Open letter to ASHA from Emma Budway & Benjamin McGann

Emma: My name is Emma Budway,

Ben: and I am Benjamin McGann and we both use spelling to communicate.

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Ben & Emma at the ASAN 2016 Gala. where they received the award for Self Advocates of the Year 

Emma: The majority of my and Benjamin’s childhood was spent in countless therapies and special education.

Ben: Each claiming to get through to the autistic child and teach him or her to be normal, or at least their version of normal.

Emma: The problem with that is we are not their version of normal. We do not move, communicate, or learn in conventional or traditional ways. Yet, we are tested and measured in conventional and traditional ways.

Ben: Those tests show results that do not accurately reflect our true intellect or ability to take in and comprehend information. They do reflect, however, the disconnect between brain and body.

Emma: That is where spelling to communicate benefits nonspeaking autistics. It’s not someone simply picking up a letter board and words magically come out,

Ben: It involves rigorous training for the communication partner, and weeks to months and sometimes even years of practice and dedication for the autistic and their family to be able to get to open communication.

Emma: Now that we can, we can tell our families we love them.

Ben: We can tell doctors what hurts.

Emma: We can teach the Neurotypical world about the Neurodiverse.

Ben: If that is taken away, a generation of bright minds will be silenced once again.

Ben

Ben & Emma have been friends since preschool, now they have a way to communicate with each other.

Sincerely,

Benjamin McGann and Emma Budway

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Autism Acceptance Month – Huan on Autism Self Advocacy

April has been established as Autism Awareness Month.  Like many, we at Growing Kids Therapy Center, feel that a better practice is Autism Acceptance Month.  To celebrate Autism Acceptance month, I will be featuring the voices of our clients who Spell to Communicate. These are the only autism experts I consult these days!  Their words are powerful and deserve to be heard!  Huan, 18 years old, spelling on the letterboards for almost 2 years, starts us out!

Huan

Huan

Huan, April is around the corner and is known as Autism Awareness month or as I prefer to think of it, Autism Acceptance month.  What are your thoughts about the difference between these two terms?

WHO IS NOT AWARE OF AUTISM AT THIS POINT?  PERHAPS A BETTER QUESTION IS WHO IS ACCURATELY INFORMED ABOUT AUTISM?  I GET THAT PEOPLE CARE AND ARE TRYING TO HELP.  I AM NOT KNOCKING ANY INDIVIDUALS BUT MANY OF THE GROUPS THAT SEEK A CURE SEEM NOT TO UNDERSTAND THAT IN THEIR MESSAGES OF FEAR THEY ARE SAYING THAT I AM SOMETHING THAT NEEDS TO BE CHANGED TO BE ACCEPTABLE. HOW CAN THIS BE ANYTHING OTHER THAN AN INSULT?  SO, THANKS FOR BEING AWARE OF ME!  NOW HOW ABOUT ACCEPTING ME OR EVEN EMBRACING ME?

*For this lesson, I read this article from the Washington Post about Ari Ne’eman, co-founder of the Autism Self Advocacy Network. Huan is a very fluent and we are currently working on his analysis and synthesis skills. So, I simply present the information to Huan and he summarizes the key points and provides his own reflections to the material.  (*Note: Huan’s responses are in all capitals; my comments or questions are in regular type).

ARI SOUNDS LIKE HE HAS READ MY MIND!  HE WAS DIAGNOSED MUCH OLDER THAN I WAS BUT WE HAVE HAD THE SAME EXPERIENCES WHEN REALIZING THE NEGATIVE VIEWS OF AUTISM AND THEREFORE US.  WE DO NEED TO SEEK THE COMPANY OF OTHER AUTISTICS.  I WOULD VERY MUCH LIKE TO LEARN MORE ABOUT ASAN.

ASAN SOUNDS INCREDIBLE!  I TOTALLY AGREE THAT AUTISTICS SHOULD HAVE A VOICE ABOUT AUTISM.  WE SHOULD USE OUR COLLECTIVE VOICES TO SPEAK AS A COMMUNITY.  RIGHTS NOT CURES SHOULD BE THE FOCUS.

FITTING SOMEONES’ DEFINITION OF NORMAL IS WAY TOO MUCH EFFORT FOR TOO LITTLE GAIN.  I DON’T WANT TO WASTE MY ENERGY ON THAT ANYMORE.  I DO REALIZE THAT I LIVE IN THE TYPICAL WORLD BUT FEEL MOST AT HOME WITH THOSE WHO EMBRACE ALL OF ME.  SO HAPPY TO HAVE THIS AT HOME, WITH MY FRIENDS AND WITH YOU AND MEGHANN!  FINDING A PLACE TO BELONG IN THIS WORLD IS A CHALLENGE BUT IT HELPS TO KNOW I HAVE PEOPLE WHO LOVE AND ACCEPT ME!

Huan is a leader in the autism community and an advocate for those who still do not have a voice. Happy Autism Acceptance Month!  Follow us all month as our autism experts share their views on autism, advocacy, inclusion and acceptance!

~Elizabeth & Huan