Ben Levin: Author, Advocate, and Otto Specht Alum

Ben Levin is a published author, autism advocate, and Creative Writing major at Fairleigh Dickinson University. His published works include the Nellie’s Friends series as well as a young adult novel In the Hole about a homeless boy in addition to self published books including Ghost Wars. Ben is passionate about many causes, ready to help and advocate for others any way he can. Most recently, he held a fundraiser for his 21st birthday, raising $2,121 to help fight homelessness. When asked what three words best describe him, Ben says: “Creative, hardworking, and self-conscious.” 

For several years at Otto Specht School, we had the privilege to witness and support Ben as he emerged from his internal world of imagination and took his first steps into a shared world, a world of interpersonal relationships with those of us who existed outside of his colorful mind. As Ben progressed, finding his place in the school environment and in the social world, he also became more organized in his movements, and his drawings and paintings began to show more form and stronger colors. All aspects began to flourish. In Middle School, he joined the basketball and track teams. Throughout his years with us, Ben continued to share from his imaginations but the sharing opened up and became dialogue. He often led his conversations with a question as his interest in others grew. He paid attention to context. He began to write down his stories and thought about who his audience was. For example, any of us who happened to have a pre-teen daughter had the privilege of receiving a copy of his first, self typed, photocopied, and stapled book of Nellie’s Friends, now a published series. 

Participating in the Pentathlon in 5th grade

Weaving the Maypole with his friend Giancarlo

Ben has overcome many challenges throughout his life, and for years, considered himself “recovered” from autism. However, in April 2021, during Autism acceptance month, Ben claimed his autism. During these last three years, he has advocated for us to see autism not as a DSM manual checklist of challenges but for the gift that autism and neurodiversity bring to our world.

Last summer, Ben and I took some time to talk about life. We began with his very first memories. He was about 4 and remembers playing with trains and stuffed animals, watching TV, and being with his family. These could be some of the first memories for many children, and as such, do not stand out but others would have remembered that at the time he was not speaking reciprocally even with his parents and he was not engaging with his peers. 

Middle School play

Ben did not know or think much about autism until the time he was considered “recovered.” This designation or “declassification” was based upon a test in which any score under 10 meant one was not autistic. Ben only scored a 3! But when asked how all this made him feel, Ben said it made him feel confused and isolated. At the time, Ben’s mother had written a book, laying out in detail her family’s journey “emerging from the shadows of autism.”  The book detailed tremendous strides, the triumph of a family hearing their child say “I love you” for the first time after years wondering whether they ever would. 

Ben read the book. He says he did not really think much about whether the person in the book felt like him but recalls feeling “different, alone, and less than” because he had this thing (autism) that they allegedly needed to change. For seven years, though, he went through life believing himself to be “recovered.” When he met friends, he did not tell them he was or even had been on the autism spectrum. 

Recently, Ben came to Otto Specht to read from some of his books and discuss being a young author.

Ben with The Hole after reading an excerpt at Otto Specht School in March 2024.

All along, Ben knew there were people who disagreed with the determination that he was recovered but he dismissed them until one day in the 11th grade when a close relative let him know they still considered him to be on the spectrum. Being as close as he was to this person, Ben had to take their opinion under serious consideration which led to another period of confusion for Ben. Ben had some solid friendships and was afraid of losing them if he told them he was autistic. However, he began to consider the nature of these friendships and recognized that his need for these friends had kept him from being his complete and genuine self and that by being honest with them, he might take a risk but he would know these friendships were genuine if they continued. But it wasn’t so simple - he was questioning what he should tell his friends, but at the same time was still questioning what he believed himself. Should he tell his friends he was recovered or should he tell them he was autistic? And was he autistic? As he was in this questioning phase, the same relative said to him, “Autism is lifelong.” He sat with this statement for another two days before discussing it with his dad who admitted he was a little skeptical of the idea of being “recovered” from autism all along. Then, Ben was asked whether he considered autism a disability or a neurotype. This was an important distinction for Ben as it made some sense of the idea of recovery. When Ben spoke to his mother, who had written the book about his recovery, she told him that yes, she considers him to have an autistic brain but that the categorization of autism from which she considered him recovered was based on the list of challenges. For Ben, the definition of autism that he embraced, encompasses both the challenges and the brain. 

It was six weeks after his own acceptance of his autism that Ben claimed and proclaimed it to the world via social media. The post begins: “For 3 1/2 years, I’ve kept a major part of my identity a secret to everyone I know: I’m autistic.” His post (see full post below) goes on to explain not only why he once hid his autism but how he can now recognize the gifts autism gave him. 

“A lot of good can come from having differences and being a part of a community,” Ben says. “I used to only have a couple of autistic friends, but now I have lots. Not everyone is a savant-stereotype, but everyone has a gift to offer, interests, things they are doing and so on.” 

His advice to others with autism? “Embrace it; don’t be ashamed of it.”