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

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

Take Offense, Create Change

I read a post recently in which the author imagines creating a “grand new conference consisting of members of the disability community of all stripes” including disabled people, their parents, professionals, writers and journalists.” He continues, “This mythical conference of ours would have only one rule. No one would be allowed to be offended” (emphasis added). The author states that by following this rule, “no one [would be] silenced…dismissed… [or] called out for the way they make their argument.”

In response to this post, many parents of disabled children commented on how refreshing this would be. However, numerous Autistic adults took strong exception to this, as did some parents. Why? What could possibly be wrong with allowing people to speak their minds without restriction?

Two weeks ago, one parent did just that. On her Orange County Register blog, Jo Ashline, the mother of an Autistic child, said that she wanted to tell autism to “suck it.” This provoked a firestorm of criticism from Autistic adults and others in the autism community.

Later, in a courageous display of self-reflection, Ms. Ashline went on to answer the “no offense” question herself. Her Evolution of an Apology post is essential reading for those interested in joining together to advance the needs of disabled individuals. Here’s a brief summary:

I wrote something that others found offensive and I came back and said… “Who gives a damn? But it is the comments of anger and hurt that have been keeping me up at night. I’ve been taught my entire life that hurting others, even if you didn’t mean to, is wrong.

[But] instead of coming out and saying “I’m so sorry I hurt you,” I’ve written long-winded posts trying to excuse myself from the fact that I said something hurtful to a large group of people. Fellow human beings. Dammit that’s just not how I choose to live my life.

I’m so sorry.

Thank you, Jo. Thank you for working so hard to hear, listen and change. Thank you so very much for listening to others who were offended.

Unfortunately, many people commenting on and off Jo’s site continued to see no reason for the apology. As one commenter stated, Jo “didn’t say anything wrong and neither did any of us parents who hate autism.” I certainly can understand; I used to feel similarly. But I have come to understand things differently.

As I’ve come to see, telling autism to “suck it” expresses a well-intentioned but seriously flawed desire. The healthy desire is for our children (or clients or friends) to live happy and fulfilling lives. The irreconcilable flaw is that autism cannot be “extracted” from a theoretical person to enable some “other” person to emerge. There is no other person. The only, and best, person is already there: an Autistic person.

Autism is a disability, not a disease to be “cured.” I don’t think anyone would mind hearing “I want to tell small pox to suck it,” because small pox is a virus that invades the body, makes one ill — or dead — and goes on to infect others. No one would have a problem with “hating” small pox, or “walking for the cure” for small pox. Or telling small pox to “suck it.”

The Autistic adults who responded with such offense to Jo’s original post did so because they experience themselves as Autistic in the same way they may experience themselves as white, African-, Latino- or Asian-American. Autism is a constituent of who they are, not an outside invader that has taken them over and someday may release them from its spell.

We are still at the very beginning of the Autism civil rights movement. Consider the “no one would be allowed to be offended” concept for a gathering of gay people, their parents, writers etc. at the beginning of the gay rights movement. The way gay people were considered then was quite similar to the way Autistic people are discussed today: there was a search for a method that would cure gay people of their “disease.” It was only when the gay civil rights movement took flight, and gay people themselves rose up and contested their treatment, that gay rights began to become established world-wide.

Of course, being gay is not a disability. But there are groups within the disability community that have historically fought for their rights. One such group is the Deaf community. There is a strong culture and a long history of civil rights struggle by Deaf people. As one result, it would be the rare parent of a Deaf child who would say that being Deaf “sucks.”

The same kind of civil rights awareness is occurring today in the Autism community. Autistic people are refusing to be consigned to second-class status. They are speaking out for all Autistic people, irrespective of level of ability, to gain better services and support, to implement laws against discrimination and warehousing, and to raise the quality of life for everyone on the spectrum.

It is an impediment to this struggle — a struggle in which parents have a great stake as well — to ask Autistic people not to “get offended.” Offense is the first step in creating change. If a minority member is not offended by being discriminated against — if it’s ok to sit in the back of the bus, or be arrested for intimate relations in one’s own home — then there is no change and nothing improves.

As parents of Autistic children, we need offense to be taken. We need to be offended ourselves whenever an Autistic person, child or adult, is left out of the conversation. We need to join with Autistic advocates, who face serious struggles themselves.

Consider this cautionary example. In the 1940’s, Black children, given the choice, preferred to play with white dolls instead of Black ones. Black dolls were “undesirable.” Clearly, negative attitudes toward African-Americans had been internalized by Black children. I thought this had changed today, seventy years later. But it has not, not really and not enough. The effects of internalized oppression are extremely destructive, and linger far longer than we might wish to acknowledge.

Autistic people must no longer be told they are undesirable, diseased or in need of a cure. It is the moral obligation of every person in the autism communities to help the Autistic civil rights movement succeed.

First posted on 3/5/12 at Thinking Person’s Guide to Autism