One sister’s view on having two siblings with autism

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having siblings with autism

Having an autism diagnosis is something that affects the whole family. This goes the same towards other diagnosis such as adhd, bipolar disorder, schizophrenia, and many more. You occasionally hear about the impact of being a parent to special needs child, but many forget about the siblings. There are many special demands autism has on siblings. So today, I want to talk to you on the affects on children who have siblings with autism

In our home, there is an even split of those with autism versus those who do not. Our two youngest children have autism. The affects on the parents are the typical ones. Both of our youngest have sleep disorders as well, which means I never sleep for more than two hours straight at a time. Though I fuel myself with insane amounts of caffeine, the exhaustion from being a special needs parent is unavoidable. This exhaustion makes it where I cannot be there 100% of the time for our two without autism.

In order to truly understand our older children’s take on having two siblings with autism, I challenged my oldest to write me a blog post. She was happy to take the challenge, but I did not press the issue at all. Part of me was excited to see what she would write, part of me was terrified. Was this an answer I really want to read?

A couple of weeks went by and she handed me a folded piece of paper. She had accepted my challenge and delivered. One full page, front and back, explaining her take on what it is like to have two siblings with autism. I told her “thank you” and that I was proud of her for writing it. I put in my office to read later when I had a moment to spare.

That evening, I did not read it. I realized I was terrified to know how she felt about her siblings. I wasn’t sure if I could handle knowing that she hated her siblings or what she might have said. So, I put it in the drawer, and there it sat for three months. Yes, three whole months went by before I braved to open it!

 
having siblings with autism

 

 

Hannah’s Letter about having siblings with autism

I finally read the note yesterday. I’ve seen her do everything she can to help around the house. Even asking if there is anything I need. She deserved for me to read it, so I did. This is what she wrote:

having siblings with autism

“My name is Hannah. I’m 14 years old and I have 2 autistic siblings. There is Lilly who is 9 years old and there is Walker who is 2 years old. I think Lilly is a lot harder to deal with than Walker. Walker for help earlier than Lilly (though). We found out about Lilly autism recently. Walker has a therapist who comes to our house to help him. They play with him and they teach him simple things. He knows how to say hi, bye. He knows everyone’s name in the family and when you get hurt he will ask if you’re okay. He also knows to say sorry and ask for things he wants. Last night I had one of my science papers out and he picked up my lab packet and wrinkled it all up. He can’t (comprehend) it(s) an important school paper. It (is) also not the end of the world. I will survive with a wrinkled lab packet.

Like I was saying before Lilly is a lot tougher (to deal with) than Walker. Every day we expect something from Lilly. She complains over the stupidest things. Last night she got home from school and we had to go to the grocery store for dinner and she couldn’t get her after school snack and she (threw) a big fit the whole trip. For me it(s) a lot harder to understand. I just feel like she should be acting more mature for her age. She (is) going to be in 4th grade and she complains about things I feel like a 4-year-old would be upset about. I just have to (comprehend) sometimes Lilly (is) going to behave differently than others but she will get better along the way. I do think it (is) cute how attached she is to her stuffed puppies and she makes me really pretty art. I feel proud to be a sister of 2 autistic siblings. Sometimes it gets frustrating and I slip up a little but when I can help them successfully through their problems it feels great!”

Though it is hard to hear her struggles with our youngest daughter, I am very proud of her outlook. Her understanding of autism is so much more than mine at fourteen. Even though I did not read this letter for several months, I can tell you the impact it made on her was huge. Writing her feelings out helped her want to learn more about autism, and more about how she can help around the house.

The effects of having two siblings with autism

Having a sibling with autism can be emotionally and psychically draining. It can be hard for them to invite friends over, because they do not know what will happen. It can be a fear of meltdowns, echolalia, stimming, or just not knowing how to explain to friends about autism. They often feel as though they don’t get equal attention from the parents (which is sometimes a reality).

The best thing for a child that has siblings with autism, is to have an open dialogue with you. Start with an easy, age appropriate definition of autism. When it is easy for them to understand, it is equally easy for them to explain. Teaching your children that differences are a part of life and something to be celebrated, will take any stigma out of the equation.

From there, plan time that you can dedicate towards the siblings. We do not have a sitter very often, but we still make this work in our home. Our husband and I will take turns taking one child out to spend time with them. Most of the time, it’s just to go to a park or the library. It really doesn’t matter where you go. What will matter is the time you spend with them. Knowing that they are just as important as their siblings with autism will make them feel loved, and even proud to have siblings with autism.

TheMomKind

Alicia Trautwein is an autism parenting coach living in Missouri. She is the creator behind The Mom Kind, a website dedicated to parenting neurodiverse families.  She is featured in the "Amazing Moms" coffee table book by Hogan Hilling & Dr. Elise Ho.  She shares her expertise along with her experience in parenting children, both with and without autism.

24 thoughts on “One sister’s view on having two siblings with autism

  1. What an honest, inspirational post – it’s so refreshing to read posts like this. Thank you for your honesty and openness.

  2. Deeply moving and very honest. I choked up a bit thinking about how exhausted you must be and what an incredible job you are doing for all four of your kids. Taking them out individually is a great idea.

  3. I’m part of a mom’s group of babies born around the same time, and a few of the moms have children with autism. I’ve heard about their experiences, but it is interesting to read it from the perspective of a sibling. I’m glad you opened up this challenge for your daughter and posted her thoughts for readers as it is quite insightful.

  4. It was bold of you to ask her response but she seems mature. I love that she wrote what she aborbs and fully accepts that it is what it is. She’s not seeking attention, or feeling sorry for herself. She seems like a great kid.

  5. What an amazing child she is, it sounds like she is so mature and it is amazing how honest she has been in her responce to you about how it is.

  6. This was a great post. My son has autism. I also have a neurotypical daughter. She’s very patient with him and he loves her in his own way.

  7. This is such an emotional post! Your daughter is quite strong and wise…you should be really proud of her. I really appreciate the way you believe in “open-dialogue” with your daughter as communication is the key. Love this post!

  8. Aww Hannah’s letter is so beautiful! She sounds very understanding. We always hear the parents/ caregivers view on autism, it’s refreshing to hear the siblings view because even on them it can’t be easy.

  9. It is not easier to live when kids are with autism.But it seems your elder kid understand the situation.I can imagine how tired you are when you don’t have enough sleep.But,reading this post I understand that you all are strong and face to the life challenges!

  10. It must be extremely rewarding to raise kids and see what you did was right when they write such heartfelt letters. Great job mom keep it up and keep strong!

  11. That’s such a beautiful letter that your daughter wrote. I know I would have had a tough time opening it up as well for all the fears that are involved. It sounds like she has a very balanced and understanding view of her two siblings.

  12. I love reading about autism because my younger cousin has autism. It can be hard, as you said, for parents and siblings, and even other family members. I am proud of your daughter for writing this. She sounds so mature and seems like she wants to help her siblings any way she can. I cried through that letter because my cousin who is autistic has an older sister and she, too, would have said the same things your daughter said.

  13. Great post, thanks for sharing. Inspires me to use similar ideas to help my kids have more understanding, compassion for people with differences. Sounds like Hannah is a great big sister!

  14. I think it is very interesting to read your girls point of view. We often think about the situation for parents coping, but not the siblings. Thanks for sharing this.

  15. You really do have an amazing young lady and your two youngest have an amazing sister. She really does understand that they need more attention and that they see things different than she does. Her understanding of them is what makes her an amazing sister. Thanks for sharing her letter and I can see why you are so proud of her.

  16. Your daughter sounds very loving and strong. However as being an older sibling to someone with autism, this post was beartbreaking. You asked your daughter to write about what it’s like living with siblings with autism. However she barely spoke of herself or her feelings. The content evolved around her siblings which is how her life is. Everything is about the sibling and she’ll learn to only talk about them and will end up more focused on protecting them and trying to help take care of them rather than be a kid and get into trouble and have fun. When I write this it is not to attack or insult. My mother is an amazing person and I do not doubt you are the same. At the same time it took my mom 19 years to realize that I had spent my whole life trying to make sure my mom never needed to take care of me or focus on me because I knew my sister needed it more. I tell you this because I would hate to have any child have to feel the way I felt.

  17. Hi Meisha, thank you for your thoughtful comments. I completely understand where you stand as I also grew up with a much younger, autistic brother. For our daughter, it was a chance for her to write how she truly felt. We are blessed that she has very unique relationships with each of her siblings. The reason she was able to speak directly about them and not herself, is because we make sure each of our 4 children have equal time with us and their own separate lives and activities, for exactly the reason you expressed. They each have separate counselors so they can discuss what is important to them, and that includes our oldest. You are absolutely right that autism affects the whole family on so many ways, and it is so important for families to realize that. I have seen how the focus can be mainly (& often necessarily) on the child with special needs which leaves the other children feeling neglected and often resentful. Thank you for bringing up this point, as it is something I need to write more about. -Alicia

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