The Autistic Distinction by Kathleen Seidel

[storkdok]

The Autistic Distinction

on the occasion of Gayle Fitzpatrick and Charles Rankowski vs. Town of Falmouth

by Kathleen Seidel

Society often ostracizes those whose existence, behavior and experience counters simplistic, unexamined assumptions and expectations. Members of a cognitive minority who frequently interact with people whose perspective is grounded in a significantly different neurological configuration, autistic citizens are often misunderstood and condemned for their difference.

For autistic people, social, emotional and communicative development take place on a more extended time scale than for the neurologically typical. These are inherently challenging areas for which accommodation must be made if we value human diversity and the virtue of compassion.

Autistic people cannot reasonably be expected to exhibit personal qualities and behavior identical to that of their typically developing peers. When difficulties arise, intelligence, compassion and humility are in order, not arrogance, negative judgment and contempt. An autistic person should no more be held at fault for eccentric or challenging behavior in a social environment than should a visually impaired person be held at fault for difficulty navigating an unfamiliar environment. It is inherently discriminatory to scrutinize a person with a cognitive or sensory difference, then to penalize them for the very challenges that accompany that difference. It is unconscionable to employ governmental power in an attempt to enforce such discrimination. It is inaccurate and disgraceful to suggest that contact with persons with cognitive difference poses a threat to others. It is particularly inhumane to inflict such damning judgment upon a child.

Neurologically typical individuals often misconstrue an autistic person's behavior or intentions, since we are socialized to assume that all humans share common cognitive and emotional attributes unless we are exposed to difference from an early age. It has become increasingly apparent over the past half-century how incorrect this assumption really is, and how much suffering has occurred as a result of it. The flawed nature of scientific progress notwithstanding, the proliferation of diagnostic categories for behavioral "disorders" reflects, in part, a collective desire to understand the variety of human experience. Sadly, discussion of this variety tends to be freighted with the assumptions of psychiatry and traditional educational institutions, which too often throughout history have served as agents of social control rather than facilitators of human development. Too often and too shamefully they have defended the philosophy that those whose development takes an unusual path, whose dependency needs are greater than others, and who do not function efficiently in the prevailing socioeconomic environment, are inherently defective and inferior. The language of pathology is the language of invidious comparison insofar as it focuses on "abnormality" and "deficit" defined in relation to a far-from-universally-applicable standard of functioning.

Those who value compassion must work to change the content and tenor of public discussion about cognitive difference. We must consider the values and attitudes that shape our responses to autism so that we can improve our relationships with autistic people, and help promote a climate of mutual respect in which we can all thrive. We must consider the negative impact on autistic citizens of the popular practice of referring to autism as an "epidemic," a "tragedy," a "plague," a "devastating scourge," a "catastrophe," or a "demon;" of the use of military metaphors such as "killing," "attacking" or "defeating" autism, and description of autistic children as "prisoners of war;" of comparison of autism with degenerative diseases such as cancer and diabetes; of the use of verbs such as "fester" to describe the autistic pattern of human development. Indeed, recognition of autism in a family member has a deep impact upon the entire family, and the challenges inherent in supporting people with challenging behavior are profound. Many parents experience the unveiling of autism as a grievous revelation. However, I am convinced that the negative impact on families and on autistic persons is increased and perpetuated by crisis-oriented descriptions of autism that focus on abnormality and deficit, that automatically characterize early education as a heroic "intervention" if the children being educated are autistic, that raise the specter of institutionalization simply because that is the way society has tended to address cognitive difference in the past, and that describe autism as something that must be destroyed.

Assertions that autism can and must be "cured" create unrealistic expectations, promote the exploitation of parents made desperate by dire predictions, and perpetuate a climate of negative judgment towards children and adults who are not or do not strive to become "indistinguishable from their peers," those who look and behave like the autistic people that they are. The insistence that autistic citizens must modify harmless idiosyncrasies for the comfort of others is unreasonable and oppressive. Such idiosyncrasies often serve a productive purpose for the autistic person. Placing the burden of adaptation on autistic citizens only serves the purpose of enabling others to avoid the discomfort of confronting their own fears, their vulnerability, and their destructive attitudes towards difference.

We are living in a time when many adults have recognized their own autism. Concurrent with this expanded awareness, the Internet has offered autistic citizens unprecedented opportunities to communicate and to establish relationships in a manner suited to them. The experiences of autistic citizens from childhood to adulthood are conveyed in hundreds of autobiographical writings available in print and online. These must not be casually dismissed or trivialized as "isolated accounts" or "anecdotes." The fact that an autistic person chooses to communicate must be respected, rather than cynically regarded as an invalidation of their autism or evidence of self-aggrandizing intent. The fact that an autistic adult has acquired skills since their childhood and has developed over time should also not be regarded as an invalidation of their autism. The testimony of autistic citizens must not be disparaged because of their diagnostic status or presumed level of mental stability. The revolution in the capacity of autistic citizens to communicate their experiences, needs and desires renders outmoded concepts of autism that focus only on incapacity rather than development and constructive adaptation through the lifespan, and that are based solely on observation of individuals who have been subject to lifelong professional scrutiny and speculative interpretation.

I seek a reconceptualization of cognitive difference, to the end that those who bear now-stigmatizing labels of "deviance," "disorder" and "syndrome," may live and manifest their individuality, distinctive interests, gifts and capacities with integrity, in a manner that comes naturally to them, free of pressure to become people they are not, free of the automatic assignation of inferior status; and that they may enjoy the respect of their fellow citizens, rather than disdain and exclusion.

Retrospective consideration of the lives of exceptional human beings offers credible evidence that the autistic distinction has persisted throughout history, and has been a valuable element of human culture. Genetic research indicates that at least twenty different genes can signal a predisposition to autistic development; autism is pervasively embedded in the deep structure of humanity. Psychological research indicates that autistic characteristics constitute an identifiable pattern of traits that are present in varying degrees throughout our entire species.

Autism is as much a part of humanity as is the capacity to dream.

20 August 2004

[storkdok]

Oct. 26, 2007 at 7:57 AM I am posting this for understanding.  Just because NTs make assumptions about me and my motives doesn't mean their assumptions are correct.  Please treat me like you would treat your own child as a grown up.  Would you tell your own child that they have too big an ego, that they are selfish, egocentric?  You know nothing about how we think.  So don't make assumptions. 

Karen

(Original Poster)

[XSPECTRUMKAREN]

Oct. 26, 2007 at 8:42 AM

Kathleen has exposed some of the ugly underside of our 'battle" against Autism. Parents of NTs are guilty of some of these things too. They have a child who is developing normally, but they still push and worry and try to perfect their kids. If you throw a child with an ASD at this kind of perfectionist parent, they do seem to go to extremes. Our children with ASDs are children first. They need time to be themselves and to grow and learn from their own play.

We do need to be more accepting as a society. I am sorry that there are parents who feel compelled to "modify harmless idiosyncrasies" in any child. Some behaviors are dangerous and others are very rude and stigmatizing and I think that that all children should be taught acceptable replacement behaviors.

I recently read an article advising parents not to focus on their child's symptoms. Instead we should devote our energy to their impairments. I think this may be the place where parents can meet their AS children on common ground. What do you think?

(The other) Karen

[storkdok]

Oct. 26, 2007 at 8:55 AM

I agree with you and thanks for reading and responding to the post.  I think NTs actually are incredibly obtuse as to how their autistics think and why, they mostly want change a child to an NT way of thinking, instead of accepting their differences and actually finding out how they think.  I am getting really tired of being told there is something wrong with me because someone projects their assumptions onto me, which aren't even correct.  If you are an adult, they criticize you for something you don't even understand or see their way.

NTs are worse at theory of mind for autistics, they usually don't even try to understand our way of thinking or motivations and then blame us for their deficit in theory of mind.

(Original Poster)

[mitch576]

Oct. 26, 2007 at 9:34 AM

i wish i had your way with words. i try to explain these things to people and i either can't word it right or they just don't get it.

great post!  i often explain it like this.... to devin there is no such thing as sensored honesty.... there is only honesty and you can't blame the kid for wanting to be honest.

[ZaMaJoMom]

Oct. 26, 2007 at 12:44 PM

Thank you, Karen (and Kathleen).  We all have so much to learn, and then, to teach!  It's just so big, I often get overwhelmed and don't know where and how to begin.  I think I am NT, but I am rotten at talking to people face-to-face, yet I can express myself fairly well in writing.  And in most situations where I need to advocate for my son, it's in person, so I just don't seem to get my point across very well.  Handing people things like this article doesn't guarantee they will read or understand it.  But, I keep trying!