Life With Autism

tags: Neurobehavioral Unit (NBU)

By Paige Talhelm

When my brother Sammy was born, my life was transformed, and not just because he was my first sibling. My life would thereafter be filled with therapy and doctors’ appointments, professionals coming in and out of our house, and a foreign language of sorts with terms like IEPASD, and SLP. Instead of playing house, I grew up playing ABA (applied behavior analysis) with my dolls. Sammy has Landau-Kleffner syndrome and autism. He’s also the light of my life.

Being a sibling of autism can be very hard. You struggle to live your own life and also protect your sibling with a disability. It drives me nuts when people stare at him in restaurants or stores. It hurts me to the core if someone uses the ‘R’ word. Sammy and others like him did not ask for their disability, so why should they be picked on? More importantly, who is to say that my brother’s way of life isn’t normal? Just because he doesn’t do it ‘our way,’ people want him to change. That eats at me every day. 

Paige, Sammy, and brother Jack

Developmentally, my brother is much younger than 17. He has to work harder every day to do simple tasks others take for granted, yet he does so with a smile. From the moment I first had the chance, I volunteered to work with individuals with disabilities. I wanted to offer the kind of support to others with special needs that I would want in my own brother’s life. And I loved it.

I’m attending Johns Hopkins to get my master’s degree in Education of Autism and Pervasive Disorders. I am also working as a clinical assistant at the Kennedy Krieger Neurobehavioral Unit. I am continuing my volunteer work with two nonprofits that serve the disability community: PALS Programs and The Next Step Programs. All of this is guiding me toward my long-term goal of creating an organization for adults with autism. In a few years, Sammy will be 21 and no longer eligible for public school services. He will not be able to live on his own or take a job. I want to help him and his peers by creating a place where they can continue to learn after age 21.

Even though Sammy has changed my life in many positive ways, I know that it is still okay to feel jealous or angry at times, not only because he is my brother (we’re siblings, after all!), but because it’s understandable some days to want to live a life without autism. But siblings with autism alter our lives in tremendous ways, and I would not be the person I am today without Sammy.