|Helping us celebrate the diagnosis: the|
Congratulations! You're an Asperkid!
box from the supremely amazing resource Asperkids.
This week a study came out that found that it may be possible to identify signs of autism in infants as early as six weeks of age. Our son, Little Dude, was diagnosed at age four. Our daughter, the Pork Lo Maniac, was diagnosed at age 10.
Six WEEKS of age? Can you imagine? Putting aside the benefits of early intervention, can you imagine the difference it would make in a person's parenting?
Over the last couple years as I've been writing about autism for the parenting website Babble.com, I've been trying really hard to include the voices of adults on the spectrum when I write about autism. But I wrote about this new study purely as a parent. Because there is no other way around it: I would have been a much better parent if I'd known that my kids are autistic.
It's hard to admit that I am more patient with Little Dude than I was with his sister at this age. But it's true, and it's something we discuss openly in our house. The Pork Lo Maniac knows that I try to be a better mom every day than I was yesterday. She knows that her daddy and I have always done the best we could, with the information we had.
"It's okay, Mommy. I know you didn't know."
But we are also both sad that I didn't know, because in all honesty her early childhood years would have been happier if we had known.
I wouldn't have told my son to look me in the eye when I'm talking to him.
I wouldn't have told my daughter she just needed to pay attention.
I wouldn't have yelled. That's probably the worst one to admit. Look, I'm not above raising my voice when the noise level in a house with four kids rises to the point where no one can freaking hear me otherwise. But I don't like to yell. Like, really yell. In anger or in frustration. It's not the parent I want to be.
But I yelled. Not often, probably, but certainly more than I am proud of. I would always apologize afterwards, because I certainly wasn't modeling the behavior I wanted them to have.
I was just so frustrated. Nothing worked. Our daughter had so-called temper tantrums that she never grew out of. We got therapy, we got Occupational Therapy, and they helped, but nothing helped enough.
Eventually I felt like we were just arguing all the time. I had asked two different psychiatrists if they thought the PLM might be on the spectrum, because she had a lot of the same "quirks" -- flapping, rocking, lining things up-- as her brother. I was told it was "just" anxiety. Then I was told it was "just" ADHD (primarily inattentive type) and anxiety.
In one week, it all came to a head, and I realized that it all was explained by Asperger Syndrome. The only thing that took me a little longer was trying to figure out what her "narrow, focused interest" was. That's a hallmark of Asperger, and for Little Dude, everything circled back to LEGOs.
And then one day I was in my basement folding the laundry, and I noticed.
All of her shirts.
All of her shirts had either Chinese characters on them, or Japanese flower prints, or something else Asian-themed.
There's a reason I've been calling her the Pork Lo Maniac on this blog. She's been unwaveringly obsessed with all things Asian since she was four.
I called my good friend Sandra, with whom I had been discussing my thoughts about the PLM, Asperger, and a "narrow, focused interest." Sandra is Korean by birth.
"It's you!" I said, laughing and crying at the same time. "It's you! It's Asian people and culture and food and language."
[Important note: The PLM doesn't just love her Auntie Sandra because she's Asian. To the PLM, Asian-ness is just one of Auntie Sandra's many awesome qualities.]
It took another year before we got the full, correct diagnosis. Initially the school psychologist said it was just ADHD and anxiety. We pushed for a full, private evaluation because the school psychiatrist had only done a screening, not a true evaluation that was in line with current standards.
When I shared my thoughts about mourning those years on Facebook, someone asked how we had known that it wasn't just ADHD and anxiety, and here it is:
Social Delay: In fourth grade, we really saw a definite social delay. The things that had made our daughter popular in 2nd grade (creative, expressive, physical play) made her distinctly less popular in 4th grade as the other girls kind of moved away from "pretend play." As the other girls started to spend recess discussing Justin Bieber and clothes from Justice, the PLM still wanted to pretend to be a cat. Socially, she was left in the dust. It's well-known that girls with autism are often able to mimic the other girls, and so their social differences tend to fly under the radar for longer. But when the PLM came home sobbing that the only person who would play with her at recess was her twin sister, it was clear that things were falling apart.
Pragmatic Language Differences: We also really realized that nearly the ENTIRE source of behavior/communication problems in our house were coming from pragmatic language problems. Pragmatic language is the fancy term for the social use of language. It's everything from body language to intonation, from sarcasm to figurative expressions.
It was just like all of a sudden I realized how literally she takes things. And how that affected her relationships, particularly with her sisters. She told her little sister to leave her alone, and didn't understand why that upset her sister. To her, it just meant, I want to be alone right now. To her sister, it meant she didn't LOVE her/LIKE her anymore.
The PLM just didn't see how her words could possibly make her sister feel that way. I think that was really the lightbulb moment. Because despite all the myths about autism, the PLM is actually such an affectionate, empathetic kid. But she just couldn't see how her choice of words affected other people that way. She simply understands those words differently.
With the pragmatic language, I also realized that she could learn an expression, but then couldn't generalize it. The example I always give her teachers is that if you said "it's raining cats and dogs" she would look for the cats and dogs. Once she learned that it was "just an expression," she got it. But then if you said "it's raining buckets" she would look for the buckets. Now that we have explicitly taught her about sarcasm, expressions, etc., she's much more able to identify it on her own.
All The Other Things: There are a lot of other things: echolalia, sensory processing issues, flapping, stimming, chewing, that could be explained by other diagnoses like anxiety and ADHD, but are better explained by Autism Spectrum Disorder. And the reality is that you cannot possibly parse out which things are from the Pork Lo Maniac's anxiety and which things are her ADHD and which things are her Asperger. It's just her, it's just who she is. Having Asperger Syndrome makes it very stressful to navigate the neurotypical world, so it makes her anxious. Her ADHD makes it hard to focus sometimes, and then she feels anxious about it, and then she has a hard time focusing because she more anxious, and then she responds to all that by blocking out the world in an Asperger way.
To us, it doesn't matter which things cause what. We love our daughter exactly the way she is. We support her and give her help in many forms so that she can navigate the world with less stress. The most successful strategies have been nothing about changing her and everything about changing our approach as parents and as educators.
When our school district initially said that the PLM "just" had ADHD and anxiety, we discussed with her whether we should pursue further evaluation. The school would be providing supports either way. But it mattered to our daughter. We kept going.
Once we got the real evaluation process rolling, the entire evaluation was incredibly positive. We learned so much about our daughter, and she learned so much about herself, even before the results were really in.
Ultimately, we celebrated the diagnosis. It was a tremendous relief to our daughter to know, to have a name for why her brain worked differently. To know that she wasn't less than by any stretch of the imagination. As much as there are things about having Asperger that make her life challenging, there are tremendously positive things that come with it.
|My daughter got the cool beaded bracelet on the left--|
the short beaded cords fall exactly into her palm to fidget
with. Guys get a "nuts and bolts" paracord bracelet.
The kit was perfection: a box of confetti and support. It's chock-full of awesome products specially selected for a 10-year-old girl with Asperger Syndrome. Each kit is a little bit different, and then are kits for girls and boys of different ages, but all of them support and celebrate the Asperkid. For example, The Pork Lo Maniac's box came with a really cool fidget-y bracelet, completely unlike the sort of baby-ish things we had found before.
The celebration box helped solidify something really important to our family: Asperger Syndrome isn't something to hide or be ashamed of. It's something to be proud of. The Asperkids t-shirt that came in her kit helped her "come out" to friends--she wore it to a Girl Scout sleep over. The PLM doesn't go around trumpeting her diagnosis or anything, but her close friends know, and accept her the way she is. They know that she tends to take things literally, for example, and they're careful to re-explain things if they see that she's missed something. They understand why sometimes the PLM just has to take a break during parties.
You can read more about the kits here, and here's a video of Jennifer showing some of the things that are included in the kits, and why.