My Oxymoronic Brother: an Autism Activist

April is Autism Awareness Month (it's also Sjogren's Syndrome Awareness Month - leave it to my family to overlap).  I call my brother the Walking Oxymoron - he's an activist for Autism.  Think about that...he's a spokesperson, a mouthpiece, an advocate, a health activist, for Autism, a condition which calls to mind images of non-verbal children trapped in their own world, unable to communicate with those around them.  My family is nothing if not contrary, and my brother fits right in.  My firm is observing Autism Awareness Month in a few ways, beginning with a special MSO offering titled "Autism - Transition to Adulthood".  In their announcement today of this program, they asked anyone with a related story to send it in so they can share them through the month.  I began to write an email just briefly outlining my brother's story, and found myself writing what must be one of my most emotional blog posts.  I don't know if or what exactly I may still send in at work, but this story - not just of my brother's success so far, but of my family who was and is here through it all - belongs here.  So this is not a guest post, but perhaps, a guest topic.  For Autism Awareness Month and for my brother, I share this story.

My brother has Asperger's Syndrome.  He presented with symptoms when he was 2 or 3 years old, and over the years he's had many misdiagnoses (such as ADD).  Fortunately, the therapies he went through were the right ones regardless of diagnosis – he went into a therapeutic preschool and was mainstreamed into the public elementary school by 4^th grade.  He had an aide with him through high school.  Obviously things were rocky – my parents had to be his advocates before the word 'advocate' came into popular use – but there was always progress.  This May he will graduate from St. Joseph's University, and is actually pursuing a more creative field than many "Aspies" (film-related fields), who generally gravitate toward left-brained jobs. 

St. Joseph's hosts a program, the Kinney Center, which is designed to provide support and resources to families with children on the Autistic spectrum as well as improving awareness.  They have a summer day camp program, which brings together kids on the spectrum with neurotypical children, so the Autistic kids are exposed to social skills and the neurotypicals learn about Autism and accept Autistic kids as their peers, removing the stigma.  My brother was selected as a counselor for the program's first year and was interviewed on the news for his role.  Additionally, the program provides various after school and evening programs during the school year to work on socialization, and my brother has been hired to teach various courses.  He is currently leading a group of high school aged students, as they prepare to make the transition he has so successfully navigated.  He is also interning with NBC in their health and wellness area, and has been interviewed on air again, for his response to the effects the show "Parenthood" is having for awareness and understanding of Asperger's children.  It's true he is anxious about making his next transition into the professional world, but the opportunities he created for himself in the past year have gone a long way toward easing the process.  He is a success story in a way no one imagined could be possible. 

He's my little brother, and I remember when he was non-verbal, biting and scratching, hating to be held.  My family will always remember moments when society was not understanding – we've been thrown out of more McDonalds than the Hamburglar – but we'll also always remember moments such as the first time he ever said "I love you Mom," at a talent show/popularity contest our high school hosted after his outstanding performance.  He recently joined me in my own awareness efforts (for 'invisible illnesses') to do a panel presentation for nursing students at Villanova University (my alma mater), and in answer to a student's question he said "she's my sister and I love her" – another first.  I thought my parents in the back of the room were going to pass out from shock.  Sometimes I wonder what he had which allowed him to make such progress that others didn't, I suppose it must be the intense support of my parents, but I also think about the battle he fought against stigma and lack of awareness that are slowly diminishing for kids these days.  And I'm watching him take an active roll in this progress, such as his work with students in high school, and I'm amazed by this person I never knew was hiding inside my baby brother.

He spent most of his life comparing his accomplishments to mine; I hope he knows now why that never mattered.  We are so much alike for all our differences…I hope the world is ready for usJ