Tag Archives: Asperger’s diagnosis

To the Learning Centre, with love

For the past seven years we’ve sent our eldest son off to school every day and hoped for the best. Some mornings, we’ve held our breath and wondered if/when the call from the principal would come. Other times we’ve laughed with tears in our eyes at the things he’s accomplished easily – things that we thought would be hard, or even impossible.

IMG_3774

He is ready for middle school, but am I?

We’ve worked with new teachers every year and several new principals, but through it all the Learning Centre in our neighbourhood school has been a place of refuge, understanding, and true partnership.

Today is the last full day of school and I’m overcome with emotion at the thought of saying good-bye to the people who’ve helped my husband and I raise our son from a small boy into a young man. Our Learning Centre teacher has been a constant source of ideas and inspiration, our colleague and co-conspirator, a steady hand in the sometimes stormy seas of elementary school. Our son is ready for middle school because of her.

Like us, the Learning Centre has been there for our son every day. Like us, the teachers in that centre have asked a lot of him. They’ve expected him to try and try again. Like us, they’ve loved him, cheered for him, thrown their hands up in the air at times, and then used those same hands to hug him or cajole him or give him a mighty high five. In short, they’ve helped him begin life’s most important journey – the path to finding himself, his own truth, his own way, outside of our family.

How can I possibly recognize the gift that these teachers and educational program assistants (EPAs) have given to our family? My best friend smiled at me as I tried to find just the right thank you – a gift card just doesn’t seem to capture the enormity of the contribution they’ve made.

Before we even had a diagnosis the Learning Centre was there for helping our son adjust to the routines of school life, giving him a quiet place in the midst of the sensory and social overload. And they were there for us too, as we navigated new terrain.

Once we knew about the Asperger’s, we’d sit around the table during program planning meetings and compare notes. What successes were we seeing? How could we tackle the latest challenge? And always, at some point, we’d end up laughing and sharing the stories that made us smile. That’s the part that always brings tears to my eyes – the moment when a teacher, like a grandparent or cherished aunt, shares the same intimate appreciation of your child’s special gifts; when you marvel at the same small things that are almost invisible to others.

Don’t get me wrong. It hasn’t always been a picnic. We’ve all had our moments along the way. Times of intense worry (on my part) or times where the way forward hasn’t been clear. Or times when we’ve wondered if shrinking resources were going to make life more challenging for everyone.

But at the end of the day, the Learning Centre has been a tiny perfect microcosm of the community that I wish all our children could grow up in, a place that:

  • truly sees and celebrates the individual, without losing sight of the collective
  • has caring people who are there to help, but are equally intent on stepping back so kids can stand on their own
  • doesn’t feel sorry’ for our kids! They embrace their strengths and adapt for their weakneeses
  • admits there are at least ten ways to do every task  (especially if you visit the Dollar Store or use video)
  • recognizes that a joke is way more effective than a raised voice (I’m still learning this one)
  • is full of warm hearts and cool heads – a perfect combination when things get rocky

So as I look at pictures of my son’s Grade Six graduation, I know that behind every look of pride and joy and hard-won accomplishment stands the care and support of our Learning Centre staff. I’m not really ready to say good-bye to them, but I’ll never stop saying thank you.

2 Comments

Filed under Celebrating Difference, Education, Family

Reflections on 10 years of marriage

Credit: digitalart

We’re celebrating our 10th wedding anniversary this week. It’s a funny kind of milestone, since we’ve actually been together for 16 years (and have known each other for more than 20), but I’m a sentimental sucker so we went out for a nice meal and had a great evening. As we shared a few glasses of champagne I reflected on what particular brand of magic (or prayer!) helped us make it through the past decade which included: one move, two babies, one crib (unused), two diagnoses, five nannies, and the same old double bed.

My best friend often talks about 90% of parenthood being about ‘showing up’ and I believe her. Parenthood isn’t just about the big moments, like Ryan learning to ride a two-wheeler, it’s about all the little insignificant moments in between – the teeth brushing, story reading, bum wiping, sock sorting, lego picking upping, lunch packing, and sunscreen applying. In short, the stuff of daily life.

As I enjoyed a second, much deserved glass of champagne last night I realized the same held true for marriage – 90% of it is showing up. We just need to show up for slightly different things – like listening to each other’s work stories, or remembering to compliment, or to apologize, or to ask for something. And it’s not just about ‘being there,’ it’s about actually being present.

Here’s a few things that have helped with that:

  • Date night. Yes, it’s trite, but we have a weekly date night. I’d be embarrassed about it, but it really works! It’s the one night where we go out and talk, laugh, and leave our ‘business meetings’ about life and scheduling behind. Some of our friends book a night at home so there’s no sitter cost and that’s great too. I work from home, so I need to get out. We have a standing order with a babysitter and that’s worked for us.
  • Shared interests. We are nerds who love a lot of the same things in life: politics, newspapers, camping, birds, stars… it’s made a big difference in our ability to enjoy each other’s company and connect during good times and bad.
  • Anything said in the dark doesn’t count. This started when the boys were babies and in our bed and NOT sleeping. If the light is out there’s an amnesty on any cussing or complaining that takes place. Next morning is a new day.
  • Friends. Hanging out with friends really takes the pressure off your primary relationship. It also puts life back into perspective.
  • Self-care. When I started exercising again my outlook on life improved dramatically. When I started meditating the same thing happened.

I’m sure my friends are laughing as they read this post, since I’m certainly not a poster child for the ideal marriage, but I’m ‘dancing with the one who brung me’ and feeling really good about that. We’re laughing together. Crying together. Sometimes yelling together (or at each other). In short, we’re showing up – each and every day.

5 Comments

Filed under Family, Self-care

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.

3 Comments

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

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.

2 Comments

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.

13 Comments

Filed under Celebrating Difference, Diagnosis, Family

Navigating the minefield of extracurricular activities

I know we looked completely crazy to the parents sitting near us in the skating rink today. After all, how many parents laugh, hug and practically cry as they watch their child glide down the ice? But we knew how hard won this icy flight was for Ryan and we couldn’t help ourselves. It was a big deal and we knew it.

Finding activities that work – and knowing when to push your child and when to throw in the towel – is such an intricate dance with any child. Add Asperger’s Syndrome to the mix and it becomes a bit more complicated.

Ryan started skating lessons before his diagnosis and his initial reaction to lessons was one of the things that hinted that he may be on the spectrum. He hatde his uncertainty on the ice – and his fears scared the bejesus out of all the other little kids in the dressing room. Oh the cold hard stares we got those Saturday mornings.

Once we coaxed him onto the ice (talking about how he was Anakin Skywalker travelling across Hoth) he would lie down more than stand up and use his skate to repetitively take chunks out of the ice . We all felt horrible and at a loss. But we peservered, made some small gains, and then abandoned skating for a year.

Now we’re so much more prepared to meet Ryan’s needs. We know one-on-one instruction is definitely a must in his case. We also know that skating, bike riding and other activities are naturally going to take longer for Ryan because of the coordination/gross motor issues that often accompany AS.

And we prepare his instructors in advance. I recently met with the aquatics supervisor at the pool where he receives one-on-one instruction. My goal was to share a quick handout I created about Aspergers. He was surprisingly positive and open to the piece, so I’m reprinting it here, in case someone else finds it helpful.

Three Things You Need to Know about Asperger’s Syndrome

1. It’s neurological. That means Ryan’s brain is wired differently than ours and he experiences the world differently. The rules that most of us follow quite naturally don’t really make sense to him.

Listening. This is Ryan’s biggest challenge. The pool is a very overwhelming place for him. His brain is like a blackboard filled with sticky notes and they all look the same, so things that we block out (background noise, the shimmering water, the lights) all demand his attention at the same time.

  • What works: – Visual instructions. Showing rather than telling. Ryan’s very smart, but processing verbal instructions is difficult. Show him the list of what he needs to do to get his badge and check off the things he accomplishes.
  • What doesn’t: Don’t expect that saying Ryan’s name or calling to him will get his attention. I often touch his shoulder to ensure he connects with what I’m saying.

 2. Asperger’s makes the world a confusing place. Things that most of us learn, know and remember (like I’m safe in the water when my teacher is here or I can’t run on the pool deck) aren’t as easily accessed by kids with Asperger’s – that means we need to give them lots of reminders.

Staying on task. All Asperger’s kids resist change because it scares them. Ryan resists change, so learning new things can take a lot of time and patience.

  • What works: Make things a game. Ryan loves role playing The offer of doing something ‘fun’ after he tries a new thing works well too.
  • What doesn’t: Talking too much. Short instructions. Gentle encouragement. The promise of something fun after something hard, is much better than long negotiation.

 3. Ryan’s brain is an eccentric, but exciting place. He’s command of language and concepts is very advanced for his age. Don’t be surprised if he wants to talk forever about a computer game or if he uses very big words.

  • What works. I use Ryan’s love of language and information to keep him on task. Give him a word he doesn’t know or explain how something works and he’ll be listening with laser-like focus.
  • What doesn’t: If he would rather talk about computer games than do what you’re asking, use what he’s talking about to your advantage (i.e. It’s time for the Super Mario brothers to swim up to me…)

I have this in Word format. If you want a copy just let me know and I can send it your way.

I would love to know what sports/activities your kids like and why? And how do you prepare them and others?

4 Comments

Filed under Education, Sports and extracurricular activities

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?

Leave a comment

Filed under Diagnosis, Education

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!

Leave a comment

Filed under Diagnosis