April 1, 2011

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 4th 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

3 comments:

  1. Charlotte Wieckowski DorfmanApril 1, 2011 at 1:40 PM

    Aside from being your mother, I would still find your comments touching and so informative. I learn something new everyday about this challenge called Aspergers. Today you have, yet again, brought me to a new realization. I never really thought about it, but you are so correct when you say that the stigma could be fading, due to all of the lifhtr that is now shed on the subject. I think it is true, this probably DOES make a difference for the children growing up now, vs as little as 10 years ago. Knowledge is Power. I am proud of you both as a mother. I congratulate you in particular as a woman, a colleague, and someone I am proud to consider a peer.

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  2. Jennifer,
    I hope the world is ready for you two too! Your brother sounds like an amazing person and a strong advocate, just as you are yourself. I think it's great that he was able to accomplish so much in spite of Asperger's, and that he is trying to make a difference in combatting stigma and helping younger peers. I think you're right that there is a lot more awareness now than there used to be about Autistic spectrum disorders, because I know that I personally knew very little about these disorders until the past few years. Your brother should be very proud of himself, for being part of this important social change.

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  3. Hi Jennifer,

    My 12 year old son also suffers from autism and I too am battling both fibromyalgia like you and bipolar II disorder. It is the unseen illnesses that are the worst, because people think you should be normal and able to do the things everyone else does. I find myself butting heads with people who believe this not only about me but about my son as well.

    We are very lucky that he has a wonderful autism team at his middle school and he has made the honor roll each quarter already this year! He is a smart, smart little guy and I have so much hope for him after reading stories like your brother's!

    Thank you for your website and for sharing your brother's story.

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