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Scrutiny and Loss in the Age of Autism

915AntAndNat02By Natalie Palumbo

I’m 21, a junior Motion Design major at Ringling College of Art and Design, and the only sister to an older brother with low-verbal autism.

It was a busy summer. I spent most of it working on freelance animation for musician Jim Hossick, known affectionately in the D.C. Metropolitan area as "Kidsinger Jim". I first met "Mr. Jim" when I was in preschool with Anthony. Jim performed at our school, which was a center for special education with an integrated pre-kindergarten. During one performance, one of the special needs kids reached for Jim's guitar. Jim leaned in so he could hold the tuning keys, and just kept playing. True tolerance is so hard to come by. My mom still can't recall that moment without tears. I wanted Jim to be proud of my abilities and surpass his expectations. He was overcome. I presented “Daddy Longlegs” to my animation teacher, and he was overjoyed with the production value.  Surpassing his expectations, too, meant everything to me.

 

When I was working, Anthony would repeatedly say, "play it", and attempt to sing along. I’d never seen him do that before. The fact he was invested in my animation weighed very heavily with me. Only a select few things make it to his "over and over" list. Whenever I make art, I try to show it to Anthony. He’s a good bellwether for what is visually appealing. Anthony is the one person in my life who remains consistently kindhearted and sincere. I think of him for comfort when I'm overwhelmed by the world exploiting conflict.

There is a part of me that always feels scrutinized for caring so much about my family, especially my brother. Despite attempts to explain Anthony's situation, someone will misconstrue my concern as preoccupation and try to "wean" me off of being "so sensitive". Most making that assumption barely know me, let alone Anthony. They aren't interested in hearing any details from me, but want to persuade me to conform to their idea of what is important. They don't want to be bothered with the details of what makes my concerns so different.

Ten years ago, when I would mention my brother had autism, no one knew what that meant. I would try and explain his condition, and they were still confused. Now most associate the word autism with someone verbal with savant skills and manageable social quirkiness that can be "pushed" toward higher performance. They jump to the conclusion my brother must be verbal too, and I worry too much. Before letting me explain his limitations, I've been judged.

It’s exhausting having to clarify each and every time I'm questioned that “NO, my brother is low verbal” and “NO, he can’t be in a group home situation because he can't report” and “NO, my parents aren’t forcing me to take care of him in the future" and "YES, I choose to because I love him and need to know he’s safe." I really wish I was making this up, but I seem to answer the same questions every time. It boggles my mind that I'm met with scrutiny just for caring about my brother's safety. I never thought being considerate would be daunting for people to understand or for me to explain. It's frustrating to be questioned when it does not factor into their lives in any way.

As a sibling facing the realities of caregiving, it breaks my heart to witness attempts to define the 915NatWithFlowerscondition as a novelty to be cherished and not questioned. These ideas are expressed as "celebrating neurodiversity" and any attempts to improve quality of life is seen as "tampering". I've seen many with autism who are gifted with exceptional abilities, but they function at the very highest end of the spectrum. My brother aged out of special education at 21 and can't carry on a conversation. He can only answer simple multiple choice questions. If you asked him to describe a favorite memory, he couldn't do it. Anthony can't formulate spontaneous language. He wouldn't even understand the question.

It is irresponsible to ignore those without communication who suffer with sensory overload, chronic pain from digestive issues, and limiting food allergies. The low and non verbal can't advocate for themselves, so their families must fight for them.  Dismissing their suffering and attacking their caregivers is nothing less than cruel. There are many colors of autism. All of them need to be considered. 

A final point of note...

My uncle died June 6th, 2015 of cancer. He was one of my mom's two older brothers, and had been struggling with cancer for many years. My dad stayed with Anthony so my mom could attend services without any concern for Anthony's comfort. She could rest her mind about Anthony, and it was a big relief to her. I went with my mom for moral support. I stood silent watching her touch her brother's coffin to say goodbye. I couldn't help but think of how similar it all was to when my grandfather passed ten years ago. Anthony couldn't be there either. My mom knew he couldn't handle the services, so he stayed with family friends. It added to the sadness that nothing had changed in ten years that would have made Anthony's attendance possible. For many of us, autism is a constant that never takes a break, even for death. Before any grieving could begin, my brother's autism had to be managed. That brings concern to a whole new level. It's a sobering reality that has to matter.

NAtalie Palumbo is a Contributing Editor to Age of Autism.

Comments

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Jen Bate

LOVE the animation, his song, and your writing. Keep it up. The most profound, heartbreaking, simple, and wistful statement in this piece: "True tolerance is so hard to come by". Brilliant.

mary w maxwell

Dear Natalie,
I’m so thick I didn’t even know the item could be clicked on. But now that everybody mentioned it, I tried it.
My gooorrrrrrd.
We are talking major, major serious business here.
Especially liked the dance at the end. Swan Lake’s got nuttin’ on you.

Rebecca Lee

That was a lovely piece,Natalie. My father had Asperger's and I once had a conversation on line with a person who also had it and was very defensive about not being poisoned or sick in any way. I of course think all of this is mercury posisoning. I told him my dad was an interesting,quirky and brilliant, but be careful, becasue he had really bad gut issues, too and a wicked tremor to boot. So I didn't want to take the interesting aspects of Aspergers away from him but better not get any flu shots and be careul of dentists.

Now, I have wound up being a caregiver for MY brother who didn't have the problems show up until later in life. He was Phi Beta Kappa and a lawyer and now can hardly read or write and has a terrible time finding words to communicate. A hair test showed high mercury, cadmium, antimony and lead. He had all the vaccines and fillings and lots of exposures all his life.

Please read my website

Linda1

Natalie,
As you are finding out, we live in a crazy society. On the one hand, they will give you awards for your brilliant art work, and on the other, they will try to make you less sensitive. It is an artist's job to be sensitive! Without your extreme sensitivity, Daddy Longlegs would not be a very good dancer!

Our society has a culture which is damaging to the family. In other cultures, it is normal to be born and die in the same house, with generations living together. Here, if one is living in their parent's house past the age of 18, they are considered a failure. It is considered odd for parents to raise their own children. Our culture institutionalizes the young and the old and anyone in between who is having difficulties. And the rest society tries to homogenize into one big mass of compliance and conformity.

Please be strong, stay sensitive.

LOVE your animation :o).

Denise Anderstrom Douglass

Oh, Natalie, I've been a fan since I read your first AOA piece. Do not ever give in to feelings of being "different" than your peers, who haven't got a clue to life. Life will teach them. It isn't your job. And don't ever give up. Your art form may change as you walk your path, but I know it will not dumb down, and it will not ever apologize for love.

I am so impressed with this animation of yours I'm going to forward this whole thing to my son. I think both his children will like it.

Science is pure.  People are corrupt.

Natalie - it is said that beauty is only skin deep, but your beauty courses through every fibre of your being.

Researcher

Natalie, you are just...amazing. How lucky we all are to have you in our community, for so many, many reasons.

Someone

Dear Natalie, you are being scrutinized by others as you are a rarity-- a compassionate, loving sister, who wants to be there for her brother-- in a world filled with people who truly do not care very deeply about others. You are functioning at a higher spiritual level, and that is why others view you as an oddity. You certainly are strange-- to them-- but not to others who understand and who have deeper feelings of connections to others like you do. It's not you, Natalie; it's them. If only there were more people like you.

On another note, your video is a joy to watch. I love that the images continue to change and do not repeat, making the video much more complex and delightful to watch. I plan to show it to my child (a budding artist) as an inspiration-- a brilliant marriage of computer technology and art. Thank you for sharing your talent with us.

John Stone

As always perceptive Natalie - it seems to me there is some unbridgeable divide between people who have had to live and cope with these problems autism and those who have not. But I suppose it won't be long now before we are in the majority!

John

Jeannette Bishop

Thank you, Natalie. I love your animation!

IMO your situation smacks against some socially valued fiction presented as "real-life" information and your character might be more than some of your peers can fathom too. I hope you can find some friends who at least want to understand your reality as much as they can without being able to live in your shoes!

Sylvia

The love, intelligence and insight you show makes it hard for me to remember that you are so young. Many other people in this world live into old age without ever gaining a fraction of what you possess, Natalie.

Jeri Edgmon

Love your animation!! Great Job!
Keep up the good work animating and being a good sister and friend for your brother!!

Laura Hayes

Natalie, once again you have written with the wisdom and eloquence of one much older. The paragraph I am cutting and pasting below is so spot-on and well-stated, and it reminds me of when our son Ryan was just 5 years old. One of the special ed teachers at the elementary school said to me, "You do know that when Ryan turns 18 you will have to place him in a group home." She said this after sitting through our IEP, listening to all that I and Ryan's tutor team were doing 7 days per week to maintain the precious little we had painstakingly managed to teach Ryan and to keep pushing the envelope forward. I looked her in the eye and told her that we most certainly would not make the choice to put him in a group home, ever, if we could help it. I told her that we love Ryan, that we did not view him as some burden that needed to be unloaded at age 18, and that our hope and prayer was that he would ALWAYS be in the loving home and care of a parent, sibling, relative, former tutor, or someone who knew and loved him deeply. She looked at me with a look that said, "You are a bit nuts." Years later I saw her when a mutual friend died, and she came up to me and told me how embarrassed she was when she thought back to how little she knew when we first met and how much she had learned over the years, no doubt as a result of having countless kids with autism on her caseload. She was very genuine in her remorse. I reminded her what she had said to me, and what my answer had been, and I think she had a whole new level of compassion and understanding. Keep on writing, Natalie. Your words exhort, encourage, inspire, and bless. Here's that paragraph of yours that stopped me in my tracks with its perceptiveness and eloquence. All the best to you, lovely Natalie :)

"There is a part of me that always feels scrutinized for caring so much about my family, especially my brother. Despite attempts to explain Anthony's situation, someone will misconstrue my concern as preoccupation and try to "wean" me off of being "so sensitive". Most making that assumption barely know me, let alone Anthony. They aren't interesting in hearing any details from me, but want to persuade me to conform to their idea of what is important. They don't want to be bothered with the details of what makes my concerns so different."

Gary Ogden

Natalie, you are far more intelligent than those who second-guess your crystal-clear understanding of, and love for, your brother. You are truly a model for the best a human being can be.

mary w maxwell

Dear Natalie, i can see that you might feel 'scrutinized,' but there is nothing to apologize for. On the contrary you are a model to many. Keep it up!
I am sorry you couldn't all be together at your uncle's funeral. I uunderstand it is unfair and sorrowful. But it's nice that Bro helps your art work!

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