Tag Archives: Temple Grandin

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

Growing up with Asperger’s: A Sibling’s Perspective

 As parents we wonder what the impact of Asperger’s Syndrome will on the siblings of our Aspie children. Are we giving them enough of our attention? Are we asking too much? Do their needs take a back seat to the more urgent (or vocal) needs of their sib?

I had an opportunity to ask these questions when I was virtually introduced to Elizabeth Granby, an exceptional young woman who is pursuing a career in developmental disabilities as a result of her deep love for her brother, who was diagnosed with Asperger’s when he was a teenager.

Elizabeth Granby on her brother: "I don’t think there’s anybody in the world who can make me laugh like he can."

Elizabeth recently completed an internship at Holland Bloorview Kids Rehab inToronto and sat down to speak on the phone with me one evening after work.

 Tell me a bit about yourself.

I started off studying media studies and worked in the field for a few years, but it wasn’t where my heart was. 

My brother’s experience made me want to learn more. I feel like Autism Spectrum Disorders are a bit overlooked because they don’t necessarily fit into development disabilities and therefore they don’t really get the support that they need – or the right kind of support.

I’m really passionate about my work now and I want to eventually focus on how to expand services available for people with AS. 

Tell me a bit about your brother and your relationship with him?

 He is 22-years-old and even though he is my half-brother, and there is 10 years between us, we couldn’t be closer. He’s one of my best friends.

He lives on his own now in an apartment that’s close to my parents and he has a support worker who checks in with him once a week.

Right now he’s working on trying to find a job. That’s been a challenge and he tried using different agencies to help. With one agency, his co-workers knew it was a so-called ‘special job’ and they teased him. Now his support worker is focusing on his gifts – like music and wrestling – to try to find a more suitable job. It’s really important to him that he finds real work.

 How would you describe growing up with a sibling with Asperger’s?

It was always interesting. There was never a dull moment. My brother and I are really close and always have been.

It took a long time for the doctors to find his real diagnosis. When he was really young said it was ADHD, then they changed it to Tourette’s Syndrome, but my mom never felt that was quite right. He 14 or 15 when they finally said Asperger’s Syndrome. We started reading more about it then and said ‘Yes, this is exactly what it is.’ It was a relief to finally have a name for it.

I’ve always been a nurturer and that’s what I did with him. When he was young, he got anxious very easily and things could really set him off and start him pacing. I would instinctively grab him in a hug and hold him until I could physically feel him calm down.

What did you learn from the experience?

It really taught me to be flexible. It made me learn early on to be adaptable and go with the flow.

As I teenager I think I felt it more because I required more of my parent’s attention. I got good grades and didn’t cause too many problems. At that time being so flexible became a bit of a challenge.

I spent some time with my grandparents off an on, getting one-on-one support from them and that helped. They always talk about respite support for the family, but it’s sometimes siblings who need it too.

What was the most difficult about the situation?

Sometimes having a brother with AS can make our relationship a little one-sided. We talk on the phone every day. I spend lots of listening to him and supporting him, but I don’t always get the typical support back and that can be a challenge.

As I’ve gotten older I’ve realized he does support me and love me. But he shows it in different ways that other brothers and sisters might. Sometimes I have to look for it.

He knows this is something he needs to work on. When he calls me on the phone now he knows he can’t just launch into his stuff…he asks me how I am. We’ve been working on that for a year. He’s really trying to work on the one-sidedness.

What was the best part?

The laughter. I don’t think there’s anybody in the world who can make me laugh like he can. We both enjoy the same things like live music or funny movie. Just having a good time.

How is your brother doing now?

After he left high school it was hard. He went to community college but nothing seemed to be sticking for him. He would stay up half the night playing video games. He wanted to move on to the next phase of his life but had no idea how to go about that.

When he started looking at his special interests things started to change. He loves wrestling and he started taking lessons and making friends there. On New Year’s Eve my Mom and I were on the phone crying because for the first time he was out with his friends.

What advice would you have for parents who are struggling to parent two different kids in as consistent and fair a way as possible?

Communication is really important. You’ve got to open up those channels and keep talking with them. My parents actually got some great insights into my brother from me because siblings know their sibs in a different way. 

We also had a ‘no lie’ rule after my parents tried to protect me from some difficult information about my brother. I felt really excluded and we all realized that covering things up only made them worse.

 It was also okay to have different rules for different kids in our house – we tried not to keep score! We appreciated being treated like individuals.

My parents would also do special things just with me from time to time to give me a little one-on-one attention. They knew us well enough to see the signs and know what we needed.

Are there any resources you would recommend?

The Complete Guide to Asperger’s Syndrome by Tony Attwood because he actually talks to people with AS and provide good insight into how to work through conversations with people with Aspergers: tips about redirecting and how not to escalate situations.

 I also like watching Temple Grandin’s talks and presentations online.

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Filed under Celebrating Difference, Diagnosis, Family

Declaring 2011 the Year of ‘Being Enough’

I had a brief but wonderful heart-to-heart with a good friend of mine last night who has been an inspiration to me and many other parents. Her name is Louise Kinross and she writes a spectacular blog called Bloom, all about parenting kids with disabilities.

As usual our conversation started in one spot and meandered down a number of paths before arriving at a familar place. A few years ago Louise introduced me to the concept of the ‘Enough House,‘ a reference to the name of a mansion from the Dickens’ classic Great Expectations. “It meant…that whoever had this house, could want nothing else,” says Estella.

This is how I picture Enough House. Not Dickensian, but it is enough.

I remember when Louise talked about applying the concept of the Enough House to ourselves and our lives we both breathed an audible sigh of relief – as though the idea of ‘being enough’ gave us immediate permission to let go. To be who we were, flaws and all. To be whole despite, or even because of, our imperfections.

The topic has come up from time to time on Louise’s blog and after talking about it last night, I’ve decided the coming year is going to be about ‘being enough.’  

There’s an odd by-product that can come from reading inspirational memoirs or watching overcoming-the-odds movies – as affirming as they can be, they can also create high expectations among parents and children.

As Louise writes:  “Somehow it’s not good enough to simply be an ordinary person with a disability. It’s as though the value of a person with a disability hinges on them doing something considered exceptional in the typical world.”

As parents this can mean unrealistic expectations of ourselves. We feel we need to do more and more for our child so that they too can ‘overcome’ their disability. And if they continue to struggle, we wonder where we failed.

But that’s not what I picture life to be like at the Enough House. It is not a place of pressure, but of release, of celebrating the small beauties of everyday life and experiencing the joy that is already there, just waiting for us to walk in and enjoy it. Like looking over at Ryan as the pool today and seeing him spontaneously connect with a young boy and play for just a few moments.

So I’ve decided to take up residence at Enough House this year. I’ll save a seat for you, if you want to join me there.

With best wishes, Anne-Marie

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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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The power of memoir

We are a family of readers. Joyous, zealous, happy readers. One of the early indicators of Ryan’s AS was his ability to read at a shockingly early age. We now know he was reading at a highly advanced level by the time he was three years old and he continues to amaze us with his vocabulary and his ability to decode language.

I never get tired of telling funny stories about his eccentricities and one of my favourites happened when he started preschool. The first week he asked his teacher: “Ms. Pat, what’s a breathing diff?” “Pardon me, Ryan?” “A breathing diff?” he repeated pointing to a first aid sign tacked up on the wall for parents. “Oh, that stands for breathing difficulty!” The teacher looked at me apologetically and said “I’ve never had to worry about anyone reading that before!”

Look Me in the Eye was the first memoir we read about AS

But I digress. Because I’m such an avid reader, I’ve spent a lot of time in and out of books since Ryan’s diagnosis almost two years ago. The behavioural stuff has been good and so have some of the guides, but my favourite to date is memoir.

It is in memoir where I meet potential versions of my son later in life. Iwatch him try to learn to drive. Meet a partner. Break up with said partner. Get and lose jobs. In short, I watch him find his own way in the world.

Of course, I have no idea what Ryan’s life will be like when he gets older, but I take such comfort in listening to and watching these other souls growing up. They whisper: “Don’t worry. It all works out in one way or another.” And that eases my anxiety just a little bit and reminds me we’re all trying to find our way.

The first memoir I read was Look My In the Eye, by John Elder Robison, a skillfully written story by a man who wasn’t diagnosed with Asperger’s until much later in life. His younger brother, Augusten Burroughs, is also an accomplished author.

I found a few sections in this book extremely dark and disturbing – around that teenaged time in life where it seems as though things could ‘work out okay’ or come crashing down around us. But as John grows up, the tale evens out and we learn about how the author’s AS traits land him in a fascinating career and fulfilling life. He has a second book coming out in March 2011 called Be Different that I’m definitely adding to my reading list.

My second memoir excursion was Born on a Blue Day, by Daniel Tammett. Tammett was diagnosed with Asperger’s Syndrome at 25, but is also an autistic savant with miraculous numeric abilities. Tammett’s story is an extraordinary journey: he moves to Lithuania as a young man, he sets a world record for reciting the number Pi to 22,000 decimal places, he learns Icelandic in a week as part of a documentary series. But through it all he shares an intimate look at the non-neurotypical world and it’s riveting.

I’ve read a lot more memoir, but it’s getting late and I’ll save them for other posts at another time.

What are your favourite memoirists and have you seen the HBO Temple Grandin flick? It’s worth it!

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Filed under Books & articles, Non-fiction