A Salute to the Siblings of Autism

There is so much to say to you all, you fierce soldiers of breakthrough. You grow up in the same house as one they call “special,” and that carries more weight than we understand. It means that your parents’ eyes look past you. That we take it for granted that you are whole even when you are not. It means that you give and give and give. Every big sister shares with her siblings, but most of them don’t give away their entire portion. You do it. Often.

You watched your brother grow bigger but not older. We had that talk, introducing you to that mysterious word, “autism,” but you already knew something was wrong. When did you figure it out? Was it when you saw other boys trying to play with him? Or when he threw himself on the floor and screamed in the lobby of the bank? I hope it was something like that, and not something we, your parents, did. Because I’m sure you saw the change in us, too. We traded in our laughter for dark clouds and chronic busyness—not just from the doctors’ appointments, but from the other appointments, too. The ones that took our joy and concentration even when we sat next to you on the sofa.

Since those days of shaking, you have forgiven much. The family’s attention has been fixed on your brother. He absorbs so many resources: concern, affection and especially time. It must hurt sometimes to see so much of your inheritance spent on him. After all, there is only so much attention to go around. You’ve had to settle for out-loud readings in the living room, and the occasional daddy date at the movies. But you treat those consolation prizes like championship trophies.

The way you act, the dollar theater might as well be Disney Land.

You’re not perfect, I know. You struggle with all of this, even though you hide it. If there is one thing I fear, it is that you bury it too well. Many in your situation grow up to resent their childhood and their parents for not seeing them. And while I wish there was some way to ensure that this won’t happen, I can at least tell you this:

We do see you. We see how you buckle your brother’s seat belt on the way to school. We see you tickle him and chase him and laugh with him. We watch you lead him by the hand through the noisy crowds of kids and grown ups. When he pulls away from you, you call him back with care and patience in your voice. You read to him, you cuddle him, and every day, you teach him.

You teach us, too.

While we struggle to understand and accept your brother’s condition, you prove again and again that love is infinitely richer than tolerance. For unlike tolerance, love chooses to engage, even when there might be no positive response. Love enters into the uncomfortable, the mysterious, messy places, and says “I love you. Even here.”

This is what you do so well. You teach the people around you how to love their brothers. We see that. Our friends see that. God sees that. And all of our hearts are bursting with pride.

Months after I wrote this, my 11 year old daughter Emily penned this essay about her brother. It was for a school assignment, but I published it as a guest post, because, well, it proves everything I have said here. These are amazing kids. -jh

21 replies
  1. Becky Rovenstine
    Becky Rovenstine says:

    Thank you for writing from your heart. Our 5 year old son was dx with Autism in September after 1 1/2 years of wondering and waiting. He has a little brother who will be 3 in April (they are 2 yrs 4 mos apart) and although he has a severe speech delay himself we see him surpassing his older brother in many other milestones. We often wonder how he will handle things when the day comes where he realizes although he is younger – most likely he will naturally fill the role of “big” brother to his older sibling. I look forward to the day where he overcomes his own challenges and we see the boys truly bond and protect each other rather than getting frustrated with each other due to frustration they have with their own inabilities. We see glimpses of their bond now along with the deep love and know when it comes to it – they have an inseparable bond.

    • jason
      jason says:

      Becky, I remember this so clearly. It was hard watching my younger son surpass Jack. But he loves him now. So much. It’s a wonderful process to watch. You’ll see great things with yours too, I’m sure. 🙂

    • Daisy Manzano
      Daisy Manzano says:

      It’s so nice to see and read stories like this.. It’s like a hope that gives me a reason to understand more of my son Jacob.

  2. Grace Audet
    Grace Audet says:

    I treasure the short video I still have in my camera of Jenna & Sam dancing with Jack (at his pace) to one of the little tunes on Jenna’s keyboard (Jack’s choice). When he tired of the activity, Jenna & Sam did an entirely different (faster) dance to (I think) the same tune. It is a precious memory of a glimpse into the richness you are cultivating in your family.

  3. Julie
    Julie says:

    Jason, this is so moving! I love the line “You watched your brother grow bigger but not older.” You see them giving away their entire portion, wow, what a picture. Incredible, the giving away of their “inheritance” of focused attention from Mom and Dad, yet forgiving, and even giving in the way they give Jack attention. I want to remember the words of your last section. “I love you. Even here.” Those words are going to stick with me in those moments when it’s hard to love! Oh, and I LOVE your first sentence. Soldiers of breakthrough, cool. Thanks for sharing this!!!

  4. Chris Audet
    Chris Audet says:

    Jason, I’m humbled hearing about your whole family’s sacrifices for and love toward Jack. True love, even when so much is given but little progress is seen. Thanks for recognizing that in your kids, and making a point to spend precious time with them too.

  5. Pam Cummings
    Pam Cummings says:

    Beautifully written. I have struggled for years with the guilt of being so wrapped up in my youngest son who is nonverbal with Autism, and realizing that my oldest had suffered the same stress and depression I had. I assumed he was oblivious to a lot of things. Once i realized otherwise, we both managed to heal ourselves with the help of counseling. He has always been there for his little brother. My youngest is 12 now. My oldest will turn 20 in a few days. I hope you don’t mind me sharing, but this is the essay my son wrote when he sent out his college applications a couple years ago. I am so proud of him and he is by far, the best big brother a boy could have.
    Nicolas Leo

    I was seven when the shaking began, I did my best to help. I tried talking and holding him so he wouldn’t shake as much, but it was all in vain. Thankfully, my parents were able to procure a miracle drug. That was not the end of it though, the seizures left my brother’s brain ravaged. Nicolas is now ten, at best he has the cognitive ability of a four year old, and has been diagnosed with Autism and ADHD. Throughout his journey he has made great strides, although there are some things that he just cannot overcome. But it is his amazing ability to keep persevering that inspires me. Whenever I think that life is horrible, or something bad has happened, I think of Nico. Our excitement when he started walking again. My mother’s amazement when retelling how he had ridden a bike at school. The miraculous ability of his to pick up sign language when he has never spoken, and perhaps never will. These feats were all thought of as impossible for him to accomplish. He never quits. Never gives up. There are few in this world that will ever accept him or understand him as I do, people judge and society shuns those who are different. But he deserves to live out his life and accomplish his hopes and dreams just as any other. That is where Nicolas has made his largest impact; upon our unseen future. Undoubtedly, my parents will not be able to take care of Nicolas forever. They will become incapable at some point. When that happens, the responsibility for his care, physically and financially, will fall to me. That’s life. We play with the cards we are dealt and hope for the best. I know for a fact that our destinies are intertwined, and he is definitely not getting rid of me.Our relationship is illustrated by our interaction when I returned from China. It was around one in the morning when I finally arrived home from the airport. I could vaguely hear him in his room, my arrival had awoken him. When he saw me, he sat straight up in his bed and looked at me with the biggest grin on his face. If he could talk he would have said: “Kyle! You’re back! How did your adventures in China go?” My reply would have been: “They were awesome little buddy, but I missed you more than you can imagine.” Whatever trials and tribulations he faces down the road, I will be there for him. It’s the least I can do, since he has already given me the amount of lessons and happiness in the span of a decade, than most can hope for in their lifetime. Caring for him and seeing him grow has made me twice the man I could have ever hoped to be. I love him unconditionally and irrevocably. There is no doubt, that when I go away to college, I will miss him dearly.

  6. Daisy Manzano
    Daisy Manzano says:

    I was crying when I’m reading this. It’s like reading my own story, I’m glad that there’s someone like you and this page that shows me that it’s normal to feel this way a parents fear for their kids having diagnosed of Autism. Wander where, why, what and how my son Jacob got Autism.Thank you for this page, reading stories from parents with same struggles. Gives a boost and think that’s everything will be okay!…

  7. rebecca
    rebecca says:

    I just posted this on my blog! As much as parents struggle, siblings struggle just as much or more during their developmental years. Thank you for acknowledging the “other” siblings. There are also groups for sibs called sibshops. Maybe there is one in your area that your girls could go to. http://www.siblingsupport.org/

    Thanks for being such a great support for Autism awareness and families alike!

    • jason
      jason says:

      Thank you so much, Rebecca. And oh wow! I just looked at your site, and I had no idea there were networks for siblings. That is so cool. I’m going to check it out. Thank you for championing this cause! You obviously get it at a very personal level.

  8. Leeanne
    Leeanne says:

    Thank you for seeing your daughter even though she requires less of your attention.
    There may come a time when she needs some of that care and advocacy she’s seen you give her brother her whole life. Parents may be surprised by the amount siblings can give, but many don’t know what life is like without this family dynamic. I hate to say it, but your not out of the woods yet. Let her have her weaknesses, her anger, and her sadness if it does come out. It’s more poetic to praise someone for giving, but hard to teach how to stop. She will need to learn that too someday, and will be looking to you, her parents, to see if it’s okay to stop giving. Please keep seeing her. Don’t forget about her under the essays and the tickle chases.

  9. Lucy Bain
    Lucy Bain says:

    What a beautiful story. Now that I’m a parent myself I am beginning to realise more and more my own parent’s journey raising me and my siblings (one of whom has Down syndrome). I’m the eldest and can relate to the story of your daughter so so so well and my sibling journey continues now through adulthood. Sounds like you’re doing a great job acknowledging where all your kids are at. Best of luck!

  10. Amy Lesemann
    Amy Lesemann says:

    Recently my non ASD daughter has had some emotional problems. When I shared this with my husband, he confessed his first thought was, “No! You can’t! you’re the “normal” one! We can’t have two kids with issues!” he was sadly grinning as he said this… of course he didn’t mean it. She’ll be fine, ultimately, but we did get her some help, with the therapist who had helped us years before. And who had also helped her deal with the stress of living with an ASD older sister. I remember my non-ASD daughter saying sadly, “You know, I would like an older sister. A real older sister.” She has had to live with her just slightly off sister for years – with a second floor that stunk of five fish tanks, a sister who just seemed “weird”, “freaky” – because my daughter is 20, and autism was not commonly known when she was younger. And it was almost worse because my ASD daughter was not OBVIOUSLY on the spectrum. She didn’t rock, or self-stim….she was just “weird”, as the kids said. Sigh… I’m glad you wrote about how stressful this is to siblings. That’s so important to remember.

  11. MaKenna Rott
    MaKenna Rott says:

    Well, Jesus, this is something I have been looking for, for years. Siblings of children with Autism give just about as much as parents. I love my siblings so much, but I will never deny the heartbreak their disorder has caused. I love my family just how they are, but I will never forget the heartbreaking day my little sister and brother were first diagnosed. My mom always gets called to do speeches, she runs a support group, and she even works for the North Dakota Autism Center, Inc., but some people don’t understand, that one of the first things I say to people when I meet them are, “I have two younger siblings with low-functioning Autism.” Autism DOES control my life too, I am a teenage girl, and I have to work the activities I do around my siblings’ therapy, school, and DSP’s. Once again, I do love my siblings more than life itself, and I would take a bullet for them, but Autism DOES hurt me too. It hurts all siblings.

    • jason
      jason says:

      And it’s okay to say that, MaKenna. It’s okay to recognize that you are giving a lot, and that it can deplete your energy. I hope you have good friends around who will let you vent from time to time, and who will also remind you in the low times that it’s all worth it. For what it’s worth, it sounds to me like you’re doing an amazing job.

  12. Julia
    Julia says:

    Thank you for writing this astonishingly accurate piece of work. It was all I could do to keep from crying because my parents were in the room. My younger brother of two years was diagnosed aged 5 but with him he has no problem talking, in fact he never stops. I’m familiar with the heartbreaking tantrums and the trying doctor appointments and watching other children not accept him like I do. Before reading, it never occured to me that we are allowed to feel invisible and hurt and anger. I used to hate myself for feeling these things and lock them away so deep they could never be dug up again. But your article has opened me up to the idea that if I acknowledge these feelings and tackle them I won’t be resentful by the time I end my teenage years. I love my brother with every fibre of my being and would hate any harm to come to our bond.

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