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!
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:
“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.