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Wednesday, April 2, 2008

Ripping Off the Band-Aid

Asperger syndrome is a condition marked by impaired social interactions and limited repetitive patterns of behavior. Motor milestones may be delayed and clumsiness is often observed. Asperger syndrome is very similar to or may be the same as high functioning autism (HFA).

*****

At dinner time last Wednesday, Garrick asked "Did you know that Thomas Edison had a learning disability?" This was news to me. "Really? What kind of learning disability did he have?" "Uhh.... I think there's just one kind."

*****

When Quinlan was diagnosed with Asperger Syndrome, at the end of his second grade year, it shook me. He'd been identified as having some sensory issues back in kindergarten and had been receiving occupational, speech and physical therapy through our incredible school system, but somehow it had never occurred to me that there was something "real" and intrinsic wrong with or different about him. I remember getting the call from the school psychologist at work almost four years ago now, and weeping into the phone while she detailed his test results.

*****

"Actually, buddy, there are lots of different kinds of learning disabilities. Have you heard of dyslexia?"
At this point, I was vamping a little -- stalling for time to decide quickly how far I wanted to take this conversation with the kids. Michael was out for the evening and I was quite on my own. "People with dyslexia have a hard time reading because their brains don't process the words on the page the same way most people do."

*****

We had never heard of Asperger Syndrome before Quin's diagnosis, but with the internet as our friend, we learned quickly. The shock of recognition hit time and time again as we scoured articles, grasping at the proverbial straws. Repetitive patterns of behavior, check. Restricted interests, check. Motor clumsiness, check. Atypical use of language, check. And on and on.

*****

"Can you think of any other learning disabilities?" "Down Syndrome!" Quin piped up. "Well, sort of. Down Syndrome is more of a developmental disability -- though it certainly affects a person's ability to learn, it affects a whole lot of other things, as well." "What did Thomas Edison invent, again?" This from Garrick, who is still thinking about facts and history and science and wanting to get it all right. "The light bulb, Peanut. He invented the light bulb."

*****

News of Quin's diagnosis was received by our extended family members with some controversy. Michael's mother's immediate reaction was "Oh yes, I thought that might be the case." (But it never occurred to you to suggest it to us?!!?) My mother's reaction was the opposite -- complete denial. It took months and months for her to accept that Quin wasn't just a bit unique, that he had a clinically diagnosed developmental disability.

*****

"What about autism, guys? You know about autism, right?" One of Quin's best friends has a younger sibling who's autistic, and I know that the elementary school has discussed autism with the student body as a group. "Oh yeah, autism!" This from Quin, who was following the discussion quite a bit more actively than I would have expected him to. I paused, not sure how much further down the path to go.

*****

When Garrick was diagnosed with Asperger's at the end of his first grade year, it was almost old hat to us. We'd had a year to get our bearings with regard to the extra services the school would provide Quinlan, and the sting of potential stigma at the new label had mostly faded. Quin was still Quin, after all, with all of his quirks and talents and undiscriminating heart unchanged. He was making good progress with occupational and speech therapy, and I was learning to game the system to ensure that school provided everything they could to ensure his academic success. My immediate reaction to Garrick's diagnosis was, "Great -- now I have the leverage I need to make sure he gets a teacher next year who's not going to be so rigid that he's out in the hallway crying three times week." First grade was a tough year for my baby.

*****

A very deep breath, now. "There's actually another learning disability that's similar to autism, but not as severe. It's called Asperger Syndrome." "Alexander Graham Bell invented the telephone." "Absolutely right, G-man. Um, Asperger Syndrome is kind of interesting. Some of the characteristics of Asperger Syndrome are things like hand-flapping, Quin." Silence. What have I gotten into? Help! "Gar, another characteristic of Asperger Syndrome is being able to learn and retain lots of factual information about things." "Quin, do YOU have Asperger Syndrome?" This delivered to his brother with the same sly, teasing smile on his face that he uses when he makes an outrageously false and insulting comment, like "My brother has no brain!"

*****

Because Garrick's symptoms present in very different ways from Quin's, there once again was some controversy in getting some members of the family to accept his diagnosis. This time, I didn't really care. I saw no need to haul Garrick down to Children's Hospital for more formal testing, as I had Quin -- what difference would it make? Bring on the speech therapists for social pragmatics and give us a warm and accepting second grade teacher, and we'll manage, thanks.

*****

Jumping off the cliff, now. "Actually, Garrick,
people who are experts in this kind of thing have told me and Daddy that both you and Quin have a lot of characteristics of Asperger Syndrome. Like Quin's hand-flapping and your ability to absorb and remember all those facts about the solar system." "And about dinosaurs?" Quin is always my helpful boy. "Right, Quin, and about dinosaurs. A lot of people with Asperger's are only interested in one or two topics, like model trains or dinosaurs, and learn as much as they can about just that topic." I can't remember another time that they were both so rapt with attention. "Quin, you know how you have such a fabulous memory and such an intense sense of smell? That's to do with Asperger's. And Garrick, all of the information you've learned about so many things -- dinosaurs, the solar system, the human body -- that's to do with Asperger's, too."

*****

Quin's magical year was fourth grade. Things just suddenly got easier for him. Instead of being socially isolated, he made one terrific friend (to this day, his best friend) and that experience just opened his whole world. He'd always been comfortable interacting with adults and with children younger than himself, but had no idea how to connect with his peers. In fourth grade, that started to change.

*****

"You guys know how you have speech therapy in school, and sometimes you've had occupational therapy? And Quin, you remember having physical therapy? Those were things we arranged for you both to help you learn stuff that is harder with Asperger's. Basically, people with Asperger's brains just work a little differently than most people's, and some things that most people learn just by instinct are harder for people with Asperger's to learn. So that's why we arranged those things for you, to make it a little easier." I kept checking their faces for any signs of confusion or distress, and there were none. Just rapt attention and an eagerness to understand.

*****

There is some controversy in Asperger's circles as to whether to tell a child that he or she has the syndrome. One school of thought is that the kid will self-identify as different or somehow wrong, causing poor self-esteem and exacerbating any existing emotional problems. Another school of thought is that knowing the diagnosis is empowering to kids, allowing them to understand why they feel different from their peers, and giving them tools for coping with those differences. Obviously, it's going to be different for everyone. But I kept remembering what my friend Val had told me, years ago. Her daughter is some years older than Quin, and she has Asperger's. I had sought Val out for advice and support in my weeks of flailing after Quin's diagnosis. "You'll know when it's time to tell him," she told me. She was right.

*****

Dinner ended, as dinners do, and the kids scattered to read books and pet the dog and line trading cards up along the floor of the playroom, as kids do. Alone, I cleaned the kitchen and made the lunches and walked the dog and the whole time felt as though the earth were spinning in a slightly different sphere, at a slightly different angle. Had anything really changed? Of course not. Was it different? Absolutely. Later, as I tucked each of my monkeys into bed, I made sure to invite more response -- "As you think about this in the days and weeks to come, if you have any questions, let me know" -- but they were both completely unflapped by the whole discussion. It's just one more set of facts to store away about the world and How Things Are.

The Band-Aid is off.

*****

Today is World Autism Day. For some wonderful posts on autism, visit The Domestic Goddess and The HG-Spot.


9 comments:

HG said...

Beautiful!

I think I'm going to add this following bit to my entry too:

"Basically, people with Asperger's brains just work a little differently than most people's"

My husband has a much younger half-sister (she's 14) who has pretty severe PDD. What you said above is exactly how I explained her condition to my girls. I'm a bit relieved that you used this language too :)

Domestic Goddess said...

Bravo! Well said.
We've always explained it to them. I don't know that Bugaboo even has a clue. He's just Bugaboo. Bug boy explains it a different way. "Bugaboo is alot autistic. I'm a little autistic. Everybody has a little tiny bit of autism."
Amen.

Adorable Girlfriend said...

What a lovely post. If only more people could read this and understand.

O said...

Phenomenal. Good for you, explaining so well and intervening, early, so appropriately. I will always wonder how my nephew's life might have been if these things had happened for him. (His constellation of diagnoses is different, but so was his parents' reaction.) Super, super post.

wellreadhostess said...

well done.

Anonymous said...

Beautiful post.

Marcia

nutmeg said...

This was just excellent. I think you handled the situation perfectly. Your friend's advice could be applied to so many issues in parenting and I rely on those instincts a lot. The best part is that you waited until you had an open window. You didn't give the information extra power or weight by forcing the window open or throwing a brick through it. And the boys most likely took in exactly what they could handle. Now they will process it at their own speeds and surely come to you for more information. Kudos to you!

KathyLikesPink said...

My husband has Asperger's. He is incredibly intelligent and has a very successful career.

Please email me if you would like to have an email chat sometime.

KathyLikesPink@gmail.com

Domestic CEO said...

I missed this when you first posted it, so I'm only reading it now, but it is BEAUTIFUL! I often wonder if I should have waited when telling my boys about Asperger's, and if I had, I would have loved to talk about it just like you did.