Dragged in two directions, neither of them good

I feel like I’m in the middle of a tug of war, being hauled on by two groups, neither of which actually care about me or what I have to say.

So there’s a topic that has been churning around in my head for a while now. It’s the one where people will say “ah, but really we’re all a little bit autistic” and how horrible it is to say. I’ve really been struggling to give voice to that, why it’s so icky, and eventually I went and asked for help. In the process I learned that I am not the only person who struggles to put it into words.

However, as this has all been churning around, another topic sprang to mind, and that’s the one I’m going to talk about now. Hopefully sometime soon I’ll figure out how exactly to explain that no, we are not all a little bit autistic.

So increasingly I feel like I am being tugged in two different directions, both of them icky. And trying to pull back on either of them risks me falling in the other direction. Or, just as bad, risks people thinking I am going in the other direction, even when I’m not.

See, on the one hand we have the people who talk about autism as a “tragedy.” They’ll use words like “disease” or “holocaust” to describe us. They’ll talk about us as though we’re lost or broken, diminishing our lives and our personhood to nothing more than fear mongering talking points. We’ve all run across it, I’m sure. I’m sure many of us have been hurt by words like that in some way or another. So we resist. We say we aren’t a tragedy. We explain we have strengths. We say we are different, not less. We insist our voices be heard, even as they try their best to silence us.

And people see us resist those tactics, and just wind up thinking we are on the other end of things. The end where people say things like “we’re all a little bit autistic” as though autism is nothing more than a bundle of quirks. This is the side that diminishes our very real struggles, how much things can hurt when you’re autistic, how extremely difficult some things can be.

I’ve had people see that I am against the “cure” idea, and accuse me of being against therapy, treatment, and other sorts of help. I’ve seen people claim that “different, not less” is treating our differences like hair color – something shallow and cosmetic and not actually a major impact on one’s life. At times when I’ve explicitly rejected people saying “we’re all a little autistic” I’ve had people able-splain at me that since it’s a spectrum, everyone is on it.

I’m tired of feeling like I’m the middle of this terrible tug-of-war, but I don’t know how to leave. I don’t know how to make it clear that I’m not on either side – that I see BOTH sides as being harmful. And I know so much of it is because so few people are willing to listen to autistic people. When they do, so many come in with their preconceived notions of what we’re saying, with the straw men that have been constructed by the people in that tug-o-war, that they are more interested in accusing me of saying things I’m not than in actually listening to what I am trying to communicate. It’s frustrating. I don’t know how to fix it.

So I guess for those of you that do listen – thank you. Maybe we’ll find a way out from those two sides and forge our own path.

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9 Comments

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9 responses to “Dragged in two directions, neither of them good

  1. As the mother of a 14 year old girl with asperger’s we struggle too – she in her way from her angle of course, and me, as her mother what only wants what every parent wants- to see their child grow up happy and fulfilled. We are a very autism-positive family- but at the same time she has struggles that she needs help with…and that is where we get into conflict sometimes. I’m not trying to change her amazing, unique way of seeing herself and the world, but I know there are thing she struggles with that a bit of help could make all the difference. I’m talking basic things like resistance to basic dental hygiene (I say this with thousands of dollars of work coming up in the next few weeks because she eats way too much sugar and doesn’t brush adequately without prompting). It is a delicate balance. I try to frame it in terms of we ALL, autistic or not, need help in certain areas of our life. And that there is no shame in taking the step of getting help, whatever it may be.

  2. Just me

    I wonder if this is one of those things that is very nuanced, and so the more you try to reconcile opposing viewpoints, the more convoluted it gets (like gay marriage, or race issues). And so perhaps the solution is to talk about it to the extent that it feels helpful to do so, drop it when it doesn’t, and find some peace with it as you wait for the larger cultural perspective to evolve to the point where the nuances are more adequately captured.

  3. Autism Mom

    I really dislike this, too: “really we’re all a little bit autistic” for the exact reasons you describe. I usually try to swallow my dislike by assuming that the people who say it are trying to connect, trying not to feel different, trying to close what they see as a gap between us, rather than just accepting it. It is a sign of lack of understanding.

  4. Corinne

    I was diagnosed in January with high functioning autism/Aspergers, and this came as a shock and a relief at the same time. The perseveration makes me want to discuss it, advocate, speak about it. But when I do, everyone only wants to tell me about how much I don’t have it, or convince me that I’m normal with quirks. And I want to elaborate to them, help them understand. It never works. So then there’s the opposite side of me, who doesn’t want to talk to anyone for days because al I can think about is Aspergers or my typical interests. I can see the light of interest leaving people’s eyes as they stop caring about what I’m saying, even my close friend or boyfriend who know I have it. They just wait for me to finish, then I apologize and say I’m rambling. That has been the most painful feeling, before and after my diagnosis. I feel what you mean being pulled two ways, part of me wants live my life alone. But my emotions that are neglected remind that this is not healthy. People who say everyone is a little autistic demean or threaten the importance and impact of having my syndrome defined as a tangible diagnosis. It hurts.

    • Miss Kitty

      Wow. Been there done that. I was diagnosed 18 months ago with Asperger’s, and at first all I wanted to do was to talk about it to everyone. Finally I had an explanation for all my differences I had never been able to put into words! But nobody was interested in listening to me. My mother was so upset by the fact that one of her children was ‘defective’, that she cried for days after I told her. Everyone else treated it as if it was no big deal. ‘OK, you have Asperger’s. So what?’ I wanted to tell them , ‘But don’t you see that it is the reason I have struggled with so many things in my life?’ They couldn’t see it, they were too used to my quirks and didn’t realise just how hard life can be when you are always trying to compensate for those ‘quirks’. That’s why I like coming to blogs and forums like this – these are my people! They understand just what I am going through! If I have somewhere like here that I can chat about the difficulties of being autistic, then it stops mattering so much to me that others don’t care.

  5. I wonder if the same folks ever tell blind people, “Well, everyone is a little bit blind.” We all have limitations to our visual ability, and “blind” doesn’t imply that one has no responsiveness to light at all. So, it’s a “spectrum,” amiright?

    When confronted with a person and a disability, most people display a strong urge to minimize either the person or the disability. Fully acknowledging both simultaneously seems to produce a lot of cognitive dissonance.

  6. Pingback: THE AUTISM CONNECTION – #1000SPEAK | Autism Mom

  7. Undiagnosed

    I am also a mom of an autistic child. For a long time, we didn’t really talk about autism as such. We talked about the areas that they had difficulties with, and what/how we can help those areas so that things were best possible for my child. Now I do a little of both.

    I think it is 4 years now since the diagnosis, and in the beginning, I really struggled with the same tug-of-war feelings you describe. At some point, I watched a documentary that made me realise that normal people can also have autistic-ish quirks. So when I hear people saying they are a little bit autistic, I translate that in my head, to be something like, “I have some quirks that could be similar to some of the challenges autistic people have.” I have found that if I just change their sentence a little bit in my head, then dealing with the person is easier.

    On the other hand, when I am talking to the school about what we can do to create the best possible learning environment, I try to focus on the very concrete challenges and stay away from focusing on autism as such. I find it makes the discussion more concrete and productive. Since all people with aspergers and autism are affected differently, it also helps to adjust expectations and understanding to keep things on a very concrete level. But, having said that, I spend my energies on making the best possible situation for my child, and decided very early in this journey that I am not going to use my time and energy trying to change the world or the system. I am a very pragmatic person tho, and I realize I have limited resources. For me, I try to focus on what will help my children. Sometimes I feel it is an egoistic choice tho, and feel a bit guilty.

  8. Nelly

    Oh I get IT , followed by ” we’re all a little autistic ” !
    How fudging patronising ! I usually smile politely and choke on the bile that wants to spew all over their patronising face .
    I’ve decided that after reading your blog that this will be no more . From here on in I’m going to challenge that patronising way of them trying to feel ok about autism .