These are the chapters to the book I wrote. I posted the introduction a few months ago. I hope you gain something from reading.
Chapter 1: My Ball of Wool: Sensory Processing Disorder and how it affects me.
Chapter 1: My Ball of Wool: Sensory Processing Disorder and how it affects me.
Imagine a sound that you absolutely cannot stand at even a low volume. Maybe it's a lawnmower, jackhammer, birds chirping, or sub woofers thumping from a passing car. Maybe it's a complex sound as in a song-THE ONE SONG YOU ABSOLUTELY CANNOT STAND TO HEAR because it brings up turbulent emotions each time you hear it or it makes you angry because it demeans women and/or minorities.
If you are more visually oriented, imagine the worst nightmare you ever dreamed, watching someone you love die, blinding strobe lights. If you are tactility inclined, maybe it is the feel of wool or burlap being brushed against your skin. Now imagine what ever the dreaded thing is- that it is pervasive. There is no escape from it. If you turn on your TV, there will be a flashing strobe light on every single channel you watch. If you go outside, birds will chirp, not only in the spring and summer, but also in fall and winter-all day and all night.
At your work/school you will brush up against wool walls, furniture, and electronics-everything you are exposed to including your clothes will be wool. Add this to your entertainment schedule, too. Whatever the dreaded thing is, it will be in restaurants, amusement parks, movie-theaters. Your only choice is to flee and remain in isolation.
Don't expect much sympathy from most NT's or even some ASDs, either. Some common things you can expect to hear are "Birds are dear little creatures-how can you hate birds?" But you don't hate the bird, do you; you hate the noise the bird makes. "Strobe-lights are sweet, dude, wear sunglasses!" "Wool is durable fabric! Be glad you have clean, warm clothes!"
Summary: If you are autistic and have a sensory integration disorder specifically centered around one thing (alive or inanimate), you will be seen as a hater of the thing than as a sufferer of the byproduct caused by the thing.
It's not the thing's fault. Birds must sing in order to mate and secure their species. Wool and strobe lights are what they are. None of these things has waged a personal vendetta on you. It just happened that you were born autistic and had sensory integration disorder that wasn’t treated or is in the process of being treated.
At the moment, however, none of this can help you, because wherever you go and whatever you do, whatever it is that melts you down, keeps you home, unemployed, and depressed, because it exists everywhere and you have not learned to cope with it, making you feel like you are a brand of autistic uniquely apart. And that, folks is a place colder than hell frozen over.
My ball of wool? CHILDREN. Babies and toddlers. They cry, squeal, scream, and squawk-which is what kids do. Unfortunately, something is not wired right in my brain-and hasn't ever been but worsened during my teen years.
I've been down many mean streets and hard journeys throughout my 21 year sojourn in my never-ending treatment odyssey. My mom sojourned along with me until her death in 2014.
It isn't until more recently that I underwent therapies to force my brain to change some of the way it is structured. This is the best way I can describe my sensory sensitivities to you.
Crying in the car
I used to cry on long car trips as an infant up until age 5. It wasn’t due to boredom. It was due to sensory processing disorder than accompanied my (undiagnosed back in the 1980’s) autism spectrum disorder.
My mom rode in the back seat to comfort me rather than quitting taking me out in the car.
I fortunately outgrew this around age four. I do remember telling my mother later that it was due to the sound of the tires against the road that set me off.
While I am blessed to have outgrown some intolerable sounds like the doorbell, others intensified as my brain continued to develop. Some examples include babies crying and dog barking.
Some experts have theorized that it was solely due to my dad’s sudden death in my teens, but if that were the case, how would one explain the extreme auditory sensitivity before he died? How would that theory stand up in the wake of the progress I have made in the 21 years since his death?
I should explain that I have long adjusted to my dad’s passing and the pain is no longer acute. I am now processing my mother’s death, which occurred nearly 3 years ago. My brain has been finished growing for 15 years (I am 37). No new sound issues or intensification with problem sounds since. I think this disproves the psychological theory.
I was 20 years older when my mom passed in 2014 and have had beneficial therapy that has helped me to cope better as an autistic person. I'm not the helpless, inconsolable fifteen-year-old victim from 1994. I am now a 37 year old woman (with severe limitations, yes) who has Biblical insight, and is no longer in a place where she can be harmed and has come to terms with her limitations while celebrating her strengths.
That said, I think the psychological and emotional only theory can be further disproved. Clearly, they factor in any person’s loss of a close person, but in the case of an autistic person, it isn’t the defining factor for brain development.
My autistic symptoms were evident when I was still a 6-month (valuable) fetus. I didn’t experience any psychological trauma in my life until I was 11 and entered middle school. Even then, aside from acute anxiety, my symptoms didn’t change until about age 16, two years after my dad died.
I think the anticipatory anxiety I experience and PTSD do stem from bullying (stalking and harassment as well as physical attack), but that in NO WAY caused autism or sensory processing disorder as I have already pointed out.
P.S. I enjoy car trips, especially long ones. I can even tolerate the rumble strips near tollbooths. I love seeing nature look out the window
rather than plugging in to some electronic device. I love the moving feeling and never have experienced carsickness.
Employment
When I was 16, I got a notion in my head that I needed to get a job. I wasn't ready at 15, when most kids in the U.S.
I wanted a job to prove myself.
Nobody made me go to Office Max for an interview. I picked Office Max, because I loved how office supplies smell. I love to organize things and figured that it would be quiet (I don't know why) in an office supply store.
My mom let me know that there was no pressure from her. I think she was trying to dissuade me without making me feel like I couldn't do anything. She was willing to let me try.
The interview went well. I knew to dress nice and be on time. The man asked me questions like if I was okay with wearing a uniform. Yes. Was I OK with taking direction (that seemed like an odd question to me. I always generally did what was asked of me). Yes. Did I have a set amount of salary? I said no. I didn't know a job candidate had any right to name their own salary in 1996. The man shook my hand and thanked me for coming. I thanked him for interviewing me. I was told I would be called back and was.
I never gave a thought to whether or not he saw me not making eye contact, because autism wasn't on my radar. I wouldn't be diagnosed until 1998.
My mom helped me pick out a few uniforms. I made sure all my chores were done and the VCR set to record shows I would miss while working.
I could not have been more wrong about an office supply store being quiet. And this was before smart phones' blaring ring tones. Few people had cell phones in 1996.
Babies wailed and toddlers tantrumed in the aisles. The acoustics amplified the noise.
I had to check people out, including people whose kids were now crying and tantruming in checkout.
I had to get faster at it.
I was constantly asked if I was counting the cash back to the customers. I was.
The phone rang. I had to answer a phone. I had to give an obnoxiously long, professional greeting giving my name, the store name and asking them how I could direct their call. I wasn't very familiar with using answering machines and wound up speaking to them as if I had caught the actual person. Phones amplify everything, at least that's how it sounds in my ears.
My break came. 10 minutes for a part-timer. I cried the entire time, glad nobody else was back in the small break room to ask me why I was crying.
I cleaned up in the evening and tried to begin memorizing where the inventory was. I cleaned and put stray stock back where it belonged.
I was beyond exhausted when my shift ended. The store closed at 9pm, but my shift was from 6pm-10pm. They wanted me to work 2 hours more and get onto a work schedule that changed constantly.
The next day, the woman who was training me got mad when I couldn't unlock a file that was inside a built in safe box in a drawer. I didn't have the motor skills to twist the sticking combination lock right and left.
I was sent to one of the regular checkouts instead of the central desk and told to keep the candy supply stocked.
Was I still counting the cash back to the customer? Yes.
I scanned the wrong part of several tags and lost the store tons of money in a short amount of time. Fortunately, someone caught it and I didn't get in trouble.
The next day, I felt physically ill. I wanted to hurt myself. I didn't know how to tell my mom that I didn't feel like working anymore. I felt like a class A failure. I didn't know I was autistic. I knew I was super sensitive to many noises, some intolerable (like infants and toddlers screaming and crying), but I didn't know why.
I tried to cut myself, superficially. I banged my head against the wall in the shower. I finally screamed and attacked myself in the car as my mom turned into the Office Max parking lot.
I remember telling her "I just CAN'T do it."
My mom remained the calm and steadfast person she always had been. She drove me home and put me to bed. Then, she called my supervisor, as I was too sick (I'd thrown up and I had a pulsating migraine).
I wasn't fired. I quit on my own terms.
My salary was above the minimum wage by about 15 cents.
I made $52.00 in 2 days.
It didn't turn out to be worth it but at least I tried. I found out what didn't work for me.
I would never work in retail again. I did work from home for a year via DHS, but the funding dried up for at home work.
I was also a cat sitter for one summer back in 2012. I enjoyed doing that as I like cats. I quit, however, when I was promised job security through Christmas and my boss changed her mind. I wouldn't be lied to and be fired unexpectedly.
As I don't have a mom to drive me (and rescue me as she did the time I couldn't turn the key to unlock the door at the place I cat sat) and can't cope with noisy public transportation, I won't be working part time anywhere.
I currently enjoy making stretch bracelets from the comfort of my own home. I can stim in my rocking chair and take things at my own pace. Sometimes, an acquaintance of my aunt sells some of them for me.
My sister (whom I live with) meets all of my major needs and I do get government benefits.
If you are autistic and looking for your 1st job, I would strongly recommend that you DO NOT apply in retail. It is too fast-paced and too loud. The fluorescent lighting in most stores is glaringly harsh.
Don't hate yourself if you don't succeed the first or fifth time. Know your strengths, but also accept your weaknesses. Some can be improved while others can't. I think that is true of all humans. It's obviously harder for autistic people to cope and be productive in a world that is too loud, too bright and too damn fast.
If you are diagnosed with autism, get a case-worker, someone who can help you find a job that matches your interests and strengths along with the most beneficial work environment.
I'm Generation X. I am glad there are more supports than what very little there was back twenty years ago. The Asperger's diagnosis was only 2 years old in the DSM-IV. Oh, and Bill Clinton was president.
I wanted a job to prove myself.
Nobody made me go to Office Max for an interview. I picked Office Max, because I loved how office supplies smell. I love to organize things and figured that it would be quiet (I don't know why) in an office supply store.
My mom let me know that there was no pressure from her. I think she was trying to dissuade me without making me feel like I couldn't do anything. She was willing to let me try.
The interview went well. I knew to dress nice and be on time. The man asked me questions like if I was okay with wearing a uniform. Yes. Was I OK with taking direction (that seemed like an odd question to me. I always generally did what was asked of me). Yes. Did I have a set amount of salary? I said no. I didn't know a job candidate had any right to name their own salary in 1996. The man shook my hand and thanked me for coming. I thanked him for interviewing me. I was told I would be called back and was.
I never gave a thought to whether or not he saw me not making eye contact, because autism wasn't on my radar. I wouldn't be diagnosed until 1998.
My mom helped me pick out a few uniforms. I made sure all my chores were done and the VCR set to record shows I would miss while working.
I could not have been more wrong about an office supply store being quiet. And this was before smart phones' blaring ring tones. Few people had cell phones in 1996.
Babies wailed and toddlers tantrumed in the aisles. The acoustics amplified the noise.
I had to check people out, including people whose kids were now crying and tantruming in checkout.
I had to get faster at it.
I was constantly asked if I was counting the cash back to the customers. I was.
The phone rang. I had to answer a phone. I had to give an obnoxiously long, professional greeting giving my name, the store name and asking them how I could direct their call. I wasn't very familiar with using answering machines and wound up speaking to them as if I had caught the actual person. Phones amplify everything, at least that's how it sounds in my ears.
My break came. 10 minutes for a part-timer. I cried the entire time, glad nobody else was back in the small break room to ask me why I was crying.
I cleaned up in the evening and tried to begin memorizing where the inventory was. I cleaned and put stray stock back where it belonged.
I was beyond exhausted when my shift ended. The store closed at 9pm, but my shift was from 6pm-10pm. They wanted me to work 2 hours more and get onto a work schedule that changed constantly.
The next day, the woman who was training me got mad when I couldn't unlock a file that was inside a built in safe box in a drawer. I didn't have the motor skills to twist the sticking combination lock right and left.
I was sent to one of the regular checkouts instead of the central desk and told to keep the candy supply stocked.
Was I still counting the cash back to the customer? Yes.
I scanned the wrong part of several tags and lost the store tons of money in a short amount of time. Fortunately, someone caught it and I didn't get in trouble.
The next day, I felt physically ill. I wanted to hurt myself. I didn't know how to tell my mom that I didn't feel like working anymore. I felt like a class A failure. I didn't know I was autistic. I knew I was super sensitive to many noises, some intolerable (like infants and toddlers screaming and crying), but I didn't know why.
I tried to cut myself, superficially. I banged my head against the wall in the shower. I finally screamed and attacked myself in the car as my mom turned into the Office Max parking lot.
I remember telling her "I just CAN'T do it."
My mom remained the calm and steadfast person she always had been. She drove me home and put me to bed. Then, she called my supervisor, as I was too sick (I'd thrown up and I had a pulsating migraine).
I wasn't fired. I quit on my own terms.
My salary was above the minimum wage by about 15 cents.
I made $52.00 in 2 days.
It didn't turn out to be worth it but at least I tried. I found out what didn't work for me.
I would never work in retail again. I did work from home for a year via DHS, but the funding dried up for at home work.
I was also a cat sitter for one summer back in 2012. I enjoyed doing that as I like cats. I quit, however, when I was promised job security through Christmas and my boss changed her mind. I wouldn't be lied to and be fired unexpectedly.
As I don't have a mom to drive me (and rescue me as she did the time I couldn't turn the key to unlock the door at the place I cat sat) and can't cope with noisy public transportation, I won't be working part time anywhere.
I currently enjoy making stretch bracelets from the comfort of my own home. I can stim in my rocking chair and take things at my own pace. Sometimes, an acquaintance of my aunt sells some of them for me.
My sister (whom I live with) meets all of my major needs and I do get government benefits.
If you are autistic and looking for your 1st job, I would strongly recommend that you DO NOT apply in retail. It is too fast-paced and too loud. The fluorescent lighting in most stores is glaringly harsh.
Don't hate yourself if you don't succeed the first or fifth time. Know your strengths, but also accept your weaknesses. Some can be improved while others can't. I think that is true of all humans. It's obviously harder for autistic people to cope and be productive in a world that is too loud, too bright and too damn fast.
If you are diagnosed with autism, get a case-worker, someone who can help you find a job that matches your interests and strengths along with the most beneficial work environment.
I'm Generation X. I am glad there are more supports than what very little there was back twenty years ago. The Asperger's diagnosis was only 2 years old in the DSM-IV. Oh, and Bill Clinton was president.