Thursday, April 25, 2013

When brain differences aren't deficits

















Neurodiversity suggests that there are benefits to brains that think differently.

In this recent piece in WIRED, Steve Silberman looks at the strengths and skills that result from the unique brain wiring of people with autism, ADHD and dyslexia.

"One way to understand neurodiversity is to remember that just because a PC is not running Windows doesn't mean that it's broken," Silberman writes. "Not all the features of atypical human operating systems are bugs. We owe any of the wonders of modern life to innovators who were brilliant in non-neurotypical ways. Herman Hollerith, who helped launch the age of coputing by inventing a machine to tabulate and sort punch cards, once leaped out of a school window to escape his spelling lessons because he was dyslexic."

I tweeted Silberman to ask whether he includes intellectual disability in the neurodiversity fold. He tweeted back that he did, but hadn't written specifically about it yet. Did I have any pointers?

I've often felt that my son Ben's way of thinking conveys certain benefits.

He's real, for example, because he doesn't wear the deceptive social mask we 'neurotypicals' don to project an image of invulnerability, impress others and trick ourselves.

Ben is also able to live in the moment and he's able to slow down a moment to appreciate it.

He also doesn't wish to be someone else, which I think is very rare in our world. I remember a school assignment I did with him and in answer to: "If you could be anyone in the world, who would you be?" his no-brainer answer was: "Me."

What do you think are positives that come from intellectual disability?

I plan to write to Silberman more about this and would love to include your ideas. Thanks!

11 comments:

I think one of the great things about my son Paul is that he totally embraces what makes him happy, whether that is dancing to the Wiggles, eating spaghetti, swimming or whatever it may be, he is in the moment and his joy is so evident. He doesn't think "am I too old to be watching this? is it developmentally appropriate? do I have sauce on my chin?" he is just straight up joy and it is contagious. I lose a lot of my self-consciousness when I am with him and he wants to run in the rain. Why not?

Louise I totally agree with the he's real statement you made. Ashley too is very real and not concerned with what others think she feels free to express herself happy or sad when she feels the need. I truly believe she is happy just being herself too just like Ben.

This is great, Louise, thanks for this post.

Note to parents: I'm well aware of the tough, daily challenges that ID presents. But I would also love to hear from more parents (and folks with ID themselves) about what they love about their kids' (or their own) minds. I'm not making light of anything. Just trying to honor and respect the humanity of everyone, no matter where they are on the various spectra. Thanks!

My son Nolan is 5 and Autistic. We are very lucky in that he is verbal and has at least average intelligence. He is such a loving little guy. My heart melted when he asked me if he could hug me for the first time a few weeks ago. He lives life by his own rules. I love figuring out some aspect of his behavior because I've made a connection with him in a way that I haven't before with NT's. His little hand in mine makes me a braver, more outgoing person as well. He and I share a gene deletion. While I have not been diagnosed and have never had the disabling sensory and anxiety issues that he has. I have come to understand my own social behaviors and cognitive skills much better than I ever could have without him. For me, it's an honor to have been given the privilege of being his parent. I can't wait to open doors for him in his life and to watch him as he grows. My older son Oliver is going through the ASD diagnostic process now and exhibits several behaviors associated with Asperger's syndrome. I am so proud of him for his abilities and his humor.

I think (and I feel like I've been talking about this a lot lately :) is that ID makes our world more diverse, which is a beautiful thing. ID brings about a diversity in perspective and ability in ways that are often unexpected and wonderful. I think it teaches others to value all abilities and demonstrates that everyone has something to share and teach. And the sincerity and honesty that often comes hand in hand is an amazing thing.

my 7 yr old daughter with down syndrome doesn't like to multi-task, and mostly won't. in a couple desperate attempts to get her out of the door on time, i've handed her a toothbrush while she's sitting on the toilet, which usually leads to her neglecting what she was doing there in the first place.
if someone asks her a question while eating, she will ignore them, so as to say, "can't you see that I'm EATING? ask me AFTER ." i love this about her. how many of us are so run off our feet trying to do a million things at once and feeling so empty from it in the end? she teaches me to remember the art of doing one thing at a time.

"What do you think are positives that come from intellectual disability?"

Gabriel is our eight year old son who has Down syndrome. I love how his brain works...

Gabe has a crazy-good memory. And being a visual learner, he learns best when completing tasks hands-on. Board books and sight cards were his "thing" as a toddler.

He was completely fascinated with pictures and words. Through sign language, we communicated with him early on, and it was amazing to see how quickly he adapted the sign in the appropriate context.

His interest in using our computer was evident in his fourth year -- and he's mastered keyboard shortcuts that I never use. He's open minded to new ways of doing things. I think it empowers him.

And I like his curiousity. He doesn't censor it. It keeps him exploring ideas about life. (For example, he has a real interest in how the human body functions lately...Both my husband and I have to explain what happens to the food once eaten and what is the job of mucus -- over and over! LOL!)

Unlike "typical" children, Gabe has to prove more -- to the outside world. Perhaps to himself? At home, my husband and I are very open and easy, allowing Gabe access to the desktop, laptop and tablet.

There is no one to follow him around or to treat him differently at home. We really encourage him to be himself because we know that when Gabe goes to school, his whole environment changes and uncertainty of who he is in the social arena is strong.

But I so admire how my son has learned to navigate the different worlds of home and mainstream school. I think it takes a lot of difficult mental work to understand social nuances as well as exclusion. (Just this morning, none of his peers said hello to him, as they did to his little friend standing beside him at the school.)

I also think that with the extra chromosome comes additional intuition. He reads people's emotions well and this can work for or against him. My husband and I seem to have an ongoing conversation with the school Gabe attends about this idea. Gabe will react to how he's being treated.

If he senses someone who is impatient, unkind, angry or frustrated, he reflects similiar behaviour. I believe that he can't handle it, so it is a "fight or flight" response.

And if he reads you as open and sincere, he will give back ten-fold. It will always be a working relationship with our son -- no matter who you are. He sees relationships as equal.

So, to me, our son's extra focus to learn, his uncensored curiosity (with little to no concern over consequences), his tenacity to be part of a social group no matter the prejudice and his intense intuition have been great lessons for us as his parents.

If nothing else, Gabe has taught me to think and rethink because what I've learned up to know about intellectual disability (even that phrase goes against my internal grain) has been dead wrong. Anyone can learn -- it is HOW he is encouraged to THINK. :)

I'm going to think about this first...its a great question! We are off to a conference in Winnipeg tomorrow and this will give me a lovely focus. Thanks Louise, for all you bring to our attention

My son has a rare genetic syndrome and has been labelled intellectually disabled. But he's also the most "centred" person I know. What I mean is, he very rarely worries about the future - he lives in the now. And because he gets immense joy out of the simplest of things - a comic book or a TV show - those "now" moments are filled with happiness. I know when I've had a tough day at work, I can curl up with him while he's gazing at his books and I get an all-over calm. It's like he travels in a bubble - and sometimes I can share that invisible sphere of serenity with him.

Hi Louise,
I would have to say the positives are the frankness in saying what they really feel not bowing to social norms or expectations. I also really value the sheer honesty, no sugar coating just the truth! I also value that they are alright with who they are(at least I assume so). I find many people, myself included often have silly inhibitions and often hold a part of ourselves back.

I agree with so much of what has been said already. My non-verbal, 9 year old son with ID is very much in the present moment. He doesn't dwell on the past and he doesn't worry about what's to come in the future. He takes pleasure in things that most people are often too busy to take notice of. He is very loving and thoughtful and in many ways naive and innocent. He is very accepting of others and he is genuinely interested in interacting with people - even though he is non-verbal.

I also have two NT kids and lately I find myself marvelling at the fact that some of the unique extras that go along with raising my son (with ID), are at times easier to manage than some of the typical extras that go along with raising my NT kids.

Although my son has missed out on a lot of the typical childhood experiences that my other two kids have taken part in, like birthday parties and play dates, there are issues that go along with the typical childhood experiences that I'm happy I don't have to deal with with him (other parents, kids that I'd rather my children didn't play with, etc.).

For my son, birthday parties are family events. Play dates are with his brother and sister. He interacts with his friends at school. He goes to some social groups with other kids who use speech devices to communicate. He plays on a soccer team with other kids who have special needs. These are the childhood experiences he knows and loves and to me it's a refreshing change from the NT world of my other two kids.

The fact that my son is non-verbal makes things challenging. Are there positives to having a child that can't complain, grab another child's toy and scream 'mine', use hurtful words, express frivolous wants and needs, argue and talk back? Absolutely. Would it change who he is if he could verbalize all those things? Absolutely. But would he express those types of things if he could talk? Most of them - no. That's just not who he is (Okay, maybe the frivolous wants and needs - he is a kid after all!).

It's an impossible task to separate his communication disorder and his intellectual disability from the person that he is. As the saying goes in the special needs world, I recognize that neither of those things 'define' him, but I honestly can't imagine him any other way.

I so badly want to protect him from a society that might crush his spirit and tarnish his innocence - my funny guy that tries so hard and does his best with things, who is so motivated to connect with others. I can only hope that others see in him the amazing person that I see.