Last night I stumbled across a blog post that struck a chord by Leigh Merryday who writes a blog called ‘Flappiness Is….’ The post was titled ‘Silencing Ourselves- A Plea for Civility in the ASD Community,’ and I was moved and could relate entirely with the lens in which she viewed the autism community.
I am not always politically correct. I say autistic. For years I would have to correct people when they would say, “Oh yes, artistic, he is good at art.” I make the conscious effort to say, “My brother Jeff has autism,” but sometimes I forget. Guilty.
Of course autism doesn’t define my brother. If anything, Jeffery can be defined by his big heart, beautiful soul, and giving spirit. Saying he is autistic could never take that away from him, I mean no disrespect, to him, or anyone else on the spectrum.
Leigh says, “Parents feeling sadness and worry are encouraged to deny there is any grief associated with it whatsoever.” Guess what? Siblings also can feel a great sadness and worry. Am I at times sad that Jeff has autism? Yes, but not for my own sake, for his. Jeff has challenges that are unfair and it makes me sad that his life has to be more difficult than most. It is sad to me that he can’t go out without being stared at; or that he can’t carry on a typical conversation, struggling to have his voice heard.
Do I worry about him? Hell yes. When Jeff moved into his group home, a wonderful and difficult experience for our family, I was overcome with such anxiety because I was so unsure of how it would turn out. I worry what will happen when my parents are no longer around. Can my oldest brother Tommy and I be there for him in the way that he needs? I can’t be sure, but I know that we’ll try our best.
When I was young and a believer in Santa Claus, I asked for Jeff to speak. To this day, I would give anything to have Jeff ‘cured.’ Should I, and others that feel the same be attacked for that? I would never judge anyone for their stance on the topic.What do we accomplish by going at each other on this issue? As Leigh points out, “by jumping on people for their thoughts and decisions about raising their autistic kids, all we are doing is silencing them.”
I am thankful and inspired by the neurodiversity movement. I think that self-advocates have made incredible strides to raise awareness and speak for those who can’t. I have made connections and friendships with many of these folks who work hard for the greater good of the autism community.
Jeff was diagnosed in 1987. My parents were scared and overwhelmed. Autism? What’s that? When we found other families who had sons with autism, we clung, and held on for dear life. These friends soon became family.
We didn’t have the internet back then, and sometimes we think it may have been a good thing. We had to stick together and hope for the best, working towards the goal of giving my brother the most productive and enriched life we could. Today, there are ‘support’ forums and communities all over the internet. Often times, these are breeding grounds for knock down, drag out fights. People can hide behind these online personas and say whatever they want, while others are able to make connections and that become lifelines. Amazing friendships and bonds exist – I wish there was more of that. It is a blessing and a curse.
Until coming to work at Autism Speaks, I had no clue of the different segments in the autism community. I was absolutely shocked by it. Clearly we were just living in our own ‘autism bubble,’ but I don’t think it was the worst thing. Why can’t we just support and respect each other?
In fact, I never in a million years thought that I would be working at Autism Speaks. I thought that the only way to work in the field of autism was to be a teacher, therapist, or scientist. I wasn’t anti-Autism Speaks, but at the time of inception, the mission was geared to diagnosis and early interventions. We had been there and done that!
But joining Autism Speaks has been an incredible blessing. I am thrilled by the way the organization has evolved and where it is looking to go. The development of the Transition Tool Kit and Housing and Residential Supports Tool Kit are wonderful and that is only the beginning! I am also incredibly lucky to work side by side with people that really want to make life better for ALL people affected by autism. My coworkers have supported me, and in turn my family in ways I never could have imagined.
This past Fall my family along with the other families in Jeff’s group home, participated in a local Walk Now for Autism Speaks. It was with Jeff’s lead that we signed up and I have never been so proud to walk next to someone in all my life.
So there it is. Laid out for all to see. I hope that the autism community can come together for good and respect each other as time goes forth.
In the meantime, I will continue to walk side-by-side with Jeff never losing sight of the past and all that we’ve been through. But I will look optimistically to the future, because Jeff makes all of those who know him better people. He will surely leave this world a much brighter place, for the truth is, he already has.
Click here to download the Sibling Support Tool Kit. This tool kit is for children who have a brother or sister diagnosed with autism. Though the guide has been designed for children ages 6-12, the information can be adapted as needed to other age and education levels. The guide is written in an interactive format so parents and siblings can set aside some quiet time to read the guide together. The intention is to create an opportunity for siblings to focus on their feelings, reactions to their sibling’s diagnosis and get information about autism.
“In Their Own Words” is a series within the Autism Speaks blog which shares the voices of people who have autism, as well as their loved ones. If you have a story you wish to share about your personal experience with autism, please send it to firstname.lastname@example.org. Autism Speaks reserves the right to edit contributions for space, style and content. Because of the volume of submissions, not all can be published on the site.
Autism Speaks Co-Founders Honored with 2011 Leadership Award by Citizens United for Research in Epilepsy (CURE)
Citizens United for Research in Epilepsy (CURE) paid tribute last evening to Autism Speaks Co-founders, Suzanne and Bob Wright, with the 2011 Leadership Award at a gala benefit in New York City. The Wrights were honored for their ongoing work with autism. Right now, up to 30% of children with autism also have epilepsy.
CURE Founder and Chair Susan Axelrod and her husband, David Axelrod, reported on CURE’s research progress and urged support for cutting-edge epilepsy research to make a future without epilepsy a reality.
During the event, Bob Wright announced a new partnership with CURE; a high-level autism and epilepsy research conference with the National Institute of Neurological Disorders & Stroke at the National Institutes of Health (NIH). The collaboration between CURE, Autism Speaks, and the NIH will take place in spring 2012, and will be critical in developing joint research priorities to pave the way for breakthroughs and cures. “Through this partnership with Autism Speaks, CURE believes we will begin to expedite research to benefit both causes,” Axelrod commented.
“We want to extend our deepest gratitude to Susan and the Citizens United for Research in Epilepsy for honoring us,” said Bob Wright. “There are many commonalities between epilepsy and autism and neither have received the funding they merit based on their high prevalence. We are confident this partnership will help provide answers.”
George Stephanopoulos and Alexandra Wentworth returned as co-hosts of the benefit and special guest Peter Sagal, host of NPR’s “Wait Wait… Don’t Tell Me” was the featured CURE auctioneer.
Also receiving awards were Joe Scarborough and Mika Brzezinski of MSNBC’s “Morning Joe” were honored with the Excellence in Journalism Award for raising awareness of the challenges in finding a cure for epilepsy. Dr. Shlomo Shinnar, MD, PhD, Professor of Neurology and Pediatrics at Montefiore Medical Centerand the Albert Einstein College of Medicine, received the CURE Leadership in Epilepsy Research Award.
Since its inception in 1998, CURE has funded 116 research grants at 71 institutions across 28 states and 9 countries. The benefit raised over $700,000 for epilepsy research.