This blog post is by Ali Dyer, the Social Marketing Manager at Autism Speaks. Her older brother Jeff has autism.
Laura Shumaker, my dear friend and renowned autism advocate compiled a brilliant list, '25 random things about motherhood, autism-style: An Update,' that my mom found and gushed just how 'spot-on' it was. She sent it around to her friends and I shared it with the Autism Speaks community by posting on our platforms. Needless to say, it was a major hit, and it got us to thinking within our team - how many more lists can we pull together?
Growing up with a sibling on the spectrum is anything but typical - but isn't every growing up experience unique? Each of us looks at life through a different lense; mine just happens to be with an autism filter.
So before I present to you my list about growing up with a sibling on the spectrum, let me offer you one of my favorite quotes,
"To the outside world we all grow old. But not to brothers and sisters. We know each other as we always were. We know each other's hearts… We live outside the touch of time." -Clara Ortega
1. You don't get angry or upset when your autistic brother points out the wrinkles on your face or the fact that your roots are showing and you need to get to a salon stat. If it was your other brother, than there'd be a problem.
2. You may move to a big city and live a 'groovy' lifestyle - rock on! But you will also have to return to your parents' house to snap back to reality. This can be done through taking walks, watching movies, or making giant ice cream sundaes with your brother.
3. You wonder how your mom and dad hold the family together all the while praying you can be half the parents they are.
4. When you are a little girl you’ll play budget because you went to so many meetings as a kid, hanging out under conference tables with coloring books.
5. You'll never feel connected to another person in the way you are with your nuerotypical sibling. They are the only ones that know the walk you are walking. You may have different ways of coping and that’s okay, but you’ll have the utmost admiration for them. Hear that one Tommy?
Tom and I
6. It’s not shocking to you, but nevertheless, you are awe inspired by the compassion and generosity of your fellow siblings, no matter how young. A prime example is my gal pal Katie, the daughter of Jess from Diary of a Mom, who worked to make the childrens' ICU cancer wing a little brighter in honor of her friend Tuck.
7. Fight. Get upset with each other. If you didn’t it would be weird! Just be sure that you make up – it’s not healthy to have that kind of tension in your life and there isn't anything truly worth being that angry over.
8. You'll think that you 'missed out' on some things during childhood, like trips to Disney or a Barbi Jeep, and it'll kill you that your parents feel any sort of guilt. The truth is though, you were given so much more... More than anyone will ever know.
9. The hope is though that you have friends like the Toal boys who’ll drive you around in their army jeep, even if they don't always share (Matt!)
The Toal and Dyer kids all grown up
10. You might meet some people in college who think your brother is a babe and beg to know when he'll come to party. Be prepared to laugh and tell them 'yes he's handsome but he probably won't party with you, and the conversation may be a bit strained.'
11. You’ll question how someone who doesn't have speech can be so loud.
12. That said, there's no greater sound that a genuine belly laugh from your sibling.
13. You’ll know that when you become a mother, you’ll go to battle for your kids. Hopefully you’ll find friends to fight the good fight and laugh A LOT along the way.
Mom with Maureen and Shari - the 'Lucky Ones'
14. Going into arcades may dredge up bad memories. You'll learn to be the master of compartmentalizing.
15. There will be moments, many in fact, when you’ll be overcome with pride when you think back on how far your sibling has come.
16. When finding someone to spend the rest of your life with - be sure that they tell you regularly how lucky you are to come from the place that you did. They'll also respect the relationship you have with your family and know that if they sign on with you, it's with the whole kooky bunch.
17. Birthdays are anything but typical. You’ll get used to your brother holding his ears anytime he hears the ‘happy birthday song,’ but still make everyone sing it twice.
Jeff on my recent birthday
18. You don't mind singing in public. Even if it means holding hands and singing 'we are family; Mommy, Tommy, Daddy, Ali, and Jeffery' or the 'Cruella Deville' theme song.
19. You think people who don't know someone like Jeff is missing out. Jeff makes people better simply by being himself.
20. You will come to define ‘family’ loosely as the people that are there for you and truly understand you will have no blood relation. Those people are the ones that will do holidays and vacations with you (Kyle and Conor), the ones that will gather at Erin Lane to share in our brothers’ group home for decades to come, and the tall Irish ones that come for tea.
A Montauk Vacation
21. From time to time you'll allow your parents to baby you as an adult because you did have to grow up faster than most. (Dad I'll pay you for my cellphone next month!)
22. When playing sports you will look forward to seeing your sibling sitting in a lawn chair on the sideline. You will also get some hives when they start making noise during the silence of a penalty shot.
Jeff in his chair
23. Both home and car insurance are vital. You learn this after your sibling goes through a stretch of kicking out windshields because of frustration or when they accidentally drive through the garage. Thanks AllState!
24.Talking about autism can be tricky, but work to get comfortable with it. My parents encouraged us to, mostly by example. They are educators sharing their experiences to not only my oldest brother Tom and I, but to the thousands of kids they taught and coached along the way. Anyone that knows my parents, can tell you that they ‘walk the walk and talk the talk.’ It’s no mystery to anyone that family is their priority. Luckily, it rubbed off on me.
Dad with Jeff during a halftime talk
25. You may not ever want to have a career in autism, heck it's all you've known, but never stop advocating for your loved ones. Jeff has made my life so much richer - I owe it to him to do the same.
Autism Speaks has some really great resources for siblings - Check them out!
You can find helpful books here