Rising to the challenge of Neurotribes

network world neurotribe
It’s all connected, even if it seems like it’s not.

Never let it be said that the autistic community is one-dimensional and bland. We are anything but. We’re all over our spectrum, with a whole lot of passion behind our beliefs and opinions. Our points of view have been shaped by so much experience — and a lot of pain — with an intensity that I’m sure lots of non-autistic folks find daunting.

Recently, Austin Shinn posted a piece called “The Silberman Issue“, which raised concerns about a non-autistic individual becoming a sort of “spokesperson” for the autistic population. Austin says it better than I can paraphrase:

Steve Silberman has become a very serious problem for autistic people. He’s become the de facto voice for the autistic community when he is not a member of it. He has become the person the media cites as the expert on the subject, crowding our own voices out of the conversation. And I can’t lie: I feel he’s at fault in this as much as the media.

Silberman can’t be faulted for trying to sell his book, to be clear. Yes, of course he’s got every right to do so. His book is on autism. I expect him to talk about it nonstop. I talk about my own book a lot after all. I realize that he is trying to make his living.

But early on, the idea that he was a voice for us solidified in the media. I’ve read a number of stories that promote his book as if it’s the definitive tome on our lives. It gets frustrating to see articles treating him as the expert on our lives. It’s something I’ve seen constantly since the book came out and I truly think it’s getting worse.

I have to say, I agree to some degree with this point of view. I also agree with the commenters at the blog post, that we do need allies, and we do need non-autistic folks who are deeply sympathetic to our situation. I also appreciate Silberman’s response to Austin’s piece, where he relates that he’s “been trying for a long time now to do something much more subversive than ‘name drop’ autistic writers”. He goes on to give concrete examples of how he’s doing exactly what Austin’s piece seems to ask for — yielding the floor to #ActuallyAutistic individuals to speak for themselves.

I really appreciate that. It’s incredibly important that those in a position to signal boost us, actually do it. And quite frankly, Silberman can do that because of his widely perceived expertise in the history of autism and his long-time consideration of it. He is in fact using his influence and position for some good, regardless of how often and to what extent we may believe he is.

I don’t doubt that Steve Silberman is a powerful and influential ally, and I don’t doubt that he’s taking some important actions to promote understanding about autism and our culture. I also don’t doubt that many neurotypical folks are far more comfortable talking to and interacting with (and believing) someone like them. People look for individuals they can relate to, especially when it comes to a subject as charged as autism. I’ll defer commenting on the problematic source(s) and nature of that “charge” — it’s a rabbit hole I’m not going down, right now. Maybe later.

Tweet: People look for individuals they can relate to, especially when it comes to a subject as charged as #autism.Tweet this: People look for individuals they can relate to, especially when it comes to a subject as charged as #autism.

 

Anyway, yes, we sorely need competent, sympathetic, and relatable “translators” to bridge the gaps between the autistic and non-autistic world. And Silberman has shown himself to be all of those things — and more. The public perception of autism is (‘scuse my language) a shitshow, and while things are changing, it’s happening very, very slowly. Media still love to run stories about how awful having an autistic child can be. Rolling Stone ran a story a little while back, along with the San Diego Union-Tribune. No, I’m not linking to them. Believe me, they’re not a good use of time.

And yes, it’s incredibly refreshing to hear a public figure teaching the world that autism is a difference, as well as a disability, and that many an autistic individual has contributed to the greater good. I think that’s actually an understatement. That internet thing? You’re welcome, world. It’s been our pleasure to build it for you, although you’re not doing such a hot job of using the powers for good, instead of evil. It’s wonderful to hear someone in the mainstream talking about us like regular human beings with so much to offer, as well as certain difficulties.

But yet…

Where are the autistic voices? Where are the books by us, about us, describing our world in accurate detail to the mainstream / non-autistic population? Where’s the heavy-duty promotion of our writing, which is prolific and often insightful? Where’s the autistic presence in the major booklists? Yes, books about us by non-autistic authors (including fictional accounts — that book about the autistic boy and the dead dog) are widely read and positively reviewed and make it onto the bestseller lists. Movies are made about us by large studios, and they have been known to rake in some dough. But where’s our own presence in the mainstream media and publishing scene?

Where are we, indeed?

I think our relative invisibility and need for representational proxies has a number of contributing causes, and not all of them are the fault of the non-autistic world. There are many, many different aspects to this, including systemic injustices, inequities in education, earnings, healthcare, etc. which hold us back. But are we doing everything in our power to turn the situation around — for / by ourselves?

I’m not so sure. Here are some points I think we could address, ourselves:

  1. We’re not well-known. Yes, many allistic people have a skewed idea of how we are and what we’re capable of, which makes autistic culture less attractive or “consumable”.  And we tend to suffer under that. Our invisibility makes it easier for non-autistic folks to jump to conclusions about us, based on widely promoted images that serve the intere$ts of fund-raising organizations. Thing is, we curse the darkness an awful lot, gnashing our teeth about our marginalization, while not lighting a lot of candles and stepping out of the shadows. Of course, disclosing your autism to the world can be a tricky, tricky business. I’m one of the folks who stays behind the scenes, due to the social bias / job-related risks associated with disclosure. I have told a very small number of people I know that I’m on the spectrum (and most of them don’t believe me, because I don’t “act autistic”). Most of my autism-friendly interactions happen online, well out of sight of the public eye. So, I’m certainly not helping matters, by keeping quiet and not helping others broaden their view of “what autistic means”.
  2. We don’t self-promote effectively. I’m not just talking about individual self-promotion. I’m talking about intra-cultural promotion of autistic writers, artists, musicians, actors, inventors, engineers, programmers — both within our community and beyond. Signal boosting. Getting the word out and rallying behind the #ActuallyAutistic people who are doing cool things. We tend to do a not-so-great job of promoting ourselves — or promoting each other on a regular basis. We’re autistic, after all, which can often mean that our energies are limited and our interests are circumscribed. And I have yet to come across other people whose “special interest” area of intense, specialized focus is the widespread promotion of autistic culture. I’m actually that sort of person, but I seem to in the minority. Plus, I’m still figuring out how I can do a better job of it. I’m a strong systems thinker, so I’m naturally working on a system…
  3. We don’t fully $upport our own. If you want culture to survive — even thrive — you’ve got to put something into it. It costs money to live in this world, and if you’re going to make art and write and dance pursue anything which isn’t immediately profitable to the mainstream, you need to have support. Problem is, a whole lot of us are pretty short on cash. A whole lot of us are poor or low-income, and we don’t have a lot to offer by way of discretionary funds. I’m myself, am battling back from the brink of financial disaster, thanks to a series of medical issues which were made that much worse by my communication issues. That’s on top of chronic employment upheavals that have stemmed directly from very autistic difficulties. Things like that are serious problems for many, many of us. And they starve our culture. It prevents us from supporting our creators, and it prevents our artists and writers and musicians and other creatives from building out our world and making our presence known.
  4. Our creators don’t always make it easy to $support them. Cultural support works both ways. Creatives need to find ways to produce work that is accessible to folks without a lot of money. It’s possible. You can do a whole lot for a little bit of money, if you know where to look for the deals and free stuff. Yes, artistic integrity is important. Yes, you have to honor your vision. Now, could you do something like offer your book in digital format for free, on the first day of the month for three months in a row, like Sam Craft has done? It’s a quick way to cut a lot of people a break, while not ruining your bottom line. There are ways. There are options. Creativity applies to the “delivery” as well as the creation of culture.

I could think of more reasons why we’re not standing atop the proverbial mainstream mountain with our AS flags waving high, but let me get back to the point I started out trying to make:

We need to do everything we can to promote ourselves, to boost ourselves, to make our own autistic voices heard and support our own autistic community.

(Click to Tweet)

We can’t expect others to do it for us, especially the mainstream. We’ve got to step up and take our rightful place. Either that, or carve out our own substantial niche where we are very clearly the ones defining our identities and our priorities, and it affects us a lot less, what others say about us. Steve Silberman said in a recent interview that Autistic adults are leading the “first civil rights movement of the 21st century”, and I agree. We have to realize that for ourselves, too. I think we should value our own contributions, our own ways of being and thinking and doing, and spend a little less time worrying about what others think of us.

If we are uncomfortable with how the success of Neurotribes is casting a non-autistic individual in a role as a “spokesperson” for us, what are we going to do about it? Who’s going to step up and respond in kind from within our ranks? We can criticize — and I do think it’s important to turn a critical eye to such matters — but we also need to do something of our own to counterbalance the situation in our favor. Because we can. We have tremendous resources and unparalleled powers of focus, passion, and systematic drive to create new — and better — things in this world.

My problem is not that Neutotribes has been so successful in the mainstream or that images of autistic people are defined to this day by non-autistic folks. It’s that we don’t seem to put concerted effort behind a response to that phenomenon. We can do a whole lot more which is positive and pro-active and displays the full range of what we’ve got to offer.

There are a million different ways of getting out there and making a difference for ourselves. And I think we should explore each and every one of them with every ounce of our autistic capability.

Because we can.


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25 thoughts on “Rising to the challenge of Neurotribes

      1. VisualVox

        Yes, it would. We need to find ways to include — in both directions — especially in ways that don’t put folks who reach out at a disadvantage, or make them feel that they’re being punished for others’ transgressions.

        Liked by 2 people

  1. Pingback: Blocked! Another big reason #autistic folks so often get stuck – Under Your Radar

  2. lisap63

    Well said!
    Steve Silberman’s voice steered me away from some organizations and toward voices like Rhi, and now you! Your voices, your shared experiences, are helping form my knowledge base and understanding so I can guide and support my son.

    Liked by 2 people

    1. VisualVox

      Wonderful! I’m so glad to hear it. It’s so important that we come together. Autism challenges really are community challenges, so the more connections we have within our community and the more diversity we include, the more comprehensive our solutions can be. It’s a long journey, but people like yourself are helping to dispel the darkness. Thank you for your efforts in this.

      Liked by 1 person

  3. Yes i think there’s a gap between both side. Many difficulties to understand each others. I experienced a friendship with a person hfa, i tried to be my simple me, and to get near her needs, to be patient, to be quiete, to share my goods with her, i love her so much… but at the end she escaped. There was no reason she escaped from my point of view ’cause I loved her just the way she was. Maybe from her point she told me she was full of anxiety of what she couldn’t give me. I don’t know why she escaped, i can’t jugde too but i still wait for her. But another person won’t wait. And i’m not better person than another… anyway the problem is what is the best way to overcome this gap? Not love, not listening, not waiting… it should be other way… at the end my friendship was useless. Or maybe for austic persons friendship is something completly different?

    Liked by 1 person

  4. She made our friendship ending, even if there were no reasons. It was just a relationship by mails. I hope she could come back but the truth is that she make it end. For me it’s forever. But i think also this word has a different value… without any judgement of course… i respect her decision even if i don’t understand…
    For me forever is never ending…
    Trust too.
    Love too.
    Maybe my soul is not so grown up. I don’t know…

    Liked by 1 person

  5. This field was intentionally left blank

    I SO love this post!! Very positive and proactive. Life may have dealt us a different (and sometimes raw) deal, but in the end, we’re all products of our own predispositions (what we were born with, things that happened to us, etc), and our choices (what we spend our time doing, how we’ve handled things that have happened to us, who we choose to spend time with, how well we take care of ourselves, etc). We usually have a lot more power over our “destinies” than we realize or give ourselves credit for. Thank you for shining such a nice bright light on that! 😊❤️

    Liked by 1 person

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