Autism as disability

my autism is NOT a gift or a simple difference, not an “alternative” I would ever choose.


Yesterday was a mixed bag of experiences, overwhelmed by the loud Christmas music my husband delights in playing this time of year, I figured out that the booming base was what was the most triggering of my anxiety and was able to lower the setting so that I could cope.

I was working next door in the kitchen and the base was simply overwhelming while my poor audio processing garbled all the vocals and left me scrambling to try to keep up with the tempo of the constant change of tunes. This is difficult to explain if you have not experienced it… sound can be simply overwhelming in many ways.
I did better after adjusting the volume and especially the bass settings to very very low.

At lunch my husband spent a lot of time explaining the setup of a “new to him” comedy he has begun watching on TV and really enjoying . His delight at the setup and the performances was so evident!

It was hard to keep the multiple characters sorted in my mind, lots of players in this program.

I generally do not watch TV because the audio and visual input are usually way too quick and my understanding and processing of images gets left way behind.
I confuse characters as soon as the set changes, the location of the characters or the costumes change. (prosopagnosia does not help here!).

I feel I miss out on so much and I see how much pleasure he gets out of some of these programs. Let alone the enjoyment we could otherwise share by doing something together, even as simple as watching his favorite tv programs.
So when spouse invited me to watch his program, meaning to share the fun with me, I agreed.
I would love to spend more time with him and it was so obviously important to him that I appreciate this!
I was able to watch about 7 to 10 minutes of it before I became completely motion sick.

The camera did quick switch and focus for every interchange of the many characters as they spoke.
I had to keep asking spouse for explanations of what the characters were doing, which one was which, etc etc.
I had to beg spouse to excuse me and forgive me, I felt physically sick and growing sicker, nausea, dizziness, headache…growing worse by the minute, although I could see and appreciate his enjoyment of the program.
He was kind and understanding and I don’t think he was hurt or offended since he does understand my perception problems . I think we were both disappointed.

I went to my quiet nest ( recliner in the bedroom where I sleep far away from the TV) and I began to recover and then began to read, but felt overwhelming sadness at the fact that I must be so limited in so many things that might help our relationship build strength and develop deeper companionship and understanding. I have missed so much over the years! We have missed so much!

I was sad, am still sad, for all the missed input I lose by not being able to process videos, movies, tv programs, etc and all the ways that I could have to share time and pleasurable experiences with my partner and others through shared activities.

My inability to process visual activities and sounds related to entertainment and education leaves me far behind many people who use these venues daily with never a thought.

Yes, that is a true disability. Not understanding or being able to keep up with what is happening in “real time” or using these things to enhance and share experiences with others is truly difficult and when I stop to think about it, and I can see so completely the many ways this inability is a huge loss of opportunities, insights, information and shared experiences.

I am stopped, blocked, frustrated, sad and sometimes so very sorry for my personal losses due to my sensory processing problems. I do try not to dwell on things that can’t be changed, but sometimes I am forced to notice how very “different” I am.
Yes, I am disabled . There, I said it!

Today I went to the Facebook page I moderate/admin and somebody had put a huge video up about how ” autism is not a disability, it is just a difference”. I took it down. This is a political football that some autism activists are pushing in many media formats today. You can find multiple posts, arguments and discussions all over the internet. Is autism a disability?
Take a look and decide for yourself.

When I am so different that I must find ways to keep from being physically and emotionally distressed, being both sick and overwhelmed, when I must ask for help to be understood and ask for accommodations for helping me be accepted, to communicate, and to function satisfactorily in ways that others may be able to take for granted, I do not see how in the world this is just “alternative neurology” and NOT a disability.
Perhaps others have more imagination. I simply can not find a way to appreciate that “just different” thing. There is way more to it than that simple dismissive statement.

The videos and writings of this sort are so frustrating and humiliating, they declare loudly that “we are not disabled”, then ask for special attention and accommodations because they are so very different. but it is just an alternative neurology, not something that we struggle mightily with every day in so many ways where others do the same things completely and easily, fully naturally without special setups, supports, accommodations, tools and accessories, special training, programs, etc etc etc.
I think of the autistic individuals who are brothers and sisters of my heart and soul who have so many more struggles than I do, so many really intense problems from intellectual disabilities, inability to speak, or read, or write, I could name a thousand ways so many of us struggle every minute of our lives with our simply different neurologies, no its not simple at all.


Nope, this does not compute. People of all abilities and neurologies deserve respect and compassion, kindness in an ideal world would always prevail.
But to deny that our disabilities are not disabilities at all is to deny our struggles, our painful interactions, our difficulties in doing what comes naturally and more easily to others, and to deny our existence and our histories, our painful interactions of the past, and the very difficult passage through our lives that so many autistic individuals have all our days on earth. That denial is so painful and distressing on so many levels!!!!

My autism is a disability every single day.

I can’t be the only one who experiences autism in this way, even though our individual neurological struggles may be very different.

Autism enrichment

learning enhancement

stimulation for growth or comfort, adding wealth of experience

creating new opportunities for self expression, growing skills,

finding new ways to connect with our world.

When I was a very young child I spent my time in a ‘chair table’ seat which

kept me confined for much of the day. From the time I could sit up until I could walk with the aid of my parents holding my hands, I rarely left that table. My mother was autistic and I was her first child. She was terrified of germs since they brought me home as a preemie of 4 lbs with strict instructions to wear masks and sterilize everything!!!! I can remember spending time in that chair clearly. She would give me things such as measuring cups, spoons, some plastic toy or bits of food whenever I would get restive or call to her. She spent a good bit of time out of sight in another room but I could hear her, and often she had the radio on. The sounds fascinated me.
It got to the point that I was bored and restricted in that chair and began to fight being put into it.
A few whacks on my bottom got compliance at first, but soon after I began to fight in earnest. She finally understood that she needed to do something else with me. I was allowed to roam on the carpet or spent time in my crib with playthings.. when I was ‘free’ I was hit on the hands or the backside if I touched something I was not supposed to. I never understood why I was getting hit, It would come out of the blue and I never associated the punishment with the transgression. (that is another story).
A few times when at the grocery store my mother selected little “wonder books” from a rack and brought them home. She was a very poor reader, but I do remember her reading those books to me and my sister … the presence of my sister means I must have been at least 2 years old. How I loved the books! I was hungry for more books and as soon as I could talk I asked to be read to and asked for books when I spotted them in the stores. By 4 I was reading way above my age level, my first adult book was “Robinson Crusoe” which I found at the back of my grandmother’s closet on a visit to her along with a treasure trove of Will James, Sanford Tousey, and other books for older kids and adults. It is hard to describe the joy that brought! I started kindergarten as a reader but although we were taught words to read on the blackboard (boring, I already knew them) I was not allowed access to library books of the classroom in first and second grade. Instead while all of the other kids were reading, I was expected to work on my very poor penmanship and learning to print in first grade, then to write cursive in 3rd grade.
It caused me such pain to be punished like that. I felt only discouragement, the idea that I could write well enough to be allowed to read was never grasped. It caused me such despair that I struggled so with writing. I would never get to that bookshelf. ( I never did, in those classes) I was burning to get at the books!

About that time ( summer between first and second grade) my mother learned to drive and took us to the library a few times. I was so disappointed that I was only allowed to take out 2 books at a time. Sister could take out 2 books too, so that gave me 4 new books to look at. Soon I was pestering my mother for more trips to the library. I think she dreaded it and had very little interest in it.. it meant she had to read new and more difficult books to us (she was so dyslexic her reading was probably 2nd grade level).
Mother hated books around the house, ( somebody might ask her if she had read them, or ask her questions about them) although she usually had a woman’s magazine for the new recipe and craft ideas/ decorating ideas they contained. She hid my father’s favorite books in the back of the closet and refused to let him leave them around the house.
I read those magazines, and when I discovered my father’s books in the closet around age 10 I devoured every one of them. “How to make friends and influence people”, “Shepherd of the hills”, “Sgt York and his people”, ” How to build your dream home for under $5000.”… What if I had volumes of appropriate reading material instead?

I often wonder what might have happened if I had free choice and help in choosing special interest books and free- will selection of books at that age? I did not get that until I was allowed to walk to the library by myself at around age 12. I had to walk to school and the library was on the route. I came home with armloads of books several times a week.

What if I had been given more input and stimulation during the early years in that chair and in my first explorations as a barely-toddler. What if? ????

Fast forward to today’s children, especially those confined in any of many ways and in care (as are all infants and small children). Are children getting enough input from other sources besides tv and videos and continual exposure to electronic games ?
Are they having adventures in new places, seeing ,touching, feeling, observing, hearing,tasting new things every day?
At that very young age I was a sponge for knowledge, absorbing everything I could. Instead of being exposed to every possible stimulus and source of input, I was confined for the convenience of the adults in the house, shut away for the comfort of the adults, restrained and made to refrain from learning new things by the adults in control at home and at school.
Parents and caretakers may not be aware of the huge thirst for information and the inextinguishable curiosity that goes with many autistic children (and NT children too!)
Imagine nurseries, daycare, schools, institutions for care taking for both young and old people.

I worked in a child care institution before I retired ( most of the kids were autistic) and my mother was confined to a nursing home for the last 6 years of her life. I saw for myself the poverty of input on those “care” levels. Except for one ‘planned craft’ a day, it was videos, tv, music… and not much else, all day every day, even those in very limited amounts. (the kids had school and counselors daily as well).
I have seen the minimal interest in giving input and creative/ self expressive outlets to the residents there. “it just makes a mess” “what is the point?, it is a pain”.
What a desolate and vacant environment! Overworked, underpaid for the most part, struggling with their own lives, caretakers, parents, daycare workers and some teachers may be far less enthusiastic than the would-be participants.
I urge those who might have autistic persons in your charge to consider how lives could be enriched at every stage of living.