Category Archives: Diagnosis

Asperger’s and expectations: a summer of surprises

I’ve learned a lot about expectations this summer. We’ve spent most of our time travelling to visit family or holidaying with close friends. Every second week we’ve been off to a new destination – one trip involved a five-hour flight and seven-hour drive that took us right across the country, another included living with a dog the size of a small horse.

We did a social story about Buddy the dog and then we just crossed our fingers!

Given Ryan’s fear of dogs and his love of routine, I expected some serious bumps along our holiday highway. I was cursing myself for failing to see the big picture as I booked these various trips at different times of the year.

 But Ryan surprised us at every step of the way. The five-hour flight was breeze (Thank you Teletoon!), the seven-hour drive included only one major meltdown and détente was declared with the dog on day one.

As we watched Ryan adapt to new surroundings and new people every week, I was reminded of some wisdom shared with us during our quest for a diagnosis: a health care professional urged us to beware one of the pitfalls of diagnosis: lowering our expectations. I understood what he meant: we would ask less of Ryan, go ‘easier’ on him because he had a specific challenge.

Of course we have made allowances such as:

  • Using visual aids rather than relying on verbal instruction
  • Helping him choose appropriate extracurricular activities
  • Acting as bridge in building friendships
  • Being more understanding about his social faux pas
  • Respecting his sensitivity to smells/sounds

But our psychologist was equally clear with us early on: don’t let Ryan disappear down his rabbit hole of special interests or stay in his small comfort zone. Keep him engaged in our daily lives. Expect him to join in, to be a part of things. And for the most part it’s worked.

Our parents’ group recently had the honour of meeting a high school student with ASD who candidly shared his experiences of growing up with Asperger’s. He shared so many valuable insights:

  • How swimming provided him with an outlet for his anger/energy
  • How his Asperger’s led him to argue endlessly with his parents because his way just seemed better or smarter
  • How theatre became a passion for him and helped him learn how to interact more successfully with others

 But the biggest lesson I learned from this remarkable young man had to do with expectations. His parents had high expectations for him. They expected him to succeed. They pushed him to do his best. And even though he found it challenging, in retrospect he appreciated it.

His words underscored a key part of bringing up any child, but particularly a child with additional challenges: we need to help them push their limits – to stretch themselves – so they can feel the exhilaration of unexpected success.

An unforgettable day: swimming back from the raft

If you’d asked me in June if Ryan would a) go ‘tubing’ attached to  power boat b) jump off a six-foot dock or c) swim out to a raft in the middle of a lake, I would have answered ‘none of the above.’ But there you go, it’s been a summer full of surprises.

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Filed under Diagnosis, Family, Managing Anxiety, Social stories, Sports and extracurricular activities

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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Welcome to Holland: a parent’s perspective on disability

We’ve met some fantastic new friends through our Asperger’s parents network – if you don’t have a network in your area, I really encourage you to start one of your own. Our psychologist helped get us started by asking parents if they’d like to participate and another Mom and I just took it from there!

I love these parents so much – their humour, their ideas, the stories they tell about their kids and themselves – they really energize me. I have learned so much from each of them. Recently, a mom in the group sent me Emily Perl Kingsley’s well-known explanation of what it’s like to give birth to a child with a disability and asked me to share it on my blog, since it really spoke to her. I’m reprinting it here and wanted to share an interview with Kingsley that appears on a blog called Love that Max. Kingsley, a multiple Emmy-award winning writer for Sesame Street, has a son with Down Syndrome, who is now 36-years-old.

I’d love to hear your comments on this piece…and I should say right away that tulips are my favourite flower.

Welcome to Holland: by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this . . .

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, Michelangelo’s David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?” you say, “What do you mean Holland? I signed up for Italy I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in flight plan. They’ve landed in Holland, and there you must stay.

The most important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It’s just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

The pain of that will never, ever go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

 

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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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Dinosaur Diego is just right

Dinosaur Diego, the World's Smartest Dude

Telling your child about his/her diagnosis is a very personal decision. We were guided by an example and a comment from two very different people in our lives. The first were my mother and father. I was adopted as an infant and my parents decided that I would be told about this reality very early on in my life – so early in fact that I cannot actually recall when I knew, just that I always did.

My parents talked about my adoption as though it were a gift. They wanted another child so badly, but couldn’t have one of their own, so they chose me (this was the sixties, when they were lots of babies to be adopted). As a young girl I felt incredibly special: I had been chosen! So when kids eventually made fun of me, I was flabbergasted: “Your parents had to have you. My parents chose me!” The retort was swift and certain and that was the end of that.

My second guide was a friend, who is gay, and who reminded me that creating an air of secrecy around anything that’s a part of you only creates a sense of shame and self-loathing. So our decision was pretty clear from the beginning.

Several books helped: I Am Utterly Unique was on hand when we first told Ryan. He loved it and it immediately got across the ‘you are different and special’ message that we felt was important. Asperger’s Huh? was another one he loved because it looked like a cartoon.

Tonight we just read Dinosaur Diego and I think I’m going to buy it for Ryan’s class to read together. It’s a great story about a boy who loves dinosaurs. Ryan couldn’t relate to the character in some ways, but in others he piped right up: ‘Hey, that’s like me.’ And it is pretty cool to see something you associate with yourself in a book. I would definitely recommend it.

The book was produced in Canada by a great group called Wildberry Productions. They’ve created a whole series of books called We Are Powerful all about kids dealing with challenges like ADHD, Tourette’s, OCD, Dyslexia and Fetal Alcohol Sydrome. I think they’ve done a fantastic job.

What books have you read with your kids that have helped or made a difference?

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Filed under Books & articles, Diagnosis, Fiction

Let’s start at the beginning

In hindsight, it seems like we always knew Ryan was different. From the time he was an infant, and turned his face to listen to ‘You are my Sunshine’ we knew he was special, truly unique. But aren’t all of our babies?

We marveled at his early love of music. We were proud of his gentleness with other children and his grasp of language at a very early age. We crowed about how books were his favourite toy and we laughed at how he always had some small ‘special thing’ in his hand. In short, we had a brilliant little boy and we couldn’t have been happier.

This is one of the first books we read when we were trying to figure things out.

There were other signs too, but as a first-time parent, we weren’t worried. Sure, Ryan loved watching the wheels on his stroller spin. Yes, he wasn’t as interested in toys as his other friends, but he was meeting and, in some cases exceeding, his milestones and the rest was just idle worry.

That changed once Ryan started preschool. He struggled with routines that most of his peers loved – circle time, snack time, arts and crafts. We thought he might be bored. By this time he was an avid reader with a wide variety of interests. Once we went to the Art Gallery of Nova Scotia to see an exhibit about Egypt and the tour guide was so impressed with his knowledge (How many five-year-olds ask “Are those canopic jars?”) that he gave him his own guided tour. I tagged along behind them, picking up all the info I could.

We tried to understand Ryan’s school challenges as best we could. How could a boy who knew so much, struggle with something so easy? We did some research and even considered Asperger’s but the explanations we read didn’t sound like our Ryan – he wasn’t obsessed with trains or cars, he didn’t crumple when routines changed, his motor skills were strong. And he definitely wasn’t remote. If anything he was extremely emotional. It didn’t fit the narrow profile we had of Autism Spectrum Disorders.

Eventually we sought the help of a respected and beloved psychologist in our neighbourhood. We wanted to make sure we had as much information as possible before Ryan started school.

The first thing we learned was that Ryan was extraordinarily gifted in the area of language. It took another year and a difficult first year of school to get the Asperger’s diagnosis.

The first book we read after the diagnosis was the OASIS guide. It was a big fat book, the kind I used to use to squash spiders when I was a kid. I loved that it was written by another Mom looking for answers.

I searched for ‘my Ryan’ in every page. I saw glimpses of him in some stories and not at all in others, but I gradually saw that Asperger’s like any other syndrome affects each child differently. All of a sudden the black and white characteristics I’d read about in the DSM, began to broaden and I could see nuances and that hadn’t appeared the first 10 times around.

If we had to pick some lessons from that early time in our journey they would be:

  1. Listen to your instincts as a parent. If you think there’s a problem follow up and learn what you can.
  2. Diagnosis is a journey, not a destination. It took us several years of of reading, assessments, meetings and ongoing experience to finally reach a diagnosis that made sense.
  3. Labels aren’t as scary as not knowing. The Asperger’s diagnosis didn’t pigeonhole Ryan in our eyes, it only gave us the tools we needed to advocate for him more effectively.

Tell us the story about the beginning of your journey. We’d love to hear from you!

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