Isaac Not Autistic- A Visual Coming of Age

Submitted By: Eva Slagle

My older brother has severe autism and epilepsy. By severe, I mean he cannot take care of himself, he is cognitively at the level of about a 2 or 3 year old and he struggles to communicate. Along with the communication struggles come violent behaviors. I have my fair share of scars and experiences that I wouldn't wish on anyone else.


Sadly, these experiences do not matter to the powers  in my state.


Isaac just turned 18 and he has also been moved up on the list for a care facility for adults with special needs where he would have 24/7 care and supervision. For the longest time, my parents have had to only discuss the violent behaviors to catch the attention of the powers in order to get Isaac placed in a facility. However, now that we are at that point where Isaac has been approved for a facility, and we as a family are now looking for a facility that meets Isaac's needs, we have encountered another problem.


No facility wants to accept Isaac due to the behaviors that we have previously described... and for obvious reasons. This situation is so bizarre to me. And I guess, as a means of coping, I have begun working on this new project. It helps me to take myself out of the situation and see it all from a photojournalist's perspective. I've been documenting Isaac's life lately - the good, the bad, and the utterly insane. In addition to documenting my brother's life, I'm also photographing my mom and dad and the situation's impact on them.


Due to Isaac’s lack of communication skills and inability to care for himself, he requires the full supervision of my mom and dad. He also needs full assistance in bathing as well as going to the bathroom. Isaac’s moods, especially in the Winter, are aggressive and difficult. He’s rarely in a good mood thus making the search for placement in a care facility that fits Isaac’s needs, an urgent one. My family and I have dealt with a variety of behaviors from Isaac - actions that are potentially harmful to himself, my younger siblings, myself, or my parents. He smacks his head when he gets upset and yells at himself to “calm down”. He will sometimes grab for my chest, arm, or neck when I don’t do what he wants like print out pictures of his favorite Veggie Tales VHS tapes. He pinches my sister when she doesn’t write events on his calendar for him. He’s attacked my dad while he was shaving him thus putting himself and my dad in danger. He’s also pushed my dad over and exerts every ounce of force into pinching my dad’s hands. He pinches my mom and grabs her from behind. My younger brother has learned that when Isaac makes his “angry sounds” it’s time to run into his room, lock the door, and hide until it’s safe. All of this didn’t matter to the powers that be in my state from the time he was able to pinch until a few months ago, and even now that he’s 18 and on the emergency placement list, the situation only barely matters.


In addition to all of Isaac’s aggressive behaviors, seizures have been a rather new development in our lives. Usually people with autism experience seizures, but Isaac didn’t have his first one until after he turned 17 making the challenge of finding a facility to accept him that much harder.


This situation has added a great amount of stress to my parents. Stress and tears as a result of years of “autism escapades” as I call them. Unexplainable behaviors such as putting his fist through one of the window panes as well as fighting for the Free and Appropriate Public Education that he is entitled to (FAPE) and even keeping up with a complex medication routine.


I hope the photographs I’ve been able to capture provide insight into an example of life with a person with special needs. Of course there are moments of total joy (I absolutely love my life so this project is most definitely not me complaining about my situation), but there are also moments of fear and frustration. Other siblings of people with special needs wouldn’t dream of discussing their life like this, and even parents insist on enduring their situation and keeping the behaviors secret. I refuse. I hope that these photographs could be somewhat encouraging to families in a similar situation. To show them that there are others who are struggling as well. But I also want this project to bring awareness to those who are not aware that living with a person with special needs isn’t near as cute and inspiring as others may make it out to be.


















8 comments:

  1. Eva It must been hard for you to share this. You did an awesome job. Journal as you see life on the other side. Hopefully the right people will see this. A MHM friend of your Mother. Sharon Reusch

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  2. Eva, You write with such passion and your photos are exceptional, I know your parents are so proud of all that you do. I hope that Isaac gets the placement soon.

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  3. Eva, You write with such passion and your photos are exceptional, I know your parents are so proud of all that you do. I hope that Isaac gets the placement soon.

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  4. I found this incredibly moving. It is obvious there is so much love in your family, despite the enormous challenges.

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  5. Eva,

    The photos and your essay are beautiful, just like you. To me, you will always be that pretty, tiny little girl your dad brought to work with those big beautiful eyes and that kind smile. Clearly you are beautiful inside and out. May God bless all of you and bring a special placement for Issac. Gina

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  6. This is so powerful, thank you so much for sharing- I have no words to express my feelings.

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  7. Wow this writing and the pictures are absolutely so moving, I have a special needs younger brother and I can definitely relate with my parents wanting to keep it a secret. Much love to your family and I hope Isaac can be placed in the best care for his needs.

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  8. This was beautiful to read and look at. Thank you for being so brave. I have developed my understanding on Autism, thanks to your courage. x

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