What Does it Feel Like to Have a Sensory Integration Disorder? People with High Functioning Autism Tell Their Stories
This is Part 2 of a three part series about sensory integration disorder (SID) in individuals who have high functioning autism (HFA). Part 1 dispels common myths about sensory challenges and part 3 provides specific tips and techniques to address sensory dysfunction.
Names and information that would identify specific individuals have been changed to protect the confidentiality of those gracious people who have offered to share their stories. Certain themes such as finding the "right" rock, not wanting to share a bed and liking the way stocking feel to the touch are commonly reported experiences and these were included as composite details in the descriptions below.
Many of the individuals interviewed stressed the importance of seeing each person as an individual. They emphasized that just because SOME autistics have certain characteristics does not mean that ALL autistics do and they ask readers to keep that in mind.
Much gratitude and thanks to the amazing people who offered to share their experiences for this story.
Amanda's Story (Age 25)
How I feel:
I’ve always had this “problem” with my skin. When I was little, practically everything hurt when it touched me- tags on shirts, jeans, seams in socks, shoes, hats. Even worse was when my mom would try to brush my hair or clip my nails. I remember screaming about that. I would never let people hug or kiss me either because I felt like I couldn’t breathe.
When I turned fourteen some of that started to go away and I remember that was a big deal to my mom. I remember her telling everyone “Amanda wears jeans now”. Things didn’t hurt so much when I turned fourteen but about that time I traded in the pain for an itching problem. Sometimes my skin just itches for no reason, especially my arms and feet and the cold still hurts my skin like when I go into a grocery store or when we have freezing rain.
My parents took me to the doctor when I was twelve, to see what the problem was and he said there was nothing wrong with me. “It’s all in her head”. After the doctor said that, I started to think maybe I was crazy until I got on line and started meeting other autistic people who could relate to what I have gone through. The thing is, if you spend your whole life being different from everyone else and they tell you that you must be crazy for feeling a certain way, then you start to believe them. Now that I’ve met other people on the spectrum who have experienced similar things sometimes even worse than what I have been through, I know I’m not crazy, it’s just the sensory part of my autism coming out.
You see there is one other thing I would like for people to know. People without autism have a hard time understanding what it is like to do even the simple day-to-day things that they take for granted, like meeting new people for example or going to a new environment. It makes me feel constantly like my life is at risk, like I’ve got a knife at my throat.
What I do to cope with sensory dysfunction:
People used to think I was anti-social. I guess in some ways I am, because I like to spend a LOT of time alone. When I was going to school, I couldn’t wait to get home every day so I could go to my room and turn on my music. I wouldn’t come out until my mom called me for dinner and I would get really upset and yell at her if dinner was early. Now that I’m an adult I kind of get how overwhelmed I used to be with all the sensory stuff at school and the reason I would stay in my room by myself was so I could wind down. I also don’t blame myself for feeling so crabby about changes in my routine either because I really needed that down time to recover from all the stimuli of the day.
I’m really into music. For example, since I got my new iPod last Christmas, I’ve listened to “Say” by John Mayer 1169 times and “Comatose” by Skillet 1534 times. I’ve recently started collecting Gregorian Chants and I can tell you the lyrics, length of each song, the choir and producer of each chant. I have all my CD’s organized alphabetically in my room with their spines lined up perfectly straight. I get really annoyed if someone accidentally knocks them out of their alignment even just a millimeter. I have always been that way about my things.
I would like to have a boyfriend someday and although I don’t really feel comfortable when people try to give me hugs or touch me I really wish it didn’t bother me so much.
I never got an “official diagnosis” of autism but when I got on line and read about other people who have autism, I just knew “Wow! These people “get” me! They didn’t think it was strange that I only like to eat white rice, peanut butter and chicken nugget (but only the ones from Chic Fil A) and I can’t stand to have different kinds of food touch each other on the plate.
For the first time in my life I felt like someone could understand what I’m going through.
John (age 18)
How I feel:
When I was in third grade I fell off the brick wall next to the north side of the building at recess. That afternoon when I got home my mom took me to the doctor because my left arm bone was bent at a twenty-five degree angle and I think you know, that is not supposed to do that. My mom called the school and wanted to know why the teacher had not notified her that I had broken my left arm. Mrs. Jones said that I hadn’t given her an indication that anything was wrong. That is a true statement. I did not feel a thing. I fell off the wall and just kept playing. Well, I’ve always been this way and this has gotten me into a lot of trouble throughout the years. For example, a few years back, I got my first DVD player for Christmas and when I turned it on, the noise was intolerable to me. It was like a pickax to my ears. Some certain individuals said that the DVD player shouldn’t bother me if I don’t even feel the pain of a broken arm and that really made me mad because the sound of that DVD player was painful and those certain individuals didn’t believed me.
Now, I don’t like to mention this but I think it might help other certain individuals. When I was younger, I got in trouble for touching a lady’s panty hose in the grocery store one day. She said that I was a pervert. When my mom explained that I have autism and that I wasn’t a pervert, then she forgave me. My mom told me that even though I like the feeling of panty hose on my fingers, I’m not allowed to touch them on a lady’s legs or I could get in big-time trouble because certain individuals might think I am making a pass at them and that is not very respectful.
What I do to cope with sensory dysfunction:
I cover up my ears and say “No!” and rock back and forth like I always do when something is like a pick ax to my ears.
It is a true statement that I am a big fan of the Eragon Series although I had to wait until the movie came out in DVD format because I think you know that I have real issues with the cinema because I don’t like the speakers blasting out my ears. My mom discovered that little problem early on and she has not taken me to the cinema since that time. That leads me to my latest ambition which is of course to memorize the book Eragon in its entirety. I have been working on that little goal for a couple of years now.
Excerpts from John’s Autism Evaluation:
Although his mother reports that John was previously given a diagnosis of Attention Deficit Hyperactivity Disorder (ADHD), he has also been noted to engage in ritualistic behaviors, has difficulty with transitions, is unable to maintain age appropriate friendships, engages in limited hygiene routines, seeks sensory stimulation from his environment and rocks back and forth. He therefore meets DSM IV criteria for autism.
John’s early health history was remarkable for febrile seizures, ear infections and gastrointestinal issues.
John’s mother reports that John does not handle change effectively. When John was five, the family was unable to move into a new house because he was so upset by the proposed change and unfamiliar odors in all of the houses they visited. On another occasion the family purchased a new car and John had a “meltdown” when he realized they would not be bringing the old one home. John still discusses details of the old car (model, year and features) and repeatedly asks why his father sold it. He also has an inventory of childhood toys and broken household furniture that his mother has disposed of over the years. He lists these items in a notebook and regularly indicates distress at their absence.
John also has a history of ritualistic “scripted play” with his parents and peers. The scripted play consisted of assigning certain characters from Eragon to peers or his parents and directing them to repeat the exact phrases from the book. John insisted they restart from the beginning if any errors occurred. His mother reports that he became aggressive (throw objects and punch the wall) any time a different activity was suggested.
Kay (age 42)
How I Feel:
What to say about sensory dysfunction? It pretty much rules every aspect of my life! Neurotypicals are always talking about how people on the spectrum have problems with socialization and communication but the only thing they have to say about sensory is what they see and that is maybe a person rocking back and forth or flicking their fingers or refusing to look them in the eyes. And then they say that is a communication issue. They don’t get how my sensory problems actually make it hard for me to socialize and communicate with them. Iff my socks aren't "just right" I can't pay attention to anything else. Little things like hair gel or deodorant can give me a headache and I learned a long time ago that you can’t just say to someone “hey your hair gel gives me a headache!” if you want to keep your job.
I’m not stupid but sometimes people think I am because of the way I act. I had a 4.0 in college and have a degree in graphic design. But for some strange reason I don’t really have a sense of where my body begins and ends. Sometimes I stand too close to people and that makes them uncomfortable but honestly, I am not even aware of it. Fortunately, I have a job where I can work in my little cubicle and keep to myself most of the time but sometimes if I have to interact with someone on a project it can really suck the life out of me.
I’ve learned how to keep it together while I’m at work for the most part. Things don’t bother me as much as they did when I was younger. I was your classically autistic child. I didn’t care what people thought. I used to run to the window every day at the same time, ten minutes before the teachers could hear the train coming through town. At first they just thought I knew what time to expect the train because it came at the same time each day. I used to get in trouble because the teachers thought I could tell the time because of the train incident but I wouldn’t ever tell them the right time when they asked. But one day I ran to the window thirty minutes early and ten minutes later they heard the train arriving on a new schedule. My teachers realized I could actually HEAR the train coming ten minutes before anyone else did and that I didn’t know how to tell time after all.
And the lights. It may be hard for some people to believe, but I actually see them flicker. I bought a lamp with incandescent bulbs to use at work because fluorescent lights give me a headache.
When I was five, I ran around in circles, flapped my hands, pinned myself between the couch and the wall, flipped light switches off and on and watched sand pour between my fingers for hours on end. Those things were predictable and felt safe to me and at that time, my brain wasn’t able to tell my body where I ended and the rest of the world began so I needed predictability somehow.
What I do to Cope with Sensory Dysfunction
In middle school I learned to stop flapping my hands and just rubbed my fingers together instead and in high school I learned to put my hands in my pockets whenever I felt the urge to rub or flap. Now I can usually save my self-stims for when I get home and my cat doesn’t mind. I’ve always had an affinity for animals. There is always too much information to process with humans and animals are predictable, easier to understand.
Enter here for a sensory overload simulation created by Cyndi on her Youtube channel "Streamofawareness"
Jeff (age 48)
How I Feel
My name is Jeff and I was diagnosed as having high functioning autism in 2008.
This diagnosis really helped my wife understand me better. She used to get upset because I don’t feel comfortable sleeping in the same bed with her and sometimes I need a lot of space for myself. It’s one of the unwritten social rules- to sleep in the same bed with your spouse but that has never worked for me.
So once I got my diagnosis my wife started to learn about autism and now she lets me have the space I need. I took over the spare bedroom and we spend time together before we go to sleep and when we wake up. This way, both our needs are met.
She also understands now why I don’t like to go to movies or concerts because I feel claustrophobic in crowds. Now, if she feels like going, she goes with a friend. She used to think that I was embarrassed to be seen with her in public and that I didn’t want to spend time sleeping next to her. It hurt her feelings and all of her friends didn’t help the situation because their husbands don’t have autism and I think they tried to convince her that I was selfish and needed to change.
Now she gets that I do really care about her in my own way, I just don’t show it to her in the ways that people without autism show that they care.
Jeff’s Wife Margo:
I met Jeff fourteen years ago and was charmed by his eccentricities. He was this passionate surfer guy who was so intelligent and didn’t worry about what other people thought of him. After we got married I began to realize that Jeff has serial interests. One or two things at a time that he focuses all his time and energy on, like surfing. Right now it is motorcycles. He lives, thinks, breathes motorcycles. In the past he has focused on whitewater rafting, fly-fishing, and wine.
Now I understand that these obsessive interests help him to cope with the difficulties of having autism.
I think the hardest thing for me has been to come to terms with the fact that Jeff has a hard time showing affection in the way I would like it. But he is just not always comfortable with hugs and affection. Jeff recognized this a couple years ago and made a promise to communicate his love for me by giving me a flower every week. To his credit, he has never missed a day of his promise. Every Friday I come home from work and find a new flower on the dining table.
Communication sometimes feels impossible because Jeff gets so caught up in seeing and sensing the world around him that he can’t stay focused on the subject. One time I came home and he had painted the wall without consulting me and when I asked him “why on earth did you go and paint the wall red without asking me first?” he spent fifteen minutes focusing on the color of the wall, “it’s mauve” he said and went into an elaborate demonstration of the finer details between shades of red and mauve. For me, the color of the wall wasn’t important, it was the fact that he did something without asking me that I wanted to talk about.
I have to remember that this is the way his brain works. It just gets tripped up on what he feels or sees, like the color of the wall. I know that the textbooks describe this kind of situation as a communication problem. But to me, it is a sensory issue because Jeff gets so caught up and stuck on what he sees and experiences.
Mary (age 16):
Mary has always had difficulty regulating her body. She was born a very fussy baby and we were unable to take her into places like restaurants or stores until she was at least five years old because before that she would just have a meltdown, and we would have to take her out kicking and screaming. She would occasionally hug me but it had to be on her terms and then she would squeeze so tight I thought she might break my ribs. She didn’t start hugging other people, even her dad, until she was about nine or ten years old. Since then we have always had to watch her very carefully around the pets and her baby sister because she will kiss and squeeze them too hard. In the past we had calls from teachers reporting that she was standing too close and clinging all the time. We had to teach her the proper distance to stand next to people and set an “only one hug each day for each teacher” rule. Mary loves to follow rules so fortunately that solved the problem.
Mary started doing kickboxing with her dad this year and it has been very good for her. It helps her work out her sensory issues and adjust to touch. Punching and kicking the bags seems to calm her and allows her to express her energy in a good way. She has had some difficulty getting used to the boxing gloves. We had to expose her to them very gradually, just holding them at first, then trying them on her hands briefly. Now she will wear them for punching but she takes them off as soon as she is done. It took about a month before she would wear them. As a teen, all the kids want to do their handshakes and give each other hugs. Mary seems more agreeable allowing others to give her physical contact immediately after she has done kickboxing.
Mary still becomes very upset over details like placement of groceries on the checkout belt. She will tell us we are doing it wrong and rearrange items to her specification. Every winter, she has a meltdown when she is expected to start wearing her coat again and yells so that the neighbors can hear her complaints. She also feels the need to correct estimations. “No mom it is not 7:30. It’s 7:32!” I still remember when she was a toddler. Every morning before we could leave the house Mary had to find a rock to take with her and she would only enter the car from the rear passenger side even if it meant making someone get out of that seat so she could climb in.
She also would not get into the car until she found her rock first and I remember wishing silently for her to hurry up and pick one so we wouldn’t be late. Mary’s world was so confusing and frightening to her and these things, finding the perfect rock to hold in her hand and getting in the car the same way every time helped to make her world predictable, helped her feel in control of something.
Her sense of hearing and smell are very acute. Little sounds like someone brushing their teeth can be so distracting they prevent her from completing tasks if she hears them in the background. We have found headphones and music to be particularly useful in helping her to fall asleep or concentrate while working on homework.
Mary also tends to focus on the strangest things. Last year her class went on an overnight trip. All the other kids came home and reported on the tourist sights. Mary reported the details of the bathrooms in the bus and hotel room. While other kids were taking pictures of their friends in front of landmarks, Mary took pictures of street signs and storefronts.
Just recently, her teacher noticed that Mary was staring off into space for brief moments of time. She recommended we have her tested for seizures. The neurologist told us that it was possible that she could have seizures but if they didn’t catch them at the time of her test, we couldn’t prove it. Fortunately, they showed up and we are trying out a medication that will hopefully prevent them.
Other people with Sensory Integration Disorder share their stories on video-
- Living with Sensory Processing Disorder - YouTube
Daniel, a young man living and succeeding with Sensory Processing Disorder. I made this video for a psychology class for future teachers as my final project.
- Sensory Processing Disorder - YouTube
This is a video I made to share just a little bit about having Sensory Processing Disorder. There is a whole lot more that I wanted to say but I don't know h...
- Carly's Café - Experience Autism Through Carly's Eyes - YouTube
This experience is viewed through the eyes of Carly Fleischmann, a 17 year old girl living with non-verbal Autism. Based on an excerpt from the book Carly's ...