Autism · Family

What it’s Like to Have a Sibling with Autism.

My older brother, Jordan, is very high on the autism spectrum. This is a rough definition of what that means from Autism Speaks,

“Autism, or autism spectrum disorder, refers to a range of conditions characterized by challenges with social skills, repetitive behaviors, speech and nonverbal communication, as well as by unique strengths and differences. We now know that there is not one autism but many types, caused by different combinations of genetic and environmental influences.”

For Jordan this means; limited social and communication skills, extreme sensitivity to sensory stimuli, lack of motor skills, the need for a rigid schedule, and repetition of words and actions. He will never be able to live on his own.

In doing research I have found quite a few resources for parents with children on the spectrum, but hardly ANY for the brothers or sisters. I never had other siblings to resonate with in this unique dynamic, and so appreciate the writings I have found that come from this perspective.

So if there is anyone out there who feels like they are facing this alone, you’re not. I’ve been there and so have countless others. It just doesn’t seem to be something that is talked about all that much.

This is a bit of what it has been like for me.

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My family and I lovingly refer to Jordan as a ‘6 foot 4 pre-schooler’. He learned the bulk of his language through watching and re-watching various children’s movies on VHS tapes. Because of this he can quote entire Disney movies, knows exactly what day Tarzan was coming to theaters in 1999, and will periodically break out into God awful 90s Christian sing-a-long songs. I always appreciate a good VeggieTales classic but he usually pulls from the horrors that are The Donut Man and Quigley’s Village (anyone??).

We joke that people probably think we are the most evangelical, conservative family ever to have him singing and quoting bible verses from those movies.

Wellp. Could be worse.

My brother is 25 years old and over all a really happy person. He blesses others daily with the routines he builds in conversation and even sensing their deep emotions. He does vocational work in the community, is cared for in a group home, and adored by people at his church.

His comedic timing is also on point.

Example; I was born a premature, very pink, little 5 pound baby. His first words to me? Apparently at 4 years old it was something like “Hello, Piglet!” In a Winnie The Pooh voice.

Oh man. That kid.

But, there were a lot of years of anger, tears, and exhaustion in our whole family.

Growing up with a brother with autism was really, really hard. By the time I was old enough to understand that this was not a normal sibling relationship, it felt like more of a burden. It was embarrassing.

Looking back, so much of my energy was spent trying to prevent or contain his meltdowns. Any mention of the schedule changing or something that is not happening in the present is a trigger for him.

In his younger years he had fewer coping skills and emotions would take over far more often. This meant constant meltdowns in the grocery store, in the car, and at the dinner table. It meant yelling and protesting. It meant constantly reminding him that we were “just talking” about things and it wasn’t all going to happen today. It meant becoming a babysitter from an early age and turning down plans and activities because I had to be home with my brother. It meant regularly cleaning up trails of peanut butter and jam residue in the kitchen and (let’s be real) wiping poop marks off the toilet seat.

As an introverted, shy, and–I later realized–socially anxious kid, his public outbursts gave me so much fear. Incidents at home drained my patience. The energy in my house was always directed toward containing his emotions.

For the record, my parents are incredible.

They poured into Jordan so much and made so many sacrifices to ensure his well-being. They are no longer together for a variety of reasons, but the stress of raising a child with autism definitely took a toll.

And I am incredibly lucky because they were attentive to me and my needs as well. Of course we had issues, but I never felt forgotten as I imagine many siblings of disability often do.

Growing up with Jordan, I learned a lot. When I’m around him now I question how in the world I was able to handle his constant need for affirmation and LOUD remarks that come out of nowhere. I can understand it now with compassion knowing that his brain function is at a much younger age than mine. But it is still exhausting.

In a few years of reflection, I have come to understand the ways in which having a brother with autism has influenced me both positively and negatively. It makes me wonder if these are common behaviors learned among the siblings.

Here’s some that come to mind.

NEGATIVE:

  • Intense pressure on myself to prevent and resolve conflicts.
  • Internalized anger/resentment/anxiety.
  • Feeling the need to hold in and figure out my own emotions.
  • Putting the needs of others before my own in unhealthy ways.
  • Not asserting my own needs.
  • Potentially learned sensory overload.

POSITIVE:

  • Patience.
  • Compassion.
  • Vital communication skills.
  • Boundary setting.
  • Putting the needs of others before my own in healthy ways.
  • Potentially learned sensory and environmental awareness.

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I love you, Jordan. Can’t wait for our next jam session to All Star by Smash Mouth in the car.

24 thoughts on “What it’s Like to Have a Sibling with Autism.

  1. Grace, thank you for your thoughtful honest words. We love your family dearly and I can’t imagine growing up with a brother who is on the Autism spectrum. What I can imagine is that the Lord has crafted you into a beautiful, mature woman that has a soft and reflective heart. Your words moved me to tears this morning and caused my heart to be sensitive to the Spirit this day. I often shake my head at what I don’t understand in the way the Lord does things but I know that He is good. Your story helps remind me of this.
    Blessings from a distant Uncle.

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  2. Grace! This is a stellar piece of writing at so many levels!! Your heart and humor and insight shine through beautifully. Thanks for writing this for SO many that will be able to connect to it!! 😀

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  3. What an amazing writer and young woman you are Grace! I loved reading this! I wish you could join us in Madagascar for Camp Fihavanana this summer! We hope to have you join the team next year! Miss you!!!

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  4. Because of the difficulties and challenges you faced personally, and because the Lord is close to you, you have been shaped for the better. What an amazing testimony your life is becoming. Great article Grace. “Grace,” such a suitable name for you. Blessings.

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  5. We met Jordan and your parents before you were born. They were just recognizing his special needs. It is amazing to read your insights and see how God has worked in your life through the years. People don’t realize how siblings are affected and need support. Thank you for sharing your heart and some of what you’ve learned!

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  6. Grace, this is mature beyond most (even of my age). Your insights, candor, kindness, gentleness with yourself and others in your situation, and yes, your *grace*, are profound and moving. I’m so glad I read this today, and I hope it is the first of many of your writings on this topic – I’m sure many, many will be better for it!

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  7. Grace, I hear the deep soul and infectious laughter of your dad mingled with the captivating tenacity and bold reflection of you mom sprinkled through ever wonderful word you’ve written. I am drawn to your story of Grace. Keep telling it! You tell it well.

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  8. This post was written from the heart. I’ve seen first-hand how affected siblings can be having an autistic brother or sister. In fact, as a parent of two sons on the spectrum – I was overwhelmed by all that I had going on and felt helpless when my daughter was deeply affected. It helped me a lot to have support and I’m still meeting with other moms – we formed a support group of our own 15 years ago and still are close. The affect upon siblings comes up for all of us and you wrote such articulate things on this post. The stress you’ve gone through, Grace, must have been unimaginable – and yet, your name says it – you seem to have handled it with Grace.

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  9. Such beautiful words coming from the trenches of the pain and the joy. I’ve known your parents since college and I know bits of the path you have all trod. You will be such an encouragement to other siblings living this.

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  10. Grace, I hope that my oldest grows up with this much love and compassion for his younger brother. I have three boys, my middle son is eight and has high functioning autism. He is very verbal but awkward and has extreme meltdowns from his triggers at home. Right now my oldest is 11 and has a very hard time during these moments. A lot of the time it’s a meltdown directed toward him. I’m starting to suspect that my three year old may be on the spectrum as well. Our house is always loud and hectic, and I can’t imagine how frustrated my oldest feels at times. Your post uplifts me. That someday (hopefully) there will be all the love, support, and patience like you give your brother. Thank you for sharing! ❤️

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