All day I think about it, then at night I say it. Where did I come from, and what am I supposed to be doing? I have no idea. My soul is from elsewhere, I'm sure of that. And I intend to end up there...Who looks out with my eyes? What is the soul? I cannot stop asking. If I could taste one sip of an answer, I could break out of this prison...I didn't come here of my own accord, and I can't leave that way. Whoever brought me here will have to take me home.

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16 May 2009

Stop Insisting I Don't Exist!

After reading "Assumptions, Assumptions" on the blog Normal is Overrated, it really got me thinking about people who repeatedly disregard the experiences of those who are either unique, different, or disabled. 

As mentioned in the blog post above, people tend to assume abilities based on appearances. Living with an onslaught of erroneous assumptions, when a person appears *normal* to others, can lead to great frustration. It's simply maddening to be accused of exaggerating or imagining nonexistent barriers, especially when you are dealing with something that is often invisible (like autism or deafness). 

Experiencing difficulty when it comes to attending to more than one thing at a time, such as having a conversation in a busy area with varied visual distractions, or making change at the store under stressful circumstances, or trying to speak effectively after reaching certain limits are all very real issues common to autistics. 

People who may view an autistic person as *normal*, or who are unaware of the autistic person's autism, may be quite confused to suddenly see flapping hands, staring off into space, stuttering, or rocking in someone previously assumed to function in a specific manner. Stress, chaos, unpredictable environments, and even co-morbid conditions often leech the functionality, if you will, of autistic people. There is nothing new about this fact. What is often at the very core of autism is what is most often misunderstood.

There seems to be a significant struggle to understand how what seems so normal, comfortable, and habitual for the autistic person in one situation can become so foreign, anxiety-producing, and even detrimental in another situation. Again, stressing the reality of uneven skills in autistic people is of magnificent importance. Acceptance and understanding of this concept will hopefully lead to widespread inclusion, respect, and support of autistics. 

In essence, because I present 'normally' in a typical scenario, people make the mistaken assumption that I am neurotypical, and are quite surprised when the autistic quirks start coming out of the woodwork, when they find I can't drive a car even after years of practice, or when they try holding a phone conversation with me and it ends up being made of Epic Failure To Communicate.

The above sentence from "Assumptions, Assumptions" is succinct, valuable, and dripping with daily life struggles pertaining to the prevailing misunderstandings of autistics, especially Asperger's or highly self-determined autistics. Family, friends, professionals, and even society who insist on repeatedly--and incorrectly--pointing out that personal perceived difficulties are imagined are doing little to encourage, corroborate, and empower autistic people. 

Even Hans Asperger was able to pick up on the effects of stress and uneven skills by pointing out that autistic performance is often best under low-stress or spontaneous circumstances in comparison to performance under stress or new situations. Asperger labeled this phenomena as a peculiar sign of 'autistic intelligence.'

On the other hand, Rosalind Oppenheim, former Executive Director of the Rimland School for Autistic Children (now Rimland Services NFP), and the mother of an autistic son, was noted to have said that people who look incompetent, or who are nonverbal, may obviously be highly capable individuals. She further explained that such individuals deserve specific personal attention and insight in order to avoid assumptions based on appearance. 

I'm tired of being told that my struggles are the same struggles everyone deals with. Yes, to an extent, this is very very true. The magnitude of my struggles, however, cannot be easily compared to the average person. Downplaying or making me think my struggles are all in my head, or that they are misconstrued is offensive and infuriating. Unjustly assuming things about autistics can directly lead autistic people toward low self-esteem, depression, compulsiveness, mistrust, lack of concern, and even worse, suicidal thoughts and tendencies. 

Autism, and the traits that belong to it, are very real--whether or not it can be seen--so stop insisting that we don't exist!


  1. Something I think about often, is that for most things, it is impossible to see how much effort a person is putting into something. All you can really see are the results. So if the results are poor people tend to assume there was low effort.

    I work very hard on a lot of things and the results aren't always good. That can be very frustrating, especially when, on top of that, someone assumes I wasn't trying.

    I try never to tell someone "just try harder" because I never know how hard they are already trying. Instead I try to find different ways for a person to try something if I think I can suggest that sort of thing, and it seems like it might be useful to them.

  2. You made some very good points here and I would love it if some day society "got it" but at 45, I have lost faith in the majority of NT's ability to understand "other" neurology . I believe that their own neurology limits their ability to grasp these concepts just as mine limits my ability to multi-task, organize or drive a car . It's an unfortunate reality that they are the majority in power, and as such, control the resources that might offer us a chance to achieve our true potentials but it is certainly not historically unprecedented as "they" have also had no ability to understand other cultures, other genders or any other "other" . To expect them to "get it" seems very optimistic, yet I certainly understand the desire to try and there has been some gains on issues of cultural, gender, sexual preference rights in society because some "others" fought to have rights (if not actual understanding)....I don't think those rights are based on peoples actual understanding of "other reality" but at least an acceptance that there is "other reality" (and "we" lack empathy ?)

    Point is, I believe that those who you are addressing are actually neurologically incapable of the type of intellectual curiosity and applied logic required to rise above their current level of understanding of neurological different realities, be it in cultural, neurological or other influencing factors of human experience . Ironically, I believe through effort, I am able to understand certain "other realities" but am incapable of understanding people who lack intellectual curiosity .

  3. I've been reading your blogs....really well stated points of view about being on the Spectrum!