Autism Interview #27-2: The Silent Wave on Positive Autistic Identity

The Silent Wave is a blogger and integrative medicine doctor. She blogs about life “through one female Asperger’s lens” and advocates for the acceptance of all people on the spectrum. Last week she shared some of her personal experiences growing up on the spectrum. This week “The Silent Wave” discusses ways parents can help their child grow to develop a positive autistic identity.

What are some of the biggest or most damaging misconceptions neurotypicals have of people on the spectrum?

Although I can’t speak for anyone else (especially neurotypical people, since I’m not one), I think that from where I sit, people on and off the spectrum are “running” different “operating systems” of the brain that don’t naturally or automatically make for compatible understanding or communication.  I think that this leads to a lot of misunderstanding and misinterpretation.

Neurotypical people might see us sitting there, staring into space, and believe that we (people on the spectrum) are lazy.  Or they might give us bad news and recoil when we respond differently than conventionally expected.  Or they might think that we have “anger issues” when really we’re just dealing with fatigued or overloaded nervous systems, and we might be outwardly showing what is interpreted as irritability in the process.  Or that we’re “locked in a cage”, that the autism spectrum is a bad thing, that we’re stiff/cold/insensitive (or, conversely, *too* sensitive), or that we’re somehow incompetent and/or mentally challenged.  (The truth is that none of that is true.)

There’s a general sense in the spectrum community that we’re often not taken seriously, listened to, valued, respected, or sought out for our perspectives by many neurotypical people.  We readily acknowledge that there are a few neurotypical people who *do* seek our perspective and genuinely listen to and respect it, although this seems to be less common.  I think there’s a lot of potential for more harmony on both “sides”.

You’ve written about being mistaken for lazy when you were “actually autistic.” Do you have any advice for parents struggling with this same misconception about their children?

My mother’s words ring in my head: “never assume”, followed by the old adage about the spelling of assume and its meaning (“assume” makes an “ass” out of “u” and “me”), and I think that’s the most relevant key point here.  Although I don’t have children of my own, I do understand that parenting is quite the tightrope; on the one hand, you want to get along with your children, and, on the other hand, you need to prepare them to meet an unforgiving outside world.  You want to support them, but you also want to guide them to be competent independent individuals.  The guidance and preparation processes often involve lessons that are unpleasant or even painful for kids, who respond with resistance or even rebellion, and these situations can get messy and drain energy on both sides.

So I think it’s important to find a balance, a “sweet spot”, of letting them be their own person and nudging them to integrate into the world–letting them be kids, but preparing them for adulthood.  Walking this fine line isn’t easy.  I definitely encourage all parents of children on the spectrum to listen intently, attempt to understand, talk about feelings, reserve judgment, encourage and support, and last but not least, “lurk” among the Asperger’s/autistic communities on social media or blogs to gain perspective.  Hindsight is often 20/20, and many of us on the spectrum have had time to think, ponder, review, and analyze (which many of us do almost constantly), and we often reflect on our childhood memories and experiences, and discern what our parents did right and what they could have done better, and the effects (positive or negative) that those experiences had on us, how they helped shape who we are today.

What can parents of autistic children do today to support autism acceptance?

I’ve given this a lot of consideration, and I’ve come to the conclusion that the very best way that (I think) ALL neurotypical people involved in autism in some way (whether they’re parents, teachers, other school faculty, or mental/medical healthcare professionals, authors, researchers, journalists, etc.) can help is to visit our blogs and websites and read the articles/posts with a genuinely open mind, arming yourself with firsthand information, straight from the source, and taking it to heart.

But I encourage everyone to not stop there!  Interact with us (the vast majority of us don’t bite 😉 and we’ll very much appreciate the effort and the interaction, and we’ll probably learn something from you, too!).  Comment on posts and articles, and “like” those that especially resonate with you.  Share these blog posts and articles on social media.  Comment on other articles/news stories, especially those that miss the mark or contain inaccuracies.  Set the record straight.  The best way to help is to amplify our voice, to share what we’re saying, to repeat our words, the words that come straight from us.  Introduce us to a different, wider audience so that those people, too, can gain insight.

The principal aspect of autism acceptance is just that: acceptance; please try to understand that Asperger’s/autism is truly coming into its own to be recognized as a “different, not less” “neurological orientation”, if you will.  While challenging and enigmatic to many, many of us on the spectrum are adopting the belief that a spectrum orientation is not necessarily a pathology or disorder, per se; it’s simply a different way of being.  There is no treatment or cure, nor do most of us think there should be (although there are exceptions to this viewpoint, whose opinions I respect, however; we’re definitely not all the same!)  It’s important to work *with* (and with respect for)–not against–your child’s spectrum orientation.  To try to thwart, dismiss, or downplay it is impossible (despite how some effects of certain therapies may appear on the outside), and it only spells long-term disaster.

Whatever you do, please try to resist the potential temptation to talk down to us (we’re adults, too; we just operate a bit differently) or talk over us. Instead, please show us your support by standing beside us as we speak for ourselves, and show us to your friends, family, and children.

And last but not least, please connect with us personally!  Whether on Facebook, Twitter, or other social media, we’re everywhere, and searching for us is simple.  Invite us to join “mixed” groups or talk to local support/networking/parenting groups or come to your school.  Talk to us, seek our perspective, and ask us questions (you’ll be surprised at the depth of questions we’ll answer, and the degree of honesty with which we’ll answer them!)  Show your (age-relevant) child our (age-appropriate) blog posts and articles (my own blog has mixed content, so I recommend screening posts first and printing out those that are relevant to you; this is true for many blogs, but it’s worth the effort, since blogs have been hands-down the richest and most helpful source of information for me).  Never assume that we’re all that different from your child; after all, we are examples of who your child will likely grow up to be.

 

Want to hear more from The Silent Wave? Visit her blog or connect on social media:

https://thesilentwaveblog.wordpress.com/

https://www.facebook.com/TheSilentWaveBlog/

https://twitter.com/TheSilentWave

 

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2 Comments

  1. Reply

    Well said!

    Two caveats from my very brief personal experience of finally getting an autism diagnosis at age 63:

    First, I have been disappointed with the difficulty of engaging with other professional individuals “on the spectrum.” I attribute this difficulty to (a) the great energy we “Spectrics” must expend when interacting socially (in contrast to the (to me) absolutely inexplicable fact that most neurotypicals gain energy from social interactions); and (b) the fact that we are less motivated to socialize constantly, because fewer and more brief interactions sate our need for human contact. I believe this explains our dislike of group activities, which is a fundamental handicap to Spectrics’ ability to achieve political power.

    I have no solution, other than to hope for some neurotypical Watsons to badger our Holmeses (yeah, that’s the plural of “Holmes,” I looked it up) into hooking up.

    Second, I have been confused by the resistance of intelligent neurotypicals to the very concept of functional Spectrics. IMO we are not going to convince most people that our differences are legitimate, much less deserve accomodation, until the neuroscientists establish physical causes.

    • Jenna

      Reply

      Thanks for the comment Claudia! You’ve made some great points about professional communication among “Spectrics.” I’m curious about how you think establishing “physical causes” for autism will improve people’s perception of functional Spectrics. This sounds interesting.

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