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‘Silencing Ourselves: A Plea for Civility in the ASD Community’ – A Sister’s Response

February 3, 2012 37 comments

This is a guest blog post by Ali Dyer, the Social Media Coordinator at Autism Speaks. Her older brother Jeff has autism.

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 editors@autismspeaks.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.

In Their Own Words – Seeking a Connection

August 17, 2011 28 comments

This is a guest blog post by Ali Dyer, the Social Media Coordinator at Autism Speaks. Her older brother Jeff has autism. 

As I read  a diary of a mom’sa pink sock sorry,’ I immediately fell back to my younger self trying to connect with my older brother Jeff. I understood what it was like expending endless amounts of energy just to have my brother see me. It seemed back then he just never did. Like my friend Katie, I just wanted to love my sibling.

For years, we worked to have Jeff let us in and for years he wasn’t ready. He used to watch the television with his face practically touching the screen. From the moment I could stand, I would try and wedge myself between him and his object of interest, always to be knocked over. My oldest brother Tom and I never stopped loving him – we actually became more fierce and protective.

My mother is a very talented photographer and so much of our life is captured on film. The photos over the years show us clinging to Jeff. He is either staring off into the distance or running away. I think they are beautiful. They are honest. That is how it was.

Eventually, he came around. Now he can’t get enough of us! But there are times when we go back to the old days, and I have to respect his need for space. He knows that I love him and I’ll be waiting when he is ready.

The photos look more like this now.

Jeff is twenty-six, which comes with a whole new set of challenges. We made it over the hump of him transitioning into a group home. It is more than a year later and we are still making adjustments. To be honest, I don’t know that we ever will fully adjust. Despite that, we will try and keep moving ahead giving Jeff the most productive and full life possible.

I know as time wears on Jeff will need me, but in truth, I will need him so much more.

“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 editors@autismspeaks.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.

A Sister Reflects on World Autism Awareness Month

April 28, 2011 26 comments

This is a guest blog post by Ali Dyer, the Social Media Coordinator at Autism Speaks. Her older brother Jeff has autism. 

April 2011, World Autism Awareness Month, has been one of the most memorable times in my life. The last few weeks I have taken part in some unbelievable ‘Light It Up Blue‘ events, met amazing people, and connected with the worldwide community to commemorate World Autism Awareness Month. April was comprised of so many moving parts that came together seamlessly, due to the hard work of so many.

I have been meaning to write a blog post, but I keep hitting walls.

Sure, I drafted a post of my experiences on April 1 and 2, detailing some of my stops: The Today Show with Alpha Xi Delta; WPIX 11 with the incredible students from Pelham; The New York Stock Exchange with our Co-Founders Mr. and Mrs. Wright, state dignitaries, politicians, celebrities and many more prominent people in the autism community. I could write about the reception hosted by ‘Light It Up Blue Rockland,’ in my hometown, when my brother and his housemates were in attendance. I was so proud. Or, the press conference at the Intrepid, which took place on a beautiful Saturday morning.

Throughout this campaign, I communicated with literally thousands of people all over the world. I feel blessed and privileged to have heard their stories and seen their photos. While I worry that I will never be able to formulate the right words to give World Autism Awareness Month justice it deserves, here are some photos that will speak for me:

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I can’t forget to include the panel discussion, ‘Solving the Autism Public Health Puzzle: Regional and International Collaboration,’ held at the United Nations, or ‘A Blue Affair’ hosted by Donald Trump Jr. and his wife, Vanessa.

We should also revisit the push to ‘Light The White House Blue.’ I am in awe of each person who submitted a blog entry. More than 1,000 comments were posted and much of the autism community was unified for a common goal.

On April 25, my dear friend Jess, who so bravely and unselfishly shares her beautiful family with us on A Diary of a Mom, was invited to The White House for an event to commemorate Autism Awareness Month. The morning before she headed over to 1600 Pennsylvania Avenue, Jess told me that she would be taking my brother Jeff with her. My heart was full. I couldn’t think of anyone better to represent him. She gives all of those affected by autism the utmost respect and genuine compassion. I will never be able to thank her enough.

However, alongside all of these spectacular and unique moments, the most memorable for me happened on probably the most mundane of all days.

On April 3, once we all were coming down off the Light It Up Blue ‘high,’ my brother came home from his residential house, and I snapped back to reality. We took a walk, as we have done countless times before. My mom, brother, and I have been taking Sunday walks for years, making it almost an institution. We go to different locations, but often find ourselves on the wooded path at the Pearl River Middle School, as we did that day. We are shielded by the trees and find comfort in the trail’s predictable twists and turns.

Before we begin, Jeff’s anxiety kicks in and he asks for a rundown of dates, “Yes, Jeff, next weekend you can order two DVDs off Amazon, in June 2011 we will go to Montauk for a week, in 2014 we will remodel the kitchen …” and so it goes. Then, we are swallowed by the woods, where Jeffery will usually stroll a few steps behind making his noises. My mom and I will smile and greet friendly strangers; some give us knowing and warm looks, while others sort of stare.

As we round the first bend, which borders a putting green at the local golf course, we remind Jeff to quiet down. As per usual, he gets louder, and we laugh. Next, there is a downturn that Jeff always heads down gingerly. He approaches this dip with the caution he exhibits in some everyday activities. If there are any disruptions along the way (fallen tree, broken bridge, mud puddles, etc.), Jeff always takes note – I am positive he remembers every element of the trail from the first day he stepped foot there, over twenty years ago.

We plod along, stopping from time to time to chat about dates. He’ll hold our hands, then jog ahead, or maybe he’ll stop to give us a hug. My mom and I don’t mind – as a matter of fact, we’d have it no other way.

The last leg has a steep uphill that my mom and I sort of dread. Each time, Jeff manages to surge, making it to the top with a smile. He takes on the hill with gusto and courage. This trail reminds me of the journey my family is on. There are times we are slow and anxious, while other times we coast through and laugh. We have down-slopes and upturns, but Jeff always keeps our pace and establishes a rhythm. It may have taken him a little longer through the years, but he has become our fearless leader. Jeff holds us up with his unconditional love and directs us with his strength.

My brother, like the countless members of our community, is brave.

World Autism Awareness Month 2011 has given me a greater sense of community. Together, we will make the world a safer and more welcoming place for my brother, and all of those with autism spectrum disorders. I have a renewed hope, and will be forever changed.

I would like to send a big thank you to each and every person in the autism community.

Me and Jeff on the trail - photo by Carol Dyer





In Their Own Words – Holiday Card Lore

December 2, 2010 30 comments

This “In Their Own Words” is by Ali Dyer, the Social Media Coordinator at Autism Speaks. Her older brother Jeff has autism.

Tis the season of holiday cards! For the past 28 years, our family has sent a photo to our patchwork of family and friends. We are not that family that sends a long newsletter with updates of the fabulous year we had, nor are we the ones that send a generic holiday greeting. We send a photo, of the whole gang, mostly shot with a self-timer.

You should know that before my phenomenal photographer of a mother decided to move out of the dark ages and into the world of digital photography, we were reliant on film. After one of our staged photo shoots, we would run to the one-hour-photo and hope that there would be at least one photo we could send. If not, we were back at it!

My brother Jeff, who was diagnosed with autism 23 years ago, isn’t always the most photogenic guy and it is a challenge to get his handsome face to look at the camera natural and at ease. The rest of us have to hang tough, smiling away with hopes that Jeff looks good in one, often making the sacrifice to look our best.

Rather than blame Jeff for unflattering photos of myself through the years, I defer to my mother. She loves everything about the holidays. ‘Christmas Carol’ is her moniker and with reason! Once her ‘Christmas iPod’ surfaces, I know that our home will be transformed into the North Pole in no time! She will be decked out in her holiday jewels and sweaters, cranking out thousands of cookies for her adoring fans. Her wackiness really brings us all so much joy during the season.

We keep it with us through the year because every holiday card is featured down our staircase. We are constantly reminded of bad haircuts, braces, wild fashion statements, and terrible concepts. To tell the truth though, I can’t help but smile and laugh as I look at them.

I am thankful that these shoots have left behind an entire archive of unused photos. Our cards have popped up everywhere – schools, restaurants, newspapers, you name it, and it’s been there! Here are some “misfit” photos (a little Rudolph humor, get it!).

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This year, you should know that our card is extra special. In the beginning of June, our family transitioned to a new phase. Jeffery, at the age 25, moved into a group home. It has been a wonderful experience, but needless to say difficult and trying. After two weeks of Jeff getting settled, we took a family vacation to our beloved Montauk, where our photo was taken.

Montauk has always been a safe haven for us. Hopping on a plane was never an option, but piling in the car and heading to the tip of Long Island was. Jeff always had the run of the place and we could enjoy our relatively private beach without the glare of strangers. This year was so special because the five of us were back sleeping under the same roof. Jeff didn’t miss a beat making the transition from his new home. He seemed older to me; making his bed, cruising to the beach for an impromptu bonfire, even napping!

On this particular day, we were surrounded with friends. We hit the beach earlier with a whole group of loved ones. Of course it wasn’t all relaxation – we all took turns making trips to the ocean to fill Jeff’s buckets, which he would dump out moments later. Eventually, we made our way back to the house to make a huge feast. Eat, drink, and be merry!

As light flooded through the dining room and the sky began to change, we knew we had to start moving to show our guests the gorgeous Montauk Lighthouse sunset, the spot of many Christmas cards.

We got to the Light House and hit the ground running; skipping rocks, climbing the jetty, and hamming it up for the camera! I was in heaven. All of us were together again, sharing our favorite place with our favorite people. Jeff was beaming with a smile on his face, ear to ear.

For that night autism didn’t matter. The months of sadness and stress were a thing of the past. Our family was able to make it through, in one piece, stronger than ever. Jeff is in a wonderful place and he showed us that night, that we aren’t a thing of the past to him. He will always love us and come home to us, even with his newfound independence. As a family, we laughed and loved. This year we had scores of photos to choose from, taken by our friends, on that amazing night.

Pictures say a thousand words, and I think it is important for the folks who receive our card this year to have the back story. Every year our card comes from a place of love, but this year, it may have a little more.

So from our home to yours – eat, drink, be merry, and have a wonderful holiday!

“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 editors@autismspeaks.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.

“A Regular Guy: Growing Up With Autism” – An Adult with Autism’s Take

August 5, 2010 1 comment

Two Autism Speaks employees, Ali Dyer and Kerry Magro, recently read Laura Shumaker’s book, “A Regular Guy: Growing up with Autism.” Each wrote a response to the book, unique to his/her relationship with autism. Ali has an adult brother with autism; Kerry, an adult with autism, is a rising senior at Seton Hall University, majoring in Sports Management. Below is Kerry’s response to the book.

This week I had the pleasure of reading Laura Shumaker’s book “A Regular Guy: Growing Up with Autism.” The book gives her perspective about her son Matthew’s journey from early childhood into adulthood with autism.

Before going into the book, I just wanted to say I admire what Laura has been doing to help families with children on the spectrum. I first learned about Laura’s book after she commented about one of my earlier blogs about the Autism Speaks 400 race. It was really great to see that all of this was able to come together.

The best way to describe the book would be a rollercoaster of good times and “learning” times for The Shumaker family. The one main thing that is clear, though, is the loving bond of a mother and family doing everything they can to make sure their son grows up to be okay. Whether it is early on where she is desperately looking for that special “Miracle Cure” or when Matthew gets older and it’s more about accepting him as who he is. This book gives you the whole insight to a mother’s struggle everyday with a child with autism.

Many parents look for answers and Laura’s book is sure to connect with parents with children on the spectrum as it goes through different diagnoses of ASD, school placement, family life, money complications, stress levels, babysitting options, and unforeseen struggles that come often come out of nowhere.

Being diagnosed with autism, I gained a great respect for different individuals with ASD from reading this book. As a young adult on the spectrum it makes me want to learn more about how my early childhood compares to Matthew’s.  It also made me continue to understand that no one diagnosis is the same. Every diagnosis has a different rarity from individual to individual. There are thousands of treatments, yet not one cure.

What we can take from this book in the end, however, is that no one is alone and there is always someone to be there for you – whether it is Autism Speaks’ Family Services, an autism helpline, or even a brilliant author like Laura. Growing up with autism should be an experience of understanding and learning.

(And hey, no one is really “regular” anyway, right?)

Did you read Ali’s post yesterday? If you missed it, you can check it out here.


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“A Regular Guy: Growing Up With Autism” – A Sister’s Take

August 4, 2010 20 comments

Two Autism Speaks employees, Ali Dyer and Kerry Magro, recently read Laura Shumaker’s book, “A Regular Guy: Growing up with Autism.” Each wrote a response to the book, unique to his/her relationship with autism. Ali has an adult brother with autism; Kerry is an adult with autism. Below is Ali’s response to the book – stay tuned for Kerry’s blog post tomorrow.

Ali and her brother, Jeff

When I was approached to read “A Regular Guy: Growing Up With Autism” and write a blog post from a sibling’s perspective, I was game. Shumaker shares her “family’s story of love and acceptance” in raising her son Matthew. I thought about the last book I read based on this subject. It was a children’s book and I was probably seven. My family always joked that we should write a book about our journey, and pick from the arsenal of stories from over the years. Oh well, I figured; let’s get reading.

I couldn’t put the book down. I got it. I found myself scribbling in the margins, highlighting and starring paragraphs and phrases, while I flipped through the tear-stained pages. My big brother Jeff is 25 years old and has been the focal point of my family’s life. He is inspiring to me and I adore him. Laura Shumaker’s honest portrayal of her life with autism resonates so much with my own.

She breaks up her story into three sections: “Beginnings,” “Navigating Childhood” and the “Road to the Future.” When Shumaker recalls her bout in finding some sort of diagnosis, I see my parents. After jumping from specialist to specialist, all weighing in with different viewpoints and recommendations, a young doctor wearing acid-wash jeans confidently diagnosed autism; as if it was a no-brainer. Having no idea, in 1987, what autism was, and nervous about the unknown life that lay ahead, my parents marched on. They vowed to do everything in their power to give our family the best life possible. As a courtesy to them, I don’t wear acid-wash.

I respect Laura Shumaker for sharing both good and bad experiences of her other two sons. I too, have experienced painful comments and taunts about my brother, even to this day. Just recently, in an upscale Hamptons restaurant I fielded remarks from two grown women in the ladies room. It hurts as much today as it did during recess in middle school. I can share with her two sons the conflicted emotions of having a brother with autism. Always, though my love, respect, and admiration win out for Jeff. I have another “normal” brother, and we have an understanding of one another and I will be forever thankful to have someone to share this with.

Shumaker also tells some embarrassing experiences that you just can’t help but laugh about. Matthew was honest – painfully honest. She tells a story, which was featured on the Autism Speaks Blog, about bringing in a babysitter who also happened to be overweight. Matthew couldn’t drop it, and so that story goes. My brother Jeff is always good for pointing out if you need to dye you hair to cover your roots, as well as unsightly scars, and wrinkles. He has expressed his desire for me to get Botox at the ripe age of 23. How rude.

Daily activities, for a family with autism, can be a great and strenuous adventure. While recalling a trip to church for a Family Worship Sunday, they had a share of surprises; I can’t help but laugh and remember. Our family never dared bringing Jeff to church unless we were prepared with the essentials – a pad and paper or his trusty Magnadoodle. Our lovely church always had a candlelight vigil the night of Christmas Eve. We always strategically planned to sit in a pew near the firefighters in case we had an “issue.” On one particular Christmas Eve, we had run out of paper (rookie mistake) and Jeff began to connect the dots on the polka-dot dress of a woman in front of us. She took it well. ‘Tis the season to be jolly, I guess!

Recently, our family moved Jeffery into a group home. My parents had prepared for awhile, but we just kept procrastinating. It seemed that the move-in date really snuck up on us. The agency Jeff has been with his entire life set up the most beautiful home. They really didn’t miss a trick and we will be eternally grateful. It is literally five minutes from our house, but we felt that it may as well be in Egypt.

Almost 20 years ago, we found three other families in our same boat. We call ourselves “The Lucky Ones,” and it is really true. How lucky we are, to have found an instant support group, that we can weather the storm together. Through the years, we have laughed and cried, and met many angels along the way that made life a little brighter, in times of darkness. I don’t know how we would have made it through without each other. On moving day, the men who have autism, who we will forever refer to as “the boys,” followed each other around like little ducklings. As hard as it was, leaving their home, we knew it was the best thing for everyone. Jeff has been there for about a month and is thriving.

When speaking of her two other sons, she says they, “came together in laughter and in sorrow, and they were left feeling the weight of their family’s bittersweet burden.” My brother Tom and I recently took Jeff out to dinner while my parents were away, and I couldn’t help but get emotional. I was thinking about our future together. How could I ever really move far away? Will we be able to hold everything together, as my parents have all these years? Shumaker put my own emotions so eloquently. The future will always be unsure, but I don’t for a second think Jeff is a burden. He is the purest and greatest blessing in my life. My brother made me who I am.

“A Regular Guy: Growing Up With Autism” sent me in a time machine, one that I would travel through again and again. I would like to thank Laura Shumaker for her honesty and for sharing her family with the world.

To check out Kerry Magro’s post on “A Regular Guy : Growing Up With Autism” read here.

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