A Behind-The-Scenes Look At Autism From A Sibling’s Perspective

Phoebe Smith Increasing Awareness and Acceptance of Autism Through Photography

Phoebe Smith photo of Romy Smith autism siblings

 

By PJ Feinstein

 

For her final project at Cambridge School of Art in London, photographer Phoebe Smith decided to document the everyday life of her younger sister, Romy, who is on the autism spectrum. “She brightens our lives with her positive and happy personality, although there are of course times when her behavior can be extremely challenging,” says Phoebe.

 

At 18 years old, Romy is non-verbal, struggles with severe learning disabilities, and requires around-the-clock care. However, she’s also an exceptionally gifted musician and “a beautiful, friendly, kind, and caring young woman,” according to Phoebe.

 

We talked to the 21-year-old documentary photographer about growing up with an autistic sister, what she learned by photographing Romy, and what she hopes others will take away from her aptly-named project, “My Sister Romy.” 

 

How old were you when your sister was diagnosed with autism? What do you remember about that time?

 

I was just two and a half years old when my sister was born at 28 weeks premature. We were on holiday in Suffolk, and two days later, Romy was transferred to our local hospital. This is when our lives changed forever. Romy was given a glucose overdose that resulted in a brain hemorrhage causing permanent brain damage. She was then diagnosed with autism at the age of two and a half.

 

Although I do not remember the whole ordeal, I do remember growing up seeing my parents fight for the justice Romy deserved. It was traumatic for us all, and it ultimately resulted in a long period of grieving for my parents.

 

Phoebe Smith photo of Romy Smith

Growing up, what was the most difficult thing about having a sibling with special

needs?

 

The most difficult thing about having an autistic sibling was the lack of understanding from

everyone. The constant remarks, the stares, and the utter ignorance of some people are

things I have found the hardest to come to terms with.

 

Why did you decide to document Romy’s life in photos?

 

Growing up with an autistic sibling, I realized that stigma surrounding autism and disability is extremely prevalent. Many do not realize the full extent that families who deal with autism have to go through on a daily basis. Therefore, I decided to focus on Romy’s day-to-day life with the hope of increasing awareness, understanding, and acceptance of this disability.

 

What do you hope others learn about autism through your photos?

 

The impact that autism has not only on our family but others too. The elements that go on behind closed doors at home are often never spoken about. Using a documentary approach allowed me to capture natural and raw photographs, which show in-the-moment, realistic scenes from her life within our family home and other environments. This gives the viewer an insight into our lives, with the hope of creating more understanding of autism as a whole.

 

Phoebe Smith photo of Romy Smith autism siblings

Did you learn anything new about Romy by photographing her?

 

I learned just how much Romy does, in fact, understanding of the world around her. As she is non-verbal, people often assume that she understands nothing. The more photographs I took of her, the more she blossomed.

 

Which photo is your favorite?

 

My favorite image is the one of Romy chewing her t-shirt with the light reflection upon her. To many, it may look like a normal portrait at first, but upon closer inspection, one can see her t-shirt in her mouth. It brings up many questions, such as “Why is she chewing?” It makes people think, and that is exactly what I wanted my project to do: to provoke questions and to provide the answers to give people a deeper understanding of our lives with autism.

 

Phoebe Smith photo of Romy Smith autism siblings

How did Romy respond when she saw all of the photos you had taken of her?

 

When showed the images, Romy engaged with me and looked straight at them, clearly taking in what they were. She knew throughout all of the photoshoots what I was doing and what was going on, so I am sure it was interesting for her to see a glimpse of the final images. But of course, in true Romy style, she got fed up of looking and pushed the photos away!

See more of Romy's journey by following Phoebe here:

Instagram: @pheebsey

Twitter: @pheebseysmith

Facebook: @pheebsey

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PJ Feinstein