Tag Archives: Neurotypical

The Kindness of Strangers: Part One

I think what makes the kindness of strangers so powerful is the fact that it’s unexpected. We’re not looking for people we don’t know to go that extra mile for us, the way we hope family and close friends always will. And that’s why those small acts of kindness have the power to sweep us off our feet.

Take for instance, the incredible story forwarded to me this week by a friend at Carleton University. Confronting Asperger’s in the classroom is a lovely gem, wonderfully written, that tells the tale of several Carleton students who have Asperger’s Syndrome and how they, with their professor’s help, are navigating the maze of university life.

I was struck by two things right away: first I was moved by how a bit of extra effort on the professor’s part yielded such incredible dividends on the part of the student. The time he took to understand his student and adapt his style meant the difference between someone just ‘getting by’ or reaching their full potential. I was also struck by the reciprocal nature of his gift – how his kindness enriched him and opened his eyes to Asperger’s students and their particular needs and abilities.

I can imagine when dealing with students how difficult it must be to build relationships and how much easier it is to focus on things like ‘outcomes’ and ‘compliance’ and ‘socially acceptable behaviour.’ 

Now I See the Moon, by Elaine Hall

I’m reading a book right now called Now I See the Moon. It chronicles the journey of Elaine Hall, an L.A. acting coach for kids who adopts a young boy from Russia and soon finds out he is autistic. Her story is full of wonderful insight, starting with the book’s title, which finds its origins in a Japanese haiku:

 Barn’s burnt down –

now

I can see the moon.

That poem just makes me giddy with unexpected delight – how something you assume is awful is actually a hidden gift. Hall devoted years of her own working life to her son’s education and I was struck by her focus on meeting her son ‘where he lived,’ rather than trying to pull him into our neurotypical world. The people working with her son weren’t focused on changing his behaviours at first, they were focused on understanding those behaviours, matching them, and then using the resulting connection to build a relationship with her son. Once that relationship was established trust was able to grow and new doors opened.

When I read the article about the prof at Carleton University I felt the same way. He took the time to listen and learn, and the doors opened wide – not only for him, but for his students too.

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Filed under Books & articles, Celebrating Difference, Family

A tour of the Aspergian mind with John Elder Robison

I had the honour of hearing Naomi Tutu speak at a conference I attended recently inVancouver. Her message was powerful on several fronts: first, she called on each of us to be a ‘voice of courage’ in the face of injustice.  She also urged us to celebrate – not hide – our differences.

I was thinking of her words as I finished reading John Elder Robison’s latest book, Be Different: Adventures of a Free-Range Aspergian¸ on the plane on the way home.

Robison’s memoir, Look Me in the Eye, was one of the first books I read about Asperger’s after Ryan’s diagnosis, so I had high expectations for his second effort. I wasn’t disappointed.

LikeTemple Grandin, Robison has mined his own experience to help fellow Aspies, parents, and teachers better understand life on the Autism Spectrum. Today Robison is a successful author and businessman whose passion for electronics has helped him build a fulfilling life for himself and his family.

His approach won me over at first glance – here is a man who is celebrating the gifts that come with Asperger’s and sharing ideas for leveraging those gifts.  “Asperger’s was a disability – that’s what the books said. I’m still not sure I believe that,” he writes early on.

He then goes on to catalogue his first-hand experience of the brain differences that come with ASD and their benefits: his incredibly visual mind, his ability to remain calm and unemotional in taxing situations, his intense focus, concentration, and ability to learn quickly in areas of interest, his use of logic to solve social problems and his attention to detail.

But make no mistake, the knowledge Robison shares with us is hard-won. Before his Asperger’s diagnosis in his 40s, he spent at least some of his youth knowing he was very different from his peers (but not the reason why) and wondering if he was going to grow up to be a serial killer. “Learning I was a perfectly normal Aspergian male (and not a freak) was a revelation that changed my life,” he says.

Robison gives us a great guided tour of the Aspergian mind, reminding me of the wiring differences that explain some challenging Aspie behaviours:

  • Not responding when called: hyper-focus on internal thoughts, special interests, or sensory sensitivities
  • Negativity/pessimism: smaller range of emotions in a short time period, difficulty with perspective, planning for the worst to reduce anxiety, getting stuck on thoughts
  • Inappropriate responses to difficult situations: hyper-focus on internal thoughts, inability to read others

He wraps up his book with a theme that I’ve read about before – Aspergians identifying and using their special interests to find meaningful work after school. But Robison adds two other, equally important elements, to the equation – focus and hard work and resolve. And as a parent, that’s the challenge that lies ahead.

I hope Robison keeps on writing and I’ve got my fingers crossed that he will one day visitHalifaxfor a lecture or book tour. Maybe I’ll invite him myself. I’m sure we could fill a hall at SMU or Dal with parents and kids who would be eager to hear his story and his ideas firsthand.

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Filed under Books & articles, Building social skills, Celebrating Difference, Non-fiction

‘Normal is a cycle on a washing machine’

If you received our Christmas card this year you’ll see that line. Here’s where I got it: from a cool new documentary called Neurotypical that’s been entering film festivals across the United States including Sundance and Tribeca. I hope it makes it because I can’t wait to see it.

Have a look at the trailer.

And if you want a good laugh, check out the page on the film’s website about what being neurotypical is all about. I’ll get you started with the first sentence:

“Neurotypical syndrome is a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity”

I love this take on how the autistic community views us!

It’s a strange balancing act – being a parent of a child with Asperger’s. Part of what we want is for our child to fit in, to feel as though they belong. We teach them social skills, we help them smooth the rough edges. But there’s another part of me that wants to rebel against ‘fitting in,’ a part of me that wonders is that strategy is really helpful.

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Asperger’s 101

We belong to a relatively new network of parents, all of whom have kids with Asperger’s or similar challenges, and I was just recently saying how the playground can feel like the 7th ring of hell as I watch our beloved boy doing some very confusing (read: Aspergian things).

The parents talked about the balance between obligation I feel to be educating others about Asperger’s and Ryan’s right to privacy. At this stage, I’m erring on the side of education, because from what I’ve heard from other parents, eventually kids can clam up about their diagnosis as fitting in becomes more and more important to them.

There are lots of great resources out there to explain Asperger’s to family and friends. The OASIS website is a treasure trove of info from a basic “What is Asperger’s fact sheet” to a letter for grandparents (that is a little too long, but filled with good info).

When we first researched Asperger’s what we read didn’t sound like Ryan at all. It was all too vague or too clinical. Here’s what we’ve learned about Asperger’s so far (and we welcome corrections, additions and general comments!):

1. It’s about the brain, not about behaviour. As we tell Ryan ‘Your brain is wired differently. It makes some things easier (like reading) and some things harder (like managing ‘big’ feelings). AS kids see the world through a different lens and we have to constantly remind ourselves of that.

2. Not every Aspergian is obsessed with cars or trains. Yes, kids with AS tend to have special interests, but Ryan’s interests actually change regularly, with the exception of reading, which is constant. What is distinctive about AS kids is that their special interests tend to be all encompassing, so they will often lecture others about their passions with little regard for the reciprocal nature of conversations. Their voices may also sound wooden or flat.

3. Little professor syndrome: “Daddy, do you hold me in lower esteem than my brother?” Ryan’s highly advanced use of language is extremely entertaining (and occasionally embarassing) and is somewhat typical of AS kids.

4. Completely misses the hidden curriculum.  This is where things start to get difficult for the kid with AS . While they might be able to read and even respond to questions, they often ‘don’t get’ the unwritten rules that are part of everyday functioning in our ‘neurotypical’ world:

  • reading facial expressions (they look bored by all my talk about spies…)
  • unspoken rules (you don’t tell the teacher ‘you shouldn’t yell at him’)
  • appropriate and inappropriate language (you can talk about poo with your friends but not the principal)

In short, AS kids really ‘don’t get it’ because their brains function completely differently than ours. I’ve heard of a number of AS young people and adults who take acting classes to ‘learn’ how to respond to particular situations.

5. Difficulty understanding the emotions of others.  AS kids often have a neurological roadblock that keeps them from understanding or predicting the behaviour of others. They sometimes can’t see the connection between their actions and how they impact others and they can have difficulty seperating fact from fiction (Ryan lost something at school this week and immediately assumed someone stole it from him, even though he had lost it.)

6. Accessing information from one situation and applying it to another. Most kids learn something a few times and then can access that experience and apply it to different situations. An AS mind is a busy and confusing place, so although kids may be able to recite the correct response to a difficult situation, they can’t necessarily access that knowledge when they need it.

7. Visual trumps verbal. Although Ryan’s verbal skills were very advanced at a young age, his ability to process verbal requests is quite limited. Written instruction works best because of his highly visual mind. I really liked the way the HBO movie about Temple Grandin illustrated this phenomenon. This is a real challenge for me as a parent, since I’m a big talker and all that does is add noise and confusion to any situation.

8. Sound, smell and sight sensitivities. Someone once described an Aspergian brain as a blackboard covered with hundreds of similar yellow sticky notes. They all look the same and are overwhelming because no one note stands out. That’s the sensory overload experienced by some AS kids – the white noise at the pool can be overwhelming, or a seemingly mild smell like cucumber, even the hum of the fluorescent lights at school can be difficult.

9. Social interaction can be hard. Impaired socialization is a hallmark of Autism Spectrum Disorders, so although an AS kid may want to interact (and many do!) they don’t know how to enter a conversation or ask to join a group of kids.

10. “…Some argue that persons with AS are under constant or near-constant stress.” This was one of the hardest sentences I ever read about AS. The world can be an extremely confusing and unpredictable place for Aspies. One online resource is called Wrong Planet and I think that just about says it all.

The last thing I should say is that the Autism Spectrum is incredibly broad, so some of the issues above won’t affect all kids with AS. Each kid is different. That was one of the challenges with diagnosing Ryan originally – he didn’t fit the mold in some ways, but he did in others.  

What would you tell others about Asperger’s? What resources have you used to explain it to friends and family members?

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Filed under Diagnosis, Education