Emma and Ben, Non-Speaking Autistics, Answer Our Questions

The film The Reason I Jump (based on the book of the same name) offers an immersive insight into the experience of non-speaking autistic people.

Two young adults in America, Emma Budway and Benjamin McGann, featured in the film, and thanks to director Jerry Rothwell, Neurodivergent Labour interviewed them.

When did you read the book, The Reason I Jump? What did you think of it? Are Naoki’s experiences and views similar to yours?

Emma: I think we read The Reason I Jump shortly after the book was translated. It came out around the time I started spelling to communicate. It was so helpful to me and my family. Really life altering! My mom would read me a chapter and we would discuss. Naoki does a brilliant job describing the autistic experience. I share his relationship with time. I also yearn for social opportunities. Unlike Naoki, I am able to use eye contact but frequently it looks like I am not attending.

Ben: I READ THE BOOK A FEW YEARS AGO WITH MY BROTHER. WE ENJOYED NAOKI’S DESCRIPTIONS OF BEING AUTISTIC. SOME OF THEM RESONATED FOR EXAMPLE HIS DESCRIPTION OF VISUAL STIMULI. I STIM ON RUNNING WATER BOTH VISUALLY AND TACTILELY.

How did you become involved in the film, The Reason I Jump?

Emma: Jerry found Ben and me online due to our advocacy. He traveled to the States to meet us. My mom and I watched some of his work and were blown away by his films. I knew we were in good hands. When we met him, he was very respectful, and I trusted him immediately.

Ben: I WAS CONTACTED BY METFILM AND ASKED IF I WOULD BE INTERESTED IN MEETING WITH JERRY ROTHWELL ABOUT A DOCUMENTARY BASED ON NAOKI’S BOOK. JERRY TO CAME TO MEET WITH ME AND EMMA AND OUR FAMILIES AND SCHEDULED A TIME TO COME BACK WITH A FILM CREW. AFTER MEETING JERRY I KNEW I WANTED TO WORK WITH HIM AND SHARE MY EXPERIENCE AS A NON-SPEAKING AUTISTIC.

We can see from the film that your friendship with each other is very important to you. Do you meet or communicate with any other autistic people? How important is that to you?

Emma: I do have other nonspeaking autistic friends. It is easier with them. We understand each other. I get on people’s nerves with my noise and stims. My nonspeaking friends are very generous with me. I am very fortunate to have community. I think what we have is quite unique.

Ben: EMMA WAS MY FIRST FRIEND. WE MET WHEN I WAS FIVE YEARS OLD. OUR FAMILIES SPENT A LOT OF TIME TOGETHER. WE STARTED LEARNING THE LETTER BOARD AT THE SAME TIME. SO WE WERE ABLE TO COMMUNICATE BOTH WITH EACH OTHER AND ABOUT EACH OTHER. I HAVE OTHER FRIENDS WITH AUTISM WHO I COMMUNICATE WITH. MY FRIEND ALEX AND I GET TOGETHER ON ZOOM EVERY WEEK TO DISCUSS CURRENT EVENTS. I LIKE TALKING WITH OTHERS BUT THEY HAVE TO LET ME USE THE LETTER BOARD AND SPELLING IS SLOW SO GROUP CONVERSATIONS CAN BE HARD. WE HAVE GROUP DISCUSSIONS WITH OTHER LETTER BOARD USERS THAT ARE FUN.

When did you start using assistive technology to communicate? What difference did that make to you?

Emma: I started using the Dynavox when I was in elementary school after a long fight with the school district. They found me to be incompetent and uneducable. I also thought they were stupid. They found it incomprehensible that I could spell. It was exhausting to have to prove yourself and eventually I dropped out of school. They were wasting my time. Communication is critical and I was denied access for too long.

Ben: I STARTED WITH AAC DEVICES IN ELEMENTARY SCHOOL BUT IT WAS MOSTLY PICTURES. MY MOM ASKED THEM TO HELP ME TRANSITION TO POINT TO WORDS BUT THEY DID NOT. THEY DID NOT BELIEVE I COULD READ SO THEY COULD NOT BELIEVE I COULD SPELL EITHER. IT IS EASIER FOR ME TO POINT THAN TO WRITE. IT IS EASIER FOR ME TO LISTEN THAN TO READ. THE ABILITY TO RESPOND TO AUDITORY QUESTIONS WAS A GAME CHANGER FOR ME.

Ben mentioned in the film that before you were allowed to have education in a way that is accessible to you, your civil rights were being denied. Could you say a bit more about what you mean by that? What civil rights would you like autistic people to have that they do not have already?

Ben: EDUCATION IS A CIVIL RIGHT. ALL CHILDREN HAVE A RIGHT TO FREE APPROPRIATE AND ACCESSIBLE EDUCATION WITHOUT EXCEPTION. I WAS DENIED ACCESS TO THE GENERAL EDUCATION CURRICULUM BECAUSE I WAS NONSPEAKING AND UNABLE TO DEMONSTRATE COMPETENCE. I WAS DENIED ACCESS TO SIGN LANGUAGE BECAUSE I WAS NOT DEAF. AND WHEN I LEARNED TO SPELL TO COMMUNICATE MY WORDS WERE DISMISSED AS BEING THE WORDS OF OTHERS.

How well do you think politicians in the USA understand autistic people?

Emma: Not very well but that is changing. We have met many of our local legislators and they hear our stories. We plan on continuing our advocacy.

Ben: I THINK AWARENESS OF AUTISM IS GROWING. I THINK IT IS IMPORTANT TO PRESENT THE SPECTRUM OF AUTISTIC INDIVIDUALS. AND NON-SPEAKING AUTISTICS ARE UNDER-REPRESENTED ON ALL ACCOUNTS.

If you could make one new law in the USA, what would it be?

Emma: The American with Disabilities Act already allows for the letterboard. Now we need enforcement.

Ben: WE DON’T NEED NEW LAWS. WE NEED STRONGER ENFORCEMENT OF EXISTING LAWS LIKE ADA AND IDEA.

What do you think about the people who want to cure autistic people rather than accept us as we are?

Emma: Certainly, I have needed help managing some interfering behaviors and learning how to mitigate some of the noise I inexplicably make, but a cure??? I just need a kinder world.

Ben: I THINK THEY ARE SELF-CENTERED AND THOUGHTLESS INDIVIDUALS. WE ARE NOT BROKEN. WE ARE DIFFERENT.

Some people don’t believe that non-speaking autistic people can genuinely communicate in the way that you do, and that your carers are guiding you to touch particular letters. What is your response to this?

Emma: For starters, can you imagine how exhausting this is? My life is difficult enough without this constant pressure to demonstrate that my life has value. That I have a voice and the right to be heard. How dare anyone accuse us and our communication partners of fraud? It is impossible for some people to see our potential. We hope that this film continues to spark conversation and opens minds.

Ben: OF COURSE IT IS MORE CONVENIENT TO DISMISS MY WORDS INSTEAD OF PRESUME MY COMPETENCE. IT REQUIRES YOU TO SUSPEND YOUR DISBELIEF AND DISCARD PRECONCEIVED NOTIONS OF ABILITY AND DISABILITY. I HAVE BDEN LISTENING MY WHOLE LIFE AND HAVE ONE OR TWO THOUGHTS IN MY HEAD. AT THE SAME TIME I DON’T FEEL I HAVE ANYTHING TO PROVE.