Warning – I am upset – I Hate Autism
I am going to take full advantage of using my blog as a diary right now; FULL advantage. I am fuming and need to get this out. It should be Slimdown Sundays, but right now, I just don’t care about anything. I am sure I will regret posting this later.
I am tired.
I am tired of the tantrums,
I am tired of the screaming,
I am tired of the yelling,
and I am tired of the stimming.
I am stressed beyond stressed.
I am tired of trying to figure this out, trying to find the answers, but still feeling like I am getting nowhere.
I am pissed off.
I am angry.
I hate Autism.
Yes, I am very down right now. In an hour, I will be back up to myself, but right now, I am frustrated and needed to get it off my chest.
Ladies and gentleman, this is Autism at it’s finest. This is the really real side of Autism you don’t hear about.
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Do you ever hate Autism?
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The only thing I’d add to this, being #actuallyautistic with an aspie daughter who is now raising an #actuallyautistic son is that I watched my sister raise (and eventually lose) a daughter with cystic fibrosis. That alone cured me of ever feeling sorry for myself as a parent. Bless parents, for they are tired.
After 2 decades there are days that I really hate autism. But interestingly what I found is that my sons have grown to accept who they are and are proud of who they are. Proud in fact to tell people they have aspergers. Their autism is as much a part of who they are as the color of their hair. In truth, they are highly intelligent with major social deficits. They are in their twenties and in grad school, yet still live at home and struggle to be independent. Our goal is that one day independence will happen, yet who knows. I think I hate autism the most, as their peers age, go out into the adult world, enter long term relationships, get married and even have children. I wish something normal for them, and feel bad for them that everything is such a struggle. Life shouldn’t be this hard.
Then I turn on the news and see pictures of Aleppo and those who live under ISIS. I remember that we hit the cosmic lottery being born in the US and having resources available to help them. Then I count my blessings, settle down, and do what needs to be done to move one more step forward.
The internet was an amazing piece of “science” connecting people around the world, so why to we just share more hate. I think I could live without the internet, so I don’t have to see the hate. We all are given choices. And with science, that is very true. I have 5 amazing kids (18, 17, 15, 13, and 11). The 18 yr old reads at a 5th grade level and as a senior is graduating high school with one year or college classes finished, a gpa of 3.9 and a full ride for 4 yrs to a private college. We worked hard and she will go far. The 2nd struggles with ADD and “gifted”, the 15 and 11 year old are “Gifted” past high school level and my 13 yr old has dylexia, CAPD, PTSD and is also gifted in math/science (but is only reading 3rd grade as a 7th grader, with an IEP for the last 4 years and tutoring since kdgn. So doesn’t matter what the “title” we place on the children. No matter is if is a struggle to learn or to live, when you look back, do you regret your decisions. I don’t. I only regret reading the hate we throw at each other. To all the moms and dads that are struggling everyday to help our kids learn and grow and “fit in”, bless you. We are all “outcasts” in our own ways and it is wonderful to read about others that care and love their children enough to fight for them because we are a “minority” (at least in the US). And for the people who just want to write more hate, open your eyes. Hate is easy. It is for the weak. Love and patience is for those who have strength and want more. Open your eyes.
I see that Realist is gone now but I’m going to say here what I said on your blog, in case people who read what he said come back for a follow up. I’ve been on the internet for a long time and in my opinion people may have strong opinions about things but they don’t actually mean it when they say things like this; in fact, most of the time they probably don’t even care. What this person is doing is using your article as a way of gaining attention for himself, for whatever reason (sad, lonely, disabled himself, I can’t even guess) and the internet is the only way he knows to get people to notice and pay attention to him. Much like a child, where any attention is good attention. Because he doesn’t actually believe what he’s saying, trying to educate him on the issue is completely pointless; since all he wants is your attention, he will consistently return knowing that he can get it. Ever since the internet has existed, so has the saying: “Don’t feed the trolls.” That’s all they want from you; to piss you off and get you talking to them.
And, yeah. Sometimes I really really really hate autism. Really.
-jillsmo
@Henri – Thanks Henri. Great points. I am sure you are right and that my son hates not being able to control his emotions. We are going through a bought of anxiety right now that is extreme. I can tell he hates it too. What is crazy is that this post is from almost a year ago and I can say that we are so much further along. These all out massive tantrums over the littlest things have almost all but ceased. It has been about a month since he has had a huge tantrum. We have plenty of other issues to deal with for sure, but at least this has improved.
PS: Thanks for your note to Realist, Mr. Anonymous above!
@Realist – I am laughing at you. Just want you to know that. You have done the opposite of what I am sure you thought you would do. I am not upset, just laughing at your ignorance. As I am sure everyone throughout your life has done. You obviously have some serious, serious issues. I wish you the best of luck finding some help.
@mommytotwoboys – I know EXACTLY how you feel. I feel this daily. My child is on the spectrum, and speaks, but is constantly grunting for what she wants, instead of trying to tell me. I think we are asking a lot of ourselves as parents to be always “on” instead of keeping a balance, and some perspective on this disorder. If we don’t we will “lose” it, literally. I have lashed out at my child, but stop when I remind myself, that “she hates this fking disorder, more than me!” I am sure it is imprisoning to the child with autism spectrum, to not have the voice other parent’s simply take for granted in their own children. NO one understands what it is like, unless they are dealing with “it” daily. I try to tell myself that she is also a 3 year old, so where do you draw the line between the disorder and the typical toddler? But I did like your rant. We are only human.
To Realist, it sounds like you are the failed experiment and the retard. I can see that you are an uneducated, narrow asshole, who knows NOTHING of the nuiances of the disorder called AUTISM SPECTRUM. There are a wide variety of different types of AUTISM. They are not just head bangers, and biters. It is quite possible that you are angry at yourself, for being so typical and boring without one ounce of sense, or quite jealous that some of these children will acheive the kind of greatness you will never reach. Why don’t you just rid the World of your idiocy, so the rest of us can at least have a chance to educate others, to not just write these kids off as RETARDS. That is a blanket statement, and doesn’t apply to every child with autism. Grow up, and take responsibility for your own self-inflicted lobotomy.
i feel the same way too :(( i really hate that. i feel depressed everyday because of it. urghhh =.=
i really wanna find the cure. but idk how 🙁
@sploit@xanga – Thank you for helping me see this through my son’s point of view. I feel terrible that I rant and don’t even take into account how my son, and those of you on the spectrum, feel. But you and another commentor above, who have Autism, really helped me to see that. I never, that sounds so incredibly selfish, thought about how terrible it also must be for my son. He hurts even more than me.
@aemom – Yes, and then I always feel guilty at bedtime for desperately wanting bedtime and not enjoying my son! Vicious circle!
@dernhelm23@xanga – Sorry I am so behind in responding to your comment here. I read it at the time, really took it to heart, but just never replied. You TRULY opened my eyes to my son’s side of things. In a huge way, you changed my thinking and enabled me to have more patience and be so much more understanding. I can’t thank you enough.
I hate it too!!! I love my son hate the AUTISM… I want my boy back!!!!!
At least you’re experiencing it from the outside. When you’re an adult and you go through it with yourself it feels like crap. I don’t tantrum, but I do zone out and I get very easily frustrated when I don’t understand things. I have a small little life because the world is just too big and too full of stuff… I understand how you feel, though. You rock for sticking through it.
I always hate autism.
Welcome to Holland.
I’m glad you ranted. We all feel that way from time to time, I’m sure. Sometimes I remember it feeling like a strange, twisted prison sentence imposed on my son and my family. It’s exhausting, physically, mentally, spiritually, emotionally, financially….but you will get through it. One day, one hour at a time. One step at a time. Keep putting one foot in front of the other, and tell yourself that’s all you have to do next. Just the next thing – that’s all.
Hugs and peace to you. Pamper yourself, if you can – it does help take the edge off, so you can take that next step with your child.
Hah. My husband isn’t so bad, but he’s still an Aspie. It’s so hard to communicate with him sometimes, especially about feelings. Most of our fights are about miscommunication. And also that he thinks his way/thinking/feelings are always more logical and better than mine. He has no concept of empathy. It can make things way difficult.
Yes. My brother who’s 19 has Aserpger’s, and my cousin who’s 5 also has it. As much as I love them, I sometimes can’t stand them…..and it’s not because of them. it’s because of the ASD….
yes indeed I do
Yes, I do very much Dislike Autism, I know exactly how you feel. It’s soo much work emotionally, physically, mentally, it’s exausting. The not knowing drives me crazy! Will he ever Speak or Understand or Listen. This isn’t how I thought it would be.
Autism, is sending me on a wild-goose chase to unlock the answers to help my baby. I am thankful for the little successes we’ve had but I long to hear his voice.
I’ve learned to just make Peace with it. This is our life now so we make the best of it and never underestimate our kids or let anyone try to. Always check up on them and make sure everyone is as passionate about their abilities as you are.
One Day at a Time,
Just get through today,
I look forward to bedtime…I can’t picture my life any other way though. For now, I am my sons voice.
Yes, Yes & Yes. I would LOVE to just cancel therapy and enjoy our summer but that’s not an option.
Hell yes. Thank you for the rant. It helps.
Sometimes I hate it too. =[
I wish I could say I don’t know how you feel…only I am here to tell you that as much hell as caregivers go through, for us who give them that hell it is a million times worse. Stimming causes me physical pain, meltdowns are destroying my health and I daresay my marriage, stress is multiplied for those of us due to all our sensory processing issues and anxiety and delicacy, and figuring things out and trying to find answers is indeed as futile as any of us always fears. And if we could stop and make it better, I promise we would. But we can’t.
So yes, I hate autism too. Best wishes though, I hope things get better for you.
Every time I zone out and come back in, I fume at myself internally. I never had the kind of autism that featured tantrums, and I don’t think my mother would have stood for it.