5 Reasons Autism Communities Are Divided (and Why That’s Not Necessarily a Bad Thing)

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By Shannon Des Roc... on October 22, 2015 

I hate conflict, yet the autism corners of the Internet -- where I spent most of my online time -- are rarely without it. So I get why well-intentioned parents and professionals periodically send out can't we all just get along calls for "autism unity," because I want things to be smoother for all of us, too.

But I also know "autism unity" is neither realistic nor desirable, because there’s too much going on in the autism communities -- both now, and historically.

Still, here are some very good reasons why this friction isn’t going away any time soon, and why some of that friction is not only necessary but important.

1) Autistic people and their families spent decades being silenced. Now that we have voices, we have a lot of unfinished conversations to work through.

For most of the 20th century, autistic people and their parents were practically invisible, and certainly unheard. Parents were told to institutionalize their autistic kids, remove their pictures from the family home, and forget they ever existed; those institutionalized autistic children and adults were systematically abused, and chemically restrained -- as Steve Silberman details in his painstaking history of autism, NeuroTribes.

Previous generations of autistic people and their parents had no Internet to connect them. Parents were kept in silos of shame, autistic kids were locked away, and the only people both groups had to rely on were the very experts who kept them isolated. The only commonality, as autistic writer M.o. Kelter posits, is that:

"There was complete agreement on the fact that autism needed to be hidden away or eradicated. That's what unity looked like."

We currently live in an age of visible, vocal autism communities. And given our histories and how little say or ownership we've had over them up until this point, I think it's unconscionable to ask any of us to be silent just for the sake of some imagined autism community peace.

2) We come from too many different backgrounds to expect us to all get along

Autism is a commonality, not a unifier. Expecting everyone in the autism communities to want the same things is like expecting all women to want the same things: it's not going to happen.

Anyone from any walk of life can be autistic, which means we often find ourselves encountering people in autism environments with whom we otherwise have nothing in common. As A’Driane Nieves writes,

"Part of 'getting along' with others, especially those with different lived experiences than yours, is taking the time to acknowledge and understand what shaped a person's perspective or lived experience. Empathy and compassion are crucial and needed in communities, yes, but so is working to understand the realities many are living and contending with daily. You can't ignore what's problematic or what systemically places others at a disadvantage. Part of truly seeing people is seeing what they face.

"You can't get along with me and my Black and Brown autistic sons if you don't understand how things like implicit bias, systemic racism, and racial injustice shape not just how I parent them and what they will face as boys and later men of color in this country, but also how access to services and support might be restricted because of systemic racism -- which can and usually does pervade everything in our world.

"You also can't get along with everyone until you respect their experiences and amplify the voices of those in the margins, those with intersecting identities within your community. From what I've heard and read online over the last two years, I'd say we could all start 'getting along' with each other by truly hearing and centering the voices of autistic adults first."

 

3) Autism attracts conflicting advice.

Our "experts" may no longer automatically recommend institutionalizing autistic kids, but too many of them are focused on fixing autistic kids, instead of understanding or supporting them. This applies as much to misguided therapies to help autistic kids learn or be "social" as it does to horrifying bleach enema “cures.”

Parents new to autism are usually overwhelmed by, yet underinformed about, the variety of approaches to supporting their autistic kids. When that unease is compounded by slipshod, consistently negative media coverage about autism and autistic people, too many scared parents get duped into falling for autism pseudoscience -- which tends to encourage fervent, cultish beliefs rather than the kind of critical thinking that allows for considering different viewpoints. Parent Matt Careywrites,

"I do accept that people have the rights to their beliefs. It's when those beliefs impinge in the rights of others that I must (MUST) speak out. Telling autistics they are 'damaged' by vaccines, that they can only be fully valued if they become non-autistic, that there is 'nothing to lose' by trying whatever snake oil the charlatan of the day is selling ... standing by while people promote that is just wrong. And it doesn't respect someone else to allow them to continue to spread harmful information without a voiced disagreement.”

If so many of us don’t have any idea what best autism practices are, believe in questionable information because we defer to experts, aren't sure who to trust, or believe that we're doing right when other people say we're doing wrong, how can we possibly agree?

4) If you're a parent, your child may be the first disabled person you know. If so, their community is not your community.

I keep referring to "communities" because there is no such thing as an "autism community." Autistic and parent autism communities are two different camps -- though goals may overlap, there's often a lot of synergy between the communities, and many people are both autistic and parents of autistic kids themselves.

But too often, I see parents dismiss autistic adults as angry or combative, when in fact those adults are usually doing their damnedest to help those parents stop misunderstanding their kids  (despite the personal cost to those autistic people of engaging with hostile forces), or are standing up for themselves and demanding that their voices steer more autism conversations.

As autistic writer Emily Paige Ballou notes,

"What I suspect many parents don’t understand, when they encounter strongly negative reactions of autistic adults to statements like 'I love my child but I hate his autism,' or wishes for a cure, or that we should be called 'people with autism' and not autistic people, or many of the goals of ABA in terms of extinguishing autistic characteristics ... is that oftentimes, we HAVE given a lot of time and consideration to those opinions. We have believed those things, we have turned that hatred and alienation on ourselves, and now we're trying to put ourselves back together, and we're asking parents not to turn the same hurt on their own children.

"It’s not just intolerance for opinions different from our own. We have given those opinions more than due consideration."

Autistic adults are also a varied population. Not only because of human or autistic variety in general, but because they have different life experiences as autistic people. Many older autistic adults, like John Elder Robison, weren't even part of the autistic community before the definition of autism was expanded to include them about 20 years ago, which means they never received therapeutic or other supports as kids. As autistic self-advocate and parent Carol Greenburg says, "while it's okay to ask me my opinion on service I think you'll get a more helpful and authoritative perspective from the younger autistic who has actually received that service."

Parents also sometimes insist that autistic people with different abilities than their kids (usually kids who are non-speaking or high support) can't possibly speak for or understand their kids. Thing is, you can't tell much about a person's autism from their ability to join online discussions -- many autistic adults who communicate online do share many traits with those kids -- either now, or when they were kids themselves. Autistic author E, writing in the book Loud Hands, questions why people are resistant to seeing shared autistic affinities despite specific abilities:

“It seems odd that people would so adamant that the verbal and nonverbal must be at odds with each other. But that is how the majority thinks, and as far as thinking goes, you are firmly in the minority. It should not be lost on you [...] that in order to stop fearing the natural affinity of the verbal and nonverbal who communicate in alternative ways, people would have to be comfortable letting you speak when/how/where you want.”

As long as some parents insist on thinking of autistic adults as a unified, one-voice, one-note group that is Not Like My Child, there will be conflict. If parents are willing to show a little more understanding and respect, that conflict will lessen.

5) Resources are hard to come by, and we don’t all need the same ones.

I don't know anyone who has all the resources they, or their kid, actually need. Not one person. Most people have settled. More aren't anywhere close to where they should settle, but they don't have any choice.

Access to scarce services is further limited by cultural, socioeconomic, and other factors. Parents aren't always aware what their kids’ rights are, may not be able to get past the stigma with which their culture views autism, may not speak their country's primary language, may not have the income or insurance to even seek a diagnosis or services, or can be too scared to risk seeking services because they are undocumented. How are parents in those straits supposed to identify with someone whose wants the autism communities to start holding hands?

Autistic adults have their own set of supports and service needs. They are often unemployed or underemployed, do not qualify for crucial services without sacrificing personal freedoms, experience a huge range of co-occurring diagnoses like anxiety or depression, and struggle to find appropriate or affordable housing.

And those needs can change over time, and by circumstance. Right now my own focus is supporting my son’s communication. A few years ago I was focused on getting him into a good school. In a few years I’ll be focused on supporting him through transition to adulthood. None of this is easy; some of it is brutally hard. That last one, I’ve heard, is near-impossible given the state of services for adults with disabilities. But transition readiness is not a concern of most parents with newly diagnosed kids, and it is ideally something autistic adults no longer need to worry about.

Even issues like dysregulated sleep patterns that can affect autistic people of all ages are by no means universal. The only universality in autism is that we don't all want the same things, and we don't all need the same things. Insisting on "autism unity" wrongly implies otherwise

So, what can we do instead of focusing on unity?

We can stop talking about unifying a mythical autism community, and instead help people find their autism communities. Finding their people, their group, their own specific sub-community. The one that shares their needs, values, and concerns. No one autism community is going to be able to do that for every autistic person or family member.

When sussing out communities, don't feel like you need to agree with everything and everyone -- a little friction is healthy and keeps you thinking. Do feel free to leave any group that disrespects you, or dismisses your concerns. And avoid groups that foster negativity, as conditioned bad attitudes have a real-world harmful affect upon your quality of life, regardless of your or your child's specific disabilities. And understand that not everyone who looks like they might be your community is your community. And that not getting along with every last person in the autism communities is totally okay.

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Shannon Des Roches Rosa is too tired to think about all the work she does at ThinkingAutismGuide.com or BlogHer.com or Squidalicious.com just now.

from http://www.blogher.com/five-reasons-auti...