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A Seat at the Table, with or without “Manners”

January 2, 2014

As we begin 2014, Autistic adults still have virtually no place at the tables where the decisions that radically affect their own lives are determined. There remain many major reasons for this. To name just a few:

– The assumption that autism is predominantly a new epidemic. Therefore there are almost no autistic adults. This belief still predominated despite the fact that recent studies acknowledge what autistic adults have known all along: that the adult autistic population closely matches the child one, differing predominantly in a dramatic increase in correctly diagnosing the younger generation.

– The assumption that the vast majority of autistics are at the most disabled end of the spectrum. Google the phrase “feces smearing” and the second listing is “feces smearing autism.” The public perception is that if you can interact with neurotypical people in most any you can’t be autistic. The reality is that autism is a spectrum disability and the vast majority of autistics are in the middle of the spectrum bell curve.

– The assumption that even if you are on the spectrum, if you can type you are “Not Like My Child” (“NLMC,” see below), and therefore have very little if anything to offer about “truly autistic” children.

– We all know that raising an autistic child is very hard, so hard that someone without an autistic child really cannot begin to understand what an “autism family” is about. Even if that person is autistic and grew up in an autism family. Even if that person is autistic and the parent of an autistic child.

I could go on, but I’ll stop here.

Autistic adults (and children!) who have overcome the extreme prejudice against them, overcome being viewed, taught and interacted with as if they were poor versions of neurotypical people, overcome the lack of understanding about autism in general and their own needs in specific, and survived through sheer determination, are told that they cannot possibly understand what parents and their autistic children are going through. This is referred to in the autistic community as “Not Like My Child,” and is used to justify completely ignoring autistic input.

It’s important to note that even autistic adults who would be determined by the vast majority of non-autistics to be severely disabled, such as autistics who are non-speaking and/or do not have bowel control, are also subjected to the NLMC dismissal by parents.

But for any non-speaking autistic child, the amount of change that non-speaking autistic adult activists have instigated cannot begin to be measured. The activist phrase “Presume competence” has allowed an unknowable number of non-speaking autistics to be given the opportunity to type instead of speak (a neurotypical harmful assumption that people “should” speak was the holdup). What so many have then communicated has begun to change the understanding of “severe” autism from children and adults who are “locked away,” to people who need the right tools to communicate and meet their own needs.

As the new year begins, it remains crucial to note that the world’s largest autistic “advocacy” group, as we all know, has not a single autistic person in a decision making position. This remains the case even though autistics are, among other things, serving on Federal commissions after being appointed by the President, and playing decision-making roles throughout the world.

I think most anyone today can agree that if this were occurring in, say, a women’s organization run completely without women…well, that could never happen now. But although change often come late, it does come. The first Black president of the NAACP was not elected until 1971. This was when I was in high school, not in the “distant past.” Autistics want the idea of autistic advocacy that excludes autistic people in major positions of authority to be as absurd to the common conscious as an NAACP without Black leadership or women’s organization run exclusively by men.

Non-autistics are just beginning to meet autistic people *on their own ground* so that the autistic minority can thrive to the best of their abilities. Many more autistics are being given the opportunity to be display their different- but extraordinarily important- skills and abilities because of the adult autistics who paved the way by refusing to stand for the status quo.

It is widely stated in marginalized communities that “advocacy starts with ‘No’.” This means that people can never advocate for themselves unless they can say “no” to the unjust treatment they are receiving.

In many conversations in which autistics and non-autistics participate, some autistics are predominantly speaking to their peers who have not learned to say “no.” The are speaking to peers who, as a result of assumptions about them and interactions based on those assumptions, have a hard time not being “nice,” not being silent, not being compliant. This often comes up most profoundly in areas where autistics and non-autistics tend to hold extremely different opinions, such as the widespread use of traditional ABA therapy.

In all civil rights struggles, it has always been a diversity of approaches that is most effective in creating change. The idea that the group whose rights are unrecognized can obtain these rights through gentle discourse is a myth that is trotted out by the unyielding majority. The standard example used by the majority is Gandhi’s “non-violence.” But non-violence did not mean non-confrontation. Here’s a common discussion of this:

“Gandhi was always on the offensive. He believed in confronting his opponents aggressively, in such a way that they could not avoid dealing with him.”

Non-autistics will see some autistics respond more confrontationaly on sites frequented by autistics and non-autistics. They will see other autistic respond less confrontationally. Either way, confrontation is absolutely required if change is indeed to occur. A recent example of this is the group “Act Up!,” which was extraordinarily successful in using extremely aggressive but non-violent methods to change the course of the AIDS treatment.

To date, I have never seen an example of an autistic person using violence to advance the cause of autistic civil rights. We who are not autistic, whether we are parents, friends or interested parties, must understand that the course of change is difficult and filled with struggle. We need to comprehend that it is in our own best interest, as well as in the best interest of the autistic people we love or know, that we acknowledge this extraordinary struggle and stop insisting that a marginalized group put our feelings first. That is truly in nobody’s best interest.

– Rob Gross

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  1. I am on the spectrum, and I just want to say, thank you for this.

    • rgross7 permalink

      Thank you for commenting. It’s a privilege to be involved with such an important struggle.

  2. You know, I read things from so many people who are not autistic yet seem to have so much to say about autism. They shove words into our mouths, they tell us we want red when we say we want black, and they expect us to compliantly participate in our own genocide.

    My journal, which I am commenting from so anyone can confirm what I am saying now, is full of expressions of anger at and the desire for dire retribution against such people. It is written straight from the heart. That is, I believe if I could turn my feelings into weaponry, as one character I write does, curebies would become an endangered species.

    So when I say thank you, Rob, for writing this, I mean it from the bottom of my heart. I wish to share with you a Douglas Adams quote that a lot of idiots who think The Hitchhiker’s Guide To The Galaxy was originally a novel bring to mind. It is of course well known that careless talk costs lives, but the full scale of the problem is not always appreciated.

    The peoples of Proxima Centaurii, if they are watching this whole mess with curebies, are probably writing those words on every bit of paper they own.

    Before I go, however, one thing: I feel a lot of things as a result of my involuntary involvement in this struggle. Privileged is definitely not one of them. I feel it is more of a test, and one that is being failed for me by a lot of people who would rather be comfortable than fight.

Trackbacks & Pingbacks

  1. A Seat at the Table, with or without “Manners” | For Love of the Mainman……
  2. Moral Compass: Take #PosAutive Action and #BoycottAutismSpeaks « A Quiet Week In The House

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