Dissent and Autistic Communities

Early on in my career as a fundraiser, I heard about this amazing management expert who thought businesses could learn a lot about managing from charities.

Peter Drucker was his name and there was always at least one slide in any presentation on fundraising way back then that had a quote from him.

The only one that ever really stuck was:

Dissent, even conflict, is necessary, indeed desirable.

I don’t have the book where it came from, but a handy search on google for “Peter Drucker quote about dissent” led me to a blog by Timothy Bednarz with the quote and what comes after the often-repeated dissent…is necessary.

Without dissent and conflict there is no understanding. And without understanding, there are only wrong decisions. 

Dissent and disagreement play a big part in all of our lives. There is no escaping it.

Democracies exist because people have disagreed with how they were governed and the protection of free speech to be critical of governments is one of those things we repeat endlessly as necessary to how a democracy functions. Dissent is vital not only in challenging governing structures and refusing to be silent. It occurs within groups who work together to make changes.

Yes, this is what dissent is about.

Yes, sometime this is what dissent leads to.

Before I get too far down the road of what fundraisers repeat or citizens repeat or some misunderstanding of some political theory, I want to circle back to the parenting autistic children half of the title.

Dissent is painful. Disagreement is hard work. Many of the people we meet in our lives are conflict averse.

When I first confronted the notion that my son might be autistic, I had the same experience many parents do: many people don’t want to accept that possibility. In our case, having to gather the resources for debate, having to repeat the case many times, having to go around someone meant that my son’s diagnosis was delayed by many crucial months.

Then there were the discussions for treatment options. In the last year and a half there have been the debates about whether or not an AAC app or device would help Daniel.

These are some of the conflicts trying to get services for my son. Any parent knows that there is some degree of disagreement with children themselves.

Perhaps growing up when I did made me appreciate that active ongoing dissent requires engaging people with different ideas. Perhaps watching dissent help to make the Soviet Union crumble made me think that having a different opinion could make amazing things happen.

Maybe I just like debate.

What I have discovered is that a lot of parents of autistic children don’t.

It is pretty natural to want to get along and be agreeable.

Parents of all special needs children face struggles to get services for their kids and face struggles to raise their kids. We are afraid that the services will disappear, afraid that we are not doing our best, afraid of letting our kids down.

Many parents feel that there is one monolithic autism community and that we should not be divided.

I disagree. Once upon a time, we used to talk about the gay community until we understood the diversity of experiences meant there are many communities.

There are many communities connected to autism. Parents form one of them, or several if you want to look at where we are one some of the issues.

For instance, I am not in the community that believes vaccines cause autism. My interests are different on what causes autism than someone who believes vaccines led to their child’s diagnosis.

I am not in the community that supports Autism Speaks. In fact, I support the work of activists for #boycottautismspeaks.

I am not in the community of autistic adults, because I am not an autistic adult.

In all of these communities of interests, I may share some of the views of some of the members and disagree with others.

But we should be able to disagree.

What I notice is that there are often pleas that we should all get along and not disgree because we are all on the same side.

What happens, though, when there are people who feel threatened by the majority?

In the autism communities, the folks who have the greatest need to be heard are the autistic individuals themselves. They are the dissenters. They are the people who most want something to change and want to be heard.

Someday I expect Daniel will tell me what I have done wrong. There will undoubtedly be times that I didn’t understand what he was telling me. He will, as I hope all children do with their parents, tell me he disagreed. It’s at that moment that I will gain the greatest understanding of what his experiences were.

What I would ask other non-autistic parents who want us all to be on same side to consider, is that the people who can tell us most what autism is are autistic individuals who are telling us that we don’t share that same experience they do.

I want to say that again: we don’t share the same experiences. We can choose to not enforce some conformity on their views or attack them when we are challenged. It is very tough for us as parents of autistic children to be less rigid, because we learn early on that the therapies and the treatments are about helping our kids to conform, to socialize or to be like other kids.

Dissent is a challenge to the way things are. If we don’t allow all voices to be heard, there is no community, only conformity.

Dissent never ends because the search for understanding never ends. Otherwise, there are only wrong decisions.

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15 thoughts on “Dissent and Autistic Communities

    • Thank you, Leah.

      The issue of thinking that there needs to be some homogenous view on issues concerning autism (or any topic) has been on my mind for a while. The whole point of life is understanding things we won’t understand.

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    • Hi Joseph and thank you for stopping by.

      I agree that disagreement just to be disagreeable doesn’t get any where, but I am not sure how any of us can tell that at the outset.

      On the news, we will often see 2 sides in opposition on stories. It’s tough to know if one side has all the facts on its side without context.

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      • I think a good example would be the vaccination issue. To give equal credibility to those making scientifically unsubstaniated claims to those who do would be harmful.

        However, if there is a discussion about mainstreaming or segregation in schools, there is a lot more room for discussion. Although, that also depends a lot on variables like individuals, school districts, etc.

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  1. Many autistic self-advocates could also do with heeding your message. Too many self-advocacy organisations, in their efforts to dissent with the dominant pathology/cure narrative, don’t tolerate dissent in their own circles. Years ago, I used to think autistic people lacked herd instinct and are incapable of groupthink, and I considered that a massive advantage of being autistic. But I have been sadly disabused of that notion.

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    • Thank you for sharing your experience with self-advocacy organizations. It’s not experience I have and I am grateful to learn more.

      It’s so easy to kill passion and dissent. It’s so hard to foster the kind of environment where every voice is heard.

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  2. I very much like this piece, but my literal mind is conjuring up all manner of examples where dissent is not only not good, but actively harmful. I suppose it depends on who is the majority in any given situation and who is not – like, in autistic adult circles, it happens more often than you think that a parent will say they feel “ganged up on.” But in the grand scheme of things, WE are the ones who are mistreated. I suppose my point is that if you’re in the majority group, it looks like “dissent”, but if you’re in the minority group, it looks like “speaking truth to power.” Are we dissenters or are we speaking truth to the power that is Autism Speaks, for example?

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    • This is true. Some places it seems that parents of autistic children think they have more to say about autism than people (adults, usually) with autism.

      A person with Autism has far more experience with Autism than a parent or therapist.

      Liked by 1 person

    • CC, your point about whether something is dissent or speaking truth to power is really important. Some people do use the word, dissenter, as way to minimize how important the issues are, and I didn’t fully think about that use when I wrote my post.

      As soon as someone expresses an alternative view or shares a different experience that challenges the majority view, the larger group or organization can choose to listen or not listen. If the group chooses to say “it’s just some dissenters,” then the group is telling us they like power and privilege.

      I think one of the reasons that people fear dissent is that it generally comes from someone on the inside. In the case of AS, I don’t believe they think of autistic people as insiders in their organization. The money and power come from somewhere else. Groups or individuals would only dismiss or try to minimize something can take away some of their power.

      I see some threads where parents feel that they are “ganged up on.” I wonder when I see the phrase “walk a mile in my shoes” shouldn’t that include trying to see a discussion from the point of view of an autistic individual.

      As for the harmful dissent, I can think of plenty of examples where people disagreement can have some harmful consequences.

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  3. i’d like to see a visual and actual autistic community where people on the spectrum interact and live close by. they asked on a forum if you’d like to live in aspie town. i’d consider that, and think it’s probably not a bad idea…
    diversity is good, and different views should be welcome. i dont believe vaccines cause autism, either. something genetic is more like it. and no, my mother was not a ‘refrigerated mother.’ but i’m willing to hear all kind of views.

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