT CHANGE HIM FOR THE WORLD AND I AM PROUD TO SAY THAT I HAVE NEVER EVEN THOUGHT ABOUT IT. AND TO YOU I SAY THAT WHAT I WISH IS NOT BULLSHIT BECAUSE IT HAS ALREADY BEEN FULFILLED, BUT THANK YOU FOR TRYING TO TELL ME HOW I SHOULD FEEL, BUT MAYBE, JUST MAYBE HOW YOU FEEL IS TOTAL BULLSHIT, BUT I WON'T SAY THAT BECAUSE HOW YOU FEEL IS HOW YOU FEEL AND THAT IS WHAT MAKES YOU EXTRAORDINARY AND GREAT AND AN AMERICAN. THE ONLY OTHER THING I NEED TO QUALIFY HERE IS THE FACT THAT SOME PEOPLE MIGHT SAY, BUT YOUR ASD KID CAN TALK, AND TO THAT I CAN SAY THAT'S A BONUS, BECAZUSE IF HE DIDN'T I WOULD STILL FEEL THE SAME WAY. THIS IS HOW GOD CREATED HIM AND HOW HE WAS MEANT TO BE CREATED.
Autism Daddy's son is completely non-verbal as is my 9 year old son (also not toilet trained). And God did not create my son this way either. He was developing typically and then changed, lost all his words due to over vaccinating in one doctor visit. This is NOT God given, it's vaccine injury thanks to our society.
so would I change him to the way that God had intended him to be? Absolutely.
Bullshit. Youre saying you are content with the life your son lives?? Youre content with the fact he may never live a normal life, may never marry or have a family of his own?? May never attend college, go to partys?? May never live except in his own mind??? How the hell can you accept that and be ok with it???? And god didnt create him this way something went wrong either in your womb or after he was born dont blame god for this sad disorder, it isnt fair what these children are going through compared to the children running around playing having a social life! I believe people like you are indenial or just accept this, ill pray for your son.
POST BY RITA MARIE
Found this on facebook. I am a "veteran" ASD parent, as I was the parent back in the early 1990's who had no idea what happened to her son one day in August 1994. (DTaP) was the culprit, but minus the cause, and moving forward….my son is now almost 21! He is going to transition into adult life……minus the driver's license, minus the high school graduation, minus looking for colleges, minus the dating scene, and the girls.
We presently look at group homes, and discuss the job opportunities that he most likely will never have, due to his low cognitive abilities. We are faced with adulthood, in a society that insists on independant living, for a young man who needs so much assistance to recover from the vaccine injury, we call Autism.
As a RN, I use to see so many parents holding babies coming into the ER, with all sorts of issues post vaccine. I look at society today, and think….What the hell are we doing to our kids?
I also love my son, hate the Autism. I hate the behavior in his disability. I hate the GI issues, I really hate the OCD….man…do I hate that! What I hate the most….is the fact that he will live a very dependant life, for the rest of his life. As much as DDD pushes these guys to be independant, I have to trust the non trained highschool drop outs who work in the group homes. It is a system designed for failure…..I can go on and on, but I will cut it short here.
I love this post, well said!
My son is high functioning, 5 years old, and only recently diagnosed. I realise he has been autistic since birth, however I remember when he presented as a typical kid. Would I change his autism? ABSOLUTELY!!! Would I do anything to change the fact that he was so looking forward to school, and now he is in a support class instead of the mainstream class he started in? F*#KING OATH!!! Would I give him the chance to have a "normal" relationship with his siblings? IN A HEARTBEAT!!! Would I give him the chance to live life the way he wants to??? YES, WITHOUT LOOKING BACK!!!
Would I swap him for the world??? NO WAY!!! I love my son with Autism, I miss my son who "seemed normal", I have 5 typical kids, and they miss their brother… so yes, I would change him, BECAUSE I love him; for himself, for his siblings, for his classmates, and yes for myself and my husband
At the end of the day, there is no magic wand to wave so we live each day as it comes, some are good, some are horrific, but that's what you sign up for when you become a parent… the unknown, the chance that this person you have created will need you for every single minute of every day for the rest of your life, and that no matter what their needs are, you will do anything and everything you can for them, and above all else, you will still love them
After reading just about all of the comments, I keep wondering, why are people slamming Autism Daddy for writing how he feels? He has every right to feel the way he does. All of you do too. We don't have to agree, but, be respectful of others feelings.
To those of you who wouldn't change anything, well, you must have an easy life. I on the other hand deal with a severly affected child. Is he happy, most of the time. But, he is also going to live with us forever, never have a job, possibly never even potty trained. Sounds awesome, huh? Oh wait, maybe when we die, he'll get to live in a home where he might get treated well, or maybe not. So much to look forward too, not.
Would I like my son to be just like he is now, not potty trained, can't drink out of an open cup, can't speak, can't bathe himself, brush his own teeth, feed himself, understand danger, shitting all over the floor, crying in pain and I can't figure out why. Wow, what an awesome life. Or, the opposite of all of this? Let me think.
Yes, I've never heard a parent of a severely affected child say "I don't want a cure for autism". It just doesn't happen. Well, it might… but nobody in their RIGHT mind would WANT their kid to suffer like that. All the anti-curists tend to have it five-star easy! They have no idea. None.
I've noticed that people who have high functioning autism or asperger's take offense to people who medically treat their child's autism. They've been told over and over throughout their lives that they're 'special' and 'perfect' just the way they are. This kind of attitude is indicative of a disorder which is untreatable and creating a positive attitude towards it in order to combat it makes sense.
However, autism is treatable, so to rely solely on the idea that you are MEANT to have the disorder is wrong. You may continue to have it even with treatment, and you are special in the sense that not everybody has the disorder, but it is not some fantastic thing that everybody wants and you are not tampering with the self by combating it.
By saying it's undesirable to have autism, you are saying that they are undesirable people who should be cured. For them it IS a choice. Now that they are adults, they can choose to continue to have autism or to try new treatments that may reverse it or greatly reduce its symptoms. But they have been this way their entire life and know no other way of being. Because their parents/teachers have told them the old rhetoric over and over, they now believe they are supposed to be this way and that it is who they are. They ARE autism. Why would you want to cure what you are? And since it's so fabulous, it's actually exciting to have children who are also autistic. Yay!
Besides, a lot of HFA/Aspies like feeling they belong to an exclusive club. If they are cured, they wouldn't really belong to it anymore. Their lives are so intertwined with their disorder they would have no idea how to live without it.
Some parents (and HFA/Aspies themselves) have a hard time distinguishing the personality from the autism. If someone is depressed they say "that's not them! let's treat it!", when the person is treated and returns to a happy state they say "i'm glad they're back to their old self!". Did they really change? No, not really. They are the exact same person, but what was hindering them from living the life they want is now gone.
Autism is a disorder, not a personality type. Some of it might seem like a positive thing–like permanent innocence, the inability to lie, the inability to get mad, or the ability to know every single thing about a subject. These things are in actuality a lack of cognition and emotional maturity, and OCD. Once you see it for what it is, it becomes less and less about personality and more about not experiencing the human condition. So in the end, you do not have a truthful child, you have a cognitively delayed child.
I agree with everything here.
I would not only change my sons asperbers but I would change all the kids out there that are cruel to my son because he is different. Only eat PB&J's, doesn't make eye contact, talks in a monatone voice and talks nonstop about whatever his obsession is at that time..Pokemon, angry birds, computer games etc…He was stuck on Mythology for awhile and at 10 years old he knows more about that than I do. We can also learn from our autistic kids. Thank you for your post!
I couldn't agree more, by the way the GFCF diet is doing wonders for my son, I see more of his personality every day, and he's happier because he can communicate 🙂 What parent wouldn't want that?
Yes Ty for this I think this everytime I hear it!!! awesome blog btw!
Do we as parents even really have a say so in this? Let's pretend we live in the magical world of the autism vaccine. One shot and the autism is cured. Okay. My son is three, and will only be a child–in the legal sense of the word–for another fifteen years. He'll be an adult for the next 60-70 years. And I think as parents we forget that. This wouldn't just be a situation where you can "change your kid." It would be changing the possible outcome of every situation in every aspect of his life for decades to come. I don't think that's a choice for me or any parent to make.
I guess what I'm trying to say is, this isn't my disorder. I can hold his hand every step of the way, but this is my son's journey; not mine. If I had the chance to change him and make the autism go away, I'd ask him what HE wanted. It's tied into his personality. For better or worse I couldn't just upend that without at least some feedback from my son.
I would change the fact that my child has Autism, but I can't so I have learned to accept it and try and make the best of it. But, if there is someone that says "they wouldn't change it" and they truly feel that way than more power to them, to each his own, I don't think there is a need to make it an issue, nor debate about it, or even doubt that they really mean what they say because you don't live in their world.
That was a really good post. I couldnt agree with you more.
I wish the autism community wasnt so polarised. Whatever we think, we're all just trying to do the best for our kids. I am with you Autism Daddy in that I would change my son's autism in a heartbeat if I could, and I've written about that here: http://notnigellanotjamie.blogspot.com/2012/01/ignition.html I too feel frustrated with parents who take the line of not changing their kids autism but I do think we need to move towards a position where the 'no changers' tolerate the 'changers' and vice versa. We should all have the right to do what we think is best and to be supported with information about and access to those choices. I am absolutely an advocate of working on the difficulties at the heart of autism in order to improve the quality of life and life chances of children with autism and their families. If some people dont want to work on those core difficulties – fine….as long as that doesnt interfere with my right to make those changes.
my son is 2 (3rd birthday in one month!) and i really wouldn't change him for the world. he's such a special, amazing little guy, if his autism was magically gone one day he wouldn't be the same kid he is now. it's frustrating and aggravating and sometimes i just want to scream. maybe because my son's autism is less severe i can't relate to what you're going through, but he is who he is and i am at peace with that. he goes to a special pre-school and gets some services at home, but that's not to change him, that's to help him learn what every other child learns at his age, other 2 year old just learn it with less effort on the part of their parents and other adults in their lives. giving children their best chance at a happy life is what parenting is about, that's what every parent does. that's what you do, and i do, and the parents who get their kids more resources, even the parents who don't do that, are still doing what they think is the best for their kids…
Ok, there are definitely things I agree and disagree with in this whole blog and comment. On thing the annoyed the $h*t out of me though, was seeing some compare their situation with others. WTH! We will get NO where in helping our children if we start getting in to that battle. We all are faced with challenges that SUCK! And we all see things in our children we LOVE! But one thing that is for ABSOLUTE sure, we all need to stand united and fight for our CHILDRENS' rights and support. We need to stick together through the crappy and the great. No one here is going to be in the EXACT same situation as another unless its your spouse. We are all individuals, children included. The main thing is that we can relate to one another, some more than others. And when you can find a group, or even just one person, who has some understanding of what you are going through, that is better than feeling alone. Here is to NOT being alone!
I totally agree… My son is high functioning, but still can't have a conversation, unless it's an entire scene from a movie. The other day we were sitting next to a family with a boy the same age and the balloon guy came up to make him a balloon animal and he asked what his favorite colors are and how old he was and he was almost 5 – and I found myself declining a balloon animal knowing that he'd ask Bradley the same questions and get no response and I would just have to answer for him…..he was too into his game on my iphone anyways…but, for a moment I thought how much I wished Bradley could just answer simple quesitons. There are many things I wouldn't change, but there are a LOT of things I would!
If it meant I could have a conversation with my son, know what he thinks and feels and what he KNOWS; In a MILI second I would take away hs Austim,. THANK YOU FOR MAKING ME NOT FEEL ALONE, THE FIRST TIME IN 8 MONTHS! -Amanda
I am someone who says this about my girl often, but I don't think that I am actually saying what I mean. Certainly, I would love to not deal with her rituals and overstimulation, and other Autistic behaviors. I definitely wish she didn't have epilepsy that so often goes along with Autism. What I mean, though, when I say "I would not change her" are the quirky, funny, and silly parts of her personality that would also go away if Autism did.
BTW…I love your blog, Autism Daddy. ~pjsmommy
ok, at first i was like, is this man crazy?? and then i read it, the whole thang!! not parts of it … and i realize that while some would be pissed off just reading the title, you actually have a good point … i know there are some people out there who do think that … my son was born with it .. and i do feel for those whose kids are more severe, i really do … but you do make a good point!! glad i read it! 🙂
and i agree, i would like for society to change, see his world .. because i know i cannot change what already is … be a nice idea tho …
I hear this phrase uttered a lot in the SN community, even with other disorders. My son has Aspergers, CP, Asthma and a few other things. Sometimes, I ask myself, would I change this if I could. Honestly, I don't know. If I took away his "issues," would I be doing it for me or for him? Am i taking them away because The World doesn't accept him? Am I making him conform just because of what others expect? If I take it away, how would it change him? Would he no longer be in love with Star Trek? Would he not obsess over Mario so much that he has no interest in playing anymore? Would he not be happy sitting under me on the couch playing video games on Saturday morning? Will I miss laughing as I watch him eat boiled eggs with sour cream? Would he give me the elaborate story telling when telling me a dream to the point that I'm convinced he's making this up as he goes? What would I lose about him? Yeah, the emabarassing sensory overloads in public would stop. Yeah, he'd eat the food on his plate without gagging from texture. There would be no more ABA. No running back and forth to therapies. He would have been able to participate in T-ball and actually finish a game. I would know when he's in pain. He would be able to play outside for more than 5min. But would he still be the same kid?
I never utter this statement cause I don't know if I would or wouldn't. He's fine who he is. I'm fine who I am. I have accepted our life and moved on. In fact, i wouldn't change him or me. I would change society that says HE must conform.
I feel you nailed it on the head. we hurt for the pain, and unfairness that other ppl treat our children. yes i would take that away, but i can honestly say that i wouldnt change her… right now she doesnt understand when she is being shunned, or treated poorly maybe one day she will , but i pray not. that is one thing i would do anything to save her from. i think society needs to be more accepting to asd individuals… i am in total agreement with you … thank you for expressing it so well
You are completely and 100 percent right.
A great number of people with disabilities do not wish to be different. Research the deaf community for an example. Many autistic adult (even the ones who are not at all "high functioning") state the same.
If I could parse out the crap of Autism that is in me and keep the good of it with a simple pill, I would do it in a heartbeat. But I find that I am pretty much a loner in that mindset in the autistic community.
Most of us are very happy with who we are but are only hurt by the societies that shun us and want to change us.
I have to agree with the poster who said she hopes his son never reads this. It is very hurtful to read because I am reading in literally. I know there is another meaning in there which more closelly aligns to my starting statement about parsing the crap from the good but that is not how this overall reads from my very literal eyes.
Me thinks the son will one day grow up with similar eyes to me and also we join our community accepting of himself like many of the rest.
I commented in the form of a blog post: http://poopingredguy.blogspot.com/2012/01/changing-your-child-for-world.htm
Howdy!! And THANK YOU for your honesty!! It is refreshing. I have to say….I can't wait to read your other blogs on Reigion, etc. I have a feeling I will like them as well.
I think people say it because they know they can't change it. It's their way of accepting the inevitable. They fear their distaste for the diagnosis will manifest itself as distaste for the child. Just my two cents.
You worded it well though…You can love one and still hate the other.
My child is moderately functioning. He barely talks, except to repeat things…or to request what he wants…and yes…I would take away his autism in a heartbeat.
Again, well said…and your honesty is great. Keep it up. Keep venting here.
Erin
Hey guys, thanks for all your feedback… Both positive and negative… Seriously, I'm a big boy I can handle the criticism and negative comments….
Anyway, instead of responding to each comment I wrote a follow up blog post today that better explains my view and where I was coming from.
You can find it at
http://autism-daddy.blogspot.com/2012/01/followup-to-yesterdays-controversial.html
at. . . ?
I was going to reply to this post, but when I saw your comment I figured I'd read the followup, but there's no link (at least that I see) in your comment.
I can see why there is such divide over this because autism is so intrinsically linked to the personalities of our kids, it becomes who they are. I'm not sure who my son and daughter would be without it (they're high functioning, adhd and aspergers), but I'm damn sure they would be happier. The bottom line, to me, as a mum who loves my kids is that I want for them whatever makes them happy. I've watched them both struggle through their childhoods because of their asd. Not just that but it makes family life that bit harder on their siblings too. To me this is not a moral issue, if you could do anything to make your kids lives better, you do it. Yes the world should be more tolerant, but it isn't, and in my oppinion, to raise kids to expect things from the world that they just aren't gonna get is setting them up for a major fall.
i hear what you are saying, but I wouldn't change my 2 ASD boys for the world, and I have 2 NT boys so i know what "normal" is. I would make the world more accepting of my ASD boys and the world less confusing for them but if you take away their Autism, you would be taking away parts of their personality that I love and are great and funny and heart warming etc. If you could take away the bad parts and leave the good, then great but so many of their good parts are ASD related
i agree… to change my 13 year old daughter would be to change who she is…. i love the wonderfully caring, loving, super special individual that she is. I dont know the person she would be if anything were to change. yes i get frustrated, but just like someone else said….she has taught me more in the 13 years that i have been blessed to have her in my life than anything else has. i do wish that society would become more aware and accepting but…. i will love her anyway i can get her. we almost lost her recently, so i am a little emotional on the subject. she was facing brain-damage, and yeah maybe if it wasnt for the asd the problems wouldnt have cropped up, but i have her and i thank God that she is still with me, with all her issues …. i love her the way she is and i really wouldnt change her. my family and i have talked and all of us agree she is beyond amazing…. i know you all love your children, and just wish that they werent treated with the utter ignorance that goes along with this, and i know that frustrates us all. we need to find a way to make society more understanding or at least more aware….
Right, so I read the blog, spot on as per usual. I also read a lot of the comments. What a bunch of selfish, self absorbed, liberal ass clowns. If I could get a cure for my son, Id be all over it. Every now and again I get a glimpse of clarity from my kid. He is high functioning, but sometimes the stabby, screaming, non sleeping, hitting, CONSTANTLY at odds behavior gives me cause to WISH he was normal. Sometimes, when all his meds work right, when the moon is alined with Orion and God wants to smile on my family, Jack is a cool kid. Will sit and chat about what he's thinking and tell me he loves me. Its effing great. Screw what he is teaching me in life. This is HIS life. What I learn, what I need, its irrelevant. He is a cool kid, he is smart as hell and his ADHD/ASD is a DISABILITY. The world will never know him like I do and that SUCKS for him and the world. SO yeah, If I could take his disability away? Count me in! Amen Brother. Keep fighting the good fight.
Super secret squirrel sub wife
You're the first person to bring politics into this. Just goes to show how partisanship is an illness in and of itself, albeit self inflicted.
I love your blogs and usually find them to be right on! Today, I have to disagree. I have two kids on the spectrum, one who was NOT high functioning but now is. I used to think… anyone who says that is full of it. Then she really improved. And now I think, -"But my child has TAUGHT ME SO MUCH about, parenting, tolerance, ignorance, acceptance, sociology, and myself. I WOULD NOT BE WHO I AM TODAY if she was "typical"". Oh, yeah, she sometimes gets bullied, and we are learning how to cope and deal. But, my neighbor's typical kids get bullied. Just because my child is autistic does not mean that bullying is automatic, and the same holds true for typical kids.. because they are typical doesnt mean they WONT get bullied. Frankly I feel more sorry for the spoiled little shits that are the bullies. Its obvious their parents spend no time with them to teach them right from wrong. My child gets a lot of love and attention from her assistants, peers, and family. Its obvious bullies do not. You know.. it doesnt make me a liar to wish we were all SMART enough to accept and tolerate all others – or wish the BEST for our kids, but also accept their differences and opportunities as well as their unique strengths.
If my son suffered from some devastating cancer (multiple myeloma?), and a parent whose child suffered from some relatively benign cancer (basil cell carcinoma?) told me it was just cancer… suck it up… I wouldn't take it well. That's how I equate parents of high-functioning autistic children schooling parents of severely autistic children (me). Doesn't equate. Please.. how do I help Nathan to be high-functioning? (how do I turn his bone-cancer into survivable skin-cancer?)
Perfect analogy!
Took the words right out of my mouth. I've been saying for a while that I believe people who say that are just plain liars. I've said it here before and I'll say it again. Liars. Full of sh*t.
couldn't agree more! i've actually done very similar posts in the past- love this! great blog!
I think what Laura is trying to say is that she would be happy to take on the roll of respite provider. Apparently she can handle scrubbing feces off walls, going 4 days on 3 hours sleep, making GF/CF food from scratch, patching holes in the walls, advocating in IEP meetings, reading up on all the latest behavioral techniques, and going to doctors appointments, getting beaten up on a regular basis, tracking behavior episodes, creating a home curriculum, trying day in & day out to teach this child life skills along with communication and socail reciprocity, all while raising other kids and trying to keep their lives as stable as possible by taking them to soccer practice, and ballet, and their doctor appointments and school plays, cooking, cleaning dusting, doing laundry, maintaining a relationship with a spouse, all while holding down a 40+ hour a week job. I have kids on both ends of the spectrum, and let me tell you- YOU have NO IDEA what autism REALLY is. High functioning autism certainly has its own set of challenges, but comparing the idea of your child not having a friend in high school versus your child being beaten up on a regular basis by his own teacher because he can't TELL you, or slamming her head through walls because she is in horrific pain and you can't figure out why is a little ridiculous, don't you think? So it comes down to this- for anyone who thinks that this guy is wrong: either put your money where your mouth is & offer to help, or shut the hell up.
If I had one criticism about you blog, it would be with how consistently negative you are. I totally understand the feelings of frustration and sometimes anger that your child does things you don't understand and isn't progressing normally. I get frustrated too. Do I want him to progress and sleep better and stop biting himself? Yes. But those things aren't HIM. So would I change him? No. I don't identify him as his autism. Autism is a part of him, but it is not who he is. And I've come to terms with the fact that he'll have autism and he'll struggle probably the rest of his life. All we can do is try to make things as good as possible for him. With love and compassion, we work to help him improve.
If I were negative on my blog all the time, I'd worry that one day he reads it. Imagine how your child would feel. Would he feel like you're angry and resentful toward him? Nonverbal doesn't mean lack of intelligence or ability to read. Just food for thought.
What I DO like about this blog are the things he's done to help his child. The active role he takes. I just could do without the negativity. I fight very hard to stay positive for my child. It's not easy for me, because I have issues of my own, but I do try because I feel that staying positive benefits him more than focusing on the negative.
With what I have read and seen here, if "Kyle" ever read or heard his dad's blog I honestly believe he would feel even more loved, accepted, treasured, and fought for than he already does.
And he would also get to see that his parents are human and they get stressed and overwhelmed but nothing that happens can or will ever change how much they love him and how much they are willing to fight for him and his future.
Laura… find another blog. I can't fashion a voodoo doll when I don't know what the person looks like. Self-righteous, inconsiderate postings don't really belong here (except this one). I often questioned the value of Facebook until my wife steered me to this man's page. Leave us to our own healing thank you.
Of course I would change my sons autism in a heartbeat and he is high functioning, smart as hell, witty…but…NO friends!! Yeah, Id want him to be like other kids his age and bug me to sleep over someones house or go to the mall or want money to eat at Applebees (again). I want him to NOT have any potty issues, or eating issues, or this weird fear of veins he has. I know we are lucky compared to some, but his issues are just as real and just as painful. You will never hear me utter the phrases above, but rather– I am pissed off that my son seems to be getting shortchanged in life and I dont care who knows it!!
I want a pony.
Amen! I would sacrifice ANYTHING if I could cure my son. No one (except you folks) can understand the depression I experienced upon his diagnosis. It has lessened with the years… but remains. Maybe their total acceptance simply helps them cope with this tragedy. Just have to keep reminding myself that I wasn't promised a perfect life… and it's not all about me. When I focus on myself, that's when the depression is unbearable. When I try to insulate my wife and daughters from some of the dysfunction I can almost breathe. Unfortunately, I don't catch my breath very often…
Amen, Steph, I keep reading these replies from Secret Sunshine and I think 2 things: 1) I'm so glad she wasn't my mom. and 2) how embarrassing for her kids, her out in public acting like a hateful adolescent attacking everyone, i hope they never see this stuff. Shew, it's gotta be exhausting to be so angry.
Wow, that Secret Sunshine character is kind of a bitch herself.
Oh if only we could all be so at ease and on the ball.
Steph
Yeah, honey. You WEREN'T promised a perfect life. And it's NOT all about you. So stop cryin about it. Jeez. A lot of us simply aren't "coping" with any "tragedy." We ALL hate watching our children suffer, but we got a Sob Fest going on here where people are talking about how much THEIR life sucks, not the suffering of their children. For example, here you are, talking about your depression, and how your wife and daughters have to deal with dysfunction… um. Were ya gonna mention how hard it must be to be your SON with autism?? To have a completely self absorbed parent who needs to remind himself that it isn't about him? Snap out of it, dude. Seek professional help. For you.
Yes, as an aunt of a child with severe cerebral palsey,(non verbal, can't walk, peg fed, dependent on his parents for everything) we would give our own lives, just to give my nephew 'a life'! He has been dealt with one life threatening illness after an other, spends a lot of time in the hospital and as a nine year old, he should be allowed to get some kind of break! What one of us wouldn't do for him to be 'normal'! Yes, we would sell our souls too. As for god? yes I am a catholic, but I often wonder, if he is 'up there', he has one sick sense of humour!!!! What my nephew goes through is cruel, we are lucky he is alive! But we love him to bits, his siblings love him to bits, and we do appreciate life more because we love him so much. But we would 'change him if we could', he doesn't derseve so much suffering. Autism Daddy, you rock, NEVER change for anyone, it never has been or never will be a question or issue for your real fans of how much you love you son.
Laura, he's not trying to speak for anyone. He gave some examples from what he's heard and been told not things he believes would be said or shared.
And as far as him wanting to change his kid into exactly what he wants him to be??? Seriously, he and his wife are very loving and good parents and they love Kyle exactly the way he is. What Autism Daddy hopes he can change for Kyle are the things that honestly are making life harder and/or more dangerous for him. Things ANY caring parent would want to do.
And as far as your accusation of him feeling sorry for himself and acting like the world owes him something?? Maybe if you read his blogs with an open mind and heart verses one set on judgement and attacks, you would see that comment couldn't be further from the truth.
We ALL love our kids very much and are doing the best we can to give them our best and help them reach their best.
Summary:
If you don't like his blogs, STOP READING THEM. You don't need to openly bash and attack another parent for ANY reason. Especially not just for a difference in opinion or personal bias against them and/or their personality.
"You don't need to openly bash and attack another parent for ANY reason"
Isn't that exactly what this blog post is doing?
ditto.
"What a bitch" says the bitch who thinks her child's sole purpose in life is to suck the life out of her. K.
Thank you for writing the response to that ridiculous post that I didn't want to waste energy responding to. What a Bitch…move on lady!
great points and as always I love your realness 🙂 thanks for sharing this 🙂
In my case, my favorite line was:
"Now admitting that you HATE your kid's autism doesn't mean you don't LOVE your kid. I LOVE my son. But I HATE the disorder that he's been stricken with that will make him dependent on mom & dad for the rest of our lives and beyond."
So with you on that one…
I am grateful and honestly feel blessed to have David and Joshua and for all that their happy, inquisitive, and caring personalities bring to my life. But at the same time nothing hurts worse than watching them struggle, get bullied, hurt themselves and not be able to stop on their own, etc. I would change that for them in heartbeat if I could.
How dare you profess to speak for me. Just because YOU would change your son, doesnt mean we all would. Yes, my son is higher functioning, so maybe that does have a bearing on it, but I wouldnt change him. What you mean is you would change him into exactly what you want him to be, well behaved, sleeping through the night etc. dont you think some parents of NT kids would like that too?? Seriously, I have been reading your blog for a few weeks now and really, it's about time you stopped feeling sorry fir yourself. Ok, so you have an autistic child. I know personally 2 sets of parents who lost their children to something much more serious than autism who would swap places with you in a heartbeat. Suck it up and stop acting like the world owes you
something, it doesn't. Life could be much worse for all of you. Get on with it and stop being so negative. It's boring.
Matto and Anonymous are right, I have an high functioning Autistic and this apply to all parents "if you met an autistic child you met one autistic child" and Yes! For me autism is a curse because stole everything from my son's future, potential and life that any NT child have! So if I could give my life for my son don't have autism I would do it with the blink of an eye!autism doesn't define or make my son it only limit him for what he want to be,and as others parents iam so worry of his future without us,as I said I love my son with my life and hurt to see how autism take his dreams away from him and how he can't survive without us been there to help him because he isnt neurotypical,and yes if he didn't have autism his life could be better and his dream could be close for him to grap, and his future as an independent adult,going to college, falling in love and been in sports that he loves, have the career of his dreams,have a ton of friends,all that NT people have it, my son's autism take them away from him!
BANG, There goes that phrase again.."Yes, my son is higher functioning, BUT"
Let me translate:
"I have no idea what your life is really like as mine is completely different, but I'll pass judgement on you anyway"
are you going to take care of our kids when we die? I don't think you would be bored anymore! No one is speaking for YOU..we speak for US. do you know what it is like for your mind to be tortured everyday knowing you are going to die and leave your helpless child alone? My son is blind and severely autistic..he can't even get himself a drink of water! I usually don't respond in such a negative way to people's comments, but your comment really hit a nerve. If you don't like this site maybe you shouldn't read the comments on here. Since your life is so perfect it really isn't appropriate for you anyway.
I am an autistic adult who has worked as a behavioral assistant with autistic people. I don’t believe that all autistic people should have a single destination. So I support scientific research on autism so that we understand it better and have more options. Personally I like being autistic even if I have a major price to do so, which I do. But I also fully understand parents of autistic children, who know their children far better than anyone and are their greatest allies, wanting their children cured of autism.
I wouldn't change my child for the world? Really? So, I assume you don't deal with seizures, epilepsy, or any of the other potentially life-shortening co-morbid conditions or perhaps self injury? Sometimes sounds just like an excuse for not wanting to make the effort/sacrificies it takes to improve a child's quality of life.
I think a better way of stating it is 'would I take away the struggle my ASD children face everyday?' and to that question I'd say, as well for my NT child. Pain and struggle exists for everyone and as a person on the spectrum I can tell you it's not the autism that has caused most of my pain and struggle, it's been by far the way society has treated me. I wish I could change the world of it's ignorance. Disabilities of any kind doesn't always mean less quality of life, or less happy. If there were proper understanding and supports in place life would not be such a hard thing to endure for parents of ASD kids.
Sorry, for the typo I left out a word. I meant 'and to that question I'd say, *yes.'
I love your posts and I agree for severely affected kids but my son is very high functioning and I really would not change him. He has a great life, friends at school, is gifted and quirky. He is happy and healthy and his aspergers is part of him. Unconditional love and I would not change him for the world.
The behaviors…the anxiety, the depression, the loneliness, the meltdowns, the Autism…SUCKS!
My daughter doesn't have autism, she has reactive attachment disorder (RAD) but this is a reoccurring theme with RAD parents too. And it DRIVES ME BLEEPING NUTS. Would I change the RAD? In a heartbeat. Does that make me a bad mom? Maybe but I still would. Absolutely. FYI RAD is an emotional disorder that keeps her from being able to bond with my husband and I. It causes out of control behavior and raging that gets violent. It is very very hard. I love my daughter but I hate RAD.
AMEN!!!
I don't even know what my kids personality IS without Autism! Yeah I'd give it up… lets see trade a fairly good puzzle putter together and lock picker for someone who can talk, do his school work, be left at home alone like a normal 13 year old, eat more than 4 foods, not destroy every f'ing thing in the house and have a wife and family one day instead of draining the life out of me and my husband till we die. Hell yeah sign me up. P.S. YES, I love my son EVEN though he has Autism.
Having a child with Aspergers is rough. I can't imagine what those of you with fully autistic children deal with. I feel so overwhelmed with the constant hitting,pinching, biting etc my daughter doles out. The meltdowns for no apparent reason. The anxiety, stress… Raising 3 kids with my middle one having these issues is highly stressful. I'd change her in minute. I'm not worried about who she would be. Likely she would be the same minus pulling her hair out, meltdowns, putting EVERYTHING in her mouth and constantly attacking her siblings. I love all my children more than my life but I wish my Aspergers child wouldn't have to live the way she does.
@Secret Sunshine. -Amy has probably had a rough few days or weeks, So she is drained, Have you really never felt that your asd child is taking a lot out of you, even people with nt children feel that way!
@Amy, I wish I could have things not destroyed too..
That's a big negative, honey. Loving your son really really does mean not deciding at 13 your kid is gonna drain the life out of you and your husband until you die.
There's a great FB group called "Praying Against Autism" It was started by a mom whose 15 year old son was healed of severe autism. This is true. I know him and he is now a fun loving teenager who drives a car and has tons of friends. The members of this group are real people who will not accept anything but total completeness for their children. There is hope and it's in the name of Jesus.
I agree! Fully and completely.
The "I wouldn't change him" people are too afraid of any change being negative to even consider that a change could be positive.
To the person above "for example if your autistic child is a self taught mozart but he sleeps like crap and smears his poo if you try and remove those behaviors via anything that would damage or "repair" the brain (not really talking about therapys)then you stand the same chance as getting rid of those two bad behaviors as you do of getting rid of that excellent gift they have. "
BULLSHIT. Oh my god. You're so hung up on not losing the "gift" that you're willing to let him be unable to function in society? That's some seriously selfish bullshit.
we all have behaviours that we or someone else would like to change about us. sometimes they are even behaviours that we like and enjoy. i don`t think anyone has the right to tell anyone else what they have to change about themselves. every individual should have the right to decide for themselves.
of course there are things i`d like to change about my kids. there are also cool things about them that i`d like to keep. both the good and bad things seem to be connected to his and her own unique brain structures. i don`t believe that fixing a person doesn`t somehow damage a person more by changing the parts that make them who they are.
while we`re on the subject, there are things about "normal" kids that need to be fixed too. like their ability to be incredibly cruel to anyone who is the slightest bit different. another behaviour that needs to be fixed, is the ability and desire to lie, cheat and trick people (even adults) in incredibly complex and subtle ways.
most kids are far too insensitive. their senses are dull. they cant, hear, see, smell, taste or hear half as well as they should be able to. it`s a pity because they miss out on so much. i`d like to fix that .
most children are also extremely irrational. they waste too much time on inconsequential and unimportant things. can we fix that too, please ?
all his reminds me of what the quaker said to his wife: everyone`s crazy but me and thee, and i`m not so sure about thee.
I think, for me, that I while I would change her, for her, I would be scared of losing her personality – a lot of which is made up of Autistic traits.
For her, I would wave a magic wand and wish away the Autism in a heartbeat.
For me, I would be hesitant to change the daughter I have and love.. headbanging and all. Even Neuro-typical kids can annoy the sh*t out of ya on off days. I know, I have one. Sometimes the Autism seems a small price to pay for the enigmatic girl I have and love to love.
You would be hesitant to change your daughter's headbanging? Is that really what you just said?
I agree <3<3<3
Another comment often made "I am/feel blessed to have been given this child" Hell no! Alot of the time I feel overwhelmed, under enormous pressure, frustrated and short changed because of being given this child afflicted with this restrictive disorder. I love and appreciate when she interacts and the odd word or two that cones a little easier once in a blue moon or I see her quirky, cheeky personality shine through and wanting attention. I agree with you Autism Dad.
And I'm sick to death of the restrictions of people and places to go, what we both miss out on and the heartaches of broken down relationships Autism has caused for my beautiful girl and our family. Arrrrggggghhhh!!!!!
I agree with you.
Changing your child with Autism could be a double edged sword. My 8 year old boy (granted, he is higher functioning, but has a lot of the typical Autism mannerisms) is very happy, has a great personality- everyone loves him- teachers, other students, bus drivers, therapists, etc. If we "cured" him, it's very possible he could turn into an angry, disillusioned jerk. Do I want that? HELL NO. I don't want to change him. If anything, I'm ENVIOUS. No responsibilities, no life pressures, no living up to anyone's expectations. A life free of worry. Don't we all dream of that? I do. My son is lucky to not have to be subjected to the bullshit rigors of life. I WOULDN'T CHANGE MY SON FOR THE WORLD. Stick that in yer pipe and smoke it.
People living in denial…that's not new. Parents of ASD kids living in denial…even more true. I have a brilliant-in-several-aspects asperger's son, and would give anything to make him non-autistic! he will probably be very famous one day, yet I wouldnt wish for my worst enemy to have a genius born to them if the price tag was AUTISM!
I, too have a higher functioning child. However, if I could take away the Autism I would. I love him more than life itself and wouldn't change who HE is but I don't believe the autism is who he is. Although, my son is higher functioning and will probably have a typical life I.E. college, family, etc. he will always struggle with it. My son is a VERY intelligent child but sometimes his autism creates very difficult obstacles. If I could remove those obstacles by taking away his autism you can bet your behind I would
Jenn
Maybe you are an angry, disillusioned jerk and that is why you think your child would be one too. I have a severe case of autism, and yes I would literally give my life if my childs autism would go away. I am so depressed and stressed over his behaviors and outbursts, sometimes i actually pray that he and i could just die and go to heaven already. I love my child, but his life is so difficult that i have a hard time understanding what his purpose is. I would do anything for him to be cured of this hellish nightmare.
Like you said, you have a higher-functioning child. I do as well. I would NEVER judge another parent and their feelings about their child, whether they have a high-functioning or more severe child. I know how lucky I am that my daughter is mild. I know what a daily struggle I have with her. I can only try to imagine what parents with severe children have to deal with. I wouldn't wish it on anyone. To say "Stick that in yer pipe and smoke it" is beyond ignorant. You have a mild child. This man does not. Do not judge him or tell him how he should feel. He has every right to feel the way he does about his child's Autism, the same as you do. I have no idea why you think your child would become an angry, disillusioned jerk. That is just nonsense.
You can't possibly be so foolish as to believe your child with autism has no pressures and a life free of worries.
youre awesome! 🙂
With all due respect, I'm shocked that you assume that if your child didn't autism that he would become an angry disillusioned jerk.
My son is PDD, and may lose the label with DSM5. I worked for 7 months at an ABA residential school for kids with MD and autism.
Night and day…
As you say here, your son is higher functioning. Completely different situation from parents who deal with severe autism so yes, most WOULD want their children to be normal functioning. Put that in your own pipe and smoke it asshole.
I am SOO sick of you parents of Asperger kids thinking you have ANY clue what severe autism is like to deal with.
Well said xx
I LOVE you man. I just had this argument with a bunch of parents with kids with autism, i got called everything from stupid to a bad parent for saying it! Thank You, thank you, thank you. im glad im NOT the only one!
Lol, your not the bad parent, the bad parents are the ones who allow their kids to rip open cereal boxes in the supermarket and throw tantrums all day, all while holding a smile on their face and then writing hateful blogs about how ignorant people were staring at them. Apparently loner teenagers are now self diagnosing themselves with assburger
My toddler has been diagnosed with PDD NOS and I am scared as hell, worried as heck and yes I hate it I hate when our service coordinator, special instructors and speech therapist refer to it as Autisim I want to choke the PDD NOS slap it against the wall and crush it beneath my feet I want my son to talk with his peers, make friends, go to regular school, get sent to the principals office for misbegaving, play sports,chase girls as a teen until he's tired, go to that kick ass after party at prom and be a sex crazed academically charmed college freshman! Yes I would change his diagnosis and all
the labeling that is welded to its horriblness. I want
to have the courage to tell my ex the truth about his son not being comfortable in the lie "he's a late bloomer" and digesting his comfort in believing it…I hate ABA! I want to stop feeling misplaced guilt for what I know cognitively it is not the fault of me or my ex husband but God tell my heart this so my head will follow suite…I love my baby Aamir Elijah Biggs and if I could I would give the rest of my life at this very moment if he could be free of his PDD.
So…. you want to take away his mental disability in order for him to become an asshole?
Chase girls as a teen?
I want my son to have respect for himself and others. Trading bad behaviors caused by a medical condition for bad behaviors (chasing girls, promiscuity) caused by low expectations for "normal" boys seems a bit strange to me.
completely & totally agree <3
This very subject came up on an fb support page but instead the phrase was…"I feel very blessed". I called bullshit then. I think you're right on!
I wrote a very similar blog yesterday and completely agree with you. I am very religious and I agree with you about the religious points too.
well heres my comment….sure id love to change behaviors in my autistic children but i wouldnt take the autism away not for all the money in the world.
yep im a weirdo…first im aspie so is my husband and my 17 year old and most likely my 2 , 3 and 4 year olds.
im of the logic that if you do something to the brain that takes away an undesirable behavior you have just as good of a chance to take away something that makes them unique and special better at something then someone else is.
for example if your autistic child is a self taught mozart but he sleeps like crap and smears his poo if you try and remove those behaviors via anything that would damage or "repair" the brain (not really talking about therapys)then you stand the same chance as getting rid of those two bad behaviors as you do of getting rid of that excellent gift they have.
So no way would i change my kid work on his behaviors and try to replace them with more desirable ones but in my opinion damage his god given brain to make him normal no way!!
Yes I needed to know I am not alone and though I feel for my son he is physically and mentally abusive and has no empathy. My whole family suffers. It would be a total lie if I said I love the fact that at any moment my son could suddenly start choking his baby brother, or hurting himself. I hate it!!!!!! He has almost killed his siblings several times and has to be watched 24 /7 so those not so annoying little corks are annoying as I'll get out cause you can never ignore him. I will not stop caring for him, but I hate the things he does
Have you never heard of venting? We all have moments with our Autistic kids that break us. Make us feel defeated, cry our eyes out etc.. Autism is hard, it is, and it is ok to admit that and to wish for those defeating moments to be different. I am NOT afraid to say I most definitely wish my Autistic 6 year old wouldn't scream at the top of his lungs any time he had to do something he didn't want to do along with hitting himself and kicking. I wish I could talk to him but there is a barrier that keeps me from being able to do that with my precious baby boy and that is Autism. Those are a couple of the things that I would do anything to change. I feel that the point of this blog isn't to state facts or conceal anything it's just good old fashioned venting about Autism and how it can completely bring you to your knees at times. If you can honestly say you never feel the way he described then you are either not being honest with yourself or are just VERY lucky with what you go through with your child with Autism and their functioning level.
Honestly, I dont believe you!!
Well done! i hate my son's autism, i love him dearly and beyond words but the autism is tough on him, on me, on my husband, on our "normal" daughter and on our family dynamic!! We relish in some of the "cuteness" that autism brings, but we acknowledge its just cute bc it is behaviour that is more appropriate for a younger child. i would take away my son's autism in a second if i could!! Thank you.
I couldn't agree with you more.
I one wrote something about one of my kid's ADD way back in September of 2008. It's relevant. Here it is:
I think about things like if I could have my oldest child cured. The nature of his condition is in the function of his brain and the reality is that his brain shapes his mind: it shapes his soul. To cure his brain is to change him. Do I have that right? I know it's my responsibility. His meds have several non-trivial side effects that could change his life for the worse. Whenever it becomes possible to take him off those meds, without having a negative impact on his quality of life, it must be done. I think that to make the life of my oldest boy as good as it can possibly be I may one day have to make the decision that makes him a different person that he is now.
I wouldn't change your kids for the world, I'd change the world for your kids.
Part of it anyway – http://www.cannabisforautism.wordpress.com
Safe legal access to the gentle medicine.
I am an adult and the person who gave me my yoga teacher training certificate was also an adult and a perceptive one. That certificate was handed to me on condition that I used cannabis i.e. on condition that I change myself to be right for the job of teaching yoga.
Autism is a clinical term. 'Clinical' means 'problem that makes life worse'. If it doesn't make life worse, it's not clinical, it's individual.
We all want to reduce the clinically significant symptoms, keep our individuality, and have the choice.
Finally!!! You are saying what we are all thinking!!!! Autism sucks!! And I would change it if I could!! Keep the blogs coming!!!
Cheers Alana
I agree with AD as well. Autism is not my daughter… yes she is a wonderful person and without the autism holding her back I can only imagine how great she would be. I look into her eyes all the time and I know there is a person locked in there and would love to be free. The symptoms of autism are awful to say the least and the impact on the family is equally as bad. So to all those parents that thinks autism is a gift…it's not. It is a curse and a hindrance on the ones we would give our lives to protect. I would give anything to take that gift and return it!
I'm with A.D on this one, I would sell my soul, my granny, the dog and the choc chips to the devil if it meant my son and my family were free from Autism.
To say that Autism somewhat defines a child and their 'self' is wrong and ill judged, I know 100% beyond a doubt that my son without Autism would still be the wonderfully, gorgeous, strong and cheeky person but he would be even more so as 'neurotypical'….the Autism is inhibiting him from reaching his full potential and I'd do ANYTHING for that to stop.
surely the 'kyle' you no and indeed love is that 'kyle' because he has autism… if there was a magic pill to cure autism in your heart of hearts would you really give it to him…'kyle' 'the king' is just that because he has autism.. its who he is.. there might be parts of it you dont like and parts of it you find tiresome and aggrevating and wish he was just a normal child.. but he isnt… he is more unique, strong, amazing and wonderful than most a typical people will reach in life time… and how wonderful is that.. to be in built with such amazing qualities.. my son has autism… and would i change that… no… because to have such a strong.. amazing unique person in my life is the most wonderful gift…
YES!!!! What Anon said above!! ^^
~KR
i have a autistic daughter who is 9 and although i love her she is one of the most annoying people i have ever met..ive heard people say that they wouldnt change them for the world and it makes me feel like slapping them!i find dealing with autistic people very hard as i am generally not a patient person and find there ways very irritating, it is like they go out of their way to be annoying and going on and on about the same annoying things !i know this might seem like a rant but sometimes i just need to get things off my chest and at least im being honest unlike a lot of people who have kids with autism.would i change it if i could 100% for them and the people who have to deal with them .
In response to your questioning if parents of kids with Down syndrome say it, it would be – oh, yes – all the time. But, lots of us do the same things – try the latest drug or therapy …
yese autism is hard yese bt its par t ov who im an what im -aceptence needed an inklusion fr us that hav tu live wth autism