Autism: The Toll

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This is one of those posts where you will either love me or hate me for my thoughts. However, these are my thoughts and feelings on my blog. Maybe they can help someone…

I know it’s unpoplualar within the community to paint Autism in a negative light. We preach “acceptence” and “understanding”..  This is something that has always bothered me. It bothers me because Autism has not been a positive experience for me. Maybe I’m the minority or maybe I’m doing something wrong. Perhaps there is something wrong with me cause I don’t see Autism as a “blessing”.

My experience with Autism has been one of loss, pain, heartache, fear, anger, desperation and frustration. I have 3 boys on the spectrum and with the exception of Elliott, Autism has done nothing but take. I personally hate Autism. I hate what it has done to my children and my family. My kids are not “blessed” with Autism. They are forced to carry it’s burden through out their lives. You have to understand that my family is not dealing with the cute and quirky side of Autism or Aspergers (with the exception of Elliott).

We are dealing with the violent,manipulative and scary form of Autism. Both Gavin and Emmett are very prone to violent outbursts. When I say violent I mean violent. Gavin has been violent for years and years. Despite therapy and medication he is still VERY a very loose cannon. Gavin’s has also been “blessed” with a rare form of Aspergers in which he literally floats on the spectrum. We never know if he has hit a period of regression or if he’s just manipulating us. He has however, settled down since spending much of the summer and fall admitted to either the Cleveland Clinic or Akron Children’s Hospital’s psych unit. That was a whole new level of pain and heartache I won’t waste my time trying to put into words because there are no words.



The worst part about Gavin is that he wasn’t always like this. He used to be a “typical” kid. Then at around age 3 or 4 Autism came in the middle of the night and took away the Gavin we knew (and loved for so long) and replaced him with a copy of him. This new copy showed very little affection to us anymore. He became violent and dangerous. Everything that made Gavin so special was gone. We have done everything from diets to medication and EVERYTHING in between and nothing helped. He was no longer there and no matter how much blood, sweat and tears we poured into him we couldn’t do a god damn things about. Autism basically killed the child we knew. That’s the only way to describe it. Gavin is now 11 years old on the outside but is about 3 or 4 on the inside. Gavin will most likely NEVER live on his own and probably never be able to hold down a job. Do you know what it’s like to have to lock yourself, your life and the other kids in your room at night in because you are affraid of being attached in your sleep. I do. We were advised for years to do this because we didn’t know what Gavin was capable of.

Read This  It's so import to connect with your kids

Emmett is worse off then Gavin as far as Autism goes. Emmett is not classified as non-verbal because he has learned a few words but is nowhere near Aspergers. He has very little language ability. He will be 3 in June but is estimated to be about 10 months old on the inside. He is VERY violent towards most everyone in the house. He runs around the house literally breaking anything he can get his hands on. Over the years he has broken almost everything I own (TV,computer,PS3, 360, phone, printer, several windows, countless dishes, ect). I no longer have those things and cannot afford to replace many of them. We have no idea what Emmett’s future holds but we are doing everything in our power to ensure it’s as bright as possible. Everyday I wonder if today is the last day we will have Emmett. Will we wake up in the morning to find him regressed like we did with Gavin? Most parents will never have to experience that very painful and unique form of loss.

I love all my kids, I would hope that it’s pretty obvious but that doesn’t mean I wouldn’t take the Autism away from them in a heartbeat if I could. I want my kids to have the very best life possible. Autism all but has taken that away from at least one of my kids. My kids are not a burden but their behaviors are. It is important to know the difference.

It is also important for people to know that there is a very dark side to Autism. Just because you don’t see it with your child doesn’t mean others don’t. How can we expect the world to understand our kids when we can’t even be honest about it with ourselves. I know there are many families out there dealing with Autism and are doing just fine. I really am glad that they have managed to do well. But for every family out there that’s doing well there is a family like mine that is barely surviving. I think we need to raise awareness about the families out there like mine, even within the Autism community itself. People need to know that no 2 Autistic kids are alike. Many families are dealing with a much darker side of Autism. We need to let these families know that THEY ARE NOT ALONE. Until we all speak up we will continue to go through this alone and the world will go on thinking that Autism is as seen on TV…..

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  • Thanks everyone… I just want to be clear in case I wasn't. I totally agree our kids are blessings. I was saying the Autism and subsequent behaviors are not. Not sure if I was clear in the above post…

    Thanks again for sharing your story here. Please think about joining our group: http://www.facebook.com/home.php?sk=group_1245195

  • my ds has violent outbursts as well, and we are considering medication, his eating disorder makes it hard to maneuver the real world, but we still see him as a blessing. When he is lucid and has those adorable moments, or the way he takes something literal and makes us laugh, it is a hard life, but if I didn't focus on the positive, I would never get out of bed.

    I am sorry your family is going through a hard time, and I am sure having your son in the hospital is beyond heartbreaking. I thank you for being honest about your journey, because if it ever comes that I need to do some of the same, I know I am not the only one who has had to deal with this.

  • sharon says:

    I'm really sorry you guys are in such a tough spot at the moment. It must feel as if there is no light at the end of the tunnel. Given ASD is a spectrum disorder of course some of us will get kids on one end, and some of us at the other. I don't know anyone who has a high functioning child who does not consider themselves more fortunate as we know how difficult it must be for parents like yourself. If my little guy causes stress and destruction, then your guys must take it to 11. I think, or at least hope, we all get that. I for one have a tremendous amount of respect and compassion for your situtation.