Home > In Their Own Words > In Their Own Words – The True Heroes of Autism

In Their Own Words – The True Heroes of Autism

This “In Their Own Words” essay was submitted by Becki Becker who has a child with autism. You can read more of her writing at http://theothersideofnormal.wordpress.com/.

I read an article today online that was published in the March issue of the journal Focus on Autism and Other Developmental Disabilities. The findings show that some siblings of autisic preschoolers show signs of developing hyperactivity. It also supports the notion that mothers of young autistic children experience more depression and stress than mothers of typically developing children.

The article states that siblings of children with autism probably should be watched with appropriate academic supports in place, says Laura Lee McIntyre. “Our findings are rather positive overall, but these kids should be on our radar screens,” she adds. “It has been shown that around 30 percent of siblings of autistic children have some associated difficulties in behavior, learning, or development.”

I’ll give you my professional advice on the subject. Just some thoughts from a mom who has lived with this subject for over 15 years now.

Siblings of a child with autism are a special breed. They are thrown into a world of chaos and unpredictable moments. Every trip to the grocery store, community center, or even restaurant is sometimes humiliating and extremely stressful. Every holiday is an adventure in coping. They are asked to help watch their sibling so the parents can run errands, or have a conversation, or work from home, or even take a bath. They are asked to not talk loudly, play music, or watch a movie as it might upset their sibling. They are asked to limit visitors to the house to avoid extra chaos. They sacrifice their rooms, clothes, bathrooms and sometimes computers. They watch in horror as a meltdown occurs and try not to add to their parents stress.

I see these siblings as incredible people. They are exposed to more in their first 18 years than most adults in a lifetime. They learn to accept people for who they are, and to not judge someone if they are different. They learn to share. They learn that life is not fair. They learn that short-term sacrifices will help achieve long-term goals.

They learn to not “react” to their sibling; reacting just creates more chaos, more stress.  They know that their sibling does not “hear” their words but only sees their actions, which just makes the unwelcomed behavior continue.

Siblings change their diets to support their brother. Siblings give up a Saturday night with friends so their parents can get a much needed break.

I don’t doubt that the above findings are true. I’m sure they will find a lot of long-term effects on siblings of a child with autism. I just wish some of the studies would also “find” the incredible, undeniable, God-given coping skills that these kids develop. They are the true heroes of 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.

  1. Barbara Pons
    July 1, 2010 at 9:20 am

    OMG!!! This is so true! I really feel for the siblings. I know my daughter puts up with a lot from her pdd-nos brother. He has had many aggressive behaviors and she is always loving and forgiven when he appologizes. She is just truely amazing little girl. She is only 8 and her brother is 10. It isn’t the life I expected for either of my children.

  2. Michele
    July 1, 2010 at 10:22 am

    The sibilings are incredible people. They are mature beyond their years and accept all people. She sees the humor in life where I forget to. She has always helped out where she could and I tried to give her space when she needed it. I would also put my daughter up against any behavioralist. She is consistant, knows what battles to pick and understands how to communicate and plays video games with him. Over the years I am sure she has been embarrassed at times, she helped me drag him out of stores, hold him down to keep himself from getting hurt or hurting others and defended him to people who didn’t understand him. It is my responsibility to make sure once I am gone that he does not become hers. I believe she will always, love, advocate and be strong for him. My girl is amazing!!! Just once in awhile I get to see them act like a typical brother and sister and I enjoy every minute of it. :0)

  3. Teresa
    July 1, 2010 at 10:40 am

    This is a very true article, and I agree with every word written. My sons are twins – and one son has PDD-NOS, and the other does not. The “typical” sibling has had to endure some very intense things in his early life. He has gone through jealousy; and stress; and depression… resentment… to name a few. He has also had times of wonderful coping and acceptance, but lately is getting into a time frame where he is conflicted… He feels this added “responsibility” to help care for/watch/protect his sibling with PDD… He gets asked those things like “don’t talk about such and such” or “don’t comment on this and that” or “don’t be so loud” or “just leave your brother some space for HIS Legos on the floor”… etc.
    I too have had a lot of stress handling not just my son with PDD-NOS for the reasons all of us parents know about, but for having to handle the issues that have come up with my “typical” son also. I have gone through bouts of depression; anxiety and just in general, added stress.
    I think there are hidden gifts in this walk I’m on for sure. God has great plans for all of the members of my family. But this article does speak truth. May there be comfort for others out there to know “You are not alone” – which brings me comfort also.

  4. Carie Ganser
    July 1, 2010 at 10:46 am

    When I was born, I didn’t get enough oxygen to my brain. Which may have caused me to have autism. I’m now 35 yrs. old, and could have Asperger’s Syndrome. I have a job at a grocery store & Special Olympics athlete & Global Messenger (Spokesperson for SO).

  5. ECoyne
    July 1, 2010 at 10:59 am

    Absolutely!! And recently, my son who conceals his PDD-NOS so well and yet so very not, found a young hero in his class. This peer offered support and understanding in the moment when it is most valuable when no one else — not the teacher, not the principal, social worker nor school psychiatrist — did. He was amazingly mature and so beautifully perceptive and well-balanced. I was not surprised when I discovered he was a sibling to autism. His older brother is diagnosed as PDD-NOS. We benefited tremendously from his experience too!

  6. Roaine Dion
    July 1, 2010 at 11:27 am

    I have b/g twins, just turned 9. My son is PDD-NOS and my daughter is considered”typical.”. I call her anything but typical! She is her brother’s biggest cheerleader and quiet role model. We can never underestimate the incredible effect of having a “typical” sibling to emulate. My son was not officially diagnosed until 4 1/2 because he does not fit the mold. He’s empathetic, he has an incredible imagination and is quite social. I asked a therapist years ago where he would be without his sister to lead the way. She said that the daily exposure to “normal” did more for him than any therapy ever could. My daughter is occasionally jealous of extra things he gets, such as swim therapy, but also understands that there are things she does that he cannot. It has been said that siblings would make the best therapists except that they’re too burned out by 18 to want to do it. We need to celebrate the gifts of these special individuals without overburdening them. As of now, my daughter wants to grow up and help other kids like her brother. If she is even willing to consider it in another 9 years, I’ll figure we found a good balance. My children are both my heroes, for different reasons.

  7. Jessica
    July 1, 2010 at 11:29 am

    Thanks for having a conversation on this! While my son with PDD-NOS doesn’t have extreme behavior problems, he does operate under a significantly different set of parental expectations than his typically developing twin brother. It’s not fair, and yet, my typ. dev. son copes with the situation with grace.

  8. Shana
    July 1, 2010 at 11:41 am

    This is absolutely the truth.. My little brother is autistic and I have dealt with it for the past 24 years and there were many days that I prayed that he was just normal not for his sake but mine, I know that sounds selfish. But he has taught me so much and I don’t think that with out him that I would be the person that I am today .. He is my moon and stars and I am blessed to have him in my life no matter what. Even if he never speaks a day in his life, we have a special bond and I just know.

  9. Sharon Cowles
    July 1, 2010 at 12:12 pm

    Thank you for writing the story above. I copied, pasted and sent this to my daughter on her wall on face-book. I couldn’t have wrote anything any better that expresses what my daughter goes through on a daily basis. Even though this is the hand that God has dealt us we will learn lessons in life that most others will never know. No ones knows until they live it. Thank you again and may God bless you and your family.
    Sharon KY

  10. Fernanda C.
    July 1, 2010 at 1:43 pm

    This is nothing but the truth ! This sounds like my house hold EVERY DAY ! I have and autistic brother who is 12 so he is starting to go through puberty ! The hormone changes and the mood swings are the worst. I mean the fights are getting worse and worse but my mom and I have made a promise that we will not give up on him. My dad and mom need a break once in a while, and to see the tired look of her eyes assures me that taking care of my brother was worth not going to another Saturday night party. I have learned to be patient and caring thanks to my brothers situation , and I know for a fact that God has a plan for him.

  11. Vega
    July 1, 2010 at 1:55 pm

    Wow! This story brought tears to my eyes. I am exactly in this place right now. Stressed out and trying to just get by day by day. My 9 year old is just wonderful and really has to deal with a lot because of her 2 1/2year old brother with autism. I talk to her soo much and explain to her that when her brother does these “annoying things” like she says, like scream in the car the whole ride to school, push her away, gets anxious and tantrums through many transitons like on trying to exit a store, or cry because he doesn’t want her to sing, he never, ever does it on purpose. He just doesn’t know any better right now, and that things will get better as he learns to communicate with us.
    Sometimes we want our kids to just get it and have understanding and empathy, be helpful and mature, but they are just kids. Yet, my daughter surprises me every day with her kindness and wisdom.
    Just two days ago, while I was driving, my son was having a screaming fit in the car, and I did not say a word. But my daughter turned to me, gently grabbed my hand and said, “It’s okay mom. Remember he doesn’t mean to stress us out. You know, I think maybe we should talk to dad about you taking a day off and just relaxing-oh maybe you can go to a spa and get a massage….and maybe I can go too.” She made me laugh and cry at the same time.
    My children are both special and beautiful and intelligent in their own special way. And the lessons we are learning with our son, will make us all better, more aware people. Thank you so much for this story.

  12. carolyn
    July 1, 2010 at 4:10 pm

    I am the mother of 3 son’s. Ages-44,40,35. The middle one is a classic autistic. The ending to this story is remarkable. He has a respectable job doing accounting and is loved by all. He is my best pal. The other two son’s, gave and sacrificed a lot for their brother. The stories we could tell after 40 yrs, would fill a novel. They both have turned out to be wonderful, super intelligent men, and good human beings. The special brother –gave us purpose..They learned, not all things are perfect. We can only try. I am so grateful for my middle son, and my two others, who are more than hero’s…

    • Lynne Ulrich
      July 1, 2010 at 5:50 pm

      thanks for the inspiring story…we need to hear more from families with older children…thanks it gives all of us hope..

  13. Lynne Ulrich
    July 1, 2010 at 5:23 pm

    what a great article….my 12 year old granddaughter is mature beyond her years..which unfortunately is a result of dealing with her 10 yr old brother’s needs. Siblings definitely are the heroes of autism but unfortunately as much a victim too….they need so much TLC from relatives to help compensate a bit…it is reality for these kids…extra hugs and kisses go out to all of them..

  14. July 1, 2010 at 7:00 pm

    At the time vincent was born there was 17yrs between vincent and my oldest. He didnt really say too much however only 6 yrs between vincent and michael. Michael has in any way been supportive. He is a very selfish child and would reather bully vincent then ever help him or try to understand him. it had come down to if you ever touch him again i will call the police and have you arrested. He has not bothered with vincent since that time. Vincent is vincent, we (my husband and myself) love him for who is is and the joy he brings to our lives. we went thru all the tarntrums and all the hell that you go thru haveing an autisic child. however we never tried to change him. we love him just the way he is. I just wish his brother just took 1 second and tried to understand and love him for who he is. michael is away at college now and is still as selfish and self centered as ever. if its not about him then he wants nothing to do with it. It tore our family apart as far as our children go. however, after 8 1/2 yrs of fighting with my husband over vinnie it made our marriage and our love for each other and for vinnie stronger. It didnt break up our marriage it just broke our other children.

  15. Joan Tatman
    July 1, 2010 at 7:09 pm

    I am a Grandmother of two special needs children; one by my daughter( do to birth), and one by my son(asbergers) These children have taught their family the real purpose of being here on earth; to love without predjudice,be your true self, and touch others in a way that will make change for the good.

  16. stephanie
    July 2, 2010 at 12:31 am

    omg i am crying!! i am the older sister and my brother will be 19 in august and is autistic.this story is what i went thougth grow up, but i love my very much and i would’nt change a thing! my borther make my the person i am today! thank you for article.

    • maria
      March 29, 2011 at 12:14 pm

      Amen to that. I heard a quote that says “Be the change you want to see. I wish there was more people with your attitude. Sometime it is better we love our fellow human being more than god.

  17. Andria
    July 2, 2010 at 9:07 am

    My two girls are SO good to their brother with autism. (The poor boy has 3 moms!) They have helped my husband and I so much that I’m not sure we could have gotten to this point without their help. I love both my girls so much and am so proud of how they treat their brother and all the other kids they come in contact with (ASD and NT). Even though it has been difficult for them, I think it has made them stronger and better prepared for the future.

  18. Lisa
    July 2, 2010 at 9:31 am

    Thank you all for sharing. I am an aide in a public school that has had the pleasure of working with one of the many special children afflicted with autism. My boy as I call him ( I was blessed with all girls) took me through a journey this school year that you all deal with on a daily basis. I felt honored to work with him and his family. ( He is 18 and his brother is 14 both autistic at different levels)I got to experience the questions and attitudes that people throw your way. All of parents and siblings that God has givin a special child are so very special themselves. I am glad that I got a chance to help the family have a break during the days my boy attended school. And I am glad they gave me a chance to know such a special child I really enjoyed each day though some were trying but I also know that my days were just a droop in the bucket compared to the families that spend each day with an autistic child.God bless you and your patience. We love your children also…

  19. Larelle
    July 3, 2010 at 9:44 am

    I can relate so much to this story. I have a 10 year old girl with Aspergers and she has a 7 year old sister who is the most level headed person i have ever met. She has had to deal with melt downs, missing out on going places, stress and physical attacks on herself. She takes all of this without complaining and when i ask her how she feels about it, she says that is just how her sister is. She is accepting of everybody and doesn’t judge people if they are a bit different. She is such a beautiful girl and i hope she grows to be a beautiful adult. Siblings of those with autism truly are heroes and we should all strive to think and feel like they do, they seem to get the balance just right.

  20. Judith
    July 3, 2010 at 10:25 am

    One day, about 19 years ago, my five-and-a-half year old son, my six-month old daughter and I were eating at a local restaurant. We were enjoying our meal when the director of a daycare, from which my son (who is autistic) had been expelled for behavioral problems, passed our table. She greeted me and commented on the birth of my daughter by suggesting that the baby not spend too much time around my son, as she would pick up his mannnerisms and speech patterns It was as if she thought autism was contagious. Oddly enough, this was the same woman who had urged me to look into getting my son some type of help for his developmental problems. The fact is that when we found out our son had autism, we felt that David would need all the attention we could give him and it wouldn’t be fair to have another child. But sometimes the unexpected happens, and she did. That baby grew into the best sister he could have had, and my son was a good influence on her as well.

  21. Jill
    July 3, 2010 at 6:11 pm

    This story is great- it reminded me of how special my youngest daughter is…the little big sister is what I call her. Lucy (age 7) is understanding and helps Rachel (age 10, Aspergers)all the time. She shares the responsibility of looking out for Rachel and when Rachel’s behavior is challenging, Lucy steps up to the mark every time and makes sure she behaves her very best to make things easier on me. Thank you, Lucy, love mum x

  22. Cat
    July 4, 2010 at 10:30 pm

    My God, I never even thought of this…I have 3 girls, 11, 8 and 3, my youngest was diagnosed with PDD about 6 months ago. My older 2 are soooooo good with her.. they sacrifice a lot of their free time to help watch her for me all the time…just so I can cook diner, or fix the beds or even go to the bathroom! They even sit with her to do her exercizes with her (tracing shapes, drawing straight lines, reading books to her… I never give them enough credit, but I now I will treat them with the utmost respect… Thanks for the eye opener!

  23. carolyn
    July 10, 2010 at 10:36 pm

    Thank You. I hope people will pass this on to the siblings.

  24. Nicole
    July 14, 2010 at 4:45 am

    My 5 year old son is so wonderful (most of the time) with his 8 year old sister who has “mild” autism. When she has crying meltdowns, he comforts her yet knows not to touch her. He looks after her at camp and reports back to me better than any teacher or staff ever would. He loves her and frequently gets frustrated because she won’t play with him or let him touch ANY of her toys. When I get frustrated because she “doesn’t hear me” when I am talking- he reminds me to be patient and gives me hugs when I need them. His compassion for people whose “minds work differently” is overwhelming. I’m so proud of him.

  1. July 13, 2011 at 12:01 pm

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