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.

7 thoughts on “Autism as disability

  1. I’ve spoken with another autistic friend about this, and I can see the truth in both sides. Autism (and ADHD) has been both a blessing and a curse in my own life. It has gifted me a creativity and quirkiness that I can now enjoy (not so much as a child trying to fit in), and enthusiasms that have become livelihoods. However, it has also left me with sensitivities, social deficits, and information processing difficulties that at times have made my life miserable. And in my work with autistic people who also have intellectual difficulties, I see how it can really affect their happiness. Maybe it’s somewhere in between, or both.

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  2. My mother and I both had slow processing disorders when it comes to tv shows, films, etc. (Also slow processing or fragmented processing of social interactions and conversations). I recall that for decades, whenever watching tv with her, she was always asking what happened or what this or that meant. She relied on my dad to explain the tv show or movie to her.
    In my 60’s, It has gotten to this point for me:
    I watch tv shows with the “closed captions “ feature. Or… I record programs and movies. Then I watch them over and over until I finally get the full gist. …or I guess buying DVDs of shows and movies also provides a “take your time digesting it” benefit.
    It has been a lifelong disability when it comes to social interaction. My mom had very few, and sometimes, no friends in her life. Same for me. When real life is unfolding before you but you can’t decipher it at the speed of life…you are at a loss.
    I even watch recorded shows with closed captioning over and over.
    I do think there are benefits to being an autist that “normal” people will never grasp. I think adult autists have an innate, childlike ability to enjoy the simple things in life that “normal” adults miss. I believe that we autists find joy or satisfaction in our chosen pursuits.

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  3. I really think it’s just a function of where we are on the spectrum and the fact that some people diagnosed with autism are blessed with fewer sensitivities and greater gifts in the areas of communication and the ability to form and keep friendships. The luckier among us have had fewer traumatizing experiences and require fewer interventions to successfully navigate the world. My eldest living sister also has autism, but it’s undiagnosed and expressed differently from mine. She has better executive abilities, almost no sensitivities, perfect pitch and a fantastic singing voice which she has parlayed into employment and friendships in the tight knit music community. People have always accepted her quirks because of her talent and upbeat personality. I got a high IQ but also a boatload of sensitivities and no special talent that would draw people to me. I have a downbeat personality and have suffered from mild to moderate depression my whole life. None of this draws people to me and I now have no friends, just church acquaintances and fellow workers in ministry. If I didn’t have my dear husband I would feel adrift and very lonely. I consider myself disabled by my autism because I had to quit work fifteen years early due to my perfume and chemical sensitivity, but my social deficiencies are every bit as disabling. My sister would never consider herself disabled, and her gifts, such as perfect pitch and others were always seen by her as abilities that set her above others even though she never used the phrase “superpowers.” So, the way I see it, it is truly a spectrum, and where we are on it, that determine whether we are disabled, (and perhaps in need of supports) or gifted and able to rise to a level of functionality that approximates normal abilities.

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  4. This has touched me deeply. We are a retired couple. My husband is a person who loves to chat. He goes to town several times a day and comes back, sometimes hours later, and talks excitedly about who he has met and where he has been. I’m pleased for him, but would hate it personally. I spend all my spare time, weather permitting, working alone in my garden. Any social invitations he attends alone as he knows how stressful these occasions are to me. He understands my dread of Christmas every year for this reason. He no longer plays music in the house, as it is very irritating to me, and we both want to avoid my horrible meltdowns at any cost. He has his favourite tv programs and when he has watched them, I enter the room and he goes elsewhere to read while I may watch a gentle movie. I heard from a recently widowed woman, my age, that she had regrets she had not spent enough time talking, and just being with, her husband. This hit me like a lightning bolt!

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  5. I agree completely. I’d been disabled by chronic illness for most of my life before my autism was diagnosed in my late 30s, and I ‘d found it valuable both politically and practically to acknowledge myself as disabled. I don’t get to choose not to be a disabled person, but I have chosen to be an activist.

    Not everyone has to do that, but it’s frustrating to see so much of the discourse on the issue being driven by people who are clearly ignorant at best and dismissive at worst of the very disability justice and cultural movements that they, and we, benefit from. Worst of all is the ableism that boils down to “I won’t use that word because I don’t want to be associated with developmentally disabled people.”

    So I was dismayed when I joined the autistic community online and discovered how many people are desperate to distance themselves from both the language and the political identity of disability.

    If someone feels that they personally do not experience their own autism as disabling then that’s fine, and I’m glad for them, but they do not get to unilaterally claim that autism in general is not a disability, and would do well to reflect on how the lifetime we have all spent soaking up society’s ableism might be an unconscious driver of their reluctance to be associated with us disabled people.

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  6. Debra I agree. I also feel that my autism is a disability every day, and my success in life is all about managing around it as an invisible disability that ends up making me look bad socially. I am thankful for discovering the autism while I was still in my forties, but it took about ten years for me to learn what autism entails and how that relates to my struggles. I can’t think of any positives I get from it. Maybe I will think of the positives much later – after this is already posted – haha! I appreciate all your posts/articles and how you touch my heart so often. Thanks!

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  7. I also see my autism as a disability. I’ve tried to see it as a difference, but it’s too disabling for me.

    Regarding TV, I tend to watch mostly DVDs of stuff from thirty years ago or more. I thought it was just a taste thing, but lately I wonder if I find modern TV/film too overwhelming in terms of camera work and certainly of dialogue.

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