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Now Reading: A Followup To My Controversial Post About “Changing” Our Kids w/ Autism

A Followup To My Controversial Post About “Changing” Our Kids w/ Autism

A Followup To My Controversial Post About

(originally written & published on January 21, 2012)

I just had to write a followup to my CONTROVERSIAL post about how I would want to “change” my son and get rid of his autism if I could.

This brought up alot of debate about why I would want to change the way his brain works. That this would be selfish of me.  And why my writing is always so negative and when am I just going to accept my sons diagnosis and move forward.

First off let me remind you that Kyle has severe non-verbal autism. He’s 8 yet his receptive and expressive language test at around 18 months and they have for years!  So that’s the autism I’m dealing with.

And while we are going thru a really good stretch right now behaviorally we’ve been thru the ringer in the 6 years since the diagnosis which I detailed in this blog post.   So this is where I’m coming from.

Ok, so for those who’ve said getting rid of his autism is changing his personality and the way his brain works. To those folks I say, “I honestly don’t know how his brain works. There are so many debilitating stims and habits that get in the way. So maybe you’re right, maybe behind all the stims and add/ ADHD behaviors theres a beautiful unique autistic mind. So if you want to talk semantics maybe i don’t want to get rid of / cure / change my sons autism, maybe I want to get rid of the tons of things that get in the way of him making any significant progress. But in my sons situation that’s everything, the stims and behaviors and autism are all intertwined.

And for those who thing my writing is always negative and that I should just accept his diagnosis and move on…  Maybe you haven’t been reading this page or my FB page too much.

This whole page was built on the idea that it’s ok to complain about the crappy hand we’ve been dealt.  I could never find a place where people admit that it sucks and that it’s hard and that it’s ok to admit that you need help.  So i created the Autism Daddy FB page and blog.

Nothing bad happened in my sons life this week that made me right that blog post. Our lives have been like the movie “Groundhog Day” where we’ve been kinda living the same day over and over for about 3 years now.

I wrote yesterday’s post during my lunch break at work when I read another comment on my FB wall saying “I wouldn’t change my kid for the world.”. That phrase always irked me and I quickly wrote a blog post about it.

And of course I accept my son’s diagnosis. I’ve accepted it from the beginning.  And I love him with every fiber of my being. But I am so scared of his future.  So forgive me if I want to change his autism to make him at least self sufficient enough to care for himself when we are gone. Forgive me if that is selfish of me.

Also you should know that alot of the things I’m writing about lately are not necessarily things that are on my mind now, but maybe things I’ve dealt with years ago, but now that I have this platform with 3000+ readers if I can help someone with something I’m going to do it… from something as simple as getting a handicap placard for their ASD kid, to not feeling guilty about needing antidepressants, to yesterday’s post that it’s ok to admit that you’re mad as hell at the Big A.

I feel like nobody else is talking about this so I will. So that’s why my blog might sound more negative than others. But negativity is not my life and if you follow my FB page and my blog you’ll get the balance you are looking for. We are a happy family of 3 whose lives revolve around our son and his happiness.

But one thing I have to say is that while I think it’s ok for us ASD parents to INTERNALLY debate whether we would want to rid our kids of their autism we shouldn’t so easily say that to the outside world.

I say this for 2 reasons…

1) I think us ASD parents should stop acting so damn strong. I don’t want pity as much as the next guy, but there’s no shame in saying you are overwhelmed and need help.

2)  if you want to fight the insurance companies and the government for more autism coverage and better diagnosis than you can’t be telling the world how great things are.  We need to be a unified front both LF & HF telling our horror stories to the world so they ll get it.

I’ll leave you with something I wrote in a previous blog post that kinda fits into this line of thinking…

 

“…lately when autism is on the news it’s a feel good story about a high functioning kid doing something great and profound. And I think that spins autism in too positive a light. It makes people think that autism is not that bad. They’re just a little quirky like the Asperger’s rocker on American idol. I think America needs to see the dark side of autism more often, like my son, the nonverbal, non-potty-trained 8 year old who bangs his head, won’t eat, has crazy stomach/ bowel movements and severe ADD & ADHD on top of his severe autism.

I like to read the feel good stories too…but the feel good stories are all you hear/ read/ see about autism in the mainstream media. And I honestly think when we are fundraising or trying to get more government $$ for autism if all people know are the feel good stories, “why give them research $$, they’re just quirky kids….” the kid that scored 15 points in the basketball game, the aspergers guy on amazing race, etc…”

That’s all I got for today.  The end.  Controversy over…

🙂


Written by

Frank Campagna

I’m a 48 year old neurotypical dad with a 14 year old son with severe, non-verbal autism & epilepsy. I created this blog to rant about autism & epilepsy while celebrating my son who I affectionately call “the king” :-).


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136 People Replies to “A Followup To My Controversial Post About “Changing” Our Kids w/ Autism”

  1. Anonymous

    Living on the high functioning end is no picnic either. My son hates having autism so much that he would rather commit suicide than live with it. So yes, if I could get rid of the autism and keep my kid, whether with a whole different personality or not, I would do it in a heartbeat.

  2. Anonymous

    I won't say a lot in this comment – just that I agree totally. If I could change my sons' (yes two of them) Autism, I wouldn't hesitate.

  3. Anonymous

    Thank you autism daddy for helping all parents of autistic children voice their inner frustrations. It's a shame some people lack basic understanding or are still in denial hence the total crap about not wanting to change their kids. WTF!

  4. you said:
    " if you want to fight the insurance companies and the government for more autism coverage and better diagnosis than you can't be telling the world how great things are. We need to be a unified front both LF & HF telling our horror stories to the world so they ll get it "

    WOW, I couldn't agree MORE, I'm a HF autistic, and ACC, and the truth is if I COULD change it, I would in a heartbeat. I could write an unending list of how this condition negatively affects my life, with only a scant few positives thrown in there.

    Thank you for being the voice that you are, I appreciate your blog!

    1. did you grow up in a home that never taught you that autism helps make part of who you are and that you'd be too different without it?

  5. Anonymous

    If we accepted our children's diagnosis 100%, then we wouldn't be trying every therapy, diet, or supplement on the planet. Our society dictates to us what is appropriate and we spend our lifetime trying to teach our children to fit in a world not made for them. It's loud, chaotic, socially awkward, and just damn unfair on so many levels. We all grieve each day for the hopes and dreams we had for our children. But I feel my job as an autism parent is to help teach him to have his own personality in a world with that doesn't understand him. It is very difficult to embrace autism while society tells us that we have to change them to fit in. So, if your son is happy…. then let him be happy!!

  6. Tim

    We have a nine year old son with severe Autism. My wife used to write a blog similar to yours, using humor to vent our frustrations about our son, his behaviors and his difficulties. We love our son more than anything. He is a very gentle and loving little boy, and I would like to think he would have those attributes if he didn't have Autism. I wish we could find out. We love our little boy, we do not love Autism. Keep writing and those that truly understand will keep reading.

  7. Jamie

    I must say I have read more of your posts about autism than anyone else's. We also have a non-verbal (sort of, he can ask for some things and sometimes repeats) 9 year old with severe autism. He has only been potty trained since new years of this year. I try to tell myself that I want him to be just the way he is but when he screams for 45 minutes in the car because we turned the wrong way its a lot harder to swallow. Had a friend once tell me that it was great that we could keep a sense of humor when talking about his disorder. When we do try to complain most people think we are being dramatic or exaggerating. Just keep telling it like it is because we are out there and we are listening.

  8. Anonymous

    All of you ought to hang your heads in shame for your bile filled spiteful hatred. None of you should be parents. Bunch of whinging know nothings. If you actually took the time to understand autism you wouldn't hate your child, but you're just too damn lazy. Hitler would be proud of you.

    1. Hey troll, go back from where you crawled out of.

      Or don't be a wuss and post anonymously

  9. Anonymous

    Ok here it is! Autism Daddy is completely right! Stop all the "this is a blessing" crap. I'm on the hf end of things. However, of the two on the autism spectrum of my three kids, my youngest is my doom. He drives me absolutely crazy. I'm tired all the time! He is adhd and autism. He is four. I often feel I'm not going to make it! He wakes during the night for at least a couple hours. If I don't happen to hear him right away my kitchen and living room are torn all to hell. So I am cleaning and meeting his needs immediately. I never get a break except his dad's visitation and the sperm donor always finds a way to bring the kids back early. I was going through one of the darkest times of my life three years ago and sperm donor (now ex husband) decided it was a great time to bail out of the marriage. Instead of "manning up" and actually honoring his word. That is why I respect Autism Daddy so much. A lesser man would have abandoned the situation and never looked back. I really don't care if you don't think we need a place to vent about being stuck with a crappy hand, but I damn sure do! Thank you Autism Daddy, stay you!

  10. Anonymous

    My Phrase that I hate is, "He is SO LUCKY to have you!!!" No, not really. We had this issue in our family with a child who wasn't getting what he needed. We just stepped up and handled it. His mother is autistic herself, undiagnosed, but still. She just couldn't handle him. Would I change them? HELL YES!!!!!! I would change everyone in this situation that Autism touched. A mother..who can't mother effectively. A child who is 5 years old and functions on a 3 year old level. Does it please me? NO. But this child needed someone to help him, care for him, get him to the therapies he needed, work with him.. and allow him to be as normal as possible. If I could do ANYTHING that would take autism away from him I would do it. See that straight, tall, funny little boy and free his intelligence and personality from stems and speech delay? Oh yes. If there was anything I could do, I would do it. He is a beautiful child, but a child with so many problems that all we seem to do is deal with the problems. I can't hardly deal with the thought of him being a bag boy at the local grocery store. Being That Kid, you know the one that walks around town aimlessly because he don't have anything better to do? I am afraid. Afraid he will never live on his own. Afraid he won't have a CAREER.. not just a job at the Goodwill or some program. He is so smart and funny, such a good kid. I would give anything to take Autism away from him.

  11. There is no doubt that raising a nonverbal autistic child that hasn't learned how to control their behaviours must be an exhausting trial.
    And, if you read the stories of those whos have broken through the non-verbal barriers, you will realize that, despite their 'wonderful, amazing, beautiful, autistic brains', they are suffering immense frustration at their inability to communicate too.
    So yes parents will say that there are behaviours and difficulties that they wish they could change – not to change their brains or minds but to alleviate those symptoms and have their loved child be able to communicate with those they love.

    At the same time what those children need is help in learning how to communicate, that generally seems to come from someone willing to spend endless hours, not trying to bring the child into our world but in trying to enter the child's world, to think with their mind as a way to build the bridge they need to cross.

    Such a bridge cannot be built from our world to theirs unless you can find and learn to understand their world, you have to get into their world and build the bridge from there.

    Try these:
     The Spark. A Mother's Story of Nurturing Genius – Kristine Barnett
    Carly's Voice – Arthur Fleischmann
    I might be you: An Exploration of Autism and connection – Barb Rentenbach and Lois Prislovsky
    Ido in Autismland: Climbing Out of Autism's Silent Prison – Ido Kedar
    The Reason I jump: one boy's voice from the silence of Autism – Naoki Higashida
    Thinking in Pictures – Temple Grandin

    And Ethan Shkedy's youtube video: Ethan's Story – Breaking the autism glass ceiling: http://www.youtube.com/watch?v=evjbx9_RiMY

    A great description of what it is like by a young lady who had speech delays.
    https://www.youtube.com/watch?v=qIAILIg1-rM&feature=youtu.be
    Taylor Morris: Hope for Autism and Asperger's Syndrome: My story – understanding Asbergers in Adults

  12. to accept autism as part of a person does NOT mean giving up. i believe in treatments too. that doesn't mean i would ever take a way my autism at all. most of the other people saying they'd wanna get rid of it are probably non-autistics who don't know exactly what autism is like.

  13. i'm the only other person on this post that has to disagree with this. He is bitter and feels he has been dealt a hard blow. He is probably correct. Too bad he cannot see beyond himself and realize it is not all about him. His son is a person not a thing. Too bad we can't ask the son what he'd change about "dear" old dad.

  14. Anonymous

    My daughter is high functioning, but I would "Change" her in a hot minute. She would take a pill if it would change her, She just wants to fit in, and be like everybody else. So, its not always better, to know that you are different.

  15. I too are in the same situation as you and my son is now 18 and I love him with all my heart but with all the things he has had to go through I would in a heart beat change it if I could if there was a cure I would be fist in line is it selfish of me, NO until you have walked in his or my shoes you have no idea.

  16. I'm a recent reader of your blog and recent "liker" of your FB page. All I can say is I am so happy I found your blog and FB page! Your blogs make me feel like I'm not alone and many of your stories actually make me SMILE because they are so relatable. Rest assured, I would bet there are triple the amount of people out in cyberspace that LOVE your blogs compared to the handful of people who feel less than love for it. Keep writing for the thousands of us that love it – we definitely need you 🙂

  17. Anonymous

    Autism Daddy!! Yay for you!!! If someone somewhere made a pill to take away Autism and all the issues my HF kids had I would do it in a split second!!!!! Why because, I don't like my kids having to fricken struggle to do things. Granted I'm not in your boat on the LF end. However, to know my daughter (selective mute/ASD/psychosis) hasn't spoken to me in two years. Then HELL YEAH!! I want a pill to fix that!!! I'm not sure if it's crappier that I have heard her precious voice and had it taken away or if I had never heard it at all. This whole Autism thing sucks butt!!! I didn't ask for this neither did my kiddos. It did make me a better parent in some ways. But for the most part it sucks. I'm a realist. If there was a pill to make me a healthy weight hell yeah I'm taking that, so why not "cure" the Autism if you could. You are AWESOMESAUCE!!!! Don't let anyone tell you different. I love that you are showing what it's really all about!!!

  18. Jake's Mom

    I love your blog and if their was a cure for Autism you bet I'd be there. My son regressed as he got older. At 10 years he has no memory of his early childhood. It's heartbreaking to loose a child within themselves. We have had to mourn our child. Physically he is here mentally he is not. I love my son with all my heart, I hate Autism. Yes I know hate is a strong word but I'm just being honest.

  19. Harry

    My read of what Temple Grandin has written about her childhood experience was: Her autism INTERFERED with what she wanted. She did not fully realize that when she was a child- she loved to stim as a child. It was relaxing, in her sensory-overloaded world. She only realized (to the full extent) that stimming had been interfering after she became an adult. She realized she should stop stimming, because it often interfered with learning the things she wanted to know. Yet only when she overcame some of the ASD effects (with the help of her mother) was she able to do the things she loved. Yes, it is easier to accept a child with ASD as the child is, and not try to make their future better by increasing their cognitive function. However, I believe that this philosophy is mostly harmful to the child in the long run. There must be balance- always love your child, but the balance should be continually leaning towards helping the child progress into a functional adult. Some may never achieve this independence, but we should always try to help them do so.

  20. Anonymous

    It was a complete sudden stop in my life when my relationship with my lover came to a verge of breakup point without any reason and she said that she has fallen for someone else, it was Dr. Eziza who helped me get back my lover with a love spell and now we are happily married, thanks a lot Dr. Eziza. If you need his help to restore your relationship back, you can contact him viaezizaoguntemple@gmail.com And +2348058176289

  21. I love reading your blogs. I feel you are one of the more honest ones out there. Before I found you I felt like a giant jerk for thinking and feeling certain ways (on certain days).

  22. I really enjoy reading your blog. You say the things I am thinking. I just started my own blog about our journey with Autism and I did it because I feel like people expect us to just be happy all the time and not feel the things we need to feel. My son is high functioning and we still have massive challenges with him. I wanted other parents out there to know that they were not alone. Thanks for writing…my blog is The Porter Puzzle http://www.theporterpuzzle.blogspot.com

  23. Anonymous

    I love your posts! The parents that love autism so much are the ones with high functional kids that never had any regression like you and your family have… I give them 1 day in your shoes and they would feel the same way! To see such progress in your son and then to havethat all stolen away from him does suck and to say otherwise would be a lie! I know from your posts you love your son and you just want him back! I hope I didn't step over a line with saying any of this but this is just what I get out of your posts…

  24. slovak matka

    Dear Austism Daddy,

    Thank you for your blog. Thank you for being honest with your feelings, and for having the strength to put them online for others to read. Thank you for being a loving, caring father and husband to the two people who need you the most. Your life is not an easy one, and more than likely it will not change much as your child ages. You learn to adapt to changes in each day as you have to, but those changes are never easy, and they always come at a price. Perhaps it's lack of sleep, the need for another aspirin, or the desire to step outside and scream at the sky so you don't scream at your family.

    I have a beautiful son who has the Big A, and it is completely overwhelming at times. While I do love my child more than life itself, and would do whatever I need to do to make things better for him, there is not a day that goes by that I don't feel like he has been cheated out of what his life could have been. Don't get me wrong, he is a good man, a good artist and has achieved far more than any of his doctors could have ever imagined he would. But with all that being said, I sometimes get glimpses of my son inside his Big A bubble, and it's heartbreaking. Sometimes I see the 25 year old man that he is when those moments happen, and then I lose him again right in front of my eyes. Those moments become farther and farther apart – and that scares the hell out of me. And the pain that comes from those moments of joy, and then inevitable heartbreak, never fail to bring me to my knees.

    As his mother, I make sure he get what he needs and wants. I make sure he goes places, sees people and stays engaged. But I am aging. And while my son is high functioning, he still has limits that most people do not recognize and/or tolerate. What happens when I die? Who will take care of my adult child and the needs he will continue to have when I am gone? These are the things that scare me the most and keep me awake at night. How will my beautiful son stay safe in this world that has gone mad when I am no longer around to fight for him, protect him, reason with him and keep him moving forward?

    Regardless of whether a parent of a child with Autism will say they would/would not take away the autism from their child, we have cold hard facts that we must face. Our children will age. Our children will continue to need help and guidance long after we are gone. Our children will need to have someone fill our shoes when we are no longer there to fill them – and whomever fills those shoes will need to be part of our child's circle. This is not an easy thing to address, by any means. But it must be addressed by each of us in this position. And when I think of this, it confirms for me that I would most definitely get rid of the Big A the first opportunity I had if it meant he could take care of himself.

    Thank you again for your blog and for allowing this dedicated mother a chance to openly express some of her fears.

  25. I also did not read all the comments. I just wanted to say thank you Autism Daddy. You are a breath of fresh air where I can read your posts and relate!!! I have two boys, both with autism. My 9 year old is high functioning and quirky and can mostly function in life and will go on to college and get a job and I guess for him Autism probably isn't something I would change. He is quirky and unique but he will live a productive life. I don't feel I need a blog or a place to vent so much about our life with him. BUT…..our 12 year old is by all accounts non verbal, almost impossible to take anywhere without a meltdown, he can hurt me and others, he seems frustrated and his life will never be independent and you know what?? If I could change him and take away the autism….YEP I SURE WOULD!! Without a second of hesitation. I agree we need to hear about the lives of these children as well in the media. About never being able to turn your back, being up all night if they are up, changing them, dealing with poop on the walls, and your own child hurting you sometimes. Feeling exhausted because the days never change and somedays are really bad. I just think sometimes when people make those comments about changing my son's personality if Autism was cured….well…..they haven't lived in my shoes or met my 12 year old. But I bet they have met by 9 year old or lots of kids like him.

  26. Anonymous

    I confess I haven't read all these comments, so this might be a repeat…

    When noises, smells, textures, or other daily stimuli cause my daughter physical pain because of her autism – hell, yes I want to change that part of her! When peers shun her because she is "different," please, dear God, change something!!

    I like to believe that everything our children have experienced because of their autism has helped shape them in a positive way, but if the autism keeps them from demonstrating that growth, and is causing them pain or fear, then YOU BET I would change them.

  27. Anonymous

    My heart goes out to you, I have a 7 yr old son who has apraxia of speech. I recently had to remind my sitter that my son is not autistic and do not appreciate her calling him that. I am glad that you write these blogs because it lets all the so called know it alls that they have no clue what they are talking about. I keep on being told by people not to worry that he is becoming more verbal. I am happy about that, it has been very hard work. What they don't realize that with a child with a communication disorder you don't always know what is wrong with them when they are upset. Where or not they really are having problems grasping concepts you are trying to teach or they are being a typical kid. How do you explain to them that they are not like the other kids that they desperately want to be like. That they have to use their communication device because other people can not understand them when they do talk. That Mommy sometimes doesn't understand either which is heart breaking when they realize that you don't understand and they get frustrated because they feel that you should know what they are saying. He tries so hard, I would not wish this on anyone.

  28. Anonymous

    I think you are a breath of fresh air. I would climb to the top of the highest mountain on earth if I could find even a treatment that could really help my severe son, let alone a cure. I would give my life for a cure.

  29. When I hear these idiots tell me to accept my son the way he is and not try and make an honest effort to find my child lost in the wilderness called Autism.I stop them in mid sentience & say shut your mouth before I shut it for you.Then they say they have Autism and they don't wanna change.I say well you seem like just a dumb ass to me and you for sure don't have the mind altering devastating systems my Sean has.He cries sometimes for hours some times days ,I take him to doctors & more doctors and nobody can help.I am a single father with two Autistic boys one is severe but High functioning & then my youngest Sean who is Severe X 1000 ,He cant speak , he hurts himself and me and everybody in his life because of the war that is going on in his head.So keep hijacking this brain disorder to get a check or sympathy what ever you are looking for ,but all you are doing is taking off the focus of children like my son.Because the people that could possible help me & my boy will see you and think Autism is just a scam because of your attention seeking ass!So I just say keep your silly little comments about my son not wanting to change to yourself ,because you are a damn fool and if you screw with me about it you will be a fool with your teeth knocked out you Jack asses.

  30. Anonymous

    People can suck it, Autism Daddy. My son doesn't have autism, but he does have ADHD, and I would give anything for him not to have it. Perhaps some people can't function without excessive cheeriness. I am not one of them, haha maybe you aren't either, and that kind of perspective is no more or less valid than any other. I appreciate your blog (which I stumbled on through a friend with a child with autism). Reading about autism has helped me think through and accept my son's ADHD, which involves the rage and temper often associated with autism. Anyway, I don't see you as complaining, just being honest that it's a hard road for you and your son. And, that stands to reason.

  31. Anonymous

    I appreciate your bluntness! My 2 year od son was just recently diagnosed with moderate autism so im still very new with all this. But i read your posts everyday and i think its a awesome that i have found ppl that i can relate too!!

  32. Amy F.

    Quite frankly if I could take my son's autism away, I'd do it. I see how hard he works and how he struggles. I also had my heart break when he said to me a few years back, "I wish the doctors could open my head and fix what's wrong in my brain." I of course assured him nothing is wrong with his brain. But it really showed that he KNOWS he is different, he sees himself struggle and others not have those struggle. And it sucks. We can't take his autism, all we can do is work as hard as we can and keep navigating through life, making it the best it can be.

  33. Anonymous

    very well said!

  34. Anonymous

    I hope and pray you keep doing what you are doing. I find your blog and FB page honest. You find glimmers of light even in the darkness. I don't want fluff, I want honesty. Thank-you for being you and sharing your journey.

  35. Dear Autism Daddy, I just want to say how much I love your blog. You and I are like kindred spirits. Or more like your wife and I are, since we are both stay at home autism moms. My son is also 8 and is eerily similar to "The King". I love your views on life & autism, I love that you don't sugar coat the shit we are going through. I would love to get rid of my sons autism and have a conversation with my 8 year old. Watch him play sports, have friends and grow up and go off to college and become an adult. That will not happen, but everyone has dreams. Autism has taught me so much, like Zoloft and Xanax are our friends.

  36. Anonymous

    I'm glad people are happy and can accept the fact that their kid has asd, but it's a lie if they say they wouldn't change their child for anything in the world. Perhaps they enjoy being a victims of the disorder. I for one don't enjoy the fact that my child has asd and is nonverbal at 5. I love my daughter and I do everything I can to help improve her life and increase the chances of being a functional adult, but right now that's still a pipe dream. It took eight months of accidents on the floor to get my daughter potty trained. Out of nowhere one day it clicked and now the big challenge is to wipe and put our underwear AND pants on correctly afterwards. I've been seeing improvements now in her behavior as she matures and it's a sigh of relief for me. Maybe she has a chance at a future and I won't give up trying to help her. But mainly it's a relief because I can actually clean or take a shower or use the toilet without the fear of omg what is she doing in the next room while I'm gone. That constant worry about the now and the future is what autism daddy refers to. It would be wonderful not to worry about our child the way we do. Wouldn't it be wonderful if our biggest concern was what activities to involve our child in to help them get into college? But that's not our life. Our life is way more complicated than that and no, most people don't want to know how it is to have an asd kid because it's hard. Its emotionally and physically stressful on us as parents abd probably as much so for our children at times when we wish they could just tell us what we could do to help them… so I'm going to end my rant… but yes id choose to not have this disorder as part of my daughter's life. Whoever says I wouldn't change my child…. your child isn't severe or you enjoy your child being dependent upon you for life for some sick reason. before you judge me…… ill tell you yes I'm a more patient patent because of my daughter abd I take joy in the lil things more than I used to with my other children but I didn't choose this and that's the point.

  37. Anonymous

    Its nice that you are honest on you feel. My son is 10 years old and sounds like your Kyle. He is non verbal, not potty trained, has meltdowns with biting. We "try" to be a 'normal" family in away. We talked to him like anyone else asking how his day was what he did. I said this before would I change him so that he didn't have autism yes I would. Seeing your 10 yr.old biting so frustrated that he cant tell us what is going on or wrong. It took me about 2 years accept that he had autism I just didn't believe it at all my baby couldn't have this and why us what did we do. Then one day having a pity party for myself I looked at him and just cried and cried and held him and cried then I accept it there was just something in his eyes. He just turned 10 and is at a 1 1/2 year old thinking which is hard. He is in a GREAT school a small class with just 2 other boys and doing so much better. He still does bite and yells and have his meltdowns but they seem to be less everyday which is awesome about 2 years ago they were so bad that would leave places because of them .
    He is a blessing and has a hard life for a little guy with lead poisoning and he had a rough start too from birth. What also, gets me is when people who donot have a child with serve autism tell you how to raise them and what to do. I tell them to walk in my shoes for 24 hours and see how it is. I don't judge you so please don't judge me at all .
    I also think that autism hides who your kids are and what they can be. When I looked at my son I see a lot of different things and wonder if they will come out . Like he likes art and music . I hate pity parties but sometime I need them and I think parents and siblings need to be honest and tell how it is to live with someone who has autism and not be a shamed. I love both of my kids so much they are my world.
    Katie from Massachusetts

  38. Anonymous

    It makes me feel better when I see I'm not alone.. My son is verbal, 13 and in 7th grade. I can say all that but Autism has very much taken over our lives. You're right about the movie "Ground hog day". It's the same routine just a different day.I've never been away from my son until last week. We were given a trip to Mexico from my husband's work and the family stepped up and said "we'll take care of things you need to get away for a few days." We took the chance and although it was nice to get away… We came home to find all instructions had not been followed.. Diet was changed causing constipation, supplements not given each day because they didn't think it was necessary. Had him eating foods that cause jkm to get hyper and I'm still dealing with the after shock of it all. I'm so gladI hot home when I did and that three of yge days were in school since they follow his routine because I fought them on it. I love the family for saying go we can see you need a break but if you're going to say that then follow the detailed daily list I left for you. I did not take days to make it simple for you to understand just so you could mess up what has taken me 14 years to get right.

  39. I first found your facebook page a few days ago and when I did I posted to your page telling you how happy I was to find someone who could be honest with themselves and others about how crappy autism really is, and one of the things I mentioned was the people who claim that they wouldn't change their kid for anything. I said it then, and I'll say it again: Bullshit. I would change my kid in a heartbeat. She's 6 years old, non-verbal, not potty trained, and can't focus on anything for more than a few seconds at a time. She has several stims, acts out aggressively when overwhelmed with any emotion (happy, sad, angry, scared, hurt, excited, you name it). Other children don't want to be around her, going to friends and family's houses is hell. Going to the grocery store is a huge ordeal. I don't think autism is who my kid is, I think autism is hiding who my kid is and if I could I would get rid of it in a heartbeat. As you said, I would sell my soul to the devil.

  40. I love your posts, especially this one. My son is not ASD, but he has SPD & ADHD, and we struggle daily with trying to get his routine right and sensory diet just right. I just want to say that I agree with you… I HATE my sons diagnosis, I HATE the meltdowns it creates, I HATE the endless appointments, and I would give ANYTHING at all to give him a chance to experience the world as I do, unafraid and excited. I am not strong, and I know this, I try to be, I stand up for him at appts, I get what I need for him, but I'm easily broken and overwhelmed… I rely completely on the support of my friends and family.

  41. I agree. My son in mid range and I would give anything to have him be neuro-typical.

  42. Honestly? I would be first in line if there was a miracle cure for autism. I know that's not a popular sentiment and I ought to be "strong" and "thankful" and "accepting" – but I just want autism out of our lives forever.

    Sorry if that offends people – I'm just tired of being strong about it.

  43. Anonymous

    I admire your honesty!!!! It is so hard for me to think about the future,so I Have to keep it the here and now,I love my son so much,and it is so obvious how much you love KYLE, Thank you for sharing,a parent only wants the best for their children,we give it our ALL,thats all we have to give Take care

  44. "I wouldn't change a thing about my ASD son" more something I say when I am trying to avoid other peoples pity. to show others that my son is pretty great none the less…. but I am with you on this one Autism daddy, yes if I could change autism for him I would!!! I don't think it will take away from his personality, if anything it make it easier to see. my son is High functioning with ADHD… I work with many lower functioning so I can say, I don't understand your house hold from a personal perspective, but I do agree… if I could I would change it too. none the less I wont stop saying " I wouldn't change a thing" because I want to encourage the world to take a moment to see for them self. if I say its horrible no one will take a peek. Parents of autism children , I believe, need the world to take a closer look." its horrible" will keep them away, " I wouldn't change a thing" sparks curiosity. you must admit, our children are teaching us so much then we probably would of ever cared for… so its enlightening… hence. " I wouldn't change a thing"… yet to sleep during the night… a change… or visit friends and not have him brake their flat screen T.V, or 1000$ camera… change…
    anyway… always enjoy reading your blogs… and I was surprised you felt the need to write a follow up… deep down inside we all get it… even if we seem to not.
    Thank you for being real.

  45. When you meet one person with autism, you've met one person with autism. I hate to even say I'm sorry, because I tend to think that no one wants to be pitied. But I do feel for you and know that everyone with an autistic child has their own battles. And you are right, you made some good points. My child is high functioning, and I don't want who he is to change, but I wish dearly our life wasn't so full of battles and struggles and tears. I can't even imagine how hard it would be if his autism was more severe. I feel for you, I truly do.

  46. Anonymous

    I am Miss Lucy Hollywood., From united states of America.I will start by saying to all that have experience heart break and also cant do with out there lover should please stop here and read up my story, So as you will know how to go solving or getting your ex back from this spell caster..AND AGAIN I WILL WANT TO ALSO TELL ALL THAT THIS SPELL CASTER I WILL WANT TO TELL THE WHOLE WORLD ABOUT IS HARMLESS AND DO NOT HAVE ANY SIDE EFFECT, BUT TO RESTORE AND GIVE YOU BACK WHAT YOU DESERVE, COS WHEN I MEET WITH THIS SPELL CASTER THAT WAS INTRODUCED TO ME BY THE WIFE OF MY BOSS IN MY WORKING PLACE, HE MADE IT CLEAR THAT HE CAN CAST SPELL ON SO MANY OTHER PROBLEMS EXCEPT IN GETTING YOUR EX OR MAKING YOUR LOVER TO LOVE YOU MORE THAT WILL SUITE YOU. Last year December, My lover was cheating on me and was not also give me the attention that a man should give to a woman,And really that was troubling my mind and tearing my heart apart to the extent that i was not concentrating in the office the way i use to before the break up by my lover.And before that incident,I always see how my boss use to love his wife so much. I was binging to think that i was not doing the right thing to him that will make him love me forever,So i really gathered my courage and went to my boss wife office to ask her the secret that made her husband love her so dearly,In the first place she refused in telling me,She asked me why i am asking her such a question,That if is it not normal for every man to love his wife.I told her the reason that made me ask her about this question,That my lover started cheating on me lately,When i knelt down before her for her to see my seriousness in this issue that i went to ask her,She opened up to me by telling me that i should not tell anybody about what she want to tell me,The wife to my boss started to say to me that she used a very powerful spell on his husband to love her,And the spell that she used is harmless, But the spell is just to make him love her and never to look for any other woman except her. I QUICKLY ASK HER HOW DID SHE GET TO KNOW THIS GREAT,POWER,DURABLE AND PERFECT WORK SPELL CASTER,she said that a friend of hers also introduce her to him. Then i also ask her how i can meet with this spell caster.SHE SAID EVERYTHING TO ME,THAT THE NAME OF THIS SPELL CASTER IS Dr. DAHIRU TEMPLE. My next question to her was how can i get this wonderful spell caster,She said she is going to give me the email of the spell caster for me to contact him for my problem,Really she gave to me this spell caster email and i contacted him and explained all to him,And after every thing that needed to be done by the spell caster, In the next two days, My lover that hated me so much came to house begging for forgiveness and i was so glad that i have finally gotten my heart desire..I was so grateful to this spell caster for what he has done for my life.. So i made a promise to him that i will always continue telling the world about his wonderful work towards me and also to other that came to you before and also the people that will also get to you from my story that i narrated online now.. I will want to say to the entire world that you should not cry over noting again, That there is a great man that has been helping individuals to restore there Joy and smile in there faces !! The direct email to get this man is : arewaspecialisttemple@yahoo.com This is what i want to tell you all out there,That is thinking that all hope is lost ok..Thanks

  47. Anonymous

    i am thanking the great man called prophetjakula who help me and cast a love spell on my ex boy, we were in love for more than a year. two days to our marriage he called me and told me that he is no going to marry me that he has a woman that he is so much in love with i cried, my friend told me about this man i felt it was scan until i give it a try and he help me now we are married and we are especting our baby soon, i will advise if you have any problem contact this man. prophetjakula@gmail.com

  48. Anonymous

    My husband dumped me three weeks ago because of a girl he met on the internet who cast a love spell on him.I was so frustrated because i had no money to take care of our two kids.So i started selling some of our properties for paying bills. Until i met a friend who told me of a real spell caster on the internet whom i contacted. Dr ekoko told me not to worry and have faith that my problem is too simple for Him to handle because He has done so many other hard jobs for other people.
    So He cast the spell and when i got home from work that day,i met my husband who left me weeks ago,on his knees begging me to take him back.i had no choice than to accept him.When i tried to thank Dr ekoko for his good works,He told me not to thank him but to go into the world and testify of his work.CAN'T YOU SEE! the real spell caster is here.He also cast spell for MONEY,GOOD JOBS,PREGNANCY SPELLS,CURE TO HIV AIDS,SPELLS FOR GETTING EX BACK AND MANY OTHERS….
    I advice you to contact him if you have any problems at .His email is ekokospiritualkingdom@gmail.com or call +23408161779668
    Thanks for your time….

  49. My name is Sandra james and I base in USA…“My life is back!!! After 14 years of Broken marriage, my husband left me and our two twins . I felt like my life was about to end i almost committed suicide, i was emotionally down for a very long time. Thanks to a spell caster called High Priest Mora which i met online. On one faithful day, as I was browsing through the internet, I was searching for a good spell caster that can solve my problems. I came across allot of testimonies about this particular spell caster. Some people testified that he brought their Ex lover back, some testified that he restores womb,cure cancer,and other sickness, some testified that he can cast a spell to stop divorce and so on. i also come across one particular testimony,it was about a woman called Sonia,she testified about how High Priest Mora brought back her Ex lover in less than 7 days and reverse the effect of their little boys cancer, and at the end of her testimony she dropped High Priest Mora 's e-mail address. After reading all these,I decided to give High Priest Mora a try. I contacted him via email and explained my problem to him. In just 3 days, my husband came back to me. We solved our issues, and we are even happier than before. High Priest Mora is really a gifted man and i will not stop publishing him because he is a wonderful man… If you have a problem and you are looking for a real and genuine spell caster to solve all your problems for you. Try High Priest Mora anytime, he might be the answer to your problems. Here's his contact:{varhalaspellcasttemple@gmail.com}.or by phone :+2348148371290 Thank you High Priest Mora.

  50. Hi, I have just found you and thank goodness I did
    I LOVE that you tell it like it is.
    I have 2 diagnosed Autistic children
    my son 5 who is medium to high functioning
    my daughter who is the same but SO diffrent
    and I tell you I would change the fact that they are Autistic in a heart beat
    my son has to go to main stream school ( we are in Australia)
    and he cries cause kids call him baby as he can't speak properly
    as a mother this breaks my heart and you can bet your bottom dollar that is they found a cure tomorrow I would be the first to sign up.
    Keep being a wonderful dad and thanks for helping me and my husband get a handle on life with Autism

  51. My name is Mike Ferguson from London in United Kingdom. I want to recommend this great spell caster to all those out there searching for a sincere spell caster to solve their love problems,please just contact this great man on, ezizaoguntemple@gmail.com for a perfect solution to any love problem. This great man brought my ex back to me just within 72hours. He is truly a sincere spell caster.
    Contact him now, ezizaoguntemple@gmail.com

  52. THE ONLY TRUTHFUL SPELL CASTER AND MY GOD WILL REWORD YOU

    WONDERFUL MAN THAT GIVE MY FAMILY JOY AND HAPPINESS AND MAY MY GOD BLESS YOU

    Dr ODUBU brought back my lover when others spell caster failed ME, he is the best spell caster on planet earth.
    I have contacted several spell casters to help me bring back my lover and after my ex he left me and my son for 2 yrs and moved in with another woman and all this spell caster they usually promise me and at the end fail me.
    Hello To The World At Large, I am Miss WISE, From united states of America. I will start by saying to all that have experience heart break and also cant do with out there lover should please stop here and read up my story, So as you will know how to go solving or getting your ex back from this spell caster AND AGAIN I WANT TO ALSO TELL ALL THIS SPELL CASTER, I WILL WANT TO TELL THE WHOLE WORLD ABOUT IS HARMLESS AND DO NOT HAVE ANY SIDE EFFECT, BUT TO RESTORE AND GIVE YOU BACK WHAT YOU DESIRE, COS WHEN I MEET WITH THIS SPELL CASTER THAT WAS INTRODUCED TO ME BY THE WIFE OF MY BOSS IN MY WORKING PLACE, HE MADE IT CLEAR THAT HE CAN CAST SPELL ON SO MANY OTHER PROBLEMS EXCEPT IN GETTING YOUR EX OR MAKING YOUR LOVER TO LOVE YOU MORE THAT WILL SUITE YOU. Last year December, My lover was cheating on me and was not also give me the attention that a man should give to a woman, And really that was troubling my mind and tearing my heart apart to the extent that i was not concentrating in the office the way i use to before the break up by my lover.And before that incident,I always see how my boss use to love his wife so much. I was binging to think that i was not doing the right thing to him that will make him love me forever, So i really gathered my courage and went to my aboss wife office to ask her the secret that made her husband love her so dearly,In the first place she refused in telling me,She asked me why i am asking her such a question,That if is it not normal for every man to love his wife.I told her the reason that made me ask her about this question, That my lover started cheating on me lately, When i knelt down before her for her to see my seriousness in this issue that i went to ask her, She opened up to me by telling me that i should not tell anybody about what she want to tell me, The wife to my boss started to say to me that she used a very powerful spell on his husband to love her, And the spell that she used is harmless, But the spell is just to make him love her and never to look for any other woman except her. I QUICKLY ASK HER HOW DID SHE GET TO KNOW THIS GREAT, POWER, DURABLE AND PERFECT WORK SPELL CASTER, she said that a friend of hers also introduce her to him. Then i also ask her how i can meet with this spell caster. SHE SAID EVERYTHING TO ME, THAT THE NAME OF THIS SPELL CASTER IS DR. ODUBU. My next question to her was how can i get this wonderful spell caster, She said she is going to give me the email of the spell caster for me to contact him for my problem, really she gave to me this spell caster email and i contacted him and explained all to him, And after every thing that needed to be done by the spell caster, In the next three days, My lover that hated me so much came to my house begging for forgiveness and i was so glad that i have finally gotten my heart desire..I was so grateful to this spell caster for what he has done for my life.. So i made a promise to him that i will always continue telling the world about his wonderful work towards me and also to other that came to you before and also the people that will also get to you from my story that i narrated online now..I will want to say to the entire world that you should not cry over noting again, That there is a great man that has been helping individuals to restore there Joy and smile !! The direct email to get this man is : {odubuspiritualtempledr@yahoo.com} ,This is what i want to tell you all out there, That is thinking that all hope is lost {+447012973504}.Thanks Regards, Miss WISE.

  53. Dude, you are right on with this. I so appreciate your view and the world really does need to see the real A, not super high functioning whatever. Everyone thinks these kids are super smart and have all these gifts. My son is not an idiot, but he will not ever be able to live alone, work, date, marry etc. It freaking kills me and I hate it. I think you should receive the funding for all the Autism Speaks crap and help out us real A parents. Keep up the good blog!

  54. I love you posts. I appreciate your honest views. My Autism child is high functioning and I love your posts because some days copping with it all is just to much. Of course we love our children. But wanting a better future for them does not mean we don't love them. Wishing they could just communicate appropriately instead of punching you in the stomach when your 6 months pregnant. This is reality. Raising a child with autism is HARD. Being a child with autism is Hard. Of course I want her to have a chance at a better life. If we didn't love them we wouldn't try so hard. You will never hear me say I wouldn't change a thing. Its nice to know I'm not the only one and someone out there understands that not loving autism does not mean I don't love my child.

  55. Coleen

    If people don't like what you write then they shouldn't follow you. You have a right to bitch and moan. People should be more understanding.

  56. Anonymous

    I 100% agree! I would take away Autism from my 2 kiddos in a heartbeat if I could. THey struggle and life is very difficult for them. If I could take away that pain and difficulty I wouldn't hesitate for a minute! I think you hit the nail on the head when you spoke of autism being shed in a positive light in the media. I feel like it is often sugar coated and people don't really realize what parents of autistic children are dealing with day in and day out.

  57. i am miss Sharon from U K, I promise to share this testimony all over the world once my boyfriend return back to me, and today with all due respect i want to thank DRMARKROBBIN for bringing joy and happiness to my relationship and my family. I want to inform you all that there is a spell caster that is real and genuine. I never believed in any of these things until i loosed my boyfriend, I required help until i found drmarkrobbinspelltemple@yahoo.com a grate spell caster, And he cast a love spell for me, and he assured me that I will get my boyfriend back in two days after the spell has been cast. two days later, my phone rang, and so shockingly, it was my boyfriend who has not called me for past 10 years now, and made an apology for the heart break, and told me that he is ready to be my back bone till the rest of his life with me. DRMARKROBBIN released him up to know how much i loved and wanted him. And opened his eyes to picture how much we have share together. As I'm writing this testimony right now I'm the most happiest girl on earth and me and my boyfriend is living a happy life and our love is now stronger than how it were even before our break up. So that's why I promised to share my testimony all over the universe.All thanks goes to DRMARKROBBIN for the excessive work that he has done for me. Below is the email address in situation you are undergoing a heart break, and I assure you that as she has done mine for me, she will definitely help you too. drmarkrobbinspelltemple@yahoo.com

    1. Anonymous

      I couldn't agree with you more autism daddy. I too would like to "change" my son if I could. I would like my son who is 6 to be able to talk and tell me how he feels, if hes hurt or hungry. Or just to have a small conversation with him. I wish he had friends. I wonder if he's lonely, is he happy. I wish he could learn how to use the damn toilet so I wont have to change any more diapers. I would change so much if I could. My boy is beautiful and I love him to death but I hate the fact that he has autism. Why him?!!! I also agree that there should be more coverage of the negative side of autism so there can be better understanding as to what we as parents deal with. Some of my friends think that because my son has autism he will be a genius some day. Bull crap, we dont know. I want him to be "Good" now so he can have a better future tomorrow. I am scared to death thinking that I will have to take care of him for the rest of my life. I want him to be able to take care of himself.

  58. Hello all,
    Why must we be confused by all this online scammers when we all know that there has never been any other oracle apart from the the great spell casters called lama lama oracle temple, The great oracle and also i my self called kuq ya that is the greatest of all, Kuq ya means GREATEST AMONG ALL THE SPELL CASTERS. This oracle has been in existence for so many years even before i was born i inherited it from my great father when he died to join his ancestors. Since we have been existing we have never failed in solving any kind of problem anyone must have been having cos we know the spirits that we serve we never lets us down, We perform various sacrifice to this spirits from time to make our powerful and doings ineffective. This temple is out on the internet to tell of you that is wasting your time and also your hard earned money dealing with all this hungry souls that called themselves spell casters and bring cause to themselves by claiming to be what they are not,We advise you all that you should stop it as it is no right to do such a thing,Because those spell casters that called there self different names / temples are scammers,You will do this great oracle good by doing that ok..They are scammers and all those testimony there are posted by them also and not the people they have help,They are doing all this to get money to fed themselves and there family members !!! BE WARNED ALL !!.. I have made so many of them online that are spoiling this great temple good work go back to the sea and some blind. I am Dr Kuq Ya the messenger to the great oracle of Nigeria,Indian,Indonesia,Singapore,UK,USA,Uganda,japan,Spain,Germany and Paris..We are know well there as the great temple that has helped them get many of there ANCESTRAL problems solved in recent times. But we are also extending this great offer to those that have any kind of problem,when i mean any kind of problem i mean any problem at all you might be having or passing throughin life, Such as getting your love back,you want to be rich, you feel like using charms on someone to get something your like from him or her or getting your scam many back,to mention but a few.. KUQ YA IS HERE FOR YOUR SERVICES AND PLEASE STOP DEALING WITH THOSE SO CALLED SPELL CASTERS THAT HAVE REALLY MESSED UP THIS WORK ONLINE.I HAVE NEVER BEEN ONLINE,BUT THE PRESIDENTS OF THE ABOVE COUNTRIES CALLED ME ON PHONE AND ALSO PERSONALLY HOLD A MEETING AND THEY ASK ME THE
    MESSENGER TO START ADVERTING AND TELLING ALL ABOUT THIS GREAT ORACLE DURABLE,PERFECT,MARVELOUS,AND GOOD WORKS TO AVOID THIS SCAMMING THAT IS GOING ON ONLINE… I WILL BE ENDING HERE NOW, IF YOU HAVE ANYTHING BOTHERING YOUR MIND AND YOU NEED PERMANENT SOLUTION TO IT WITHOUT ANY SIDE EFFECT OR HARM,KINDLY SEND YOUR EMAILS TO THE FOLLOWING EMAIL ADDRESS: great.spellcaster@yahoo.com .Thanks and may the spirits guide you to read and understand what i said and also we will be awaiting response from you all that have problems that want it solve at once..

  59. Anonymous

    I am Stephen by name and i am located in Spain,I recently saw a testimony about a spell caster of some sort in a blog I visit for relationship and dating counseling problems because i had been having serious problems with my boyfriend and we had been dating for 1 year, He just suddenly changed, He wasn't returning my calls, He started cheating, He was hurting me in so many ways i never thought possible and I just thought I should try this spell caster called Dr Kuq Ya, Cos there are so many good comments about him on the website, But before i could read his post,I have already contacted many spell caster that cheated me out of my hard earned money without given me result.But when i meet this spell caster out of desperation of some sort.I decided to contact them to please render there help to me, I explained all the problems that i was going through to him and he told me all i needed to do to get this spell casted. At first everything felt dreamy and unbelievable, Their consultations and solution was a little bit easy and strange and I was scared a little cos I had read and heard lots of stories of fake spell casters, scams and i never really believed in magic. I played along with a little hope and faith and I was sent some few stuffs after everything and it worked like a miracle, everything went to a whole new direction, it was and is amazing. I guess it was all good faith that made me read That particular post that faithful day.I hope they could help other people too like they did to me. I did a little and I got everything I wanted and wished for, My husband, My family and my life back You can contact Dr Kuq Ya at: great.spellcaster@yahoo.com.com because he changed my life.

  60. Anonymous

    i am giving this testimony cos l am happy

    My name is mrs. Santana Valdez from Houston,taxes.i never believed in love spells or magic until i met this spell caster once. when i went to Africa in May 28TH MAY 2013 this year on a business summit. i ment a man called dr. Atakpo.He is powerful he could help you cast a spells to bring back my love’s gone,misbehaving lover looking for some one to love you, bring back lost money and magic money spell or spell for a good job.i’m now happy & a living testimony cos the man i had wanted to marry left me 3 weeks before our wedding and my life was upside down cos our relationship has been on for 2 years… i really loved him, but his mother was against me and he had no good paying job. so when i met this spell caster, i told him what happened and explained the situation of things to him..at first i was undecided,skeptical and doubtful, but i just gave it a try. and in 6 days when i returned to taxes, my boyfriend (is now my husband ) he called me by himself and came to me apologizing that everything had been settled with his mom and family and he got a new job interview so we should get married..i didn’t believe it cos the spell caster only asked for my name and my boyfriends name and all i wanted him to do… well we are happily married now and we are expecting our little kid,and my husband also got a new job and our lives became much better. in case anyone needs the spell caster for some help, email address atakpotemble@yahoo.com

    Great Atakpo i thank you very much thank you in 1000000 times.. if not you i would have been losted and wasted thank you. Email Him Through his email address… atakpotemble@yahoo.com

    please make sure you contact him for any financial difficulties okay..

    What a powerful man such as Dr Atakpo.. he is so much powerful..\ email him for any difficulties.. atakpotemble@yahoo.com

  61. Anonymous

    I think this is a good debate…parents of High functioning kids with autism have different struggles than maybe you do with your non-verbal classic autism. I am worried that people will just think he is "weird." Ive had doctors (pediatricians) tell me "he seems normal, he just talked to me and looked at me." I like your comment about the news focusing on kids with HF, rather than those that are not. It doesn't show the true picture in either respect actually. My current concern is asking for a Guest assistance card at Disney to help my 6 year old better enjoy himself, but am hesitant because of some of the looks I am sure we will get because we look like a 'normal' family.

  62. MNAutismMom

    Quoting you on my facebook page about autism – https://www.facebook.com/pages/MNAutismMom/113960475292241 (MNAutismMom) – PS – agree, totally.

  63. Anonymous

    Thank you for your blog.. And thank you for writing those "negative" posts. I am a mom of a 7 year old non-verbal Autistic boy, and I can relate. Your posts make me smile and feel like I'm not alone or crazy, and not the only one who feels so crappy about it all. Keep it up.

  64. Love this! I never blogged in the depths of what my family was going through, and even though I choose to blog now about success…I absolutely appreciate and love your courage to be able to blog in the midst of it ( something I could not bring myself to do 13 years ago)…So I think we need both…telling it like it is and also hopeful this journey can get better….and totally totally agree with the statement that by not telling the real story ( that is why in my before and afters I dont sugarcoat it) we are underplaying the reality of what families need for support!!!!!!!! Great job here!

  65. Anonymous

    you are 100% right. i thought i was one of the few that dont like the 'feel good' stories about autism. its not realistic. your blog is real and raw and you are putting in writing what someone like me doesnt have the talent to do. glad i discovered your FB page yesterday.

  66. Anonymous

    Keep up the good work AD, you tell it like it is and that's the way it should be 🙂

  67. Chad from the world of jenks said it best autism is a jackass of a disabilty

  68. Anonymous

    Hello,
    my name is Miss Georgina peckett, I'm from USA.
    I want to inform you all that there is a spell caster that is genuine and real.I never really believed in any of these things but when I was losing Gilbert, I needed help and somewhere to turn badly. I found consultant.okadibo spells and i ordered a LOVE SPELL. Several days later, my phone rang.Gilbert was his old self again and wanted to come back to me! Not only come back, the spell caster opened him up to how much I loved and needed him. Spell Casting isn't brainwashing, but they opened his eyes to how much we have to share together. I recommend you if you are in my old situation to try it. It will bring you a wonderful surprises as well as your lover back to you. The way things were meant to be. you can contact the spell caster on– okadibospiritualtemple@gmail.com he's very nice and great.

  69. Anonymous

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  70. muna

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  71. Anonymous

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    1. Anonymous

      ??? lady ur nuts

  72. Anonymous

    My kiddo is 7, mainstreamed & I hate autism! I heard someone (a stepmom, literally) talk about "the gift of autism". My thought — then and now — WHAAAT??!! I love my son more than I can say and I seriously hate the autism.
    And you are right — there are far too many "feel good" promos that don't show just how tough it can be.

  73. amazing yet again! keep it up!

  74. Anonymous

    Well I have one thing to say to Autism (not my child) I HATE YOU! My daughter has PPD NOS she is verbal and I'm sure some of my friends who have autistic kids probably wonder why I even bother turning up to Autism support meetings because she's "not that bad" and my family say "I cant even tell she has Autism". I'm not expecting Autism Daddy to understand me but she is bad enough to effect our life daily (I dont work, I stay home and therapize her lol), and she will never be what I consider would be her full potential because SHE HAS AUTISM! She is obsessive, and has meltdowns, she is 5yrs old and cant control her bladder, she beats up her sister and at kinder she walks through kids games walks infront of swings, hurts her self (from bad co-ordination and biting herself) and the reason people think "she's not that bad" is because I never take her out on a bad day, which is every other day lately, and I avoid parties and BBQ's because I spend the whole time taking care of her (she runs flat out when theres people about) And I never, ever take her down the street when she's getting tired. So the public sees her best and I get all the shit. Ha ha that sounds horrible but the whole "I wouldn't change her/him for the world" makes me so mad, the first time I read it I thought she meant I would change her for the world because that made more sense. So yes I have a easier life than some, but comparing my life to my friends who have average children… well I used to but now I dont because I just get upset and cry, its not fair why does she have to have autism? I would love to meet a different Holly, I love my Holly but autism changed her to this Holly so I suck it up and love her with all my heart cause I CANT CHANGE IT.

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  76. Christa

    Very well said. I agree that the "feel good" stories are not doing justice for the "issues" faced when dealing with autism, especially with those dealing with more severe types of Autism. I have had people ask what "tricks" or "talents" my daughter has, which makes me think that the general public is thinking that all kids on the spectrum are savants. I also hate the "low functioning" and "high functioning" labels. What exactly does that mean anyway? If they are HF, does that mean they will live independently? Have a job?
    My daughter doesn't have a lot of the behavior issues, but she does still play with her poop and has to be supervised constantly because she is a mini daredevil. She is not potty trained (at 5 1/2) and most days I wonder if she ever will be independent in that area. I think most ASD parents are afraid to highlight those aspects of autism. I've heard some of the comments people make about the more disturbing behaviors (some even saying that our kids should be institutionalized) and I have to admit that I keep those behaviors to myself.

  77. Anonymous

    My kid is one of the "high functioning" few. He's still not potty trained (at 5 1/2), still smears poop on the wall, and all the other fun stuff we get to deal with – but he's verbal, so he tells me all about it 🙂

    I agree completely!! Autism SUCKS!! I'd take it all away in a heartbeat!

    …. Bonnie

  78. Anonymous

    My son has autism and occassionaly all i wish for is for him to be 'normal'. All we want is our kids to be happy and kind and as people with autistic kids know its bloody hard work, I'm tired and I want a cuppa without interruption, and the chance to go out with friends and my husband without worrying. But, having said all that I love him to death and I think he is perfect. He has taught me so much like the little things in life that used to annoy me actually don't matter at all. So what if your socks don't match or the green container has a yellow lid, or your bed isn't made, or that you're late all the time and your hair isn't brushed and that you can't please everyone. I often look at him and think 'I envy you so much'. I feel blessed to have him, he makes me smile every single day which makes this long, hard journey so worth it.

  79. Anonymous

    I think most people likely agree with you – otherwise autism treatements wouldn't exist, evidence based or complimentary and alternative treatments – it wouldn't be the huge industry it is if people were just OK with their kids being as they are – and so many people who say they are OK with the autism do these treatments – hypocritcal. So I wouldn't sweat it – only a few truly disagree. And they likely are high functioning aspie types who lack the perspective to see anything other than how their life is OK.

    1. Anonymous

      I don't appreciate being called a hypocrite when you don't know me. And yes, I do think my life is ok. I can still understand that other people have different experiences than I do. I think having a different opinion is fine, can't we try to get along? Making judgements about other parentsisn't helping our kids.

  80. I'd give twenty years off my life if it would make my son's autism magically disappear, and I'm not ashamed to say it.

  81. Hey autism daddy, I'm new to your blog but coincindentially something came up today that made me think of you and Kyle. I hope you don't mind me posting a link here but you're in my post.

    http://survivinghayeshouse.blogspot.com/2012/01/real-truth-about-autism.html

  82. Dude, here's my stim again for you:

    DO ashtanga yoga – no need for anti-depression drugs.

    Please relocate somewhere where it is legal and try cannabis therapy for your son. It's better than you'd think!

    One day, when the politics and you and your kid and the family and the doctor are allright; mdma and lsd may also be useful 🙂

  83. Sue

    Wow…I can't imagine what it would be like to change my 27 year old nephew's autism. Maybe he wouldn't have been teased, beaten up in school. Maybe he would have had real friends in school. Maybe he would be able to count money and live on his own. Maybe he would be able to go in a car without fear and anxiety so strong that he has to stop and use the bathroom every five minutes. Maybe he would be able to sit through a movie at the theater instead of missing most of the movie because he went to the bathroom over 9 times. Maybe he wouldn't be stared at. Maybe he wouldn't run off for hours and scare all of us so bad for fear he was hurt or lying dead in a ditch somewhere. Maybe he wouldn't scream and yell and get so angry. Maybe he would be a singer, graphic artist, doctor, lawyer, ABA therapist. Maybe he would be more happy. Maybe he would HAVE JUST ONE FRIEND apart from his family members!!! Maybe he would still be the loving, wonderful smart young man that he is. Maybe we would love him just as much but not feel sad for him.

    Oh how selfish of us to wish he did not have his autism…..shame on us.

    1. I know right! It's so selfish for us to want our children NOT to suffer so we can feel better about having accepted them.

  84. You are so right. Especially since there is talk about changing how aspergers is diagnosed.

  85. I wrote a blog post in response to your question about changing my child, if you'd like to read it: http://inneraspie.blogspot.com/2012/01/would-you-change-your-child-if-you.html

  86. Anonymous

    I'm with you 100%. I hope it helps you to focus on all of us that love your blog for speaking the truth and saying what so many of us have been feeling for so long. Autism just plain sucks.
    I just love it when I get told "When you really accept/understand your daughter you'll realize you wouldn't want her any other way." WTF?

    1. Anonymous

      I agree! Autism does suck and I would change my son in a heartbeat. Not because I don't love him the way he is, but because he can't take care of himself and I fear leaving him alone some day. I hate autism..but I love my son with all my heart! Debbie

  87. I have three children: two dx'd with Aspergers and Bipolar Disorder as a dual diagnosis, and one with Down Syndrome and Aspergers as her dual dx. I love them with all my heart…but, yes, I would take away their disabilities if I could. People often ask me why I post so many negative things to my FB wall…and I ask them to live my life for a week or two. I am an expert at patching drywall…can restrain a child it takes 3 police officers to hogtie…I can make school district employees cringe with fear of having another IDEA law quoted that they are breaking…etc. I do this all on my OWN! No, it's not easy, the rewards are few (but truly heartfelt)…I won't trade my kids for anything. But for anyone to think that me wishing I could suddenly take away the daily suffering I see in each one of them because of their disabilities is wrong of me…they can keep their uneducated and unearned opinions to themselves.

  88. Donna

    I love your posts. I personally don't think taking my daughter's autism (and maybe her ADHD and Bipolar disorder) away would change her personality, it would make it so that everyone would see it, not just us. Too often her behaviors, tantrum and quirks get in the way and people don't see her great personality and very intelligent brain. She is high functioning, but I still worry that her disabilities will keep her from realizing any of her dreams (or our dreams of retiring without our kids one day). I say keep telling it like it is.

  89. Jasmine Johnson

    Okay yeah autism is in a positive light and i am going to rant a negative……………i am friggen tired of cleaning his butt after he poops in a diaper i am so friggen tired of that i can scream. i mean hes 5 now and it aint little baby poop anymore its full on kid poop and im tired of it! and the spitting and half eaten food all over my house and in my fridge. oh my that felt good sorry lol just had to do it cause no one in my life understands lol

    1. Matto

      Ditto, 5yrs old still wiping his butt ofr him..tried toilet training 10 days solid, sitting on the toilet up to 3hrs at a time, just didn't get it. I live in hope and we will try again.

  90. Anonymous

    I think so many ASD parents want to portray to other ASD parents that they "have it all under control" when that is probably not the case at all. I have found on many ASD FB pages or blogs that when one person needs help or has a question those people who feel they have the answers and have "cured" their kids pounce on the parent seeking help. That's why I don't like commenting too much. I like the fact that you, Autism Daddy, share with us your bad moments. It makes me feel like I'm not alone. My child is not non-verbal and doesn't have the same issues that you do but our days aren't that much easier. I like the saying, "Throw everyone's problems on the table and you will be grabbing yours back up in a hurry." We all have different issues that we are dealing with and I wish ASD parents could agree that no part of the spectrum is easy and we all need help and to vent. That doesn't mean we don't love our kiddos more than life itself! Keep on rockin your blog/fb Autism Daddy. You keep my strength up.

  91. Well said Autism Daddy. I'm in your corner and have been since I read your blog for the first time. You're keeping it real, you're helping a lot of us out here with what your experiences have tought you and your wife (both pratical and emotional/personal), and you obviously LOVE your son.

    Not to mention you do a lot to try and keep this a safe place for us parents to gather, vent, be heard, and most of all be understood. Thanks so much. 🙂

  92. Anonymous

    AD you are my hero…we too have a severely non-verbal 3 year boy Jakob…I have always told my husband how it pisses the crap out of me when someone says how they would not want to change their child…really??? You said in your blog what EVERY single parent has felt who has an ASD child but have been too scared to say it…you have the balls to voice it and I thank you…this is not a gift…I would lay down my life if Jakob could talk, stop the incessant stimming, go to a regular school..etc…no I dont want to form him into something I want him to be I just want him to have an easy life…to enjoy everything that a typical person enjoys…dating, getting married, having children, having friends, having a FULL PRODUCTIVE FRIGGIN LIFE…and if that makes us bad for wanting this for our kids then I dont mind being the worst parent on earth…thanks again for your blunt honesty and DO NOT apologize or feel you need to explain yourself…keep up your blogs my friend….we live in NY also and I would love one dayto meet you and Kyle…Jakob and him could stim together lol…Debbie Franke

  93. I understand what you are saying.

    I often say that I would not change a thing about my autistic son. But my son is verbal. Will he be able to live on his own when we're gone? I. Don't. Know. If there was a pill that he could that would ensure he would be able to – I'd give it to him gladly. I think there is so much debate within our community. And ultimately, you are right. It's not always easy. Sometimes autism sucks. We should be able to talk about that too – without judgement.

    ~ Lisa

  94. DONT apologize for the way you feel! Nobody lives your life, they dont go thru what you do. I said on another post to someone, its all cute n stuff when they make those goofy t-shirts for young children who act up excusing their behavior because of their autism, but it aint so cute when your dealing with an adult who does the same thing with the same diagnosis. Most of us arent at that stage yet, we are still dealing with the younger children. But I GET where your coming from and even tho there are good days in our lives, the bad days totally SUCK SHIT! Im glad we can come to a site and express that, without someone ramming a feel good rod up my butt about how special my kid is..

  95. Anonymous

    I have to agree with you 100%

  96. Pete

    I cannot agree with you more. Nathan is 11 and he doesn't smear feces on walls or anything… actually he smears it all over himself. Who would visit a household like such? No one I know. If someone is strong enough to come in and hold him in this condition and swear they wouldn't change a thing, they're 1: delusional 2: liars, or 3: have severe vision and olfactory handicaps. Love him? Absolutely! Change him? I am trying like hell! What will happen when I am gone? If that is selfish… then guilty as charged. This blog needed to happen, and thank you SO much.

  97. Anonymous

    Thank you thank you. I love these posts! And no, I do not want my children to have autism in any form, because it is sad for them. It does not mean we do not love our children as they are, it means we want their life to be easier…we want to see their strengths show through better because they are able to use them more effectively without shutting down. Because we want them to feel what it is like to be in a crowd and be praised for their difference, not have their peers stare at them like an outcast…Because above all else, we want them happy and for life not to be so hard. I would take my kids and their autism any day of the week, but if I could wish it away from them, I would, because my kids are awesome with autism and they would be just as fantastic without it…and their life would be a hell of a lot easier. I agree, I support you, and I appreciate your honesty! Thank you!

  98. Anonymous

    I couldn't agree with you more! I love my son more than I can express but do I want him to be autistic, NO! I want him to have all that my husband and I have had, PLUS SOME!

  99. Anonymous

    People who feel the need to attack your opinion are in need of some introspection. For those who find autism to be a personality trait – they have not been fully exposed to all that autism has to offer. But for those of us who know kids who are aggressive/self-injurious and have spent years and mega $ trying to prevent physical injury – you just have to be a flaming idiot to wish that on anyone. And for those who had a typically developing child that regressed at ages as late as 5 – this is not personality folks. That is a disorder possibly a disease or environmental insult that changed that brain – that turned things off that once were on. For those who are able to function independently – perhaps there is no foul in it at all. But does anyone read the news about all the bullying of children with autism, even amongst the higher functioning sub-types? Why would anyone want to have a child that is more vulnerable to all the evils of this world. Foolishness.

  100. Anonymous

    I was so glad to find your site. You saying what I thought I was alone in saying. Your honest thats a good thing.

  101. m carman

    Sharing is awareness. Your words are power to show all sides of autism. That is why we call autism a spectrum disorder. Noone is going to feel like you exactly or like i do with my son. I thank you for your blog so keep bloggin!!!!!!

  102. Exposing everyday realities can only help awarness. Portraying autism as " a gift" only serves to have us spinning our tires.

    1. Responding to the differences appropriately will give you even better traction.

  103. I think you're speaking honestly about things that others have no idea about. They aren't raising your child. My 9 year old has severe autism…would I change that? Hell ya! Those people have not walked in our shoes. I have a son that needs 100% supervision at all time to be save, doesn't sleep, has multiple pee/poop accidents daily, and can't communicate. Why would I want accept him the way he is??? I want him to sleep, use the bathroom independently, not bolt outside or get into things while I go to the bathroom or take a shower, and be able to tell me that he loves me! I think any parent would want that.

    1. Anonymous

      I love this blog. It is exactly how I feel. I hate when people tell me that Autism is a gift from God and that God never gives us more than we can handle. Wanna Bet? I love my son but I hate his Autism and I hate my life because of it. He is 17 and very severe. It is like having a two year old. It is easy for people to say positive things. They wouldn't feel that way if it was their own child.

  104. Amen!! I have a husband that shush's me when we are in public & I say "she's has autism". I'm tired of people looking at me, thinking I'm a bad mom. "Kids will be kids" is the most recent comment I heard. Of course, I said "Yea, & add autism on top of it". People get very uncomfortable w/ this & I say good. I'm done tiptoeing around it & I don't care what people have to say. I'm blunt with my in-laws as they come 1X/year & offer their opinion. I cut them off just as I start to hear "You should…." My point..You keep posting, writing, "complaining"…We all need an outlet & if this is yours, then keep it up. To all those who judge, what happens if you keep it bottled up. Your son may not have a father at all!!! Plus for those of us that don't live in sugar coated lands, it is refreshing to hear what most of us think in dealing with this every day, hour, minute. You just have the courage to write it…keep it up!!

    1. Forget what others think. Pay them no mind. They aren't worth your time. Do what's, best for your child without excuses. Your child is on a different path. Follow it with them. Days and years from now will it really matter what that judgemental person thinks? Or will it matter what you've done for your child?

  105. jeannette

    I have enjoyed every blog post from you. I feel that under the autism my son would still have the same personality. My son is verbal and is considered "High Functioning" I am worried most that my son will be arrested because of his "Terrorist Threasts" or acting on a hormone impulse. I totally agree that its Bull Shit when people wouldn't change it. I have accepted my sons disabilty. I also have a typical child who is involved in all the typical things little boys do, it sucks. I see what my older son is missing. Also I am a stay at home mom because of the disabilty and financially we suffer. I am not talking about nice cars or anything fancy. But we could keep our heads above water if I could work. Nope, who would watch my child after he bolts or tells someone he is going to slice them with a chainsaw.
    Also when we give birth and become parents our dreams are not AUTISM!!
    Keep doing what you are doing! It is a form of free therapy for alot of us realistic parents.
    I mean cmon, I want my son to have friends and not have to worry about this crap. I want to worry about the typical crap!
    Thank you,
    Gillys mom

  106. Remember that line from the "addams family", "be very afraid"? Well, that's my life too. Kicker is my son is considered HF. Doesn't mean he can organize his day. No, he usually doesn't talk in class. Neither does he have control of his stimming or actions when he is under stress. And no, our educational system is not helping him achieve all that he can be because IEP must be some foreign code for 'idiotic enabling process' that allows teachers to totally disregard this document and not accommodate any language based tasks for him. So yes, I'm "very afraid" for what the future holds for my child. Being a bagger at the local grocery for the 90 days the state pays for isn't doing much for a career option. Not am I excited about him joining the program for HS drop outs, 1st or 2nd offense drug convicts, or others paroled for crimes less than homicide to become "productive members or society". My kid will be chum to the sharks.

    So go ahead, Autism Daddy. Write your thoughts and travails. Personally, I'm pleased as punch (a phrase my son will never comprehend) that you put it all out there. As for the complainers – see the unicorn suggestion above.

  107. Anonymous

    Come on people…if your child had cancer would you love that?? or diabetes….would you love that???? or a traumatic brain injury….WOULD YOU LOVE THAT!?!?! Autism is no different….its a disability, and a handicap…and a strain on the lives of the children it affects. I hate autism too, and Im sure my son does, and your son too Autism Daddy. You cant please everyone, so dont even try. Shawna Tidwell

    1. What is wrong with you? Are you seriously comparing autism to deadly diseases? My grandmother died of cancer, and you want to compare what she went through, and what my mother went through, to having a child who is healthy and has a normal life expectancy? Just because that child doesn't think or act the way you hoped, you'll compare his differences to a life threatening disease? It doesn't matter if he's an awkward kid who talks nonstop about interests or a kid who might never speak – your child is alive, and likely to stay that way. Your situation doesn't compare to someone facing the death of a loved one.

    2. Amen! Indeed!! Autism Sucks! My child is amazing. Just because I hate autism doesn't diminish my love for him one bit!

    3. Anonymous

      exactly. Why would any parent want their child to struggle in life? Every time you see your child struggle your heart hurts.

    4. Heather

      Amen Shawna. Amen.

  108. Stacia

    I absolutely love the blunt honesty of your posts and it makes me feel like I am on a site with people who aren't going to sugar coat everything all of the time. I love that when I read your posts I can relate, and that someone is honest enough to post what they feel. I am sure that the many people who write that they wouldn't change him for the world deep down inside they of course wish that things were different. I love my son with all of my heart, I do however wish that he didn't have Autism, Adhd, and the other learning disorders that he has. Why? Because it is hard on him, he gets incredibly frustrated at the world and at himself, he has to wear diapers..and is ashamed by it, he is years behind other children his age and he knows it. Of course I wish I could take away everything he deals with. His sensory issues, his inability to control his emotions, his stims, I would give him the magic cure tomorrow if it were made available. I think we all would want to make our children better if we could. They would still be the same child..but not imprisoned by their disorders. They have to fight the rest of their lives…and yea..its not fair. I have accepted his diagnosis..but accepting doesn't mean that it isn't okay to feel like it sucks sometimes though. Keep up the awesome posts, I love them!

  109. Gail

    I totally get what you are saying, and I think your voice is important for the parents of kids like yours to hear. It is easy to be shiny happy positive when you can see a glimmer of light at the end of the tunnel, but parents like you, who are in the deep dark trenches of autism, need to know that there is someone else out there who is not having a shiny happy autism experience, and it is ok to be upset. Thanks for being that person in the dark with them. I am sure it helps.

    1. Anonymous

      I don't agree with what you are saying AT ALL, just because you would "sell your soul to the devil" to get rid of your son's autism doesn't mean it would guarantee him a life without worry. I am deep in the trenches of Autism, but unlike you, I would NOT change my son for the world. He has taught me SO MUCH about tolerance and acceptance. Maybe you still need to learn your life's lesson Grasshopper.

    2. Anonymous

      it does!!

    3. yes. 🙂 it honestly does 🙂

  110. Sam

    I think there is probably a "glitter and rainbow" blog about autism out there somewhere that the unicorns can go and read if they think your blog is too negative.

    1. Anonymous

      Great reply!!!

    2. Anonymous

      LOL Best reply ever!!!

    3. Anonymous

      I couldn't have said it better myself.

    4. This comment made my day! 🙂

    5. H. Smith

      Lol, Sam! Love it!