Home > Awareness, Light It Up Blue > A Sister Reflects on World Autism Awareness Month

A Sister Reflects on World Autism Awareness Month

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





  1. April 28, 2011 at 9:06 am

    You, your brother, your family you are all brave…..thank you for your work at Autism Speaks and thank you for sharing this moving story…

  2. CaroL Dyer
    April 28, 2011 at 10:11 am

    Your words are as beautiful as you are. That PRMS trail certainly holds a lot of memories for us through all the seasons and all of the years. Jeff is so lucky to have you for his sister. You are the best and you are right where you should be!!
    Lovexoxo, Mom

    • jess
      April 30, 2011 at 11:08 am

      god, i love you guys. group hug? anyone?

  3. Bob Munigle
    April 28, 2011 at 2:07 pm

    So well done. You express yourself so well. Beautiful, just beautiful. By the way, I’ve worn blue every day this month. And I’ve been sure to tell everyone why.
    Love ya,
    Bubba

  4. Marisa Indrieri-Mercatante
    April 28, 2011 at 2:47 pm

    Beautifully written Ali. I can relate to Jeff’s run down of dates, as my Andrew does that too. He also enjoys going on walks like your family does. Thanks for expressing yourself in such a moving way, it really helps Autism families like mine cope.

  5. Liz Carroll
    April 28, 2011 at 3:21 pm

    I am an IHS alum, during the reign of your parents, and I wanted to thank you for your eloquent words. There is a place in this world for all different kinds. I have no doubt that the world is a friendlier place for your tireless work. I have a blue light outside my home, and have worn blue every day.. I can add Jeff to my list of friends being honored this month! Autism speaks.
    Thank you for sharing your thoughts and experience..
    Liz Bolduc Carroll

  6. Uncle Bob
    April 28, 2011 at 4:36 pm

    A beautiful and touching blog Ali.

  7. Janice Gorbutt
    April 28, 2011 at 4:39 pm

    Ali — what a beautiful tribute to your brother and your family – and beautifully written with so much heart.

  8. Janet Fenton
    April 28, 2011 at 8:44 pm

    What a poignant reflection of a day and it’s place in the life of yourself and your family. You were a remarkable girl turned into a more remarkable woman. I’m proud to have walked a while with you.

  9. Cindy Stauffer
    April 28, 2011 at 8:49 pm

    A very touching blog. Thank you for sharing. I am also an IHS alum. Give my best to your Mom, my favorite p.e. teacher :) She must be very proud of you and your brother. I think I saw my neighbor, Ann Gibbons, in one of your photos – a true champion for Autism awareness. It sounds like you are as well!

  10. LisaLinehan
    April 29, 2011 at 8:53 am

    Ali, That was beautiful. You have really captured how I have always felt about walking the trail. There is something so claming about the sounds, smells, fresh air and peacefulness in those woods. You have an amazing and brave family. Keep up the great work!!!

  11. jeanne donnelly
    April 29, 2011 at 9:00 am

    Such beautiful words from a beautiful person. Thank you for sharing. You are the best!!!

  12. Gena Marra
    April 29, 2011 at 10:53 am

    Ali,

    As I was reading about your walks with Jeff, I could visualize all of you moving along the path. It is so wonderful to hear your stories about you and your loving family.

  13. Tricia Calise
    April 29, 2011 at 12:10 pm

    I read your blog with tears in my eyes. It is people like you that make a difference in this world. I am privileged to have had you as a student. You and your family are blessed.
    Tricia Calise

  14. April 29, 2011 at 1:36 pm

    Great writer, sweet sister, dear friend to all in the autism community. God bless you, ALi!
    Laura

  15. April 29, 2011 at 8:26 pm

    Ali your comments are so heartfelt and poignant i too got tears in my eyes as i read your beautiful tribute. Your brother is blessed to have you by his side step by step as he finds his path on his journey. We are so fortunate to have you with all of us as we continue the fight for a better life for all those living with autism. Your are a true gift and I’m honored to know you!! Dr. Ricki

  16. jess
    April 30, 2011 at 9:17 am

    ali,

    i have no words. and damn it, i always have words.

    i am so grateful to call you my friend. i am in awe of you, your mom, jeff – your beautiful family. i pray for no more for my katie than that she grow up exactly like you. nothing would make this mother happier or prouder.

    you are changing the world, ali and on behalf of my girls i thank you.

    love you dearly

    jess

  17. Susie
    April 30, 2011 at 9:20 am

    Ali you are a beautiful writer – like your brother Jeff, you, too are able to take in all that life with autism is made of. I personally have two boys with ASD and we also have several paths we take daily. Thanks for the humble, open hearted love that just screams from your words regarding your family…you are all a blessing to the autism community.

  18. Autismville
    April 30, 2011 at 9:42 am

    We do family walks too.. :-). Love this post, Ali. Your perspective is as beautiful as it is important.

  19. Ann Gibbons
    April 30, 2011 at 11:20 am

    Beautifully done Ali. Thanks for sharing your eloquent words. My son Philip is now 22 and we “virtually” walk with you every day.

  20. fran maisano orren
    April 30, 2011 at 12:19 pm

    THANK YOU ALI, YOU LIFT OUR HEARTS AND ENERGY IN ALL YOU DO AND PUT FORTH FOR EVERYONE!RESPECTFULLY FOR MY GRANDSON JOHNNY 7, WE ARE TRULY SUPPORTIVE. YOUR A GIVING PERSON AND IT REFLECTS ON ALL OF US IN NEED OF AWARENESS. BLESS YOU AND JEFF AND ALL FAMILIES WHO HONORED AUTISM AWARENESS AND FOR ALL THE FAMILIES WHO LIVE THIS CHALLENGE DAILY AS MY DAUGHTER AND HER FAMILY DO! THANKS AGAIN, BLESS YOU ALL!

  21. Patricia Parsons
    April 30, 2011 at 7:27 pm

    This was truly written from the heart!

  22. May 1, 2011 at 10:49 am

    So beautiful. Thank you! I feel the same way about my son – he is the one who teaches us and keeps us going, as he dances and sings his way through life :)

  23. Carolyn Moffa
    May 5, 2011 at 12:02 pm

    Your comments and refelections were so touching and heartfelt. Thank you for all of your involvement both personally and professionally!

  24. Janice
    May 13, 2011 at 9:31 am

    So proud of you Ali! What a wonderful blog about World Autism Month and also about the Sunday walks with Jeff, Carol/Mom, and you. Love you, Aunt Janice

  1. April 28, 2011 at 5:26 pm

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