Underestimating Autism - Emily's Puzzle - Every time I start thinking we have this autism thing figured out, I get snapped back to reality quickly. www.emilyspuzzle.com
Autism

Underestimating Autism

As we were discharged from the hospital with our very sick little boy I couldn’t get the words, underestimating autism out of my head.  They just kept popping up amidst the fog that had entered my brain since we took our son to the ER the day before. Seeing my child in pain, putting him through painful tests without any preparation and not knowing how much he understood was heartbreaking. 

Ironically it was April 2nd, Autism Awareness Day when we took him to the ER due to vomiting, distended stomach and belly pain.  An autism mom to the core, I made sure we were all dressed in blue in support of Autism Awareness.

Owen had been throwing up off and on for a couple of weeks.  We thought he had the flu until he began vomiting up everything he ate.  None of his food was being digested. His belly became distended and he was in a lot of visible pain. That’s when we took him to the ER. It was during that visit and our entire stay at the hospital that I was continually reminded of the realities of autism.

I would tell the doctors that he had autism and has difficulty with communication. Each one would ask if he’s okay being touched. I thought it was great that they knew enough to ask but I could tell by the way they handled him that the rest of it was a mystery to them. They would continually ask Owen how he was feeling and to point to where it hurts. He wouldn’t answer so I would ask the question more directly, “Owen, does your tummy hurt, yes or no?” Even when he would answer a question we were never sure if he was repeating the last thing we said or if he was answering correctly. The doctors wanted him to tell them what hurt and not have me “put the words in his head.” I tried to explain that he’s incapable of responding to them but I mostly got confused looks or the all too familiar, “this-helicopter-mom-needs-to-give-her-son-some-space” look.  I saw their confusion and it reminded me of my son’s differences.

Owen has always had bowel issues. This is very common in persons with autism. He also has a selective eating disorder. Another autism related problem. He eats up to 12 foods. Those foods are label specific and cannot be altered or changed or he may refuse them. This is not the same as being a picky eater. He’s had months of food therapy which resulted in him becoming suspicious of the foods he was willing to eat. It can take months of seeing and touching a new food before he’s willing to taste it and even then he will most likely not incorporate it into his diet. There is no, “if he gets hungry enough he’ll eat” with a selective eating disorder.

This is a very difficult thing for others who aren’t living it to understand because it appears as though he’s just a picky eater. We told the doctor this and his reply was to just get a different flavor of medicine, “one that he likes” and “mix it in with his food, he won’t even know it’s there.”  Um, wanna bet?  Gerber changed its baby food packaging from glass to plastic and it took weeks to get him to eat the exact same food that was packaged differently.

Underestimating Autism - Emily's Puzzle - ER Visits, IVs, xrays, and bloodwork. How on earth did I underestimate his autism? www.emilyspuzzle.comSo as I sat at the hospital overnight with my five year old son, hooked up to an IV to rehydrate his little body, I was overcome with a feeling of frustration.  How could I possibly have underestimated his autism again?

I watched as nurses and doctors alike would come in and say hello to him. They would use their “talking-to-kids-voices” and ask him question after question that he showed no signs of hearing. I would speak up behind them, “He has autism and has a hard time communicating.” They would nod their heads in understanding, glance at Owen again out of curiosity (I think) and turn their attention to me. The thought would float through my head, “He’s not functioning as well as I thought he was, how could I have underestimated his autism?”

The nurses and doctors would ask me if he’s been in pain and for how long. I had a very difficult time answering them because Owen doesn’t feel pain like everyone else or he doesn’t show his pain like others do. I assumed that he hadn’t been in pain until he was writhing around in visible pain, but I can’t be sure. His belly is often distended and he’s always had bowel issues. I saw the uncertainty on her face as I tried to answer her straightforward question with anything but a straightforward answer. Why was it so hard to tell if he’s in pain?  How could I have underestimated his autism?

When it came time for them to take x-rays, put in an IV, or do a physical exam it was all done in real time. There was no time for picture schedules, breathing exercises and videos on going to the doctor. My husband and I fumbled around, falling back into the familiar routine of picking at each other because we felt helpless to help our son. The x-ray technicians talked loudly in their high-pitched voices and I worried that it was hurting Owen’s ears.They set a teddy bear next to him on the table to comfort him. I worried that it would scare him because he doesn’t like toys with faces. Once again, how could I have underestimated his autism?

Underestimating Autism - Emily's Puzzle - Emotionally raw story of a little boys trip to the ER and a mothers frustration at underestimating her son's autism. www.emilyspuzzle.comI felt a huge rush of relief when the surgeon came in to tell me that Owen didn’t have a total blockage and he wouldn’t need surgery. Then he gave me a look of pity and told me that Owen definitely has stomach and bowel issues that he’s going to struggle with for the rest of his life. He nodded as though offering me his condolences as he left the room. How on earth could I have underestimated his autism?

Twenty four hours after being discharged, his belly became really distended again and he was writhing around in pain. We rushed him to the doctor’s office where after examination we were told that his bladder was extremely full. We are still in the process of potty training him but he had been doing really well going pee by himself up to this point. I asked him, “Do you have to pee, yes or no?” He answered no just as he had several other times that morning but I took him to the bathroom anyway where he peed for 3 minutes straight. All this time he needed to pee but was unable to differentiate the usual discomfort in his stomach from the need to urinate. It was either that or he forgot how to use the potty on his own.  Instead, holding it for more than 24 hours. Lord, please keep me from underestimating his autism.

During our stay, many of the nurses and doctors wore looks of pity on their faces. I’m not sure if the pity was from seeing a child so sick or because he has autism. Maybe it was a little of both. It’s been awhile since someone has shown pity on me for having a child with autism. In the beginning it was more common because I was still struggling with it. I’ve learned that people take their cues from me. If I’m unsure of myself, scared or embarrassed they react similarly. If I’m sure of myself and confident in my decisions they follow suit.

I certainly don’t feel like I’ve been given a tougher lot than others. We all have our crosses to bear and I wouldn’t trade places with anyone. I’m grateful for my life and my family. I wish that I could protect my children from hurting but that’s not reality for any of us. If it weren’t for all of the pain and heartache in my life I wouldn’t be the person I am today.

Pain motivates and shapes us. It changes us, makes us stronger and more grateful for what we have. I have faith that the struggles that my son faces will change him too. I pray that he doesn’t become bitter but accepts life’s challenges, becoming stronger because of them.

Underestimating Autism - Emily's Puzzle - A family's emotional journey in underestanding their son's autism.

This article has 21 comments

  1. Jennifer DeFrates/Heaven Not Harvard

    Wow, I think if you don’t have an autistic child, you don’t understand how pervasive the effects actually are. I have a special needs stepson who has lots of similar issues to what you describe. He has a rare disease 1p36 Deletion Syndrome. He can talk, but struggles to communicate. Potty training and stomach problems are familiar to us, but we are surprised over and over about how much it affects. Keep on being his voice and his mom, you’re doing a great job!

    • Emily Eggleston

      Thank you so much! I have an autistic child and I still have a hard time understanding how pervasive the effects are. It’s a baffling disability. I’ve never heard of 1p36 Deletion Syndrome. That must be difficult to deal with too. Telling someone his diagnosis and seeing the blank stares that follow. Thanks for your encouraging words. Sending prayers and hugs your way!

  2. Jessica

    Emily,

    Your struggles are so real and I love how you’re able to lay it bare. That takes guts.

    I can’t imagine what it’s like to be in your shoes but I try. I feel bad that your little man has to go through these things but then another voice in my heart goes: oh, but he’s so blessed to have the parents he does, they love and adore him.. Doing their best to help him grow. And I smile.

    • Emily Eggleston

      Thank you so much Jess. That made me smile. You are a good friend and I really appreciate you. 🙂

  3. healing mama

    I honestly don’t have any words. This blog post was so vivid that I felt like I was there.

    I feel for son having to go through all of that. I know it has to be hard on you his parents. My heart goes out to you and your son.

    • Emily Eggleston

      Thank you! He’s feeling much better and bouncing around like nothing happened. I envy kids their youth and ability to bounce back from stuff without a second thought. I get more and more morbid with age. We have an appointment with a gastro doc in May that will hopefully start our journey in fixing his stomach problems. Thank you for your kind words. I really appreciate it. 🙂

  4. Rachel O.

    Your little guy is so cute! I didn’t know autism commonly has a side effect of bowel issues… I wish we didn’t have what seems like such an epidemic of autism in recent years. 🙁 It is too bad the doctors seemed to blank when you told them your son had communication issues. They, of all people, should understand! You clearly have a great attitude and outlook about the whole situation, but I think you are a very strong, brave mama! I also think your son will do just fine by taking his cues from you. 🙂

    • Emily Eggleston

      Thank you for your encouraging words. I really appreciate it! 🙂

  5. Crystal

    Praying for your family! You boys are so handsome, I know the Lord has wonderful plans for them. Keep positive!

    • Emily Eggleston

      Thank you so much Crystal! I really appreciate your kind words. 🙂

  6. Rachel

    As a special education teacher, I wish MORE parents would blog about their journeys!! It teaches, inspires and builds acceptance!! Thanks!

    • Emily Eggleston

      Thank you so much! I really appreciate your encouraging words!

  7. Karen

    I so relate. My boy has selective eating & I am so angry when people tell me he’s just being picky. We bought a different butter once & he wouldn’t eat his sandwiches as they tasted wrong, he didn’t know the butter was different but he could certainly taste it.

    All you can do is keep on learning with your boy & be his voice when the well meaning fail to understand.

    • Emily Eggleston

      I understand about the butter, completely. You are right on about being his voice. Sounds like you are doing a great job with your son. Thanks for your comment. From one autism mama to another, sending big hugs and prayers your way!

  8. Amanda Purkey

    Thank you so much for this post. I really needed to read this. I have a two year old autistic son and I sometimes underestimate his autism as well. I love the saying “Autism is never a journey I planned on taking but I sure do love my tour guide.” Everyday is a journey full of exciting and sometimes overwhelming things. Its hard to watch their struggles but its amazing to just sit back and watch them and the thingsthey come up with. My two year old can not feed himself but can put a 30 piece puzzle together. Their minds are amazing.

    • Emily Eggleston

      Thank you for your beautiful comment! I love that saying too, about loving our tour guide. It’s perfect! I think you have a wonderful outlook about your son and it’ll show through all of your struggles and successes. Keep up the great work. Thanks for taking the time to comment. I really appreciate your kind words!

  9. meltdown mom

    Really enjoyed this read, and understand fully. I too have had two diagnoses in 2 years. Communication difficulties are worse for my daughter than my son, and although she speaks very well, it’s only about dragons or minecraft or things like that. I am truly astounded by the lack of knowledge in the medical field. Therapists who are trained to work with autistic children even. I have found that it is only those who live daily, and advocate daily, for autistic children, that truly understand. Thank you for sharing. Your experiences validate mine, your sharing strengthens me.

    • Emily Eggleston

      Thank you so much! I completely agree about others not being able to understand. Each child is so different so I can understand them not being familiar with my child but its very disheartening when medical staff and as you mentioned therapists don’t understand some of the basics. I love connecting with other autism parents who get it. Thanks for taking the time to comment. Sending hugs and prayers to you and your family. 🙂

  10. Pingback: My Friends' Kids are Autistic - Melting It Down

  11. Adel

    Hi, Emily. I can fully understand what you are going through. I also have an autistic son and have been through a lot of struggles since he was a child. Having two of the same spectrum is much more difficult. I empathize with you. My son has problems with his bowels before but through constant research, I found out that they will benefit from a gluten-free and non-casein diet. Probiotics are helpful to the gut as well. Eating yogurts and drinking Yakult are good for them. These had helped my son to outgrow his gut problems. I found a way to solve the pieces of puzzles and put them all together to find the cure. Research and motherly love were the cure. My son is now in his teens and learning his way towards personal independence. I’m so glad to connect with you and if you need my help just drop me an e-mail and I’m happy to help.

    • Emily Eggleston

      Thank you so much for your comment. I’m so glad you enjoy reading my blog and can relate. Thank you for the great suggestions. We are waiting for an appointment with a gastroenterologist to begin our journey with different diets to see what will work best for him. Any diet changes are going to be a long term team effort due to his significant challenges with selective eating. I’m so glad you reached out. I’m going to check out your page and will definitely keep in touch. Thanks again!

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