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.