Most people think I’m a little weird, and that may very well be true, but I also have a bizarre neurological condition called Sensory Processing Disorder. That means my brain doesn’t process incoming sensory data properly. Some stimuli trigger an exaggerated fight-or-flight response, especially certain textures and soft sounds, because my brain interprets the information as a serious threat. Therefore, simple everyday things that most people don’t even notice can be completely overwhelming to me.
To give you an idea what SPD is like, try and imagine how your body would feel if a burglar suddenly entered your home with a weapon drawn. Most likely you would experience a sudden onset of anxiety, while your body filled with adrenalin and your heart raced. Your mind would scramble for ideas to get out of the life-threatening situation. You would instinctively do anything you could to stay alive. Well, my brain responds in a similar way to simple ordinary things, like a keyboard typing or a whispered conversation or even the texture of a Popsicle stick or cardboard. I can be perfectly calm and happy one minute but if someone walks by wearing flip-flops then my body revolts at the sound of each snap against their heel and my spine curls with discomfort. When I’m in a crowd of people at a restaurant, an event, or even at church, I’m probably not engaged in much conversation. I may appear to be anti-social or unfriendly, but I’m really just focusing all my energy towards preventing a meltdown because my brain struggles to decipher which conversations are important, since they all blend together into a nonsensical mess.
As a child simply getting dressed was World War III between me and my parents. I couldn’t bear to feel the seams in my socks or have hair in my face. Elastic waistbands and gathered sleeves were especially troublesome. Most fabrics made my skin feel like it was on fire. The only time I wasn’t screaming and yanking on my bothersome garb was when I was allowed to relax in soft, comfortable, cotton pajamas…as long as the tags were cut out. But, of course, that wasn’t acceptable attire for Sunday school. So it became a weekly ritual for my mother and father to each grab one of my arms and legs and wrestle me into a dress and into our car for church, while I screamed bloody murder.
We always ate dinner as a family and my siblings and I weren’t allowed to get up or leave until our plates were cleaned. That was a setup for disaster for me. With each clank of a fork against a ceramic plate, or a crunch of ice, my whole body tensed up in defense and I felt like I was going to self-combust. My heart raced and panic flooded over me in mere seconds. It was extremely unpleasant and not a single mealtime was excluded. I cried and feverishly kicked my legs, with my hands covering both ears, and I tried to survive…while the rest of my family seemed to enjoy their meals. Many times I was left alone at the table while everyone else was allowed to enjoy their favorite TV shows, because I had refused to eat or participate like a normal human being.
It’s also a strange and seemingly random disorder because some things may provoke an involuntary meltdown, but I can be under-responsive to other things. For example, loud music, spinning around and deep pressure are soothing and calm me down. And sometimes a harmful wound, that should be painful, may go completely unnoticed. I often get bruises or cuts without even being aware of the event that caused the wound.
While I was growing up, neither researchers nor therapists had identified the disorder yet and I wasn’t formally diagnosed until I was forty years old. So most of my life everyone just assumed I was an ornery brat and I was almost always in trouble at home and school.
I realized early in life that I was different from others. So I believed I was an unlovable, broken mistake. But God doesn’t make mistakes. He has brought me on an amazing journey to show me that my SPD is actually a gift. I experience colors, patterns, and music at a very detailed and emotional level that most people miss out on. So, for that I am VERY grateful. All I need now is a leather uniform and cape to go with my mutant super-human powers.
For more insights about how I perceive the world with a sensory disorder, and how I overcome a world of chaos and misunderstanding, please watch my TED Talk:
Jennifer Leigh Allison 
Autism and Aspergers have presented in our family……..including the SPD diagnosis. Fortunately, today, awareness is commonplace. However, dealing with this mysterious malady 40 plus years ago ….. created many eventful circumstances that left us confused and hurting. God has indeed turned a difficult problem into a platform for Jennifer to share her story and the incredible hope brought through His Redemptive Love.
I can’t imagine going 40 years without understanding what was going on. It makes complete sense that you would feel like an unlovable and broken mistake (my heart lurched when I read that phrase).
I’m unbelievably happy that you have a diagnosis. I wish upon you abundant blessings, mercy, and grace as you start to untangle a lifetime of wounds. I am going through a similar process myself and it is the most painful, distressing, excruciating, baffling, frustrating, and glorious time of my life.
I’m in the process of finishing a book about my struggles growing up and not knowing or understanding why I was so different, and why I was so uncomfortable all the time. It led to a lot of anger and eventually drugs and alcohol where my life spiraled completely out of control. But, I’ve been sober now for 20 years and I have a lot of crazy stories to share about my journey. If you keep following this blog, or my facebook page at http://www.facebook.com/jenniferleighallison I’ll be posting information about when the book is ready. It’s with the Editor right now.
Thank you so much for your encouragement!!!
Hello Jennifer Leigh, I went to high school with your Mother and Dad, graduating with your Dad. I see a few of those actions in my children and grandchildren. Thank you for sharing from your heart. Such depth in your writings and then finally finding out and recognizing what was happening to you was like fitting a final piece of puzzle into place, such joy you had to feel. Again, thank you to your Mother for sharing your story.
Thank you for responding. It’s been a tough journey for me and my parents but our relationship has been restored and reconciled and now we understand a big part of why I was such trouble for them growing up. It has been amazing to finally put the pieces together.
Wow. I had no idea. Thanks for sharing this part of your life with us. I will pray as you come to mind.
Thank you so much Randy… both for visiting my blog and for praying! The biggest struggle I have these days is surviving an open office work environment. It is cubicle HELL for me every day. The only way I’m holding on is by wearing headphones and listening to loud music I enjoy all day. But, it’s certainly not ideal! My book is with an Editor right now and I hope it will help educate people about SPD from the perspective of someone who has endured it for so long, and tried every possible means to suppress it, including drug addiction. But, God has a plan. It is SO TRUE that when we are weak, He is strong. And, I’ve witnessed some pretty incredible things.
Thank you for sharing this. My granddaughter, 4, was diagnosed last week with SPD simply because her mother spent a lot of time on the internet doing research and when she found something that seemed to match asked for a referral. Because her parents and I (I’m the babysitter as well) had learned to manage her condition most of the time, everyone else thought she was an angel and was shocked that we even thought there was something amiss. Reading your perspective on this disorder gives me a glimpse into the world where she’s been trying to make sense of things. I am also largely convinced that my son, who self medicated and died recently, was probably suffering some variation of SPD but we never got a diagnosis because it wasn’t known and still is not well diagnosed.
I’m grateful you found help for your granddaughter. She’ll do much better now. I know how you feel when you say people don’t seem to understand. I hope to share more of my personal stories to help bring awareness about SPD. It’s a very unusual disorder that doesn’t make sense. While I was growing up I made A LOT of bad decisions with substances and drinking that helped me feel better in the moment. Of course, that just led to much worse problems. I’m learning to appreciate the benefits that come with it now and I pray your granddaughter learns to use her gifts as well.
I love what you said, “I realized early in life that I was different from others. So I believed I was an unlovable, broken mistake. But God doesn’t make mistakes. He has brought me on an amazing journey to show me that my SPD is actually a gift. I experience colors, patterns, and music at a very detailed and emotional level that most people miss out on. So, for that I am VERY grateful. All I need now is a leather uniform and cape to go with my mutant super-human powers.” Love it! That is how I see autism in my children. I do hope one day they will also see it as a gift, they are so much richer in many ways. They have their challenges for sure, but don’t we all?
So true. You’ll be a great mom by helping your kids to see themselves as gifted in unique ways, as opposed to only focusing on their challenges. Most of my life I focused on the problems and that led to a very bad/distorted self-image for a long time. Once I realized I was created for a purpose, and there are benefits too, I found confidence, joy and really began to thrive.
Best title EVER??? So glad we are all finding each other now…
Love,
A big ol’ weirdo
hahaha. I’m glad we are too.
Jennifer — I shared your post on The Sensory Spectrum facebook page. I hope you pop over to see the wonderful comments and respond to some of them too.
Reading your story is like reading about my daughter. She asked me why she is like this, I told her I don’t know but God made her this way for a reason. Maybe someday she will help kids with SPD? All I know is that she is special & perfect and I’m here to help her find her way.
I’m glad you can help your daughter. She may be wired differently, but her super powers can be used for good once she learns how to control them. hahaha
love your story
As a mother of a son with SPD, this was invaluable. Thank you for sharing. Thank you for giving me hope. God baffles me yet blesses me. I trust His character. Will certainly be following more of your blog!
Thank YOU for leaving this comment. It’s very encouraging to me!! God has brought me on a long journey that was difficult, challenging and painful along the way. HOWEVER, ALL things have been turned around for good. I have a book coming out soon that goes into much more detail. I hope you’ll subscribe to my email list or follow me on facebook too, so you get information about when that comes out. People with SPD can have an incredible impact on our world. There is hope! A LOT of hope. 🙂
Hi, Jennifer. I’m glad I read this because I found it incredibly inspiring. 🙂 I am really glad that (even if it took 40 years) you found a name for what you had been dealing with your whole life. Sometimes simply knowing what something is makes it easier to accept and live with, I think.
It is awesome you’ve realized that God has a very specific and special plan just for you. He expects you to be exactly and simply you, as you were wonderfully and carefully made (Psalm 139:14).
It is a beautiful comfort once we realize that.
He is good!
Many blessings,
~Brittany ❤
Thank you so much!!! Yes, you get it!! I’m so excited and inspired myself by your comment.
Hi Jennifer, I wanted to thank you for your blog. I am the mother to a little boy with SPD. From the time he was very small noise was very difficult for him and as he got older things got harder. Doctors told me I just needed better parenting skills. I refused to let him go with out help and eventually found someone to listen. I love your writing and feel that it helps me understand him. So again thank you for sharing!
Thank you so much for this comment. It’s very encouraging for me. This blog (and the book I just wrote) are exactly for this purpose. And, all the great parenting skills in the world can’t make SPD go away. But, they can definitely help us navigate the chaos and have a safe place to land. 🙂
wow, that was amazing, I felt all of your issues and helps me feel my sons as well. It is so great to hear adults speak of their struggle with spd to help my son not feel so weird.
Thank you so much for your encouragement. My goal in sharing all my struggles is specifically to help others understand this crazy disorder so your feedback means a lot to me.
Or you can fix it with neurofeedback.
That’s amazing. The more I learn about the mind, the more shocked I am that people think normal is a real thing.
Hahaha. I agree with you. In fact, maybe I’m the more normal one and everybody else is weird. 🙂
I have a similar situation and it has been even more pronounced in my daughter. People make fun of gluten free diets as useless or a fad, but cutting out gluten has done amazing things for her sensory difficulties.