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Natalie Palumbo: Autism, Wandering, and Avonte Oquendo

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By Natalie Palumbo

I am 19, a freshman in college, and the only sibling to an older brother with low verbal autism. For months, I had been following the heartbreaking story of Avonte Oquendo, a 14-year-old boy with non-verbal autism who went missing on October 4th, 2013. Avonte was wandering unattended in the halls of his school in Queens, New York, and went out a side door and vanished into the city. The idea that a child could be so vulnerable while in the “care” of his school is horrifying. Avonte was lost, non-verbal, and no one could find him. I could only imagine his family’s anguish when weeks of searching turned into months. I felt their agony that this could and should have been prevented. Avonte should not have been alone.

When I first heard about Avonte Oquendo, I immediately thought of my older brother, Anthony. He is 23 and has low verbal autism. He cannot live independently. I will be his caregiver when my parents are no longer able. I think about my future all the time, and my promise to care for Anthony. My concerns about keeping Anthony safe can overwhelm me. For families like mine, the thought of your loved one wandering alone and unable to communicate is our worst nightmare. That fear makes me reluctant to trust Anthony’s care to anyone outside my family.

Wandering behavior is the impulsive running or walking away from social and physical boundaries to aimlessly explore. It is a common trait for people with low and non-verbal autism, and a crippling fear for families. The escape risk is so great for some, they prefer to remain at home. Some children with autism will even wander away from trusted adults or guardians. Many of these stories end in tragedy. People with autism can be fascinated by water, and drowning is a terrifying possibility. Even those that can swim may be overwhelmed by fatigue, the elements, or unable to cry for help. It’s even worse to think that because these individuals are unable to report crimes or abuse, they are easy prey.

For months, I followed the story of Avonte’s disappearance with my heart in my throat. Every passing day, I became more afraid and heartbroken for his family. My sadness got worse when I learned Avonte had an older brother, Daniel. I put myself in his place. I can’t even imagine the terror his brother must have felt worrying about Avonte. The thought of Anthony missing filled me with unimaginable pain. In December, I shared my sibling perspective in an article hoping to spread awareness and help for Avonte. I thought about what Avonte’s family was going through over the holidays, and it humbled me. I was grateful to spend time with Anthony, and it made me hope to see Avonte home with his family soon. So many volunteers and autism families spent the holidays wishing the same thing.

On January 17, 2014, I saw an article entitled, “Police Investigate Whether Human Remains Found in Queens are Missing Autistic Teen Avonte Oquendo”. I tried not to cry in class. Human remains and clothes matching Avonte’s were found near the East River. It had been three months since Avonte had disappeared. The police continued searching for evidence for several more days. I felt heartbroken for this family as they awaited DNA tests. When they proved the remains were Avonte, I was devastated. I could only imagine their grief.

So many people volunteered hoping to bring Avonte’s family good news. After DNA results brought a tragic end to Avonte’s story, the tremendous outpouring of grief began. Web pages devoted to organizing volunteers became memorial pages. People from everywhere wrote poems, created art pieces, and sent notes of consolation to Avonte’s family. I mixed one of my sky photographs with an image of Avonte, and wrote words of concern for all the people that came together to help. This easily could have been a story about my brother, and that reality frightened me.

After I posted, I received lovely comments about my piece, and it meant the world to me. My piece Nat Ant 12 12 inspired someone to write ‘a letter from Heaven’, and it was beautiful. I was honored as an artist, but it was bittersweet for me as a sibling. I kept thinking how avoidable this tragedy was. Avonte’s family would never be whole again. They were living our worst nightmare, and everyone in the autism community ached for them.

Avonte’s family never gave up hope, even in the end. They just kept fighting for Avonte. Shortly after memorial services, the Justice Department approved funding for “Avonte’s Law” which offers voluntary tracking devices for children with autism in New York. These tracking devices would immediately show first responders where to find missing individuals with autism. Had Avonte been outfitted with such a device, public service officials would have been able to find him unharmed. I would love to see Avonte’s Law adopted nationwide. It’s sad that it generally takes a tragedy to create positive change. Common sense must prevail. I hope Avonte’s family finds peace knowing so many people united to save their son, and good change for families with autism came forever in his name.

 

Comments

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Michelle M

Well said. Thank you so much for trusting the world with your thoughts and fears.

To Lara Ocaiso, From Natalie Palumbo

Lara Ocasio,

Here is Anita Marshall's "A Message From Heaven".

A Message from Heaven...
Perhaps you aren't ready yet, to say good-bye. For one I ask of you, not to worry about me...I'M with my Lord n heaven now...you knew that's Where I'd be. I'm sorry that you're feeling sad. I'M HAPPY now that I am free...I've asked the Lord to ease the hurt and pain to comfort you so you'll see. It's hard at the beginning, but I know you'll make it through. I hope it helps to KNOW that I'll be here waiting for you.

Thank you Anita for letting me share your wonderful message in Avonte's memory.

Sincerely,
Natalie Palumbo

End Vaccine Injury Yesterday (If Only)

Natalie you are so talented. It brings tears to my eyes.

Thank God you can use your beautiful writing to speak for both your brother and your self.

I also hope you can find other siblings for support and perspectives, and that all of you can find a way to live a life as close as possible to what might have been, had this insane tragedy not happened to your generation. Perhaps you can find ways to share the care or get support from each other, to lobby for help as a group.

The way that you have learned to be so atuned and so kind to your brother will bring you great joy when you do find friends who are the like you because of their life experiences, and because of who they are. The way that you put your grief out there for the sake of others, and care so deeply, means that you will be able to feel the joys of life deeply too. Please remember that when it gets difficult, and please surround yourself with truly loving and supportive friends who will make this path easier for you because they walk part of it with you. You deserve that, and they are out there. And the Age of Autism community is there for you too. Keep writing and sharing, the good days and the bad days, and know that we get it and we care.

Jenny

Natalie, your art is wonderful and so are you. Any family or community you choose to be a part of will be lucky to have such a caring, expressive person in their midst. I'm glad to hear about the tracking option in NY. I hope other cities learn that they don't have to wait until after a tragedy to make a possible change.

Dana

Thank you, Natalie. Anthony is very blessed to have you for his sister.

WarriorMom

I'm printing your article and giving it to our older son who will be, like you, the caregiver for his younger brother with autism when we are no longer here.

You are incredible. I hope siblings who have brothers/sisters with autism will unite so that our older son will not feel left alone when he must assume the role of full-time caregiver for his brother.

God Bless You!

Lara Ocasio

Hello Natalie, I follow everything you post and was too heartbroken by the loss of Avonte. Is there any way I can read The Letter from heaven? Thanks

KFuller

Thank you Natalie.

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