“Will People Actually Get It…” by Buck Nation on Thursday, February 3, 2011 at 8:12am
My very good friend and colleague Leonora Gregory~Collura, ANCA founder, in B.C. Canada, posed a wonderfully thought provoking question to all of us. I know many will believe this is pointed directly at the Autistic Community. However, really look at what’s being said. Here’s the question she posed: “Will people actually get it that we (autistic people) are human ? Interested in your comments and why you think awareness campaigns are not run by autistic people for the most part.”
Here’s what I think. It will take some time. The world of people, in general, are used to, in many cultures or civilizations, that there must be sub-human people…people that exist who are “less than” them. There will always be the frame of thinking that a group of people are “destined” to be “the subjects” or “peasants” of an elite. The people who are enslaved, literally and figuratively by this theorizing, will always be and feel put upon, disenfranchised and ignored. Until we, as the autistic (and caregivers of the autistic), find it within ourselves to push for “complete” unity (among ourselves), pool our resources (much like the elite do), thus creating our own power, we can (and I think it’s already happening) effectively start our own campaigns, non-profits, businesses, branding and marketing that is more mainstream. We will get the attention of the general public, the minute we all decide “it ain’t just about US.”
We can’t be in the business of segregating ourselves or our children as “the other people”, any longer. We ARE mainstream! Always have been. Many autistic people have discovered, innovated and invented many things in our society that we, now, can’t or won’t live without. We ain’t that different from everyone else. If anything, we hold the keys to a thinking process that allows us to survive where other people may decide they’ve had enough. We’ve got to convince the general public at large that autism is NOT the new AIDS. Too many who control the marketing, the purse strings and the “language” surrounding “awareness campaigns”, have marketed (and successfully branded) autism as the scariest thing that can happen to a child or their family. With this “cleverly marketed” branding, autism took off as the next big boogy man for the general public, corporate business and governments to dump billions of it’s dollars in an effort to eliminate it.
I’ve been saying for years, we’ve got to be better, more innovative marketers of the “new language” that needs to be spread about the Autistic Community. One reason it seems to be so painfully difficult to break through is that many, even in the Autistic Community, have decided to draw lines in the sand. Example: Brain injury is just that. If autism symptoms are caused by a medical physician’s incompetence, that’s a cause. If similar symptoms are caused by a reaction to medication or vaccine injection, that’s a cause. If it turns out autism is genetically running throughout one’s family, that’s a cause. Whatever the cause, we need to address those issues TOGETHER. If you’ve discovered a way of living that reduces or “recovers”, as some have put it, your child or yourself, be proud of that and move on with a healthy life. What works for your (or your child’s) body chemistry may not work for others. By all means, share your unique discovery with friends and family, but, please, don’t become a “snake oil” peddler touting you can “fix” all autistic people. I know that if I eat Jasmine rice, fresh veggies, tuna and drink plenty of water, my internal inflammation, head pains and some sour moods will be dramatically reduced so I can live as full a life as possible. I’m not gonna recommend that to others. It’s kinda bland, to tell the truth, but, it works for me.
None of what I’m saying is P.C., but, I think, it needs to be said. The louder voices are simply better at marketing and branding. We need to understand this dynamic and push past the labels. That’s the life we all want; to be recognized as the autistic people we are, but, in a “mainstream” way. Branding and marketing…both of these things require funding and a recognition that people are only persuaded to believe something, if it appears…well…believable. Many people find it hard to conceive an autistic person can be a multi-platinum record producer, because, the counter branding and marketing claims being autistic is the worst thing that can happen to a person. I want to see a commercial at length about THAT guy or gal! I want to see them in their element…doing the thing that makes them a uniquely gifted asset to our society. That will make an impression on anyone. Proper marketing and branding can instill respect for a product or service. It can, also, cement, in the minds of the public, who the real authority is in a particular field or on a particular subject. Let’s brand ourselves as the experts. Talent shows and poetry readings are cute, however, we’ve got some really talented and well respected people in the Autistic Community that deserve to be invested in and given a good marketing push, so, they can shine. This can be the catalyst that promotes the positive about the entire Autistic Community. We need to find ways to employ autistic folks, like some already have done. We are more of an asset than a liability.
We all need to have as frank a discussion about this issue as possible. The ugly perception of being an autistic person will not go away until regular exposure to autistic folks, across the spectrum, is done on a regular basis, in the mainstream media. However, we’ve gotta be more than characters portrayed by actors in television shows or mini-series. Movies are cool, too…for a minute. Then, everyone moves on to the next “cool” thing. We don’t need to be a Hollywood fad. We don’t need to become part of the autism cottage industry (profit or non-profit) that strips the dignity and finances of parents, caregivers and individual autistic people. We know how cool our stories are. We know how awesome our journey’s continue to be. We need to make this real to people in a way they can digest it. Sound bite this thing! Let’s put our collective heads together and not make this a movement about showing ourselves separate or better than. That’s prideful. That won’t get us anywhere. Our greatness will come from unification (becoming one true voice), reasoned marketing and the authoritative branding of who we really are. I know we can do this. Talk to me, somebody! Michael “TheBuckNation” Buckholtz ☮
Michael plays at a spontaneous autistic people run awareness campaign Gibsons, BC, Canada, July 2009
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Coming soon
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Adults With Autism May Not Understand Others’ Intentions
They tend to judge other people’s mistakes harshly, study finds
Posted: February 2, 2011 – this was an email to ANCA from one of our parent networks, so I decided to share it with our online fb community and below in comments you can read the thread of interaction from the autistic adult community.
This lack of understanding tends to make adults with autism, even those with high IQs, judge others more harshly, which may pose problems in forming and maintaining relationships, the study found.Researchers from Massachusetts Institute of Technology asked 13 people with high-functioning autism, such as Asperger’s syndrome, and a mean IQ of 120, as well as 13 neurologically normal adults to answer questions about moral quandaries in which a person meant well but ended up doing harm.
In one example, someone intended to put sugar in a friend’s coffee, but it turned out to be poison. In another, two friends are kayaking in jellyfish-infested ocean waters. One friend had just read that the jellyfish were harmless and suggested they go for a swim. But then the other was stung and died.
People with autism came down harder on the person whose actions caused the harm, while those without autism put more emphasis on the person’s good intentions.
“Adults with an autism spectrum disorder were less likely to take that intention information into account than a neurotypical person. They were more likely to make a harsh judgment of that person and less likely to forgive,” said study co-author Liane Young, a postdoctoral associate at MIT.
The findings are reported in the Jan. 31 online issue of the Proceedings of the National Academy of Sciences.
Every day we have to make judgments about other’s intentions, whether deciding how upset to get about an insensitive remark or a co-worker’s slip-up.
“It’s really important to be able to think about people’s thoughts, beliefs and intentions, not only to make moral judgments but to figure out what they are doing and why,” Young said. “To really understand people, it’s important to know what they are thinking and intending.”
The ability to discern other’s intentions, desires and beliefs is called “theory of mind” and typically develops at about age 4 or 5, according to the study.
In a classic example, a child is shown two dolls, “Sally” and “Anne.” The experimenter puts on a skit in which Sally puts a marble in a basket. While Sally isn’t looking, Anne moves the marble from the basket to a box. The experimenter asks the child where Sally will look for the marble when she returns.
Knowing that Sally will look in the basket requires understanding that others have beliefs that may differ from our own.
Previous studies have shown that children with autism develop this ability later than other children, if ever, Young said.
But what’s been difficult from a research perspective is that adults with high-functioning autism develop means of compensating for their social difficulties and would almost certainly be able to figure out the question involving the dolls, said Clara Lajonchere, vice president of clinical programs at Autism Speaks.
Researchers have had more difficulty assessing the more complex, nuanced skills required in making social judgments, something this study does well, Lajonchere said.
“The individuals with ASD [autism spectrum disorder] weighted outcome more highly than intention,” Lajonchere said. “The ASD group did not reliably judge accidental versus intentional harm.”
Yet, in many ways, people with and without autism were fairly similar. Given other scenarios, such as having bad intentions and causing harm, or having bad intentions but inadvertently having a good outcome, both group’s answers were similar.
And there isn’t necessarily a right or wrong answer to how readily we should forgive or give another the benefit of the doubt when they’ve caused harm to someone else. Even those without autism vary greatly in this capacity, Young said.
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I really liked “Buck Nation’s” post. I agree, Autism is not just something that needs to be cured, and we all have our different strengths and weaknesses. Sometimes I think “society” decides, by what jobs are available and what personal attributes in people are more or less “socially acceptable, what it means to be “disabled.” I do also agree, we all need to go with our strengths and be allowed our own chance to “shine.”