Dynamite of Discord: The Responsibility of Influencers in the Autism Culture
Empowerment comes with responsibility. Now, more than ever, as autistics become empowered, and meet together in thousands of circles on social media, in coffee shops, at festivals and conferences, we must acknowledge that our voices will affect generations of autistics to come. As autistics, we must recognize our own ideals, familiarize ourselves with what is right and wrong, and apply our sense of fairness in all our actions.
In truth, there are a lot of us out there who are just coming into “autism,” either as adults recently diagnosed, individuals who are coming of age, or children growing into young adults. Either way, last word spoken, autistics were somewhere between 1% and 2% of the population. Some of us are newbies boldly seeking out new information, others are overflowing with data whilst scrimmaging to decipher new input, and still more, skimming the surface of a newfound mystery. We come in all ages, all shapes and sizes, and a variety of styles—including our personality, background, ideals, skills, and presentation to the world.
We are as multicolored and multifaceted as a lounge of chameleons spied through a kaleidoscope. And each of us, at our own pace, with the help of the collective, is finding a place of individualized and unique self-empowerment.
What is self-empowerment? Empowerment of one denotes the concept of self-actualization and the act of influencing society and culture. Self-empowerment can be compared to a valiant inner quest of enlightenment through creative expression and a pursuit of knowledge. For an autistic, self-empowerment might include the want to give back to the autistic culture in some way or form.
The aftershock of self-empowerment—of gained insight, knowledge, confidence, and honing of creative gifts—can be dynamically powerful. Self-empowerment has the potential of a dynamo effect. Indeed, such self-instilled power can fissure through granite. Ideas can burst through—powerful voices of movement. Empowerment can serve as a means to lift others up and also as a means to push others down.
No doubt, when anyone finds themselves in a place of power within a marginalized community, such as an autistic leader of an organization of autistic people, they have the capacity to serve as a great influencer.
Why is this? Because “marginalized” people, by definition, are in search of a collective voice and power. We, by our very nature, are vulnerable to outside influence. As an oppressed culture, we are prone to grasp at straws, reach out to anything (or anyone) that might feasibly help. Particularly important to an oppressed people is gaining the tools to instigate change and power, disprove stereotypes, and decrease saturated stories told by others that are not rooted in that defined culture.
Like it or not, if you are autistic, you are the role model of our time. And what you say and how you convey your message is a direct reflection of our autistic culture. As is such, today, as we come into our identity, self-empowerment, or leadership, we need to embrace one another and provide within our clan an incubator of acceptance, the warmth of a homecoming. As we usher in the fragile, chrysalis-birthed autistics, it’s not time to demean, shame, or put down. And, as we gather round the community leaders, it is not time to berate them publicly.
Unity is important, and acceptance, equally vital. And seated front and center, the want to do no harm to members of a culture that have repeatedly been invisible, stepped over, stepped on, and made into something they are not. In hindsight this is obvious. But alas, in the here and now, our actions are not always transparent to self.
Sometimes, as oppressed people in the process of wanting to hone our own personal power and pave way for major change, we forget how the thunder of our cause can shatter the very people we are wanting to assist. Sometimes we get lost in our own ways. But remember, how we treat the meekest of our tribe is a direct reflection on our strength as a whole. How we treat the person to our left, to our right, and standing smack in our way, is a reflection of the heart of our collective.
We each tread as unique creatures, some lions, some hawks, some doves—still we each move. And in our moving, we must remember what we pass and whom we step on. We must take care to not, in our great passion, devour those in our way. We must remember the mark we make and make ways for adjustments and apology. Our movement should not be at the expense of anyone. Our cause should not create separation within our own people.
We are a community with a unified cause of autism awareness, understanding, and, ultimately, acceptance. Some of us are carried through our day on the wings of our potential, in the hopes of our future. For some, the autistic community is all they have. For others, it is finally home.
I encourage you to not buy into hate mongering. To avoid and dismiss your presence from forums that spread vicious rumors about autistic people, from blogs and articles that point out others as faulty in their very infrastructure. No person that instills hatred and discord is a beneficial voice to our culture, no matter the rationalization.
I will not assist an autistic that pushes the dagger further into the wounds of another member of my tribe; I shall not rest my hand on the same weapon of demise; nor shall I uphold such action by association. I remove myself fully. If you call out my tribe member, I call out you in silence, through my movement toward the opposite spectrum of justice and acceptance. I will not bow down to your ways, if those ways are compromising my autistic family.
Self-proclaimed autistic “activists” that hide behind the guise of “activism” as a means to their ends (of outrage and name-calling) are not activists I standby. When considering a leader, I seek out the gatherers. I observe their ways. Are they too hiding behind the guise of activism to justify harmful acts? Are they gossipers? Are they instigators of superiority? Are they calling out blame and creating the very harm they accuse others of?
Unification and activism with self-awareness, with self-reflection, and with the ability to apologize and be flexible, is what builds people up. Unity that instills self-empowerment and then provides means of members to go and create constructive change, in an uplifting environment, is beneficial. Confronting conflict in mature fashion and fairness is productive. Unity that creates cliques and establishes rigid rules of what is accepted and what is not, based on passing trends and self-centered agendas, breeds isolation and separation.
Like anything of fortitude, a community must be able to move within the times and be open to other ways of thinking and being. Inclusion includes diversity, including diversity in opinion and manner of expression. Including ways in which a people identify. I steadfastly will not instill further separation on a group of individuals that has already been marginalized. I shall not heed the leaders of such a cause.
I will not call my sister and brother out. I will step back. I will step out. And I will create my own change away from hurtful means. I will swallow my rage without stinging others back with the taint of their own venom, and transform my anger into proactive causes. I refuse to support the autistic self-empowered leader who blasts dynamite of discord without forethought or recognition of the detrimental consequence.
Bio: Marcelle Ciampi, M.Ed. (aka Samantha Craft)
Marcelle Ciampi (aka Samatha Craft) is a respected autistic author and community advocate, is best known for her writings found in the well-received book Everyday Aspergers. A professional educator, she has been featured in various literature, including peer-reviewed journals, Autism Parenting Magazine, The Mighty, Project Aspie, Art of Autism, and Different Brains. Marcelle works as the Recruitment Manager and Outreach Specialist at Ultranauts Inc., an engineering firm with a neurodiversity-hiring initiative, and is a consultant for Uptimize and Spectrum Fusion. A contributing author of Spectrum Women: Walking to the Beat of Autism, Marcelle speaks globally on the topic of neurodiversity. She also serves as the founder of Spectrum Suite LLC, the co-founder of the Spectrum Lights Inclusion Summit, co-executive of LifeGuides for Autistics (neuroguides.org), and a contributor and advisor to autism organizations and conferences internationally. Some of her works, especially The Ten Traits, have been translated into multiple languages and been shared in counseling offices around the world. She resides in the Pacific Northwest U.S.A. with her sons and life partner.
“Everyday Aspergers is an unusual and powerful exploration of one woman’s marvelously lived life. Reminiscent of the best of Anne Lamott, Everyday Aspergers jumps back and forth in time through a series of interlocking vignettes that give insight and context to her lived experience as an autistic woman. The humor and light touch is disarming, because underneath light observations and quirky moments are buried deep truths about the human experience and about her own work as an autistic woman discerning how to live her best life. From learning how to make eye contact to finding ways to communicate her needs to being a dyslexic cheerleader and a fraught mother of also-autistic son, Samantha Craft gives us a marvelous spectrum of experiences. Highly recommended for everyone to read — especially those who love people who are just a little different.”
~ Ned Hayes, bestselling author of The Eagle Tree
19 thoughts on “Dynamite of Discord: The Responsibility of Influencers in the Autism Culture”
I love this post! Very true. Although I’m still new to all this in the grand scheme of things and thus haven’t yet encountered much of the misbehavior described, I can definitely see where this might be a “thing”, which is potentially harmful indeed. I love your response to the perpetrators of this behavior. Definitely role model-worthy 😊❤️
thank you, your input is much appreciated
Loved this. Luckily I was a little baffled at whom would do that behaviour- I even scrutinized myself wondering if I have and was perplexed at what it could be… so I’m unsure although knowingly sheltered and naive… I have seen a few places of general superiority but mostly I chalk it up to hopefully new found empowerment… I hope there aren’t many hateful places around the net but I suppose that is also a false hope. Sigh. I like what you wrote tho and inwhile heartedly believe in support instead of harm. Good to hear from you again ( oh and I’m glad u could relate to the physio post. I would love to hear more on how we are alike in that sometime as it is not often someone shares my journey!) love K
Whoops don’t click my name in the above as I entered it wrong and it says possible phishing website. I’ll try to resolve it in this one
🙂 You are so sweet. I am the same way, always wondering . . . You have a heart of gold. Talk soon
I couldn’t agree more, after all we want awareness and acceptance, we need to make a stand and be more aware of each other accept that there are as many differences between autistic people as there are between NT’s and autistic people.
Practice what we preach and make a stand in the right way, name calling, accusing, blaming, using, self promotion for ones own cause doesn’t help raise autism awareness in the way we need.
Kindness, acceptance, compassion and understanding are the means by which we will help each other and make a difference.
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sell said 🙂
As a recently diagnosed woman of 50 years old, I have been surprised by how hostile some fellow Aspies have been on-line and in forums. I really love this article – there are so many of us, both diagnosed and undiagnosed, male and female, young and old etc etc, so we don’t have to agree on everything but we should be kind to each other. Some of us have only recently been diagnosed so we are reframing our lives and trying to work everything out in light of the new realisation we have. It is confusing and we don’t deserve hostility. Thanks for this article!
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Yes, it took me awhile to realize autistics are humans like anyone else and come with a spectrum of kindness-levels. Some autistics are jerks, just like and group of people 🙂
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You are right – but after a lifetime of feeling misunderstood and unsupported, the initial excitement and hope of finally connecting to people who might ‘get you’ can become dashed very quickly and can lead to feeling even more isolated.
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You aren’t alone. Now I know I am not, either.
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There’s also a danger that those who are high profile autistics are the subject of harassment and hate if they do not represent or advocate ‘correctly’ and this too is destructive. For example Michael McCreary, the comedian, just came off Facebook because he is burnt out with trying to cope with so many complaints and demands, despite also being a source of light hearted comfort to so many people. It is stifling to the expression of an individual, if they must always represent the entire community, because the community is diverse, not homogenous, and it is impossible to please all simultaneously. Let’s applaud those high profile autistics, who act with good intention, even if not always agreeing with every little detail of their work.
yes. I am sorry to hear that. I had to take a break myself awhile back because of all the negativity.
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Sorry to hear you’ve gone through that. I guess people who are struggling misdirect their feelings sometimes, although that doesn’t make it ok. Thanks for your post. It’s good to spread the word. Unity in diversity!
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